Autism Advocacy Group

Autism Diagnosis Training Course

2012-01-19T15:05:00.003Z

Improved access to diagnosis services in Scotland.

Why is there a need for improved diagnostic services?

The latest statistics for schools in Scotland compendium (Dec. 2010) indicates that 1:104 Scottish children are currently diagnosed with ASD, although head teachers and teachers have reported the figure to be higher due to short fall in diagnosis services. There is a further 1:30 child known to have a speech and communication condition, or social, emotional and behavioural problems, with the strong likelihood that some of these children in fact present with ASD. In total, 1 child in 24 is affected with related developmental and behavioural problems. At the moment, there are no indications of any reduction in the number of affected children. It is generally accepted that the rise in diagnosis is due to a combination of genetic susceptibility and exposure to environment triggers. However no causal agents have yet been identified.

These figures are matched by others conducted elsewhere in the UK. The current UK rate is 1 in 66 children aged 5-11. Evidence of geographical disparity is dramatically illustrated by the recorded rate of ASD in the Orkney Islands. The audit of services for people with ASD identified 91 children with ASD resident in Orkney NHS catchment area, making this the highest rate of autism in Scotland and in the UK, with 1 child in 44 being affected.

The majority of studies suggest a typical male:female diagnostic ratio of 3-4:1, with very few of the girls diagnosed being of the high functioning type. Yet recent publications suggest that women and girls are particularly under-diagnosed because of the relative subtlety of their presentation. This is an observation we have also made with an increasing number of young adult women coming forward seeking help in understanding the nature of their social and developmental difficulties. These young women have essentially fallen through the net of the diagnosis service, because their presentation is not typical of that of high functioning autism in boys. Commonly these women have been diagnosed with an eating disorder when the core of their difficulties is in fact ASD.

Early intensive behavioural interventions have helped many ASD children to acquire the core skills they are lacking and enable them to integrate successfully into the mainstream school system. The lifetime cost of autism has been estimated to exceed £2.4 million per individual.

Based on the above findings Scotland faces a lifetime care bill of between £40.2bn (Scottish figures) and £175bn (if the English prevalence is accepted as a more accurate figure for Scotland).

‘The age of autism’ presents an enormous challenge and ATT-Training is at the forefront of organisations trying to find ways of improving the life and prospects for people with autism.

The diagnosis-training we provide includes the standardised assessments used for making an autism diagnosis, namely, Autism Diagnostic Observation Schedule (ADOS), and Autism Diagnostic Interview Revised (ADI-R), and is complemented by other cognitive and developmental assessments. These include assessments of non-verbal intelligence, language comprehension, expressive communication, attention, behaviour, “autism level”, and overall neurological development across domains. These complementary assessments are beneficial because they assist in assessing the children comprehensively, guiding further intervention and providing a measure of progress throughout an intervention programme.

The course will be delivered over 7 days in total, split into two 2 blocks. The blocks will be run 1 month apart. The reason for this sequential organisation is that the first week will teach all required knowledge for professionals to practice in delivering and scoring across all assessments. The second week will review the work conducted during these practices from video recordings and by discussing any issue encountered. There will be further practice opportunities conducted in the second training week. After completion of this 7 days training, the participants will be invited to administer two ADOS modules and 1 ADI-R interview and rate some videos materials. The course organiser will then review the video materials and scores returned, upon which a course qualification can be obtained. Participants will be invited to meet twice yearly as consensus rating groups in order to insure a consistency in ratings.

Requirement

Typical applicants will have a background in psychology, psychiatry, paediatrics, nursing, speech therapy or similar, and will be currently employed in that capacity either as a clinician, part of a clinical team or part of a research team. Qualifications and employment information must be provided on the course application form. Participants must have access to an ADOS Kit (Hogrefe product code 5580001) for completing the pre-course and post-course assignments and be in a position to video record their sessions for evaluation.

Course dates

Part I: 19th-21th March 2012

Part II: 30th April – 4th May 2012

More information available here

Please call 0131 558 7444 for more information.

UC Davis MIND Institute MARBLES Study receives $10 million NIH grant - UC Davis Health System Newsroom

2011-10-11T12:03:00.000+01:00

UC Davis MIND Institute MARBLES Study receives $10 million NIH grant - UC Davis Health System Newsroom

Blog Site Changed

2011-10-02T10:16:00.005+01:00

Hi everyone- Just to say that I am now mostly posting on the Autism Treatment Trust web site which has a blog section attached. I will try to cover relevant issues of science in autism, advocacy and more, regularly.

Edinburgh Autism Workshop: 20th July 2011 Prof. James Adams.

2011-07-10T08:14:00.003+01:00

Autism Workshop:

Gut impairment, nutritional, & metabolic deficiencies in ASD

Professor James Adams.

Organised by Autism Treatment Trust & Autism Research Institute

Edinburgh 20^th July 2011- At the Royal Botanical Gardens.

Autism Treatment Trust is organizing in conjunction with Autism Research Institute a one-day workshop with Prof. James Adams, Professor at Arizona State University, Director of the Autism/Asperger’s Research Program.

It is an exciting time for Autism. More and more studies are coming out backing up the many anecdotal reports from parents, showing that indeed a biomedical approach to treating autism has benefits. More and more reports are confirming the gut, nutritional and health issues reported. Come along to this one-day workshop to learn more about the outcomes of Prof. James Adams’ s research.

Learn More: Attend Workshops led by Professor James Adams in Edinburgh 20^th July 2011.

Registration continues for workshops set for our special venues in Edinburgh at the Royal Botanical Garden – seating is limited.

Price: £75.00 £60.00 2nd person

Register online Conference Schedule

Download the Printable Brochure

Questions?: Contact Autism Treatment Trust on 0131 558 7444 or by e-mail: admin@autismtrust.org.uk

Financial Aid available for household income under £30,000/year. Please email us for more information on how to apply. autismconferences@gmail.com

James B. Adams, Ph.D., is Professor at Arizona State University, where he directs the Autism/Asperger’s Research Program. He has conducted many research studies on the causes of autism and how to treat it, including studies of nutritional status (vitamins, minerals, essential fatty acids, amino acids), neurotransmitters, glutathione therapy, toxic metals, gastrointestinal abnormalities and treatments, immune problems/treatments, sleep disorders, and seizures. He is the author of more than 20 scientific research papers on autism, and the “Summary of Biomedical Treatments for Autism” published by the Autism Research Institute, He is the President of the Autism Society of Greater Phoenix, and the Co-Leader of the Science Think Tank for the Autism Research Institute. He is the proud father of a son and two daughters; one is a teen-age daughter with autism.

A new study published in the journal Nutrition and Metabolism evaluates the nutritional and metabolic status of 55 children with autism spectrum disorders compared to 44 neurotypical children of similar age and gender. Compared to the neurotypical children, children with autism had significantly worse nutritional and metabolic status, as detailed below. Read the full version of the paper online for free

Highlights of the study:

The findings of low levels of ATP (a major fuel for the body and the brain) suggest that children with autism have impaired mitochondrial function (decreased energy production).
The findings of lower levels of biotin and other vitamins, and biomarkers indicating increased need for vitamins, strongly suggests that vitamin/mineral supplementation would be helpful for most children with autism.
The findings of low levels of reduced glutathione, and increased levels of oxidized glutathione, are consistent with several studies by James et al. Glutathione is a major anti-oxidant, and a major defense against toxic metals/chemicals.
The findings of low levels of NADPH at least partially explains the increased oxidation of glutathione, because NADPH is the co-factor required to convert oxidized glutathione to reduced (active) glutathione.
The finding of low levels of SAM is consistent with several studies by James et al. SAM is the primary methyl donor in the body, and is important for methylation (activation/deactivation/modification) of DNA, RNA, proteins, phospholipids, and neurotransmitters. Uridine, a biomarker of methylation status, was also significantly elevated, which confirms a significant impairment in methylation. ATP is the co-factor needed to convert methionine to SAM, so low levels of ATP likely contributes to the decreased level of SAM.
The finding of very low levels of sulfate replicates several studies by Waring et al. Sulfate is the third most abundant mineral in the body, and sulfation is one of the major ways in which the liver detoxifies chemicals. It appears that children with autism cannot recycle sulfate in their kidneys (partly due to lower levels of ATP), resulting in increased loss of sulfate in the urine, and decreased levels in the body. It appears that most children with autism need substantial sulfate therapy (MSM supplements or Epsom salt baths).
The finding of low levels of ATP, NADH, and NADPH is interesting because all are formed from ribose, and a recent study (Freedenfeld et al) found that ribose therapy and NADH therapy were each able to improve levels of ATP, NADH, NADPH, SAM, and/or ribose.
The findings of low levels of tryptophan, an essential amino acid, suggests that children with autism would have low levels of serotonin (an important neurotransmitter) and melatonin (the hormone that induces sleep), since tryptophan is converted into serotonin and then melatonin. This suggests that tryptophan supplementation may be helpful.
The findings of low level of lithium confirms an earlier study by Adams et al, which found lower levels of lithium in young children with autism and their mothers. Lithium is possibly an essential mineral, and low levels of lithum are associated with a wide range of psychiatric disorders, including schizophrenia and aggressive behavior. This suggests that low levels of lithium supplementation may be helpful.
The lead author of the study, Prof. James Adams of Arizona State University, states that “This extensive study revealed many nutritional and metabolic abnormalities in children with autism. The good news is that they should all be easily treatable with appropriate nutritional supplementation.” This paper is the first of several papers on a large study conducted by Arizona State University to evaluate and treat nutritional and metabolic problems in children with autism by the use of a customized vitamin/mineral supplement. The supplement used in that study has now been commercialized under the brand name Syndion.

The Summary of Biomedical Treatments by Prof. Adams is available for free at http://autism.asu.edu, or at www.autism.com.

Several recent papers by Prof. Adams (and funded by the Autism Research Institute) include the following:

Biochemical Effects of Ribose and NADH Therapy in Children with Autism, Freedenfeld S, Hamada K, Audhya T, Adams JB. Autism Insights, 2011:3 3-13

Traditional and non-traditional treatments for autism spectrum disorder with seizures: an on-line survey, Frye RE, Sreenivasula S., Adams JB, BMC Pediatrics 2011, 11:37.

Gut Flora and Gut Problems – Adams JB, Johansen LJ, Powell LD, Quig D, Rubin RA, Gastrointestinal Flora and Gastrointestinal Status in Children with Autism — Comparisons to Neurotypical Children and Correlation with Autism Severity, BMC Gastroenterology 2011, 11:22 (16 March 2011).

Autism linked to IT hubs?

2011-06-25T14:39:00.008+01:00

Simon Baron-Cohen from Cambridge University has a long-standing interest in demonstrating that Autism Spectrum Conditions (ASC) are more prevalent in populations presenting with high systemizing skills. These are people who like predicting how things function, classifying observations in systems, etc. and who also show less empathy to others. He has focused his work around the issues of male/female brains and has presented autism as being equivalent to an excess maleness. I should clarify for our readers that in fact, this refers to High Functioning Autism (HFA) or Asperger Syndrome (AS) rather than ASC as a whole. In other words, HFA/AS have a lot more systemizing skills (i.e. some sort of scientific skills) together with a less empathic presentation, and this is essentially what the condition is. He came to this conclusion partly because of how AS/ASF people rate in his Empathy/ Systemizing questionnaire (tests available online, look for Systemizing Quotient and Empathy Quotient). The trouble is that empathy is essentially assessed within a social context and this will confound how AS/HFA people will respond to the questionnaire (and hence be rated). They do have impairment in socialization, in accordance with their diagnosis, but at no point did Simon Baron-Cohen tease out the empathy from the socialization aspect in his evaluations. AS/HFA people have low empathy quotients because they tend to dislike social settings, not primarily because of their low empathy, i.e. extra maleness according to Simon Baron-Cohen. This means, no accurate conclusion can in fact be drawn on the empathic skills (or excess maleness) of AS/HFA people based on this sort of work.

However, this went on for some years with studies after studies, digging deeper and deeper into this Autism High Functioning/ Excess maleness question, moving on to molecular /genetic issues and linking this excess maleness to excess testosterone. He went as far as proposing an antenatal screen based on the mother’s testosterone levels, something he later regretted after facing a number of criticisms. High testosterone levels are related to a number of NON-Autistic personality traits, and are not specific or even representative of autism as a whole, something I discussed here. Simon Baron-Cohen also proposed that autism is on the increase because people with high systemizing brains, IT people, scientists are more able to meet nowadays, thanks to the Internet, marry and have children and that as a consequence of these novel mating trends (assorting mating theory), we have the high rates of autism we see today across the western world.

So, it comes as no surprise to see his latest research in the Netherlands, looking at autism rates in three towns of comparable sizes, with one being presented as being the IT hub of the country. The study can be found here.

What are the main findings of this study?

“The prevalence estimates of ASC in Eindhoven [the IT Hub] was 229 per 10,000, signiﬁcantly higher than in Haarlem (84 per 10,000), and Utrecht (57 per 10,000), whilst the prevalence for the control conditions were similar in all regions.”

This is equivalent to 1 child in 44 in Eindhoven, 1 in 119 in Haarlem and 1 in 175 in Utrecht.

What was the methodology used?

“The schools were asked to provide a count of the total number of children in the school with any of these developmental conditions, speciﬁed per diagnostic subtype and by age and gender. The schools were instructed to only include formal diagnoses in their count (i.e. diagnoses made by a clinical professional, e.g. a clinical psychologist or psychiatrist).”

“Since both attention-deﬁcit hyperactivity disorder (ADHD) and dyspraxia are also developmental conditions and have a similar diagnostic process to ASC, the number of cases with a formal diagnosis of ADHD and dyspraxia were also examined as control conditions.”

“Of the 659 schools invited, 369 schools (56.0%) took part, providing diagnostic information on 62,505 children. Response in the Eindhoven region was higher (75.5%) than in the Haarlem (49.8%) and Utrecht regions (45.7%).”

“Negative binomial regression was used to investigate the multivariable effects of region and school type, with an additional model to investigate the differences between boys and girls.”

For clarification, we do not see actual numbers but only estimated numbers.

The conclusions reached by the authors are:

“The aim of this study was to test a prediction from the hyper-systemizing theory (Baron-Cohen 2006, 2008) that ASC are more common among children in areas where individuals who are talented systemizers are attracted to work and raise a family. Eindhoven is a candidate region of this kind being the hub for IT and technology in the Netherlands.”

