Thursday, 19 January 2012

Autism Diagnosis Training Course


ADOS/ ADI-R Training course

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.

Sunday, 2 October 2011

Blog Site Changed


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.


Sunday, 10 July 2011

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



Autism Workshop:

Gut impairment, nutritional, & metabolic deficiencies in ASD

Professor James Adams.

Organised by Autism Treatment Trust & Autism Research Institute

Edinburgh 20th 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 20th 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
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).

Saturday, 25 June 2011

Autism linked to IT hubs?


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.

Thursday, 26 May 2011

NEW ATT web site


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



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!

Sunday, 20 March 2011

ADHD- what are the answers?


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.