When my little boy lost his ability to speak at the age of 6 years old, becoming withdrawn within 2 weeks, unable to function at school, being overwhelmed in most public settings, he received, plugged out of the air, the magical diagnosis of autism.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.
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interesting article. I do contend, as you probably know, that the autism's of Einstein and other historical figures is a myth. I believe it is unethical for clinicians to diagnosis historical figures posthumously whom they have never met. This behavior is not unique to Michael Fitzgerald. It has also been done by Simon Baroh Cohen, Laurent Mottron and possibly Tony Attwood (though I am not sure about Attwood). I am not even sure Baron Cohen is a clinician of any sort who would be required to be licensed here in the USA, though i don't know what the laws are in the UK regarding practicing psychologists.
ReplyDeleteSome of these might be cases of childhood disintegrative disorder rather than autism per se if the regression took place at age 6 to 10. Perhaps you should rule out CDD in your son and in those others as well as herpes encephalitis.
Yes, PLEASE. SOMEONE needs to inform people that about 75% of the diagnoses of autism today are false.
ReplyDeleteIt is SO hard to get treatment and any kind of help. The disabilities and special needs boards are swamped with "autism" cases since the diagnosis is made in every 8 year old child who sorts their skittles by color and likes Japanese animation.
I'm 21, have severe autism with a high IQ and can't get help anymore since I'm an "adult." The preference is always given to children, even though an "autism" diagnosis is made because they have difficulty paying attention in school.
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ReplyDeleteThanks- I'll update on progress later. Yes Childhood Disintegration Disorder would be a better descriptive diagnosis though it does not tell me much either. Working on a video on this at the moment. Soon to follow.
ReplyDeleteI agree with Stephanie that adults with Autism are not been given the services and education they need to move forward. It must be very frustrating to be brushed aside so much and this is what is planned for our children wrongly diagnosed with autism. It is a sorry state of affairs.
ReplyDeleteStephanie
I would get in touch with your social services and demand an assessment from them of your needs as an adult with Autism
Our son was rapidly slipping down the curve of the spectrum. Luckily we did biomed testing to discover he had lead toxicity, dientamoeba fragilis in his gut and a loaded bowel. Two years on he is now a loving and caring, switched-on kid with lots of friends and escalating confidence. I feel every child should have this chance so they can all reach their potential.....
ReplyDeleteAutism, Dyslexia, Attention Deficit Disorder are all potential pitfalls when a child doesn't have proper child development. I think all families should be wary of this.
ReplyDeleteInteresting that you have come around to my view on Donna Williams, you were very resistant when I initially gave this opinion to you. She is not autistic and never was. Her writing is the clearest clue because it reveals a thought process, a process that is not autistic. You are more autistic in your thought process than she is.
ReplyDeleteEventually I did process the information you gave me. It took me a while. So it seems for you. Counterweighted aerial hoop act http://www.youtube.com/watch?v=laVB2UW3X3c
ReplyDeleteDonna Williams is so non-autistic I cannot even understand/comprehend what she writes, and I have autism.
ReplyDeleteDoes she really expect people to believe that a person with severe autism with an IQ measured below 70 (as she claims both) can write books such as "Exposure Anxiety" and "The Jumbled Jigsaw." I tried reading these books but they are WAY too complicated for me verbally.
Also, her artwork isn't autistic, either. Look at the artwork of a person with autism (like mine) or Stephen Wiltshire or Jessy Park. You can tell that the artwork is "autistic." Look at Donna Williams's art. It is clearly not done by an "autistic savant," which she claims to be.
Artists with autism typically use lots of lines and shapes, go from part to whole. Her paintings don't do that.
Donna, I am expressing an opinion that appears to have been discussed for a long time on forums. I understand these matters might upset you but I would suggest that you address the points made by the abc.net report with relevent personalities rather than with me through repetitive threats. As far as I am concerned the matter is closed. I am focusing on other more important autism issues. Lorene Amer
ReplyDeleteI see that you are now receiving the same threats of legal action that Ms. Williams hurled towards me. "Big Autism" (i.e. moneyed-autism and its lucrative paydays) is threatened when the "wizard" (Donna Williams) behind the curtain is revealed. Ms. Williams is a fraud and seeks to protect her racket through empty threats of legal action. If one is really autistic, they have no need to try to "prove" they are autistic.
ReplyDeleteFor Ms. Williams, perhaps you should try and threaten Fred Volkmar of Yale University, the pre-eminent autism expert. Afterall, he was the first to believe and state publicly of his doubts on your diagnosis.