“As predicted, this estimate of the prevalence of school-aged children with a formal ASC diagnosis was signiﬁcantly higher in the Eindhoven region, compared to the Haarlem and Utrecht region. This is consistent with the idea that strong systemizing in parents could be a risk factor for having a child with ASC, although there are other factors that could relate to the increased prevalence in the Eindhoven region.”

The authors have listed a few possible confounding factors: Possible higher awareness of ASC in Eindhoven (parents and professionals), over diagnosis services in Eindhoven or under diagnosis in Utrecht. Interestingly, it is stated in the discussion: “If the responding schools are representative of the comparable schools in the region, the difference in response should not have confounded our findings.” If, indeed (see below).

What do you think of this?

Let me tell you what I think of this study.

1-First of all, why have the authors not confirmed that parents are indeed in IT technology, if they want to link IT parents to ASD? It would be an obvious factor to capture in their evaluation, and one that is crucial to their main conclusion, I would have thought.

2-Secondly, there are only superficial explanations as to why there is such a high discrepancy in the schools response rates across these three cities. Are there more special needs schools than the responding ones from Eindhoven, or are the numbers the same? No mention of this. What are the actual ages of the kids covered by the survey in the three towns? Why is there so little information available to define these 3 sample groups? I would guess, it is because they have actually limited information on the children, because of the way the population was screened. We must stress that the main potential explanation to a difference in rates is that the populations have been captured differently- and this has to be fully addressed, with fuller transparency in order to proceed towards any kind of conclusion.

3-Thirdly, are dyspraxia and ADHD really a suitable validation to show that the populations have been captured in similar representative manners? – In my opinion, no they aren’t and the reason is that unlike what the authors claim, Dyspraxia (at least in the UK, and I doubt very much it is different elsewhere) is essentially NOT diagnosed even when the kids have clear motor planning issues. As for ADHD, we also have a huge number of children in schools, who present with hyperactivity that are simply seen as being difficult and challenging without receiving any proper diagnosis. I would estimate that the figures given are well under the actual values for Dyspraxia and ADHD. In other words they are not accurate estimations of numbers and therefore cannot be used as reference points.

4- Fourthly, what else is happening on Eindhoven? A quick look in Wikipedia gives us a good account of the actual high industrial development.

“Philips’ presence is probably the largest single contributing factor to the major growth of Eindhoven in the 20th century. It attracted and spun off many hi-tech companies, making Eindhoven a major technology and industrial hub. In 2005, a full third of the total amount of money spent on research in the Netherlands was spent in or around Eindhoven. A quarter of the jobs in the region are in technology and ICT, with companies such as FEI Company (once Philips Electron Optics), NXP Semiconductors (formerly Philips Semiconductors), ASML, Toolex, Simac, CIBER, Neways, Atos Origin and the aforementioned Philips and DAF.”

“Eindhoven has long been a centre of cooperation between research institutes and industry. This tradition started with Philips (the NatLab was a physical expression of this) and has since expanded to large cooperative networks.”

Do these industries relate in any other ways to the higher Autism rate? This possibility has not been explored in the discussion section. If a quarter of the total work force causes a near 4 fold increase in autism rate compared to the population of Utrecht, that would suggest a 16 fold increase in the likeliness to have children with autism in the IT profession. Surely something that would have been picked up before, other prevalence studies have not found any correlation between autism and social status.

5- Lastly, and I will stop it here, let’s look at what is happening in Utrecht, the town that was found to have the lowest rate of ASC. Again, a look at wikipedia gives a good account of the city development and this is what is found, as you will see there is hardly any industry at all. It is interesting to see that the university is the largest in the country, one would have thought, according to the systematizing brain theory, that it would have foster a large concentration of systemazing brains, apparently not.

The town looks so peaceful that I could not resist including a photo of the Dom Tower above.

“Utrecht University, the largest university of the Netherlands, as well as several other institutes for higher education.

“The economy of Utrecht depends for a large part on the several large institutions located in the city. Production industry has a relatively small influence in Utrecht. Rabobank, a large bank, has its headquarters in Utrecht.”

“Utrecht is the centre of the Dutch railroad network and the location of the head office of the Nederlandse Spoorwegen (Dutch Railways). NS’s former head office ‘De Inktpot’ in Utrecht is the largest brick building in the Netherlands (the “UFO” featured on its facade stems from an art program in 2000). The building is currently used by ProRail.”

Railway industry? Could it be another niche of high concentration of AS/HFA, known to like railways, trains, time schedules… well apparently not. (That was a joke BTW).

Can anyone tell me how the data presented in this paper substantiates a link between Parental IT Hub/ high systemazing brains and Autism?

I appreciate the authors observe some caution in the presentation of their data, none the less, wouldn’t it have been wiser to have more conclusive findings to present for a publication? What are those people living in Eindhoven supposed to make of the news reports that accompanied the publication? And what are all those IT/ scientists parents also supposed to think? Are they really at higher risk to have children with an autism spectrum conditions?

And aren’t the implications as far as the whole spectrum is concerned somehow insulting to all those parents who have reported another side of autism, the regressive autism, with the novel development of severe clinical issues alongside the behavioural changes that characterise autism? Presenting autism as a condition resulting from a specific brain-wiring difference trivialises the distress experienced by affected individuals and their family.

References:

Baron-Cohen, S, & Wheelwright, S, (2004) The Empathy Quotient (EQ). An investigation of adults with Asperger Syndrome or High Functioning Autism, and normal sex differences. Journal of Autism and Developmental Disorders, 34, 163-175.

Baron-Cohen (2003). The Essential Difference: The Truth About the Male and Female Brain. Basic Books, Perseus Books Group.

NEW ATT web site

2011-05-26T17:09:00.005+01:00

Building a new web site for ATT- more interactive, better video viewing, blogging options, search function, categories and more.

Check it here to view the site!

I like particularly the video posts look. e.g. Asperger misdiagnosed as mental health disorder.

And drop a comment or suggestions if you feel like it!

ADHD- what are the answers?

2011-03-20T09:56:00.038Z

ADHD is a condition characterized by three main core features; hyperactivity, impulsivity, and attention problems. It is estimated that it affects between 3-5% of children of school age, though other estimates suggest this could be as high as 10% of the school population (Rowland et al. 2002). Fewer children of Hispanic American and African American backgrounds seem to have received a diagnosis of ADHD compared to White Americans, however it is very possibly due to increased poverty and reduced insurance coverage and possibly other cultural issues rather than a true difference with respect to ethnicity. The condition not only affects the US, but also most western countries (e.g. UK, NICE guidelines 2008, rest of Europe) and North Africa. ADHD rates have been found to dramatically increase over the last two decades and the condition is now the most commonly diagnosed in school age children (e.g Mandell et al. 2005; and more recent reports).

ADHD is often seen in Autism Spectrum Disorders (ASD). And like ADHD, ASD rates have also dramatically increased in the last 2 decades. The Scottish governmental data of children with additional needs in schools (main stream and special eduction) somehow does not seem to follow the diagnosis of ADHD. However it follows the diagnosis of ASD, and other loosely defined categories, Speech and Communication Disorder and Social Emotional and Behavioural Disorder, which almost certainly include undiagnosed ADHD and ASD.

The data shows that In 2010, there were 6,506 children with an Autism Spectrum Disorder (ASD) in schools (primary, secondary, special education combined). This is just under 1% of the school population. There were also 7,200 children with speech or communication disorder and a further 14,738 children with social, emotional or behavioural difficulties; in total, 28,444 children affected with related conditions, or 4.2% of the school population. Importantly, special education teachers and head teachers have reported children presenting with autism in schools who are still not diagnosed today. These two additional speech and behavioural categories almost certainly include children with an ASD and/or ADHD. For information, 9.3% of the total school population is classified as having additional needs.

In other words, not good news.

So what options do we have in response to ADHD, whether this is in association with Autism or not?

The most common answer is Ritalin-like medication. A very large proportion of children diagnosed with the condition receives medication. Children as young as 4 years old are being prescribed drugs. This causes a major concerns both in the US and in the UK.

Simple interventions however do exist. Nutrition, particularly with good supplementation of Omega-3 (Richardson et al. 2006), but also dietary modification with exclusion of foods the child is sensitive to (Pellser et al. 2011) have been found to be effective.

It is worth highlighting this latest Lancet study- Please for a full view of the abstract follow the link here.

The Lancet, Volume 377, Issue 9764, Pages 494 - 503, 5 February 2011

The Pelsser et al study is quite extraordinary because the improvements of ADHD symptoms seen in 64% of the children are very significant (ranging from 35-65% reduction of ratings) and the reintroduction of foods led to relapse of behaviour. There were also improvements in oppositional defiant disorder symptoms.

The study used a number of ADHD rating scales based on parents, teachers (non-blinded) ratings or blinded paediatrician ratings. The strengths are multiple ratings, large sample size (n=50) with matched controls (n=50), overall heterogeneous population representative of the general population of children with ADHD.

What it is important to know is that the restricted diet the children are placed on is not designed based on any allergy test- it is a standard diet that consists of a few hypoallergenic foods, rice, meat, vegetables, pears and water, completed with fruits, potatoes and wheat. The challenge test conducted after 5 weeks on the respondent children consists of either 3 high IgG foods or 3 low IgG foods. Whether or not the foods were of low IgG or high IgG response, there was deterioration of ADHD symptoms upon challenge.

I have been in touch with the Lead author, Dr Lidy Pelsser who clarified that the low Ig G group means Zero IgG level- if this is the case, the group’s conclusions that IgG levels are irrelevant to ADHD symptoms is correct. In my experience of allergy tests though, at least with regard to IgE levels, a low level does not equal to zero or not detectable. A low level is a low detectable level and this can have biological implications.

I have also contacted the lab ImuPro in Australia to get some clarifications with regard to their rating of low IgG levels. If Low IgG level are detectable low level, the conclusion on potential relevance of IgG testing would potentially be quite different, until it is proven that response to foods with No IgG at all (i.e. not detectable as opposed to low) also lead to return of ADHD symptoms. The lab confirms that low levels of IgG does not mean undetectable IgG levels. They also agreed that without having any indication as to which foods were introduced in the challenge phase and having not tested Zero IgG food, it is rather puzzling that the authors concluded IgG levels are irrelevant to ADHD symptoms. I am not saying they are, but that the data presented cannot help us to decipher one way or another.

These methodology details are however not very important in the light of the very good outcomes of the restriction diet: see figure 2 of the paper.

Figure legend: Figure 2: Distribution of behaviour scores at start and end of the first phase. Scores according to (A) masked paediatrician ratings and (B) unmasked teacher ratings. To facilitate comparison between the various measures, scores have been standardised as percentages of the maximum score per measure. Bars=maximum and minimum score. Shaded boxes=interquartile range. Horizontal bars within boxes=median. ADHD=attention-defi cit hyperactivity disorder. ARSall=ADHD rating scale total score (maximum score 54). ARSatt=ADHD rating scale inattention score (maximum score 27). ARShyp=ADHD rating scale hyperactivity and impulsivity score (maximum score 27). ODD=oppositional defi ant disorder (maximum score 8).

The authors conclude that a trial diet for a 5-week period should be proposed to every child with ADHD, followed by a challenge procedure to define which food the child would react to.

Autism Shock tactics EQUAL Torture

2011-03-13T09:06:00.020Z

Yesterday, I had the surprise to see an article on Matthew Israel's shock therapy being discussed in the Weekend magazine of the UK newspaper, the Guardian.

I enclose the article here below adding the scanned photos taken by Rick Friedman as many of them cannot be found in the online version of the article.

It is hopeful to see that this issue continues to be covered by the press. One day, I am certain, this school will be closed, and I hope this day will come soon. Of note, "The entrance... a riot of bright colours and surreal designs" sharply contrasts with the overcrowded back yard fenced playground. It is a shame the photographer did not show the other side more convincingly, none the less the article shows that the answer to the question treatment or torture is the latter.

Shock tactics: Treatment or torture?

Ed Pilkington visits the Boston school that uses electric shock as a treatment for children and adults with severe autism or emotional problems. Photographs: Rick Friedman

The entrance to the Judge Rotenberg Centre, in a suburb of Boston, is a riot of bright colours and surreal designs. The receptionist greets visitors from a deep purple chair in front of yellow and pink neon panels. Corridors are lit by elaborate chandeliers and lined with 6ft models of Bugs Bunny and Daffy Duck. There is a meeting space, called the Whimsy Room, that has a purple shag-pile carpet, and pink, mauve and lime-green walls hung with carnival masks.

But the decor is far from the most unusual aspect of this establishment. It is the only school in the US, perhaps the world, that uses pain as a treatment for children and adults with severe autism or emotional problems.

Residents at the school carry small rucksacks, trailing wires that lead under their clothes and end in electrodes attached to their skin. Each rucksack contains a box, operated by staff members via remote control. When a button on the controller is pressed, a signal is sent generating a charge that delivers an electric shock to the skin. The teachers regularly inflict electric shocks on students, some as young as eight, zapping them for up to two seconds on their legs, arms or stomach.

Ever since it was founded, 40 years ago, the school has been the subject of fierce controversy. Critics say the use of pain on society's most vulnerable members is a disgrace that should not be tolerated in any country. But supporters of the school, including several parents, say its practice of "aversive therapy" has improved lives, and in some cases saved their children from self-induced injury or even death.

The school's founder, Matthew Israel, is every bit as unconventional as the environment he has created. A short, quietly-spoken man with a mop of tightly-curled hair, he first came across the study of punishment and reward as an undergraduate psychology student at Harvard in the 1950s. He signed up for a course by the famous behaviourist BF Skinner, who taught his pupils that, just as pigeons or rats could be trained to change their habits in laboratory experiments, so could human beings.

Skinner had written a novel called Walden Two, in which he envisaged a fictitious community of 1,000 people engineered to produce the happiest and most efficient society. Every activity in the community is shared, from child rearing to cooking and manual labour. Positive emotions are rewarded and negative ones discouraged; meanwhile, children are given rigorous ethical training to turn them into model citizens.

Israel read the novel and was hooked. "Skinner believed you could use intelligent planning to make people healthy, happy and creative. He argued that it should be possible to develop a scientific approach to behaviour. That was very captivating to me."