I can tell Ms. Williams this. Her days of performing in "black face" (the minstrel show of autism) are coming to an end. A Tsunami of criticism is on its way.
Thanks Annon, good suggestions. I believe I received similar threats. I would invite intersted reader to view Donna Williams 's blog on diagnosis section for her view on the diagnosis validity. A few family members signed form that prevents them to take legal actions against the content of Nobody Nowhere book.
ReplyDeleteI am interested in Stephanie’s comment about Donna Williams having an IQ of below 70. I recently heard Wendy Lawson speak and she told us she also at one time had been given an IQ of less than 70. Now she has two university degrees, is studying for a PhD, and has written seven books. A recent IQ test gave her the result of 80 +!!
ReplyDeleteSurely either their method of testing is way off the mark - or what they regard as 'intelligence' does not apply to everyone. When I was at school it was reasoning power they were measuring as an indicator of 'intelligence' or intellectual ability. Yet my friend was a gifted artist and a voracious reader, and did not score well in the 11 plus. [She was reading Dante’s Inferno when she was 15]
Perhaps there are different kinds of intelligence - maybe that's something they do not take into account in these IQ tests whether for autistic people or others. Reasoning power is only one facet of intellectual ability I would think. And maybe reasoning power is something autistic people aren't good at since they can't project or grasp the cause and effect concept?
Janette,
ReplyDeleteYes there are different types of intelligences, verbal, non-verbal, visual, and more. In my opinion, IQ tests are very limited, they tend to be used to justify a change of placement for an individual. Often that change is not for the better, limiting further the range of opportunities and chances of inclusion. Jonathan Mitchell on his blog www.autismgadfly.blogspot.com has covered recently the issue of reliability IQ tests in autism (last 1-2 months), and you might like to search his blog for this if you are interested. Stephanie had posted on the subject there too.
Update:
ReplyDeleteMs. Williams is very concerned over any criticism of her. I see that she has tried in a very weak and vain attempt to contact Dr. Volkmar whom not only didn't affirm her diagnosis but gave her a rather curt response. I've never seen someone so concerned about maintaining her act. I suspect she won't like what is coming. It's time that Ms. Williams was challenged and exposed. Too many parents have been harmed by this person. Karma is what you sew. The fact she has so much at stake in protecting her persona is a fascinating thing to observe.
The American Psychiatric Association defines Personality Disorder as the following (which I think is clearly on display): an enduring pattern of inner experience and behavior that deviates markedly from the expectations of the culture of the individual who exhibits it". These patterns, as noted, are inflexible and pervasive across many situations, due in large part to the fact that such behavior is ego-syntonic (i.e., the patterns are consistent with the ego integrity of the individual), and therefore, perceived to be appropriate by that individual. The onset of these patterns of behavior can typically be traced back to late adolescence and the beginning of adulthood, and, in rare instances, childhood.
http://blog.donnawilliams.net/2009/05/12/after-13-years-of-pain-dr-fred-volkmar-replies-to-donna-williams/#more-809
Yes I agree what Fred Volkmar says does not say anything regarding Donna William’s actual diagnosis other than what we and others have reported. There is inconsistency of reports of people who have known Donna before and after publishing her book Nobody Nowhere. Also inconsistency of presentation- with great mind awareness with un-matching unusually severe autistic behaviours. Stephanie’s comments on her art work are also very relevant and I would agree with her observations entirely. I will develop this at a later stage.
ReplyDelete"Does she really expect people to believe that a person with severe autism with an IQ measured below 70 (as she claims both) can write books such as "Exposure Anxiety" and "The Jumbled Jigsaw.""
ReplyDeleteIQ tests are inaccurate.
"......I tried reading these books but they are WAY too complicated for me verbally."
That's because you are spatially/visually intelligent rather than linguistically intelligent.
"Also, her artwork isn't autistic, either."
......................WHAT?! What the shit are you talking about? The artwork isn't "autistic"? What the hell does THAT mean? How can you telll that an artpiece is autistic? That's fucking stupid!
So what's your criteria for artwork to look autistic?
"Look at the artwork of a person with autism (like mine)"
I've seen it and it's a lot more abstract and weird than Donna's. In other words "it's not autistic enough" (joke).
"...or Stephen Wiltshire or Jessy Park. You can tell that the artwork is "autistic.""
NO. YOU CAN'T! Their work is amazing and they have an extraordinary gift and yes, we do see their world through the artwork, but as an artist as well, I can't tell the difference between autistic art or non autistic art (same with bipolar people, schizophrenics, people with personality disorder, etc, etc, etc).