After completing a doctorate in psychology at Harvard, Israel decided to make Skinner's imagined world a reality. He set up his own behaviouralist communes in the 1960s, along the lines of Walden Two. "They didn't work well," he says. "People had different ideas."

But the failed experiments got him thinking about children. There was a three-year-old girl at one of his communes who was spoiled and demanding. He found that, with the application of what Israel calls "mild punishments", she could be transformed into a charming child.

It was here that Israel parted company with Skinner, who explicitly states in Walden Two that punishment is not allowed. But once Israel had discovered what he believed to be its transformative potential, there was no holding him back. He devised a new regime for children with special needs, including those on the autistic spectrum. By mixing positive rewards for good behaviour with punishment for bad, he believed he could steer children away from self-harming or aggressive habits.

He started a school in 1971, initially in Rhode Island and then outside Boston. In the early years, he used improvised punishments: spanking with spatulas, pinching (he calls it "muscle squeezing") and dousing kids with a water spray. In the late 1980s, he adopted a more structured approach, deploying a shock machine that had been built by the parents of an autistic girl. The problem was, the charge generated by the machine was judged too weak to change the children's behaviour. On a single day, one of the children in Israel's school, Brandon, then 12, was given no fewer than 5,000 shocks, without success.

So Israel decided to develop his own, more powerful, pain machine. He invented the GED, or Graduated Electronic Decelerator. It is a basic electricity generator that puts out a 15 to 30 milliamp shock, lasting for two seconds. Later, Israel decided that an even more powerful machine was called for to treat the severest of cases, and designed the GED-4, which has three times the electrical charge of the basic GED.

These devices are not to be confused with ECT, or electroconvulsive therapy, where electricity is pulsed through the brain, often as a treatment for depression. Israel's shocks are applied to the skin as a means of discouraging bad behaviour, rather than changing a person's mental state.

Students are given shocks when they behave badly – they may be disruptive in class, say, or threaten staff. However, Israel insists, most of them make the connection between problem behaviour and pain fairly quickly, and stop acting up within weeks. He does concede that some on the autistic spectrum may need to keep the GED long term. For them, he says, the machine is just like wearing "glasses or hearing aids".

Israel is fully aware of the controversial nature of what he does. He is, he says, at the centre of a "political firestorm". "Any humane person wants to avoid punishment," he says. "Most professionals don't want to touch it, even though they know it's a very effective treatment."

But he insists the shocks feel no worse than a two-second bee sting. And that the alternatives are far worse. Students can be so dangerous to themselves or others they can threaten lives, he says, and more conventional care centres are often ill-equipped to deal with them. They end up either expelled, or heavily doped with psychotropic drugs.

Students are given shocks when they behave badly. Matthew Israel says most of them make the connection between problem behaviour and pain fairly quickly. Photograph: Rick Friedman

By contrast, Israel takes pride in turning nobody away, however severe their condition. "Some of our students have been expelled from 20 or more programmes, and we take all of our students off the drugs they are on when they come here. Compare that with skin shocks that have no side effects and no long-term damage," he says.

Israel shows me a video featuring some of the most severely autistic students before and after they are given electric shocks. It is deeply disturbing. Here is Janine screaming and banging her head on the wall. Israel's voice tells us she used to slap herself and pull out her own hair, 24 hours a day. "Once the GED was introduced into Janine's programme, she became much calmer and happier." The next sequence shows Janine going out to lunch with staff, her self-abusive habits seemingly under control and her hair grown back.

Here is Brandon, the boy who was shocked 5,000 times in one day. Israel tells us he used to vomit up his food, starving himself to 52lb (24kg). Over footage of Brandon vomiting and spitting, he says, "We found there was no medical solution to his problems. The only thing that saved his life was a remote control skin shock device."

When the video ends, Israel sits back in his chair and says, "Most people aren't aware of the severity of the problems some individuals have. We have a student who has pulled out 11 of his adult teeth by himself. A young woman hit her head so hard with her knee she detached her retinas. There's a boy who pushed his hands way down his throat and ripped up parts of his oesophagus. Once you've seen that sort of self-abuse, why wouldn't you want to try a treatment, even though it's controversial?"

He then takes me to the Yellow Brick Road, the positive reward area of the school where children who have fulfilled their contract with their carers are treated to the land of Oz. There are full-sized models of the Tin Man, Scarecrow and the Lion, a Crystal Forest of trees with cut-glass leaves, and an animatronic Good Witch Of The West into which students can insert a reward token and trigger a recorded message: "Hello. Have you been a good witch or a bad witch? You must be good, because you are about to receive a wonderful reward in the Reward Store."

The store looks like a chintzy shopping mall. Here students can exchange tokens for CDs, clothes, cosmetics, jewellery, toys and trinkets. Alternatively, they can spend their rewards in an arcade with a pool table and video games, which is where we find Mike playing computer baseball. He is carrying the GED on his back and has electrodes on his waist. Israel tells me that Mike, 20, is on the autistic spectrum and has been at the school for two years. When he arrived, he would refuse to get out of bed and would lash out at staff. "He was kept separate from other students because he was dangerous. Now he's blossoming. This is his first year off medications since he was six."

I ask Mike, in Israel's presence, what it feels like to be zapped with the GED.

"Electric shock."

Does it hurt? He nods.

How has it changed his life?

"Better."

Is he scared of it?

"A little bit."

We return to Israel's office and he ushers in Louisa Goldberg. She is the mother of Andrew, 30, who was born brain damaged from oxygen deprivation and is, she says, an "adult-sized toddler".

At nine, Andrew was put in a residential care home because his parents were worn out by caring for him around the clock. "Our younger son was being beaten up regularly. We were all getting our hair pulled and being bitten. We couldn't keep him safe."

Andrew stayed for several years at the home, but as a teenager grew more and more aggressive. He was put on psychotropic drugs to calm him down. He began sleeping through day and night. "He would sit and drool. He was a zombie, basically. It was just no life for him."

Eventually, Goldberg says, the care home told her it could no longer look after Andrew. They left him in the parking lot of a local hospital. Which is how she came to bring him to Israel's school.

Andrew was put on the GED, starting with an average of 17 shocks a day. He has been at the school for 11 years, and still wears the device. How does she come to accept the infliction of pain on her own son?

"We realise it doesn't sound so nice," she says. "People refer to it as torture, but as a parent the real torture for us was seeing Andrew going nowhere. Sitting there like a zombie on medication. It's given our child back his life."

Last June, the human rights group Disability Rights International released a coruscating report that sought to debunk Israel's case for "aversive treatment". The use of electric shocks was not a treatment at all, it said, but torture.

On the back of the report, the then UN special rapporteur on torture, Manfred Nowak, was asked by ABC television for his assessment of the regime. Did it amount to torture? "Yes. I have no doubts about it," Nowak replied. "It is inflicted in a situation where a victim is powerless. And, I mean, a child being subjected to electric shocks, how much more powerless can you be?" The US Justice department is currently investigating the centre under disability discrimination laws.

Put at its most simple, the argument made against the school by its opponents is that it uses public money to cause pain to vulnerable children. The money is by no means insignificant. There are 225 students at the centre, drawn from seven states across America, with state or federal agencies paying about $220,000 a year per child. That gives Israel an annual turnover of almost $50m, which he uses to pay the 900 staff and keep the premises in their sparkling condition, as well as spending huge sums on lobbying. Last year, he paid Rudy Giuliani's law firm $100,000 to lobby against a bill in Congress that might have outlawed the use of electric shocks.

Two-thirds of the school's students are under 21, and 97 of them wear the GED backpacks. This figure might be higher were it not for a court case in the 1980s – the result of one of the most serious attempts by opponents to have the school closed down. Ultimately, a Massachusetts judge, Ernest Rotenberg, ruled it could stay open, with the proviso that not only parents but also the courts would have to approve every child before he or she was subjected to electric shocks. Israel renamed the school the Judge Rotenberg Centre in his honour.

Of those 97 students, some are emotionally disturbed – they may be from difficult backgrounds, have attention deficit disorder, or just be unruly; many are children who could quite easily be cared for, critics say, with the use of more conventional, positive therapies. Others have developmental issues – they may, like Andrew Goldberg, have had problems at birth or be at the severe end of the autistic spectrum.

Brandon is the most extreme case. Though he's been living at the school since 1989, he's still shocked on average 33 times a week. There are five other students at the school who, according to the Massachusetts authorities, are shocked on average more than 10 times each a week, and all of them have been in the centre for at least eight years. Janine, 40, has been a resident for more than 25 years and still wears the GED 24 hours a day.

A recent inspection by the Massachusetts Department of Developmental Services questioned this long-term use of electric shocks, and objected to their application for minor infringements such as spilling drinks, refusing orders and picking food up from the floor. Rather pointedly, its report concluded: "Staff need to keep the floor clean."

Even more controversially, Israel still practises a treatment he calls Behaviour Rehearsal Lessons, or BRLs. He created this technique for students considered to have a behavioural problem so potentially dangerous it had to be prevented in advance. Israel uses the example of someone who has the habit of jumping out of fast-moving cars. "You don't even want him to do it once," he says.

The student is placed in a chair, often restrained with straps. Then, for up to 10 minutes at a time, they are ordered to carry out precisely the behaviour they have been told not to do. If, say, they have the habit of slapping themselves on the head, they are ordered to do so. If they try to get away, they are zapped with the stronger GED-4 shock machine. But if they follow orders, and slap themselves, they are zapped even more frequently. The process is repeated until they sit motionless in the chair for a full 10 minutes.

Hilary Cook, now 22, who spent three years at the school until 2009, remembers vividly being put on BRLs. "They would rush in unannounced and prompt me to do behaviours that were inappropriate, then shock me for doing them. That put me in a constant state of fear, because it could happen at any moment."

The system is open to abuse. The school has 29 residential properties in which students sleep at night and, in August 2007, a call came in to one of them to report that two students had misbehaved earlier in the evening and needed to be shocked. It was 2am, but the staff located the two students, aged 16 and 19, and began zapping them in their sleep. The boys awoke and protested that they had done nothing wrong, but the shocks continued. Over a three-hour period, one boy was shocked 77 times, the other 29. It later transpired that the initial call had been a hoax.

Such incidents have, of course, generated much negative publicity. But for Laurie Ahern of Disability Rights International, the core objection to the school is simple. "It's horrible that children and adults with disabilities are still, in 2011, being tortured through the use of electricity. We wouldn't tolerate that in Guantánamo or Abu Ghraib. We don't do it in domestic prisons any more. If your neighbour used a Taser on their children to get them to behave, you'd have them arrested. They'd be picked up even if they did it to their dog."

Carol Povey, of the UK's National Autistic Society, agrees: "Those purporting to help people using electric shocks demonstrate an appalling disregard for the individual's human rights. It is essential to properly understand and manage challenging behaviour, rather than attempting to simply control or prevent it through force. The right support at the right time can make an enormous difference."

Israel refused to let me experience the electric shocks first hand, saying there had been too many "sensationalist" accounts. Instead, Hilary Cook describes them for me: "They tell parents it feels like a bee sting, but what it really feels like is intense pain that lasts for several seconds. I was afraid, waiting for the shocks to come."

Since leaving the school in 2009, she has been on a positive therapeutic programme that has taught her to cope with severe emotional problems. "Electric shocks only work as long as you are receiving them. They don't teach you how to change your life."

One parent, who asked to remain anonymous, has a 26-year-old son who was at the school for seven years until he left last year. She says she liked the look of the school and its non-medication policy, but wasn't aware of its "dark side".

"They said it was like a bee sting, but I've seen my son being given shocks so powerful his limbs shook. He was being shocked up to 20 times a day. It was cruel. It was inhumane. I pray to God to forgive me for putting my son through that."

BBC4 Medical Matters: Epilepsy Programme

2011-03-03T10:38:00.002Z

I would highly recommend anyone who deals with epilepsy to listen to the recent BBC Medical Maters Programme that was aired on the 22nd of Feb 2011.

The Podcast can be downloaded here:

Dr Mark Porter discusses epilepsy and its treatment. Advances in brain scanning and surgery mean an increasing number of people can be cured with an operation. However, surgery is not an option for the majority. Mark talks to epilepsy specialists about drug treatments, and a special high-fat diet, known as the ketogenic diet, which helps to reduce the severity of the condition in some children.

Scotland and Disability: Governmental welfare changes and the issues of power of attorney vs. guardianship.

2011-01-24T17:13:00.009Z

PLEASE PENCIL IN YOUR DIARY THIS VERY IMPORTANT DATE: SAT 12^TH OF MARCH 2-5PM!

The Autism Treatment Trust and FAIR are holding a forum for parents and carers of children and young people with learning disabilities or autism. There will be two presentations and the opportunity to talk to people from a number of specialist support agencies.

Margaret Hurcombe of FAIR will talk about the government’s proposed changes to the welfare system that will potentially affect every child and adult with learning disabilities in Edinburgh, their families and their carers.

Alan Davies, from McCash and Hunter, Solicitors of Perth, will give a presentation on ‘Attorney Versus Guardianship’

The forum will be held on Saturday 12^th March 2011 between 2-5pm at FAIR/ Enable.

We have invited a number of other related organisations, charities and special need schools to present and discuss their services. Each organisation will have a table/stand and you can freely discuss the issues that are relevant to your situation with any of these associations. The event is free, starting at 2pm, the presentations are due to commence at 3pm. Coffee, Tea etc available at the Enable cafe.

It is a drop in format, no booking is required, however it would help our organisation to know if you are interested to attend with your family. Please contact Mariana at the Autism Treatment Trust by e-mail: admin@autismtrust.org.uk or phone 0131 558 7444.

Hope to see you there!

Autism Treatment Trust Respite play project

2010-11-29T12:09:00.006Z

The Autism Treatment Trust is initiating a respite play project to assist our Edinburgh-based families.

It’s a great project! Let me tell you a little more about what this project is about.

The project aims to relief parents from some of the pressure they commonly experience. We propose to spend some time with your child, or his/her siblings or both and assist in stimulating some activities. These activities will be selected by yourself. For example, our volunteers can assist your child to participate with his siblings in some cookery or art activity. The respite would take place at your home or at the ATT clinic, but importantly, one of the parents will remain on site. We can also assist in providing one extra support to your home programme for those families who are running a home programme; this will be entirely run under your own direction.

The volunteers have been CRB checked. Whilst undertaking such control tends to be daunting for parents to do, we are glad that our charity can assist in this, as it is for us free to run and very straightforward.

The volunteers we have are fantastic- for one, they have all postgraduate degrees in areas that are very relevant to autism, the majority being a Master in Psychology. And secondly, they have worked professionally in educational settings (nursery nurses, social worker assisting families of children with autism) which have given them knowledge of children and autism. But most of all, they are young, enthusiastic and very supportive. The volunteers are following further training in verbal behaviour, and natural environment teaching, however, they will not be working as a tutor, unless it is under your own home programme directions. They are simply genuinely informed and much intended people.

There is no cost involved- simply our volunteers want to get more experience of being with people with autism, whilst we as a charity, hope to potentially build this support to assist yet further families. We are all together with autism!

We hope this will be of some help!

Towards an Autism Strategy for Scotland

2010-11-26T17:16:00.002Z

Towards an Autism Strategy for Scotland

The Scottish Government has been working to make things better for people who have autism. They want everyone who has autism to be accepted by their own community. They want people with autism to have meaningful and satisfying lives.

A lot of work has been done, but now the Scottish Government want to know what you think about their plans for the future.

Have your say

Now the Scottish Government wants to know what you think about their plans.

You can tell the Scottish Government what you think by answering the questions at the end and sending them by email to:

peter.kelly@scotland.gsi.gov.uk

or by post to
Peter Kelly
Scottish Government
Care & Support Team
Adult Care & Support Division
Are 2ER
St Andrew’s House
Regent Road
Edinburgh EH1 3DG

If you have any questions contact Peter Kelly on 0131 244 2249.

Send your answers back by Thursday 9 December 2010.

The form on which you may want to write in your comment can be found here:

Video Autism Rights Project/ Changing attitude towards autism, one person at a time

2010-07-06T23:07:00.002+01:00

Click here for Video link

Attitudes towards autism

Our attitude towards autism and disability in general can have tremendous impact on the quality of the life of autistic people and their family.

The most commonly encountered attitudes seen are discomfort and rejection, making it invisible. The reasons for this may be very diverse, but are likely entrenched in our deepest evolutionary make-up; our primeval chance for survival in the early environments in which our species evolved was to socialise which implies a rejection of people who could compromise the chances of social survival, i.e. the disabled, the sick, the elderly, the outsiders. This rejection is unlikely to result from our education, because it can be seen even in very young neuro-typical children, it can be changed through culture and education. This rejection translates into various forms of discrimination. This can cause distress to people who are different and their family, and may be resulting in further isolation and a sense of powerlessness.

Attitudes can be modulated

The knowledge we have gained in recent years of autism, thanks particularly to growing numbers of reports made by individuals with autism, their families and advocates, have helped the general population to understand this condition better. Behaviours, which were incomprehensible, such as sudden bursts of distress, various forms of repetitive behaviour, misunderstanding of people’s intentions, or alternative learning processes, are now becoming understandable.

There is no unique way of learning, seeing the world, interacting with the environment and people. Whether autism comes with positive attributes or with challenging features is not the issue. What matter is instead that people presenting with differences in behavior get a better chance to form successful relationships with their community. A supportive community will have incredible powerful benefits to everyone involved, not just to the autistic people and their family but also the community itself. Changing attitude is possible with a better understanding of people and a better appreciation that assisting each others within a community will bring strength and greater unity to the group.

Looking forward

Being sincerely positive about autism helps reducing stress and likeliness of depression, helps communication, helps inclusion. A sincere attitude of acceptance could take any form, from being accepting and respectful of the person with autism, treating him or her with equal rights as anyone else, to proactively assisting individuals and their family, or to promoting a better inclusion.

Video Autism Acceptance Project

If you are a parent or a friend of someone with autism, please do assist us in our aims to record and share your own experiences of how autism is perceived in your community, how the response of others will impact on your life, both negatively and positively. Ideally, we would seek to receive a range of video material that would illustrate the situations you have been in, or that would explain situations that have occurred in your community. We would encourage anyone from any country to contribute, no matter how short or technically simple your project is, we want to hear about your stories. Cultural differences towards disability are huge; please share your own perceptive on this issue, as everyone's experience will be valuable. If you need assistance with your project, please contact us for support and suggestions. We feel this type of reporting will be valuable to Autism and autistic people.

Project 1: Scotland- Autism and public transport.

In Scotland, if you have autism and receive the higher/middle rate of the care component or the higher rate of mobility component of the Disability Living Allowance, you are eligible to have access to a Free Bus Travel card. This means that travel for you and one family member who is assisting you is free.

However, what happens if you lose you Free Bus travell card? How are you going to be perceived by your community?

Video link

Autism and the environment

2010-07-04T10:14:00.017+01:00

This post was stimulated by an exchange on Autism Gadfly in which I was asked to state my position on the vaccine issues in autism.

My answer was that I don’t like talking about the vaccine issues, because at the moment it is an unresolved, controversial and highly polarised matter, which I cannot contribute to or resolve. It is an issue that has, in part due to the inappropriate ways in which it has been dealt with, distracted our attention. However because I was asked to state my position and because yes, in my views, vaccination might well be implicated in some cases of autism, I will none the less discuss below this controversial matter.

First point I would like to make is that Autism Spectrum Disorders (ASD), regressive autism, Pervasive Developmental Disorder-Not otherwise Specified (PDD-NOS) are conditions that are on the increase starting from about 1988. I believe this is a real increase that is not just related to a greater awareness of the conditions and change of diagnostic criteria. However, there is no clear picture as far as Asperger Syndrome (AS) is concerned. There is no data on prevalence of AS alone, and almost certainly this condition was essentially unnoticed, considered as some sort of quirkiness, even in very recent past. Equally, many adults with AS have remained undiagnosed to this day. It is therefore possible that AS is not on the increase, in any case, the data is not there yet to answer this question accurately. However for the rest of the ASD kids, the increase seems real. I can argue this point using a range of additional arguments, but let’s not get too distracted, even if this is an essential point. (more on this here)

The second point I would like to make is that it is not just autism that is on the increase, allergy, asthma, ADHD, MS, cancer, fertility problems, to name but a few, are all on the rise. In the case of allergy for example, before the industrial revolution, when people started to work on allergy problems, for example related to pollen, it was very difficult for doctors to identify a sufficient number of cases. The condition was essentially unknown. This would suggest that the changes associated with our industrial environment are contributing to the rise in prevalence of this condition and very likely to that of others. The environment is complex and constantly changing, many of the substances found in the atmosphere and the food chain affect health of various organisms incl. humans, and many substances have unknown toxicity. Additionally, many work in complex synergistic association. ADHD for example was recently found associated with higher urine level of organophosphates, which comes form excessive pesticide use. Any disease or condition that is on the rise is typically viewed, even in mainstream quarters, as resulting from both genetic susceptibility and environmental changes. Classic cases are cancer. As far as autism is concerned, there is a growing interest to look at how the environment impacts on the condition. For more see Autism and Environment: The NIH is finally searching for answers. There are a number of known ways in which a gene-environment interaction can be causal to a phenotypical modulation of traits/ condition/disease. For example epigenetic, but there are other ways too. I don’t want to go into much details, but I want to stress, that both in autism and in other areas, known and established mechanisms have been proposed to explain causality and phenotypical variation very adequately.

The third point which I have raised time and time over, is that currently individuals with autism are diagnosed according to 3 main behavioral features, even though we know the conditions can be associated with a wide range of unrelated genetic, metabolic, physiological and clinical conditions. In other words, autism is not a single conditions, but a group of syndromes. The implications are that what affects someone might be unique to this person. Equally, the answer in terms of remedial treatments can be very unique. More on this here. The inadequacy of diagnostic criteria is partly to blame for the misunderstanding of the aetiologies (causalities) of the condition.

The fourth point I would like to make is that Autism is associated in about 60% of the cases with health issues, digestive system, immune system and commonly presents with a regressive feature (again about 60% of cases). Some preliminary reports can be found discussed in the BMJ. This is important because we are starting to conceive that some people might be more vulnerable than others if they are placed in situations of overload. Overload can be understood quite broadly. Overload in terms of insult to the immune system, overload in terms of specific toxins (e.g. organophosphates), or overload in terms of stress, etc.

How can someone with autism be helped and understood?

When I meet people with autism I listen to what they or their family say and express. I listen to their history, complaints, issues, traits, preferences etc. I have come across many highly detailed and convincing stories of children suddenly regressing after vaccination. Equally, I have had cases who regressed after a severe infection. Or some who were regressing after general anaesthesia. But equally, I have cases who regressed with no clear association we could identify. And also of course, cases with no regression, where the child presented with developmental differences apparent from very early on, typically before age one. We have also cases for whom we highly suspect an early pre-natal insult (e.g. anti-epileptic usage in the mum, or drug usage), though these cases are more rare. I am unsure about the impact of birth trauma, but certainly in our sample of 400 children, as many as 25% have experienced very dramatic deliveries. Shortage of oxygen supply can affect brain function and development. Very likely though, we are not talking about a single trigger working centrally in isolation, but a sum of triggers. None the less though, in the current complex environment we live in, it is totally conceivable and likely that some very specific and particularly challenging triggers will constitute the final load, the last straw on the camel's back, that tip someone’s function out of balance. Biologically speaking, vaccines are amongst the most challenging experience vulnerable individuals are exposed to.

The issue of vaccination is not the only factor potentially implicated in autism

I believe that many doctors are aware of the potential side effects of vaccines, not just to children but also to adults and elderly. They have expressed their reservation and concerns in private very clearly, yet, they will not stand publically to say it to the exception of a few doctors.

What the government has in mind is that vaccination on balance saves lives, and it does. The argument is about the herd immunity. And this argument has been fine all along, partly because the numbers of causalities were essentially unnoticed, or low, or affecting people no one was particularly adamant to fight for. On balance therefore vaccinations have helped preventing diseases. But things have started to change when children appeared to become affected shortly after new vaccinations were introduced. The difference here is that we are talking about a significant number of similar accounts, and more importantly still, we are talking about the most precious people in the world, children. And their parents who are in their 20-40s, are very able and motivated to fight for them and defend their rights. To them even a very low risk of side effect associated with vaccination is an unacceptable risk. The herd immunity concept no longer makes sense when the side effect consequences are experienced within the family.

In short, yes, in my opinion vaccination is implicated in some cases of autism, my guess estimate is in about 20% of cases of today's autism, possibly more, but not less. There are other issues that are very important to consider and vaccination almost certainly affects a person in combination with others environmental factors and together with a genetic susceptibility.

The governmental and health authorities should reconsider the safety issues of our environment drastically, across the board, industrial emissions, pesticides use, the quality of the food we ingest (nutritional value is known to be on the decline), life style etc. We should also reconsider the way patients and people are being treated once they enter the health care system. Listening to what people have to say is so essential and relevant to what happened to them. Science and medicine should remain a lot more independent from any industry, because there is too much conflict of interest. One cannot trust a study that is conducted by anyone that aims to promote a product or has a vested position. Or at least it should be highly scrutinised by an independent panel of experts, which is not always the case even with the current peer-reviewed system. We should keep in mind that in science, there are very few true independent individuals, except those who are perhaps somewhere on the spectrum, for whom conventions are unimportant compared to necessity to focus centrally on what makes the most sense and is more likely true.

Returning to the start of this post, I don't think debating on these issues, in the current autism political climate is helpful. I prefer instead with others, to focus on individuals and their specific needs and assisting them to access to the services and treatment they can benefit from. However, I am not afraid to debate and discuss my views if being asked.

Accuracy of Autism Diagnosis: The Amanda Baggs Case

2010-05-16T09:24:00.006+01:00

Amanda Baggs as an Autistic

Background

Amanda Baggs is an adult who presents herself as autistic. She has gained much attention on YouTube with her famous video "In My Language" and has received much support and admiration from the Neurodiversity (ND) community, essentially because the behaviours she portraits (very autistic in presentation) together with her very high intelligence enhance the value of the ND message. The ND message is in a nutshell, that autism is not a disability but another way of being that should be respected for what it is. Many of us would certainly would agree that autism and autistic people should be accepted and included as much as possible in their community. However, parents, friends, and some autistic people have another side of autism to report, the disability side, the one that comes with health issues, etc.

The point of this post is not to dwell on these ND versus Non-ND issues as such but rather to try to understand why someone who is not autistic would "suddenly" present with the condition. The second point is to return to an essential problem, that has yet to be sorted out, that relates to the issue of diagnosis: What is autism exactly? How should it be diagnosed? When should a diagnosis be applied or not? How should autism be represented in our community and by whom?

A possible scenario that led Amanda Baggs to present as autistic

It is hard to watch a child with autism without feeling a great deal of compassion, especially when he is in a clinical setting being probed in a manner that he does not relate to by various professionals. When he displays anxiety, various forms of repetitive behaviours and presents with limited communication skills, in a world of exclusion and incomprehension, a common response is to feel compelled to help and to stand on his side, protect him and his choices.

Could it be what Amanda Baggs tried to explain when she talked about her experience of autism as a 17 year old girl recovering from schizophrenia?

“Many children (mostly autistic) at my school use those picture card things. Everything in the room is labeled with them, and they have schedule boards with velcro on them to attach the pictures. When they want to do something, they point to the picture (often with a lot of coaxing). My school's pretty neat actually. It's special-ed for ages 7?-22. There are maybe forty students, of all kinds of problems (I'm in the high-functioning class, recovering from schizophrenia). I get to work with one of the autistic girls once a week, and I really enjoy it. I want to do things like that professionally, eventually. Once I get out of this school and back to college...”

One school of thought on how to comunicate with autistic people is to “join” them in their behaviour as a way to relate to them. And it is indeed a very effective way to build a bridge of communication and this is for several reasons: One is that by joining someone in his or her behaviours, acting and being truly like that person makes you more likely to know what it feels like to be autistic and to be that very person. The second reason is that when you switch your perspectives to the one of an autistic person, you often present as someone much more easily reachable by someone with the condition, as long as you do this with sincerity. Judgements and conventions are dropped, leaving more fundamental and intuitive communication more easily available. A child with autism tends to relate more easily to such person than to someone presenting with conventional modes of communication and way of being.

Could it be that Amanda Baggs wanted so much to help but not being able to do it professionally because of her psychiatric condition, she instead felt like doing it by being like it, meaning becoming autistic?