"Artists with autism typically use lots of lines and shapes, go from part to whole. Her paintings don't do that.""
EVERY ARTIST USES LINES AND SHAPES AND GO FROM PART TO WHOLE, YOU AMETEUR!!!!! Besides, you are not an expert on art nor an expert on autism nor an expert on autistic art, so how the hell do you know this shit?!
The answer is that you DON'T know!
Anon, I have decided to publish your post for the sake of fairness of expression- In the future, please try to argue your points with information and less unprovoked emotions. Also, why don't you publish under your own name, if you have something to say to balance Stephanie's views because you feel you know about art and autism, please explain this more clearly, for everyone's benefit. It is a good topic for debate, but we need information not angry opinion coming out of nowhere. Thanks for your consideration
ReplyDeleteDonna William, author and alleged autistic person is NOT autistic! Amazing how gullible the autism community is! How embarrassing. And then there's jenny mccarthy, that sort of actress comedian...whatever...her child is NOT autistic either. Nor are half the darn kids diagnosed with autism these days..the word autism is being tossed into a black hole..it's not a spectrum anymore..it's become a total mess and absurdity....go to you tube and see autism and self injury to see a severe case of autism that is real autism folks, as blogged by others..
ReplyDeleteAnon
ReplyDeleteI have published your message despite the anger that is attached to it- because I still think you have some good points here- Donna Williams is pretending, as of for some of the kids who are diagnosed today with autism and then improve through biomedical + intervention, to the point they are coming out of their initial diagnosis, they might never had had autism in the first place yes, though in term of behaviour, their condition once fitted to the diagnosis criteria. The question remains: what is autism? I know which videos on YT you are referring to and I agree also this is more serious and should receive fuller attention.
I know for a fact that Donna isn't an autistic. In the eighties when we dated, we sat at the back of the movie theater as we watched Rain Man. She quipped to me about the genius of the movie as I gazed into her eyes.
ReplyDeleteAs we french-ed in a dark section of that dingy local movie theater, and she scrubbed my throat clean as though she were searching for buried treasure, she then whispered into my ear those words "97X, BAM! The future of rock and roll".
Go to YOU TUBE and type in
ReplyDeleteautism spectrum seems out of control
a mom posted a video about the spectrum morphing into something she sees as an epidemic of misdiagnosis she has a severely autistic son with self injury and seizures also posts videos of this on her site kgaccount on youtube
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ReplyDeleteYes I am aware of this video, and I agree it serves a good purpose, though the figure of 1% of severely autistic people within the spectrum is unknown. From my experience it is a lot more than 1%. The problem with the ASD/ Autism diagnosis is not so much that HFA are mildly affected compared to the LFA, it is more that it is misleading no to specify individuals beyond this because it leads to misconception and not recognizing their specific needs. To suggest that only SIB/LFA have true needs by comparison to AS is not going to work either. The issues are simply different but both need recognition. As for Donna Williams, her recent videos singing etc are just even more illustrative than ever of what is really at play with her.
ReplyDeleteAutism? I too, sometimes question whether autism in and of itself exists. It seems that everything, based on behavioral symptoms get lumped into one category. Severe mental retardation, although I hate that term, gets diagnosed as autism based on symptoms rather then for what it is. Food allergies and intolerances that display similar symptoms get a diagnoses of autism. Tuberous Sclerosis gets a diagnoses of autism if the symptomology is present. Fragile X, is diagnosed as autism, rather then for what it is. It's no wonder there is no known cause, or cure if it can't even be established as to what it is. I agree that way too many are being diagnosed, and that it is completely diluting the term. Including my son, who was diagnosed on the spectrum in '07. Although he would be considered high functioning, I could only begin to dream that one day he would be able to articulate as well as some on this blog. He can't tell me how angry or frustrated he is, what he did throughout the day, or even that he feels unwell, instead I get to hear about every movie character, their names and the sounds they make daily, all day. If I had the kind of money it takes, for all the expensive testing for toxicities, food intolerances, you can bet your booty I would have done that long ago. Maybe we wouldn't be where we are today!
ReplyDeleteThanks for writing this comment Sarah, we agree on this entirely. Good luck supporting your son.
ReplyDeleteI've been looking for info on Autism: What the hell is that about and luckily I ran into your blog, it has great info on what I'm looking and is going to be quite useful for the paper I'm working on.
ReplyDeleteBTW is crazy how many generic viagra blogs I manage to dodge in order to get the right site and the right information.