But autism is not condition one controls, that can be done at will, though it is no doubt a condition one can easily imitate, especially with some experience of it and observation skills, together with an ability to disconnect from reality.

And what if, on top of this greater compassion, such enacting also provided some public attention? Presenting this new Autistic-like persona more incredible still, by breaking the odds, against all expectations as an extreme behavioural aberration combined with high intelligence, fuelling into the myth of the great autistic mind locked behind glass. Wouldn’t it be excessively exciting to experience such public attention, especially if the person acting it, would never have had the chance to become anyone who attracted attention without these false claims?

Autism does not come with schizophrenia and as a matter of fact according to both the DSM-IV and ICD-10, the diagnoses are mutually exclusive: “criteria are not met for another specific Pervasive Developmental Disorder or schizophrenia”, as stated in the DSM-IV. So Amanda Baggs cannot have both autism and schizophrenia, and as she has received many diagnoses before acting autistic, the most likely explanation is that she does not have autism at all.

The problem with this is of course that personalities faking autism misrepresent what the condition really is. It gives false and romantic views, and when this becomes endorsed by a community that is dependent on this type of idealism to justify its very own existence, we have worse consequences still.

But let’s be honest, Amanda Baggs has fooled the world with her pretending, and so has Donna Williams , and so has anyone who has chosen to represent autism from their own personal narrow perspective. Many in the autism community have created cult personae, taking autism as a bandwagon to fame. The day that we will start presenting autism comprehensively and in balanced manner for what it actually is, acting in non-biased independent ways, we will see the start of real progress and real answers.

Other link of interest

Amanda Baggs as Galiganinda Dulin

Example of Blog exchange on Amanda Baggs (comment section)

DSM-V Diagnosis criteria revised

Autism Syndromes: Clinical presentations associated with the condition

Autism: Speak Up for Your Rights!

2010-05-09T13:29:00.007+01:00

Video Link Here

This video was inspired by accounts form parents who explained all the tricks they used to fight the education authorities to get a suitable school placement for their child.

Having been through this and other similar situations myself, I can guaranty that everything will be done to oppose your decisions as a parent. In other words, we will have to fight for every single right no matter how small. In order to do this more effectively there are some things to absolutely avoid and others to do...

Any weakness will be used, but even strength is a weakness, because if you show that you know more than they do, it will shed an uncomfortable light onto them. Here are a few tips... Please comment- I will be adding a scene of the parents coming in with husband/partner, as this brings a lot more weight to the case, especially because parents are always outnumbered in meeting like this. Have you ever walked in a room alone and sat at a table with 12 professional of some sort? If you do not have a partner, borrow a male friend.

Weak points some parents may convey: depression, anger, tiredness, disorganization, too much emotions, insufficient knowledge of issues at stake (some of the time), feeling powerless, looking rough and run down. These will be used against you, find the way to change all of these for any important meeting regarding your child, if you are unsure, bring an advocate, and ideally, always have a witness with you.

Please share your own experience and Good Luck!

World Autism Awareness Day

2010-04-03T19:29:00.009+01:00

VIDEO LINK HERE

How Aware is the World of Autism?

The 2nd of April was World Autism Awareness day. I used the opportunity of the opening of an art exhibition to ask some people attending a few questions on autism. Ten interviews are shown in the video linked here.

Whilst none knew it was World Autism Awareness day, quite a few knew a fair amount on autism and collectively the level of knowledge was high. Not too surprisingly many had either someone with autism in their family or been in touch with someone in their life. Suggestions on what would help were also very positive and encouraging. I am not sure how representative these people were of the general population, but overall these accounts are encouraging.

Capitalism and Autism: Two Love Stories

2010-02-28T10:38:00.028Z

Photograph: David Maisel- Library of Dust- Oregon State Hospital
(inside each of these urns are the remaining corpses of unwanted mental health individuals no one has claimed; the cheapest form of disposal one could come up with).

When I watched Michael Moore’s latest movie: Capitalism: a Love Story, it struck me that many of the flaws of the current economical system revealed by his analysis were also relevant to the situation we are facing today in autism. Irrespectively of our take on autism,whether it is with regard to advocacy for disability rights or as parents asking for greener vaccines, or even as researchers, educational and medical professionals, the bottom line is that our inability to provide better answers relates to our society losing sight of its true values; the ones of its people and environment, at the expense of the greediness of ownerships. People are no longer defined by their actions but by what they own, consequently, we are racing as individuals to get the better share of what this world can offer us. Unfortunately, the current free system of exchange implies that what is owned by a few is lost by others. This attitude prevails over the values of caring, supporting communities, or developing better solutions to a particular community or environment problem.
The film presents a very grim analysis of our economical system pervasively infiltrating every single aspect of our lives. The cynicism of the situation is however wider than presented; Europe is not spared and it is by no means only the lowest income people who are facing this harsh reality, it is also the reality of all individuals with a disability and their families. The reason is simple, care and provisions for these individuals are costly. Would a democratic system as Michael Moore proposes serve this cause better, when a democracy often equates to insufficient representation of its minorities? I wish I could believe in this view.
A few facts reported are chillingly reminiscent of some conspiracy theories with regard to the role played by the pharmaceutical industry in developing markets at the expense of people’s health. The Dead peasants' insurance policy for example, pays employers a secret, tax-free windfall when they die. Insurers have sold millions of policies to companies. The cost benefit for someone losing his/her life amounts to hundreds of thousands or even millions of dollars to the company per employee, and the younger the better. None of this money will ever come to support the remaining family, no matter how harsh their living conditions become. Such insurance policies were set up in the 80s. The congress has recently tried to crack down on the practice, to the howls of the insurance industry, but earlier this year, reforms were derailed. In other words, the congress was ruled out by power of money, irrespective of the highly unethical aspects of the business taking place. I refrain from seeing our world too sordidly, however, one must acknowledge the existence of very plausible theories behind not only the rise in autism, but also various mental health disorders including depression as well as AIDS.
How could these things really be happening?
Michael Moore seems to be putting this down to a progressive derailing of democratic values after Roosevelt, who set out in The New Deal legislations intending to create new jobs for the unemployed and to provide direct assistance to individuals, with the Social Security Act.
Moore also reminded the audience of the initial aims of the American Constitution in the name of “The People”:
“We the People of the United States, in Order to form a more perfect Union, establish Justice, insure domestic Tranquility, provide for the common defence, promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America”
Justice? Domestic tranquility? General Welfare? Our Prosperity?
Over the last 20 years, financial markets have undergone a revolution, driven by deregulation, a rapid pace of financial innovation, global financial integration and the increasing role of the financial sector in the economy. This has led to the current financial crisis seen as one of the worse since the great recession of the 1930s. The implications are the bail outs, the loss of jobs, the loss of housing. I learned that a home is being repossessed in the US every 7 ½ seconds, leaving families out in the streets with no belongings or prospects for a place to live. Additional financial and economical ventures have been developed that further weakens the system, with increased borrowing and so far, even with a new democrat president, the system remains under the ruling of the financial industry.
So where does this leaves us with regard to autism? Sadly, it seems that autism has to become a commercial or political affair in order to generate the services that are needed. Autism is not seen so far as a social civil rights issue. Today, in Scotland, England or France, parents have to fight in court to get a half suitable education provision for their autistic child. They have to fight to prevent the pharmacological seclusion of adults and to have access to a placement that offers the provisions needed. Today parents don’t even visit their GP to ask for support with the health issues their child experiences. Provisions are scarce or absent. The issues are too costly for the government to respond to and the demands do not meet their match. We have to somehow go back to the basics; the basics are the values of people and the environment, but what system would enable such refocusing? Autism is not a financial free-market concept and it is not even a democratic issue. It is a moral matter, but who is promoting morality now-a-days?

Coincidently, as I was reading "In the Country of Last Things" by Paul Auster, I found myself facing a very similar haunting picture of a devastated world chillingly shadowing the one depicted by Moore. How much worse is this going to get?

New DSM-V: How will autism and Asperger be defined?

2010-02-15T15:42:00.017Z

There is much discussion going on at the moment regarding the changes in definition of the autism diagnosis in the new DSM-V (Diagnosis and Statistical Manual of Mental Disorders), due to come out in 2013.

Research indicates that the distinction between mild - high functioning autism and Asperger is difficult to make, consequently Asperger might no longer be seen as a separate condition and would be included instead together with autism and pervasive development disorders.

Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual said:

"Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder".

"Asperger's means a lot of different things to different people”.

"It's confusing and not terribly useful."

These changes seem to generate some anger and uncertainties amongst Asperger people and also, amongst some parents of autistic individuals as well as autism professionals. The arguments we hear are somewhat inconsistent with what has been argued all along, but this only illustrates further how divided people are with regard to what autism actually is.

Some Asperger people who tend to like to advocate for autistic individuals (e.g. ASAN group), often speak for anyone who has a diagnosis of autism. Surprisingly however, the proposed changes concern them, because they argue that they would be stigmatised if they were labelled as other individuals who are less functional than themselves. In other words, they both present as being representative of the autism community and as being opposed to a grouping with other autistic individuals. A comment made by Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006) illustrates this well: “

"The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” but if people are told they should be evaluated for autism, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’

Similarly, many researchers have exclusively focused on Asperger and High Functioning Autism, essentially because assessing them is easier. The data however is almost always presented as facts of significance to autism as a whole. So why would they too be concerned of grouping everyone under a same diagnosis? See New York Time article by Simon Baron-Cohen on this issue.

The problem is rather that we still are far away from defining autism, Asperger and other related conditions in any effective way. There are currently no biological markers and the diagnosis is solely made according to three main, and I would say rather crude traits: communication, socialisation and behaviour. But these traits not only vary in their severity or mildness, they also vary in the way they develop, in the way they evolve and in the way they associate with other co-morbid factors, of a medical and/or behavioural nature. Furthermore, it has now been over two decades since we have known that autism could be related to totally distinct aetiologies. Clearly autism is not how we have defined it so far. Therefore we need to provide better answers. And this must arise from better and fuller evaluation of individuals, from getting to grips, once and for all with the huge phenotypic disparity we are witnessing.

Would the changes proposed by the new DSM-V assist in this sense? Perhaps on one hand, as we have seen recently, the discussions that have been generated demonstrate that all it is, is just merely a semantic exercise. And it seems to shock people to realise what they had called something one day could be called another thing another day. If this forces everyone to rethink autism for what it actually is, well, that is a good thing, for we should indeed look afresh at the actual specific characteristics of autism spectrum disorders. Also we need to define better what might be the values of a diagnosis, when it should be given and how? That could prevent the misuse we have seen in recent years by many self-proclaimed protagonists.

On the other hand, there is the risk that some people would no longer want to be assessed for a diagnosis and that consequently, could affect in the support they receive. Additionally, we risk achieving just the opposite of what the American Psychiatry Association is trying to achieve, with regard to better gradation of the severity, better recognition of medical comorbidities (including genetic disorders, epilepsy/EEG abnormalities and sleep, or GI problems) and potential biomarkers, as it is harder to distinguish people who have been defined by one single common condition.

Perhaps, it is time to stop defining the diagnosis of autism from the sole input of psychologists and psychiatrists but also with the support of medical doctors and scientists who are able to bring a whole new range of disciplines and insights into these conditions.

Update 01.03.10

APA announces a one year delay in publishing the DSM-V- interesting article here on the semantic of labels.

A few additional links:

The revisions, which will be considered for the DSM's fifth edition, due in 2013 can be found here:

http://www.dsm5.org

Viewers will be able to submit comments until April 20, 2010. After that time, this site will be available for viewing only.

Diagnostic and Statistical Manual of Mental Disorders.

CNN report: Revised psychiatry manual targets autism, substance disorders

By Elizabeth Landau, CNN, February 11, 2010

http://edition.cnn.com/2010/HEALTH/02/10/dsm.v.revisions.psychiatry/

“I am delighted with the outcome and that justice has prevailed.”

2009-09-02T19:32:00.012+01:00

Highland council failed to protect Woman from attacks

Assaulted teacher awarded £71,000

Published: 01/09/2009

A teacher who was repeatedly assaulted by an autistic pupil has won more

than £71,000 in damages after a sheriff ruled that Highland Council

failed in its duty to protect her ....More here

Response from ATT submitted on the 02.09.09 (We do not yet know if our response will get be published ).

“I am delighted with the outcome and that justice has prevailed.”

It is with some sympathy that we share Mrs Teresa McCarthy concerns over the lack of support given to teachers of children with autism. These teachers should indeed be fully assisted in what can be the most valuable and honourable job in the whole world that is to educate and support the growth of children with additional needs and especially the very vulnerable children who have autism. These children are coming year after year in increasing numbers at our school doors, and what assistance and support is there?

One should however ask whether the decision made by the Inverness Sheriff Court to award Mrs McCarthy £71,158 really is an act of justice. In which way does this help address the core problems faced by autistic children unable to fit to most currently available provisions? Justice is about providing an educational system in which all children, irrespectively of their disabilities have the opportunity to learn to their fullest potential. And after all, isn't it one of the policies of the Scottish Government, clearly laid out in Education (Additional Support for Learning) (Scotland) 2004 and 2009? The education authorities have the remit to identify and address the additional support needs of children and young persons who face a barrier to learning. Too often however, these glossy words have little effect in the reality of the classroom. It was said that the council failed to implement measures to control the boy’s behaviour until after the final, major incident, but the real failures are much wider still.

A child who has autism may present with challenging behaviours, however, these in the majority of cases, result from mismatches between what a child needs and what a system is able to provide. Our primary interest at the Autism Treatment Trust is in the child and why challenging behaviours occur in the first place. The reasons are often quite complex and may be associated with a variety of factors such as confusion, disorientation and/or distress, however we would like to suggest that a potential problem the child may have and one that requires investigation by a paediatric gastro-enterologist would be the presence of pain, particularly bowel pain. We have arranged the comprehensive testing of over 400 autistic children and it has been shown that approximately 60% have bowel problems. The self-injurious and often ungovernable children are most frequently the ones with bowel disorders that have gone unnoticed and untreated.

Additionally, in the area of education, one should stress that the Scottish Government, unlike its English, Welsh and Irish neighbours has systematically refused to implement, or even explore on a pilot basis the potential benefits, of the well-researched educational methods that rely on the rigorous assessment of the child's developmental levels, needs and abilities, and assisting step by step the child's learning with the support, and encouragement of his teachers. Methods that provide an in depth understanding of the child's behaviours. In the incident report for example, it is unlikely that the child's challenging behaviours were triggered by using a certain classroom door and light switches. The child's behaviour responds to a much higher logic than this, a logic which educational and medical systems have to unravel in order to address it effectively.

We must however hope that the potential drawback of being fined such a large amount of money, at the expense of the tax-payer, for each incident encountered will eventually force not only the local education authorities, but most of all the Scottish Government, to become much better partner to the autistic child, playing a major role in truly meeting his needs ad assisting him to reach his fullest potential.

Dr. Lorene Amet, D.Phil

Principal Scientist

Autism Treatment Trust

Edinburgh

www.autismtrust.org.uk

"Autism Treatment Trust is dedicated to helping individuals with autism to reach optimal health and learning"

Autism: Let's get real about it!

2009-06-13T18:06:00.015+01:00

This post came about after witnessing endless arguments on various autism blogs. Arguments that do not make much sense to me because in the end, we all want the same: the best for people with autism. Autism is complex and touches us in many ways. Everyone sees the issues from their own perspective, none of which is fully accurate and complete. None of which is wrong either. We have more to gain to find ways to complement each other than stay divided. My own journey through autism illustrates the sort of mind changes that took place for me. In a way, I have been every one of your little fractions at some point of my life. I can now carry all of these within me with some inner peace and faith, because I believe that life and knowledge are what will prevail at the end of the day.

It is all too easy to forget the reality of the life of people who appears overall to be functioning, their daily struggle to reach a true inclusion in our society, happiness and independence. It’s all too easy to forget the extreme chalenges other people more affected still face, those who cannot speak, those who can not make sense of their world, those who are in total dependency, at the mercy of the worse possible abuse.

If I did not know about autism, I would be a fool myself.

I learned about autism and got into it much before my son was born. The book that got me into this was from a German autistic non verbal boy, written in 1993 when he was 20 year old. His name is Birger Sellin, his book, I Don't Want to Be Inside Me Anymore: Messages from Autistic Mind. The book raised a huge controversy at the time because it was thought that non-verbal autistic people were mentally retarded and unable to communicate and express complex thoughts. This boy was presented through his writing as being trapped inside himself, only able to communicate the most eloquent form of poetry through assisted communication with the help of his mother. She seemed to be the only person understanding him and enabling to let him be expressive. To me, this book represented a sum of cumulating influences; anti-war, revolution, politics, freedom, individualities of mind, and definitely very socialist ideas. It was presenting a view of autism that I would now call, romantic, because it was in a way very abstract and idealist.

And if my son was not born after that initial book, I would have then moved on to others books, no doubt some of them would have been from Simon Baron-Cohen and guess what? I would have found them to be highly intellectually pleasing.

What did we once said? Autism as a good dinner table conversation? Yeah, a good table dinner topic, no reality to it, other than a spectral academic and intellectual one. I have lived in academic illusions most of my adult life, I know what it feels like.

Well, I have not stopped at that romantic glossy autism picture. I have seen most its facets, experienced it personally with my guts, hated it too, more than once. I have felt it with my hands and with my tears. With my smiles too and with my love.

This is to come to the point that should bring us together, fighting for a common cause, our children. The emotions surrounding autism should bring us together and not apart. Let’s always, always, always be real about autism.

Autism and Environment: The NIH is finally searching for answers

2009-06-11T08:29:00.021+01:00

Let's pause a second and remember why studies on environmental triggers in autism are important: this photo says it all; genetically vulnerable children need protecting from our environment.

Child 2 years before regression foreshadowing his great vulnerability

NIH Autism Study to Leave No Stone Unturned
US Government officials are finally getting serious about studying all potential environmental factors in autism, and I for one applaud them heartily for leaving no etiological stone unturned…Read the excellent report from D. Kirby on Huffington Post.

Early Autism Risk Longitudinal Investigations- EARLY
EARLI is a network of research sites that will enroll and follow 1,200 mothers of children with autism at the start of another pregnancy and document the newborn child’s development through three years of age. The EARLI Study will examine possible environmental risk factors for autism and study whether there is any interplay between environmental factors and genetic susceptibility.

Even though this study is a major undertaking, requiring very substantial funding and a very large scale screen across the population to reach sufficient statistical power, I have no doubt that it is feasible given the means. It’s only with this type of study that we will get to the bottom of the matter.

Other smaller scale studies done in the UK will add to the debate. For example, a study conducted by Dr. Barbara Maher from Lancaster University suggests that traffic pollution causes abnormal levels of - so-called "particulates" - produced in vehicle exhaust. The UK Environment Secretary Hilary Benn admits there is a problem but says 24 out of 27 members of the European Union are in breach of the standards.

Particulates produced by vehicle exhaust collected on young tree leaves in a street in Lancaster

In a different study conducted by Professor Jonathan Grigg in London earlier this year, measuring the lung capacity of 8- and 9-year-olds, it was found that 7% of the children have lung function reduced to a level internationally regarded as hazardous.

Professor Grigg reported to the BBC: "Our findings in the East End of London are that children living here have slightly lower lung function than what we'd expect from the national average.
"Now, if that's due to air pollution, as we suspect, they're going to be at increased risk from a range of respiratory disorders such as asthma and infection, and may be at risk in adulthood."

Video report

These recent findings in the UK are consistent with the view that our environment is progressively getting more toxic and can affect children's development and health in multiple ways. We have to keep in mind that autism is not the only condition on the rise. ADHD, ADD, Asthma, Eczema, allergies in children and multiple sclerosis, Alzheimer disease in adults are also more and more common. With the recent acknowledgment that medical doctors amongst professionals find difficult to recognise the signs of autism, we can hardly continue to pretend that the rise in the autism prevalence is due to better diagnosis and recognition.

Well, does she like cuddles? Yes. Does she push her peas off her plate? No.Then she is not autistic

2009-06-07T08:12:00.006+01:00

Parents of autistic children rarely bring their child to their GP. One of the reasons is that it is often difficult and draining for the child and parents to attend to a consultation, wait in a crowded waiting room and contain the child whilst talking to the doctor. Another reason is that it is all too rare to receive the support and advice needed, not solely towards autism, but also towards the clinical issues the child may be facing. All too often parents hear in response to their concerns: what do you expect of a child with a neurological developmental disorder? I have been there, and this was a very painful answer to get following my queries regarding the frequent need my son had to pass urine and go to the toilet.

I have gathered countless stories like these from other parents. A mother raising her concerns regarding her 2 year old daughter’s development to her health visitor. This professional responded:

“Well, does she like cuddles?:

Yes

“Does she push her peas off her plate?”:

No...

“Then she is not autistic... “

Or even this one, let’s hear it: A mother came to her GP to query her son’s bowel difficulties and explaining all the symptoms in details asking for advice as whether a gluten-free casein-free diet would be appropriate. The GP responded that she did not know, she did not advice to put a child on a diet but admitted not knowing much about this. A few weeks later, the mother came back to the GP explaining what she did with her son and sharing the outcomes. The GP stopped her, saying, I have to thank you. You have diagnosed me. After hearing about your son's gastro-intestinal symptoms, I investigated a possible link to gluten and found out I had celiac disease. This is a GP talking to a mother of an autistic child.

At least this doctor was honest and opened-minded, we have to acknowledge this.

The article below refers to another type of ignorance towards adults with autism. Many doctors admit they have not learned much about autism in their study, nor have they learned much about nutrition. The ignorance on autism is not solely shared by medical professionals, but is seen across professions dealing with the public. This issue needs to be addressed widely.

GPs don't spot signs of autism

5 June, 2009

By Richard Staines

Most doctors are having problems spotting some of the signs of autism, according to a National Audit Office survey

The NAO says that 80% of GPs polled for the report Supporting people with autism through adulthood believe they need more training and guidance to identify and manage those with autism more effectively. The survey found that due to a lack of specific services, many doctors do not know where to refer people with autism.

The report says: ‘64% told us that they referred adults with suspected high-functioning autism to adult mental health services, and 19% to learning disability services. (A total of) 12% were not sure where they should refer such patients, and only 10% reported that they would refer them to a specialised autism diagnostic service.’

Meanwhile, half of the estimated 400,000 adults in England with autism may not be getting treatment because they do not have a learning disability. This is due to the fact that most services are geared towards people with illness, physical or learning disabilities and mental-health problems.

The report says: ‘Providing specialised support could improve outcomes for this group of people and their carers, and potentially enhance value for money, as the costs of establishing such support could be outweighed over time by overall savings.’

Edward Leigh MP, Chairman of the Committee of Public Accounts, said: ‘Many adults with autism are slipping through the net.

‘They do not fit into any particular category for which services are provided and therefore fail to qualify for any help whatsoever.’

It is estimated that there are around 400,000 adults with autism in England, half of which have a learning disability.

The NAO study has found that adults with ‘high functioning’ autism, those without a learning disability, are particularly affected by poor support services.

Health and social care services are traditionally catered for patients with learning disabilities, and so those with an IQ of above 70 have difficulties accessing the services they require.

The report calls for specialist teams for supporting adults with high functioning autism and more collaboration between clinical, social and employment services.

Autism and the role of epigenetic

2009-06-02T21:50:00.007+01:00

Epigenetic can be viewed as the mechanisms of temporal and spatial control of gene activity during the development of complex organisms. It refers to phenotype (or gene appearance) that involves modification of gene expression without involving any change of DNA sequences and these changes remain through cell divisions and are passed to future generations.

Various environmental factors are known to cause such epignetic alteration of gene expression. These even include factors of a psychological nature such as acute and chronic stress.

Epigenetic modifications in autism consistitute the most complete and compelling model that could explain the many intricate gene-environment interactions and account for the specific developmental and behavioural features of autism, including regressive autism. It is also consistent with the benefits seen with interventions such as high doses of methyl-cobalamin (vitamin B12) and methyl-rich supplements such as folinic acid, DMG & TMG (di-methyl glycine and tri-methyl-glycine).

The Presentation by Dr. Janine M. LaSalle, Professor, Department of Medical Microbiology & Immunology, University of California, Davis explains well why this model is very complelling. Please skip the first 10 min.

Donna Williams’ diagnosis: Has Lawrie Bartak been misled?

2009-05-17T09:49:00.015+01:00

A post I received from Anon suggested that I was not a medical doctor and was not trained to make a diagnosis of autism. I have never pretended to be a medical doctor or a psychologist; my biography can be found here. I hold a PhD in molecular biology, have gained experience through 12 years of research at Strasbourg, Oxford, Princeton and Edinburgh Universities, in the areas of genetic, molecular biology including virology, brain development, brain ischemia, apoptosis, and epilepsy. This was followed by a total focus on autism following my son’s diagnosis in 2001. I then trained to educate children with autism (receiving some training in ABA, VB, Son-Rise) and currently reading for a Master in Special Education/ Autism children at Birmingham University. I trained in biomedical interventions and work with several medical doctors who have knowledge of treating the medical issues seen in autism. I also trained to make autism diagnosis assessment using the ADOS (Autism Diagnosis Observation Schedule). I am principal scientist at a Trust based in Edinburgh and this gave me the opportunity to meet over 400 individuals with autism, children and adults. I have also traveled to Egypt, Turkey, Greece to meet people and families with autism. My training and personal position have given me the experience, knowledge and most of all a unique perspective on the many issues seen today in autism.

My concerns regarding the validity of Donna William’s diagnosis started when I met her in Edinburgh last year. There were many inconsistencies in her presentation that made her very unusual in her presentation. I was constantly puzzled by something I could not define clearly at the time. People with autism I have met do not have the level of expression, understanding and awareness Donna presented with. Yet, she presented with behaviours that were profoundly more autistic in nature, it felt very text-book, cliché and somehow organized. Also, I have not yet met anyone with autism with such high desire to constantly seek attention and appears so eager to be in the spot light and a subject of absolute interest. Most people with autism I have met acts much more independently of what others do or think and because of their autism, they prefer to be amongst the unknown rather than in the lime light.

I have since read the abc report of 1996, which not only included reports from Dr. Bartak’s diagnosis of Donna but also the views of others, Professor Fred Volkmar of Yale University, Dr Kathleen Dillon, Professor of Psychology at Western New England College, Geoff Lyons, a fellow student of Donna's in her final year, Chris Eipper who lectured Donna in several Sociology courses, Lucinda Aberdeen who was Donna's tutor in 1985 and Marcia Devlin, a fellow student of Donna's in 1991.

In this report which can be read in full here, I see that Dr. Bartak suggested that Donna had managed in her University studies by rote learning (as people with autism tend to do). Having heard Donna and a few adults with autism give a lecture, I can guaranty there is not a single bit of her presentation that is rote learning. Rose Blackburn, who is an adult with autism, lectures by rote learning. Her presentations are fundamentally different from that of Donna. I had the opportunity to meet her twice presenting a talk 6 month apart. I came to the second lecture because I had enjoyed the first, but most of all because I wanted to know how similar the second would be to the first one I had heard. There was not one difference I could spot. Even the jokes that appeared to be very spontaneous were placed in exactly the same way at exactly the same points of her presentation. This is what rote learning is. Donna does not seem to have even 1% of that form of learning.

We should appreciate that to do an accurate diagnosis of autism does take a lot of work and a lot of investigations, taking into account not just the current presentation of the person but also the reports of family members and others who have known the person. If I wanted today I could get a diagnosis of autism for myself, I have no doubt this could be done. I know exactly what it takes to get it, how I should act and which information I should provide. Actually, I might even try to get one, just for the fun of the exercise.

I note another interesting point in the abc report regarding what Dr Kathleen Dillon said:

“I'm not sure how exactly I would classify her. I've thought about it, I've come up with possibly ten different kinds of disorders. The one that seems that I would chuck out I think if I was meeting her and trying to get some sense of who she was, was to think that maybe she has a borderline personality disorder, which is sometimes related to abuse. She certainly has had abuse, and she may have even experienced physical trauma to the brain from the abuse, and that could be the cause of her problem.”

But most of all, what appears to me as being the most revealing information is what her fellow students reported after Donna had officially announced diagnosis of autism:

"Because the change was so dramatic. And it seemed so acted. She seemed like she was making a point all the time of everyone knowing at every moment that she was autistic."