Thanks for the post and have a nice day
I came across your YouTube video while researching Childhood Disintegrative Disorder. Did your son ever receive a diagnosis of CDD? I understand it is considered by some to be an autism spectrum disorder. There is a student at the school where I work who presents very similarly to your son. He also showed a profound regression in communication skills at age 6. One year later, he has not changed much. How is your son doing today?
ReplyDeleteThanks for this- yes CDD would fit better, but it does not mean that it tells us what happens- the true diagnosis is the actual medical cause for the breakdown. Here is a little video that retrace all history till now- It does not work on YT because of the music copy rights- daft.
ReplyDeletehttp://www.vimeo.com/23650738
He has been diagnosed with Lyme disease, that might play a really big part in his shut down. Life remains very uneven and very hard for him and us as a family. But I am taking all sort of medical advice and follow all the leads we have. I am determined not to let this go unaddressed. Thanks for your comment.
As a person officially diagnosed with Asperger Syndrome, I met Donna Williams in person and I'm very convinced that she doesn't have Autism (ie faking it), or that she's exaggerating her traits.
ReplyDeleteShe said things that contradicted herself and/or were medically inaccurate. She said that she has Dyspraxia and can't recognize faces (Prosopagnosia) so she recognizes people through their movements and voice, and she learns actions/verbs by movement and hand signals. Yet she is able to perform the physical process of purchasing train tickets, walk safely in the subway station with no awkward gait, and she is more verbally fluent and "smooth" than me (English is my 1st language) which is extremely unusual for someone with Dyspraxia as they'd typically have difficulties stringing multiple long complicated sentences. But she doesn't know the sequence of opening a tin can despite saying that her husband "guides" her the sequential steps numerous times, with the assumption that she forgot the steps even though she said she learns by movement and not by pictures (unlike Temple Grandin).
She also said that at the age of 47 she is still unable to fill a bathtub with water without the water spilling out (not being able to switch off the taps). I find this extremely hard to believe and inconsistent given her motor/verbal coordination level at the train station and in the train, reduced sensory issues in a bathroom which causes less panic, and also by the fact that she has sufficient Executive Function to coordinate her thoughts to write numerous eloquent autobiographies and "ASD guides". By age 47, I would've expected her to compensate by using her learning style (through movements, taught by her husband) and adequate Executive Function to create a 1 page step-by-step task plan to fill the bathtub with water to a certain level and then turn off the taps (using her "dyspraxic" hands) on time.
Btw I also have huge trouble understanding her books (eg Exposure Anxiety and Everyday Heaven) despite my Verbal IQ being 125. Both of those books clearly aren't written in an Autistic style, ie in a blunt, direct, factual/declarative style (ala Temple Grandin, Daniel Tammet, and the fiction story "Curious Incident of the Dog in the Night-Time"). An alternative explanation would that she altered her writing style to suit Neurotypical readers (and not ASD readers), which would require a LOT of "internal translation" ability (hence verbal memory and Executive function), which would still be inconsistent with her being unable to fill a bathtub appropriately.
(For the Dyspraxia and Prosopagnosia) I asked her what her MRI/fMRI results were like, and she said they were "normal" but she had Gut and Immune issues. This I also find very hard to believe as Dyspraxia is often associated with an altered Cerebellum.
She also claimed that Temple Grandin doesn't have Kanner Autism (and that she herself does instead) because supposedly according to Temple Grandin's very first biography "Emergence: Thinking in Pictures" (1986 version), she took part in activities at ages 3-6 which indicated an advanced Theory of Mind. I haven't read this book so I can't disagree, although I think this would be very hard to believe as well as Temple Grandin stated that she got bullied a lot in school and had difficulty understanding the motives of other classmates and coworkers (at the shaughterhouse), and had to deduce such concepts in a logical, algorithmic fashion.
If Donna is truly non-Autistic and has DID along with other factitious/personality disorders, then I hope she apologizes to the rest of the ASD community for tricking everyone. Because as far as my know, my meeting and conversation with her indicated many contradictions.
Yes agree with this all- thanks for sharing your experience. Temple Grandin's Emergence label autistic and later books strongly suggest a Kanner type autism at the base- details of the assessment questionnaire E2 completed by her mum are given in the book.
ReplyDeleteI have recently had a very nasty interaction with Donna Williams, and she sent me a vicious, spiteful and nastry email in response to my one-line note sending her love and support for her cancer treatment. I am not alone in this, as it has happened to several women who were friends with her husband before he married her, but I have rapidly come to the conclusion that anyone that obsessed with maintaining her public image (and suppressing any criticism- comments on her blog are strictly moderated), is not autistic. Has anyone else on here seen this nasty side of her?
ReplyDelete