Surely when someone presents as very social in University setting, very able intellectually and suddenly acts or present differently, there is something happening and this must be taken into account to balance the original diagnosis. This pattern of evolution of behaviours does not fit to autism.

The opinion I express here arises from the analysis made from a range of information regarding autism, how it is diagnosed, how people with autism present, how Donna presents and the reports made by others of her behaviour in University years and after her diagnosis of autism. This opinion does not stand as diagnosis and clearly Donna has a diagnosis of some kind. It stands as a form of analysis nothing else. I am entitled to express this analyis as others have in the abc report and on the Internet. My professional training and experience of autism puts me in a suitable position to present such analysis.

If Donna is truly autistic, she should so concerned about what people say about her diagnosis, how could she possibly care? People with autism tend not to focus in such obsessive way on their public image. If there is something else at stake, then she will care. And this is exactly what we see here.

Survey: Autism Life Choices

2009-05-15T22:30:00.013+01:00

I have designed this survey in order to evaluate the quality of life a sub-group of people with autism have (those able to communicate in writing). I would welcome your comment on how user friendly the survey is and any other issues you would like to bring to my attention. The data will be collected at a later stage and its analysis will be presented on this blog upon completion. The data may be used as pilot investigation in request of a more accurate and extensive survey of the ASD adult population.

Many thanks for your time.

Take a Survey Here

Incorporation of Minorities: Accommodation or Integration?

2009-05-13T21:37:00.001+01:00

Photo: Girl in Cairo- December 2007.

I recently heard a programme on BBC Radio 4, on the issue of incorporation of Muslims in UK versus France which I thought was very relevant to the issues faced in autism. The programme discussed the outcome of a study that compared 2 systems of inclusion of Islamic minorities in UK and France. The first is accommodationist and the second is integrative. The study compares the outcomes of these modes of integration.

In the UK, Muslims are able to live in their communities, allowing full expression of their religious beliefs, with the wearing of religious clothing such as a head scarf for example. The approach to its Muslims has been accommodationist, bringing senior Muslims into policymaking and passing anti-hate laws on religion. In France by comparison, wearing a head scarf is not encouraged, it is even prohibited in schools. French integration theory and policy are based on a strong definition of 'Frenchness' as a political not an ethnic concept. Becoming French requires accepting French values (notably secularism) and wherever possible relegating expressions of difference to the private sphere.

Two standards were used to judge of the incorporation of Muslims in these countries: economic (how people are doing in terms of earnings and employment); and attitudinal (how people feel).

In both France and the United Kingdom, Muslims' economic integration were reported to be poor. In both, unemployment is high (above 20% and sometimes approaching 40%) among Pakistanis, Bangladeshis and North Africans. Earnings are also weak: According to 2000 data, male Bangladeshis were earning about three-quarters the average wage.

As regards to public attitudes, a more complex picture emerged:

Non-Muslim French: Most French people were particularly positive toward French Muslims, viewing them as generous and honest; a large minority saw them as tolerant.
Non-Muslim Britons: Attitudes toward U.K. Muslims were less positive, but better than among many other Europeans: most Britons viewed Muslims as honest, although only a minority saw them as generous and tolerant.
French Muslims: Most French Muslims viewed non-Muslims in France as respectful of women, generous, tolerant and honest (but not devout); only a minority viewed them as arrogant, violent, greedy, immoral or fanatical. Equally importantly, almost 80% of French Muslims support secularism, one of the Republic's intellectual cornerstones.
U.K. Muslims: Attitudes toward non-Muslim Britons were thoroughly negative: Clear majorities viewed them as selfish, arrogant, violent, greedy and immoral, and a substantial minority as fanatical. Only a minority of U.K. Muslims viewed their fellow citizens as respectful of women, tolerant, honest or devout. However, a majority thought non-Muslim Britons were generous.
Islam and modernity: Finally, U.K. Muslims were the most likely in Europe to see a basic conflict between Islam and modernity--47%. The figure for French Muslims was 28%.

Other issues were found to be radically different, for example homosexuality was seen by French Muslims as being acceptable in 1/3 of the sampled population whereas very few UK Muslims accept homosexuality. A similar trend of greater acceptance was seen towards sexuality outside marriage. But perhaps more importantly, when French Muslims were asked to rate the quality of their life they often rated it as more enjoyable than UK Muslims even though both populations do not significantly differ in term of economical status.

Where a common, non-religious identity unites Muslims and non-Muslims, the result is better public attitudes and a shared sense of a national project. Where religious divisions are emphasized, the result is mistrust. However, cultural integration is only one part of the equation. Economic integration, whereby Muslims enter work, earn wages and pay taxes just like their fellow citizens, is equally important; in this, both the United Kingdom and France have failed.

How relevant are these findings to the issues of incorporation of people with autism? Should we favor a model of accommodation or a model of integration even if these integration signify a greater loss of identity?

To: Lorene Amet - Proponent of Neurodiversity. What next?

2009-05-12T12:29:00.000+01:00

There has been much discussion about my position with regard to the ND movement on the Biomedical Europe Yahoo list. I have only read a few posts and will comment here, including a few extracts from parents in support of my actions. Perhaps it is indeed the time for me to clarify openly what I think of the ND ideas.

A friend called my attention to this. It is with some amusement I must say that I read some of the posts. I understand that the issue seems to have started from a video I made called Neurodiversity / Naturtrane Diversity. I thank you for watching it.

http://www.youtube.com/watch?v=x0hQ7b4pvxA&feature=channel_page

I know the issues are serious and I know you all want the best for your autistic child/children as much as I do for my child and for all the other children and adults I was fortunate to assist. But I am not opposed to the ND movement because part of their message is very valid. I don’t agree with everything they do and to tell the truth I don’t know everything they do, but I agree with some parts. Particularly that changing the attitude of others, being family member, general public, teachers, medical practitioners, potential employers, with a greater knowledge and acceptance of the condition will have enormous beneficial impact to the individuals and their family. Isn't it like being half way there? In addition, I dislike conformity of being, I prefer differences and individualities of mind. The diversity of behaviours, modes of expression, preferences, responses to environment is something I am profoundly interested in, much more so than of anyone who is conformist by nature. I don’t think anyone should reproach this of me, because if I did not have that personality trait, I would not be pushing and challenging boundaries so much, putting in place so much support the autistic people need. I am fine with someone who thinks differently, has skills in certain areas and appears less able in others, like socially for example. I think that’s OK to be that way as long as the person remains valued for how he/she is and helped. Of course I want everyone to succeed to the best of their potentials. Of course I want every one to be happy and healthy and this is exactly what motivates my work, if not my life. But we also need a drastic change of attitude towards disability and autism. More opportunities for inclusions, more acceptance. More cool off, relax and let’s work something out all together- attitude.

I thank those who have balanced the views expressed on the list (again, I have not read all the messages, so I will not be comprehensive here). I include some extracts, thank you again

We all have a lot of work to do, and we need what everyone can bring on this issue. United not divided, for our children.

Lorene Amet

We need people like Lorene to push the intellectual boundaries of the debatesaround autism, some of this is very academic, some is personal, and we cant likeeverything she says or proposes - we also can’t homogenise our opinions.I am really disappointed to see this descend into such a personal attackthough. It puts off new people who might need the help on here.Can we let it go now please, or at least contact her directly - I'm sure shewould be pleased to explain, given the opportunity.

Hi all,I'm a member of this group though haven't contributed or even lurkedfor a long time. But I feel I must rush to the defence of Lorene Amet.My son is adult, has Asperger Syndrome and we live in Scotland. We know Lorene well. Our son has been 'caught up' in the psychiatric system for a decade. Lorene has been a great source of support to us, dropping everything to write reports and attend tribunals for him -speaking to psychiatrists and mental health nurses in an effort to educate them in the problems faced by ASDs. This might not be seen to be part of her mission in life - but she helped us none the less. Thanks to Lorene's input our son even got discharged from a psychiatric intensive care unit at one point!! [unheard of] And by Jove she didn't hold back. Absolutely shredded the psychiatrists. She went that extra mile. She didn't have to - but she did. She is equally passionate about her research and helping children - and adults.Way to go Lorene!

Autism: What the hell is that about?

2009-05-03T15:27:00.000+01:00

When my little boy lost his ability to speak at the age of 6 years old, becoming withdrawn within 2 weeks, unable to function at school, being overwhelmed in most public settings, he received, plugged out of the air, the magical diagnosis of autism. This was based on 10 min observation in school conducted by an autism expert. That is all what he received. No investigations were made. My son was autistic and an alternative school placement with other autistic children was given in compensation. The novel symptoms he presented with, his great health fragility, the sudden development of his epilepsy, which progressively worsened over the years, his gut problems, his immune impairment, nothing received any kind of attention, unless I forcefully requested for some tests to be done, mostly unsuccessfully. We had a brand new label and there was no question to ask about this. Asking questions was seen as being a difficult parent.

Unfortunately, his case is not unique. Nearly 6 years later, I am working to assist other parents to access to the medical investigations my son should have received minute one after becoming unwell. I can report that in a group of 400 children seen at the Autism Treatment Trust in Edinburgh, 60% present with similar sudden regression and occurrence of novel autistic behaviours. Whilst many have experienced this regression around the age of 18 months, other children become affected in later years, at the age of 2, 3, 4, 6, 8 or even 9, years old. Christopher Gillberg has reported other cases of regression in autism at age 14, 30 and 31 years old (Gillberg 1991, Gillberg 1986 ). The difference in these cases, was that Prof. Gillberg had the genuine interest to investigate the cause of their novel behavioural traits right at the onset of their regression. And what he found was in all 3 cases reported was viral herpes encephalitis. A condition that is reversible because Herpes can be treated with anti-viral drugs. Did these people really have autism? No, they had viral encephalitis. Not autism. Christopher Gillberg has reviewed in his book, the Biology of the Autism Syndromes, coauthors with Dr. Mary Coleman the many genetic, environmental, viral, metabolic conditions that come with the features of autism. Are these conditions really autism? How could a condition come with so many different unrelated etiologies? Does autism actually exist?

To make matter worse still, we have some individuals who suddenly decide on day, that they are also autistic, most notoriously Donna Williams, whom I had the opportunity to meet in Edinburgh last Sept 08. Donna Williams was to me a very puzzling character right from the outset, though I must acknowledge that the concerns over her diagnosis were raised to me by others. But indeed there seems to be a great inconsistency with the symptoms she was reporting to experience and her ability to discuss and report them. Something that is rather hard for people with autism to actually do. A very demonstrative set of investigations questioning the validity of her diagnosis can be found here. I have since met other adults who also claim a diagnosis of autism, and present with similar puzzling social and emotional abilities very uncommonly seen in autism.

Michael Fitzgerald (in his book the Genesis of Artistic Creativity) and others have argued that many notorious historical figures, such as Beethoven, Handel, Van Gogh were also autistic. Equally scientists such as Einstein, T. Edison have also been presented as being autistic. But are these retrospective diagnoses a myth or a reality?

So Autism: What the hell is that about?

I am calling for the support of parents and professionals to request that proper medical and psychological investigations are conducted on all children receiving a diagnosis of autism today. Autism as defined by Kanner in 1943 is a different condition than the ones we see today in as many as 1 child in 100. To conveniently hide the true reality of the problem with an incorrect diagnosis of autism is an hypocrisy that can only delay the urgent need we have to deal appropriately with the issues.

If you are interested in supporting this action, please post a comment and contact Lorene Amet by e-mail at: Lorene.amet@blueyonder.co.uk

Thanks.

Autism Susceptibility Genes: Have Dr. Hakonarson’s findings been correctly interpreted?

2009-05-02T09:23:00.000+01:00

28th of April 2009: Dr. Hakon Hakonarson, MD, PhD, director of genomics research at The Children's Hospital of Philadelphia is leading two research published in the journal Nature, along with two other studies uncovering more clues to autism -- one also published in Nature and the other in Annals of Human Genetics. Dr. Hakonarson suggests to have identified new and common gene mutations -- also called gene variants that raise the susceptibility to develop autism.

A region of chromosome 5 that involves genes that facilitate cell-to-cell communication -- CDH9 and CDH10 was named. Other genes claimed to be involved in brain development and cell-cell interaction in the nervous system were also suggested to be potential candidates. More report from the traditional view point here.

However there are serious limitations to the interpretation of these findings.
The mentioned genes have not been identified and proven to be related to autism in the studied subjects. A duplication, or single nucleotide polymorphism does not necessarily cause a phenotype. Futhermore, the genes mentioned makes sense within a paradigm of neurological brain development disorder but we should not forget that many of these genes, e.g. cadherins, CNTN4, ubiquitin actually also have function in regulating the immune system. If these mutations are genuinely related to autism, is that because they cause abnormalities of brain development or make the individual more susceptible to insult of an immune origin? This question can only be addressed in animal model, a “Knock In”, as we call it, which replaces a gene with a potentially “mutant” version of, it in the mouse genome.

Generally speaking though, even if a developmental gene, is involved in as little as 1% of the ASD population even with as little at 1% of the overall contribution, that would be an important finding. But the point is, should a study that identify plausible cause of a condition in only 1% of individuals and that requiring huge sums of money be conducted? Isn’t it a little bit like going to the moon? And what is that for? This is where one should look behind the scene, what are the true motivations behind these studies. Sorry to say, but it has, as often, little to do with science and health.

See article from Max Blaxill on the Age of Autism that deals with this issue:

True ethical prioritization in the research in causalities of autism comes with a full account its current features: Gene- environment- involving the immune system, the gut, the behavioral features of autism, and the regressive aspects of it.

Finding genes involved in immune regulation as well as brain function is potentially very interesting. Also, finding de novo mutations, definitely suggests some environmental factors at play.

Picture of Cadherin; A proposed candidate susceptibility gene.

Outrageous Mishandling of Autistic Children in France

2009-04-27T17:21:00.000+01:00

French autistic children and adults are still widely treated as psychotic patients, in a system (universities, institutions, hospitals...) that continues to promote Freudian psychotherapies/psychoanalysis as the standard "treatments" of choice for autism.
Official bodies in charge of educating professionals/families on autism, such as the CRAs (Centre de Ressources Autisme) even offer training sessions presenting at the same level as ABA sessions, practices such as the packing of naked non-verbal kids into cold wet sheets for the sake of helping them to discover their body bounderies!

Lea pour Samy (

http://www.leapoursamy.com/) recently launched an anti-packing campaign. They energetically asked the government for a moratorium temporarily holding this practice within the French health system.The moratorium has been accepted and they are now trying to collect testimonies from international autism experts on the inadequacy of packing and the adequacy of other scientifically validated practices.

You will find enclosed some documents on the situation, as well as papers from Pr Elisabeth Fernell and Christopher Gillberg at the following address:
http://www.leapoursamy.com/rubrique_.asp?r=835 (English originals at the bottom of the page). Please forward this letter to whoever you think may accept to write something to be soon presented to the French authorities.

Documents of Interest:
visit http://www.autismtrust.org.uk/page28.html

Response from ATT:

Our charity, Autism Treatment Trust (ATT) fully supports the protest action against “packing” led by the French organisation Lea for Sami and endorsed by thousands of parents of autistic children in France. This intervention, conducted on vulnerable autistic children is outrageously inhumane. There is no research, no clinical justification, and not even a single piece of current knowledge of what autism is that justifies its use. It violates international human rights.

ATT has been involved in the medical examination of over 400 autistic children. We and others have found evidence of abnormalities of metabolic, physiological, immune, gastro-intestinal, toxicological and genetic origins. Applying outdated models of a psychoanalytical nature, which no one has endorsed since the early 70s in the rest of the world other than in France is pure blinkered barbarism.

It is time that the French medical and educational systems came to grips with the reality of today’s autism. Placing autistic children in hospitals, under psychiatric surveillance, refusing their inclusion in proper educational systems, refusing their access to medical examination
and treatments, violating their human rights and dignity, and even worse still allowing interventions such as “packing” to be conducted in hospital settings is unhelpful and has to be stopped.

The Autism Treatment Trust will support all actions against “packing” of autistic children in France and will promote the dissemination of published up-to-date knowledge of the biology of autism and effective lines of intervention.

Yours sincerely,

Dr. Lorene Amet
Autism Treatment Trust
29A Stafford Street
Edinburgh EH3 7BJ

Autism- Rise in prevalence

2009-03-22T07:35:00.000Z

Rise in autism prevalence

Data compiled from recent epidemiological studies- note that accuracy of study varies across countries. Figure 1-

Figure 1

In the 80s, official rates were round 5 children per 10,000 population (Figure 2).

Figure 2:

Incidence rates increased by 700% in children born in 1990 compared to those born in 2006. Hertz-Picciotto and Delwiche, The rise in autism and the role of age of diagnosis. Epidemiology 2009; 20: 84-90

Possible factors implicated:

1- Greater awareness and diagnosis criteria- Cannot explain the current rise. E.g. Figure 3

Figure 3: 8.2-fold increase over 1980-83 to 1995-97
Report: January 2005 - This study used current DSM-IV diagnosis criteria on historical records dating from the period 80-83. There is non the less a 8 .2 fold increase.

2- Genetic issues (Broad autism phenotype)- Asperger in the family, often undiagnosed.

Actual contribution to current rates is unknown but has been estimated at about 7%. The family history cen be seen as far as Asperger and HFA are concerned but rarely as far as regressive autism is concerned.

Many genetic studies in autism have been undertaken draining huge amount of funding. What has been found is:

• There is a higher rate of chromosomal abnormalities in a subset of autistic children compared to controls. (note this is consistent with environmental damage to genome see below).
• These include inversions, duplications and deletions visible by microscopic techniques.
• They have been found within all 23 chromosomes, but most commonly on chromosome 15 and 7.
• Based on location, a causal association might be inferred but has not been proven.
• This could account for up to 7% of cases.

Autism does not fit pattern for “classic” genetic diseases

3- What else? Genetic-environmental factors

Figure 4: The red bar represens the threshold level of an environmental insult. If the level is below toxicity, the population is spared of detrimental consequences. As the level increase, there is a progressivly greater number of susceptible indibiduals who are affected.

The response or ability to cope with toxins across the population can be modelled with a normal distribution curve (Figure 4). This is true of many types of exposure, e.g. alcohol, some individuals will tolerate it well, others will not. This particular sensitivity results from both environmental and genetic factors. This is true of most animal and vegetal species. Response to environment differ from individual to individual within the same species. Some species are more sensitive than others in a given environment. Canaries were used in the coal mines to detect rise in carbon monoxide (Figure 5). They were more sensitive than humans with regard to this factor. Their death was indicative of increased toxicity.

Figure 5

If the outcomes of rising toxic environmental factors in genetically susceptible individuals is autism, the number of affected cases would rise with the level and number of factors as shown in Figure 4.

What could these environmental factors be?

- Testosterone in the mother- Little evidence supporting the theory of testosterone being implicated in autism- see post on the subject here.

- Vaccinations: Epidemiological studies suggest no implication. We should remember that many epidemiological studies have disproved tobacco to cause cancer. Also thalidomide was not found to cause developmental abnormalities from epidemiological studies. What is needed is to investigate children and their progression in autism, not epidemiology investigations. A few cases were investigated suggesting strong correlation with vaccination, Poling, Bailey and more. More importantly, seeing parents of children with regressive autism, day after day, saying very similar stories of immediate deterioration after vaccination raised at the very least great concerns. In a group of 60 children, 18% were found to have loss and acute loss of function within 1 week of MMR (ATT report). The possible scenario of regression can take place more gradually and over a longer period of time and would not be picked up following parental account. We currently have no markers to prove or disprove of an association for cases of regressive autism with gradual and slow loss of function.

- Other factors: many factors are known to be toxic and found in increasing amounts in the environment. Heavy metals, bi-phenyls, phtalates, organo-phosphates, etc. Many are still unknown.

- Likely we have a combination of factors, again acting on genetically susceptible individuals.

- Autism is not the only condition that is found in much greater incidence; also rising are: ADHD, asthma, MS, chronic fatigue, Alzheimer disease, cancer and more.

How could these factors deteriorate development and behaviour:

A very common genetic feature in families of children with autism is a greater immune vulnerability. This is seen with increased rate of the following conditions: allergies, asthma, eczema, arthritis, MS, thyroid dysfunction (often associated with auto-immune abnormalities).

The sum of environmental factors would constitute a stress to genetically susceptible individuals, affecting either primarily their immune system, their gut or more directly their brain. It is also very likely that there will be epigenetic changes leading to alteration of gene expression (Figure 6), this could have the highest effect still on development and brain function. The common pathway of pathology amongst individuals would be the timing at which their neurological development is being affected. Studies are ongoing to unravelled each of these potential scenarios. Cascades of events leading to deterioration of brain function can be identified in animal models and consistent and testable paradigms (with each single step being documented and published in autism) have been identified supporting this theory.

Figure 6: Epigenetic in autism

Facial Expression- Theory of Mind

2009-03-02T20:23:00.000Z

Question of opinion: what does Frida Kahlo think of? What does her facial expression make you think about?

Frida Kahlo. Self-Portrait with Monkey. 1938. Oil on masonite. 40 x 30 cm. Albright-Knox Art Gallery, Buffalo, NY, USA.

Autism and Testosterone (Full response to Simon Baron Cohen's autism/Testosterone theory)

2009-01-20T08:19:00.000Z

Autism and Testosterone.

I think it is important to voice a scientific view that differs markedly from that of Simon Baron-Cohen of the Cambridge Autism Research Unit who has, according to recent media reports, been calling for a debate on pre-natal screening for autism.

Several aspects need to be taken into account in this important matter: Is the issue of elevated testosterone in autism valid? Is elevated testosterone specific to autism? What are the consequences for individuals with autism and future families contemplating pregnancy, particularly in light of recent media coverage depicting autism as a serious debilitating condition? What other issues in autism are being overlooked with the endorsement of this speculative hypothesis?

First of all, it is by no mean proven that an excess of testosterone is implicated in autism. Whilst the recent study from Auyeung et al. conducted on 235 non-autistic children suggests that there is a relationship between higher levels of testosterone and higher autism trait quotients, it should be highlighted that the quotient of autism that was measured in this study relied on the use of two parental questionnaires (the Childhood Autism Spectrum Test and the Child Autism Spectrum Quotient) and not gold standard psychometric measurements of autism, which are based on observations made by trained psychologists and paediatricians. The study seemed to rely on earlier research that suggested a link between autism and high levels of testosterone, but these were equally controversial. One type of research, also conducted by Simon Baron-Cohen, suggested that individuals with high functioning autism have a low empathy quotient, and this was attributed to excess maleness, i.e. testosterone. However, the empathy test used for these studies relied essentially on measuring empathy within a social context, which, not surprisingly people with Asperger’s are poor at, as they frequently do not have full social understanding irrespective of their empathic abilities. A second type of research, also led by Simon Baron-Cohen suggested that the ratio between the length of the second and forth digit (2D:4D) in people with autism is indicative of an abnormally high level of embryonic exposure to testosterone. These abnormalities in 2D:4D ratios have not been replicated by others, and are, at best, very indirect evidence of testosterone secretion. In fact, other genetic factors are also known to influence this ratio.

Whilst some individuals with autism may indeed have abnormal steroid metabolism, and present with excessive androgen levels, as measured in blood and urine samples, these abnormal findings appear to be by no means representative of the autistic children seen today, especially children who have experienced regressive autism, characterised by a loss of already acquired skills in the areas of communication, socialisation and behaviour. Many of these children present with a failure to thrive physically, and are often under weight and have delayed maturation, which is hardly compatible with excess testosterone.

Secondly, it should be noted that testosterone is implicated in a wide variety of biological and behavioural processes. It is required for normal development, sexual maturation and sexual activity, and in many aspects of human behaviour, in addition to being potentially neuro-protective. A study, also from Cambridge University, Published in 2008, in the ‘Proceedings of the National Academy of Sciences’, showed that males working as stock traders had higher testosterone levels. Traders with elevated testosterone were found to be more confident and have a risk-taking appetite, which is hardly compatible with autistic traits. Other studies have found that elevated testosterone increases the secretion of the non-amyloidogenic APP fragment, and decreases the secretion of Amyloid beta peptides suggesting that testosterone supplementation in elderly men may be protective in the treatment of Alzheimer Disease. It therefore seems that a pre-natal test for testosterone in itself is insufficiently specific and sensitive as a method of predicting the likelihood of developing autism.

Most importantly, it is of great concern that the studies on testosterone and autism are being misinterpreted, leading to the use of therapies aimed at disturbing steroid hormone production in individuals with autism. Currently, many autistic children may be being treated, without proof of safety and scientific and medical evidence of benefit, with a view to reducing their hormonal secretion of testosterone (Lupron Therapy, Spironolactone). The rationale behind advocating these therapies appears to be based on a misunderstanding of autistic behaviours and without systematic laboratory evidence of abnormal testosterone levels.

It is premature and ethically wrong to call for a debate on pre-natal screening with the potential for pregnancy termination when there is no sound scientific basis for the autism/testosterone and when autistic individuals instead need assistance to reach their fullest health and well being potentials. The issues of autism that urgently need addressing today concern: A) a plausible explanation for the 7-10 fold rise in autism rates seen in the last 10-15 years; B) a better understanding of the novel gut and immune pathologies identified in autism; and C) the interplay of environmental and genetic factors that are implicated regressive autism. It is also essential that more effort is made to provide better education services and improved support for families. Simon Baron-Cohen’s latest effort is a distraction from the real issues.

Dr Lorene E.A. Amet,
Autism Treatment Trust

Autism and Testosterone

2009-01-15T06:27:00.000Z

Autism and Testosterone
Letter to the Editor (Guardian)- sent 12th Jan 08

Dear Sir,
It is with interest that I read your article entitled “New research brings autism screening closer to reality” (12/1/09) calling for a debate on pre-natal screening for autism.

Several important aspects need to be taken into account in this important discussion. Is the issue of elevated testosterone in autism valid? Is elevated testosterone specific to autism? What are the consequences for individuals with autism and future parents contemplating pregnancy, particularly in light of recent media coverage depicting autism as a serious debilitating condition? What other issues in autism are being overlooked by focusing on this particular hypothesis?

First of all, it is by no mean proven that an excess of testosterone is implicated in autism. Whilst the recent study from Auyeung et al. conducted on 235 children suggests that there is a relationship between higher levels of testosterone and higher autism trait quotients, it should be highlighted that what was measured relied on the use of two parental questionnaires and not gold standard psychometric measurements of autism, which are based on observations made by trained psychologists and paediatricians. The study seemed to rely on earlier supportive research that suggested a link between autism and high levels of testosterone, but these studies are equally controversial, and have not been replicated other than by the same authors. More importantly, whilst some individuals with autism may have abnormal steroid metabolism, and present with excessive androgen levels, as measured in blood and urine samples, these abnormal findings appear to be by no means representative of the autistic children seen today, especially children who have experienced regressive autism, characterised by loss of already acquired skills in the areas of communication, socialisation and behaviour. These children on the whole present with a failure to thrive physically, and are often under weight and have delayed maturation, which is hardly compatible with excess testosterone.

It should also be noted that testosterone is implicated in a wide variety of biological and behavioural processes. It is required for normal development, sexual maturation and sexual activity, and in many aspects of human behaviour, in addition to being potentially neuro-protective. It therefore seems that testosterone in itself is insufficiently specific and sensitive as a means of predicting the likelihood of developing autism.
It is of great concern that a debate on pre-natal screening with a view to potential pregnancy termination is even being embarked upon in light of the lack of hard scientific fact on this subject.
The issues of autism that need addressing concern the urgently needed explanation for the 7-10 fold rise in the autism rate seen in the last 10-15 years and an understanding of novel gut and immune pathologies implicated in regressive autism. It is also essential that more emphasis is placed on providing better education services and improved support for families.

Lorene Amet, D.Phil.
Autism Treatment Trust

2009-01-15T06:09:00.000Z

Sensory Overload- The fear of loosing your child with autism

Video relating to experiencing a sensory overload leading to an irrepressible desire to escape...

Recorded on the 21st of December whilst waiting at the Ataturk airport, Istanbul. Also on Taksim Square and along Istiklal Caddessi.

Music: Schoenberg:Guige from Suite for Piano, Op. 25, played by Glenn Gould.

Please watch in high quality only!

http://uk.youtube.com/watch?v=XzOTQ0FZsQ0&feature=channel_page