Biomedical approach to autism hits the mainstream with Jenny Mc Carthy
My UK speaker’s agent and good friend was relishing a book by Jenny Mc Carthy called Louder Than Words and send me some clips of the author from an interview on Larry King Live. The DAN (Defeat Autism Now) forum has been showing ‘recovered’ children with autism for some years now, demonstrating their before and after footage of children with autism after biomedical interventions. She was asked ‘what are they like as adults’?
But apparently she hasn’t met any! I’m sure she has but they probably weren’t wearing any ‘I’m autistic’ T-shirts 
I’ve met plenty! Those with Asperger’s, sure, but also adults with Semantic Pragmatic Disorder and those with autism (who often also have APD), which can mean just about anything.
Asperger’s usually has features like inability to read facial expression or body language (as seen in Expressive Agnosia), clumsiness (as seen in Dyspraxia, including oral dyspraxia), a tendency toward obsessional interests (as seen in the extreme of the conscientious personality trait) and sometimes a great need for social acceptance and routine (as seen in the extreme of the sensitive personality trait) and a tendency to high social anxiety (generalised anxiety disorder, agoraphobia, social phobia, panic disorder), sensory hypersensitivities. If you listen to Temple Grandin, who was diagnosed with Asperger’s as an adult after an infancy in which she was thought brain damaged, most will become scientists, engineers or work in I.T. so if Jenny is looking for adults with Asperger’s, now she knows where to find them, or at least the 6% with ASD who are in full time employment (yes 94% are not).
Autism generally means a more complex, often bigger ‘autism fruit salad’; meaning deafness (verbal agnosia, auditory agnosia, semantic pragmatic disorder), meaning blindness (visual agnosia, associative agnosia), reading disabilities (dyslexia, scotopic sensitivity syndrome), poor body feedback (tactile agnosia, finger agnosia), no sense of pain (pain agnosia), poor muscle tone (Hypoonia), impulse control disorders (OCD, Tourette’s, ADHD), mood disorders (Ultra Rapid Cycling Childhood Bipolar, infant-onset depression), anxiety disorders (separation anxiety, exposure anxiety), eating disorders (anorexia, self induced vomiting, extreme self-restricted food choice), sensory integration and motor planning problems (Dyspraxia), articulation problems (oral dyspraxia), communication disorders (aphasias) and often significant gut, immune and metabolic disorders. Learned dependency is common and as the stress of challenges ups the tempo of natural personality traits, these traits can escalate into disorder proportions, complicating development (dependent personality disorder, schizoid personality disorder, etc….). It’s not hard to imagine that without significant, often life long intervention, adaptations and management for what can be in an autism fruit salad, that many of these adults aren’t going to be in the telephone directory under scientists, engineers or I.T consultants. But I’ve met some wonderful adults in this group and whilst for some the greatest achievement is just making it through the day with a smile, I’ve met writers (typing), poets, artists, singers, musicians, dancers, gardeners, one who’s a lab assistant, another who’s a chef, several who work in catering and others in sheltered employment.
In terms of autism fruit salad, I had chronic infections and antibiotics from 6 mths of age and was assessed as psychotic at age 2 in 1965 when I appeared deaf, showed no pain response and had a compulsive coughing tic which compelled me to cough until I coughed up blood. By age 3 I had mood fits (rapid cycling bipolar) up to 6 times in a day and was, in between giggles, often self injurious. By 9 I was still being tested for deafness, now labeled disturbed and my meaning deafness was finally understood and I was helped to learn functional language (previously had a massive repertoire of stored advertisements, songs, jingles) and by 11 could string relatively functional sentences together. The word autism was raised when I was 10 around 1973 but I was formally diagnosed with autism in my 20s.
I had biomedical interventions in 1972-73 when I was put on zinc, vit C, multi-vitamin-minerals as well as an anti-inflammatory and sedatives. In adulthood I tested as phenol-salicylate and gluten intolerance and severely allergic to cow’s milk, has systemic Candida, type 2 diabetes, multiple food and chemical allergies, a vitamin B12 deficiency and two primary immune deficiencies. I’ve been GF/CF, low salicylate, low sugar and on nutritional supplements for over a decade. Am I less autistic for it? The gluten effects me like a ‘bitch pill’, cow’s milk effects me like LSD and triggers rapid cycling bipolar episodes, salicylates have a cocaine like effect on me, coming off high sugar makes me behave like a craving addict. So, yes, I’m less ‘autistic’, but it wasn’t my whole picture and many of my interventions are not biomedical ones and just as important.
It’s one thing to talk about what’s being done to people’s bodies through environmental toxins, bad diet, over vaccination etc… but keep in mind that there is psychological, emotional and social diet too and there’s a hell of a lot that negatively effects people with ASD and contributes to their challenges which needs just as much intervention - social ignorance, bullying, ridiculous and damaging stereotypes, inflexibility of schools and workplaces which make healthy access or inclusion sometimes impossible…the list goes on, in epidemic proportions.
Did vaccines overwhelm my immune system setting off a cascade of physiological breakdowns which were associated with or worsened my sensory perceptual, cognitive or other systems? No, but measles probably contributed. I got them at age 2 and still had them in my 30s when the immune deficiencies were finally treated. Are there ‘many roads to Rome’ whereby there’s a range of means by which gut/immune function can collapse? I think so. Is this the case for all people with autism or ASD? No. Are biomedical interventions harmful? When medically supervised, done sensibly at safe levels in brief trials, probably not. Then if they dramatically reduce functioning challenges for people, could these trials be extended under the same conditions. Why not. What if they are lifelong interventions?
Those with phenylketonuria who used to develop extreme mental retardation and autism before dietary intervention and now its diagnosed at birth and their diet is life long and on the diet they don’t develop those problems. Are there other predispositions to gut/immune/metabolic disorders which can be set in motion by environmental assaults to immune function? Probably. But there are ‘many roads to Rome’ and this will only be the road for some. Is that an excuse to say ‘it doesn’t work for autism’? Well only if you buy the idea that autism is one thing in all people with it. That may make a good fundraiser, allow money spinners to sell one-size-fits-all products and services but personally, I don’t buy that. Autism is a fruit salad of many different sizes and varieties and approaches need to be tailor made to the individual who is not just a walking condition, but a whole bunch of personality traits and history which make each unique PEOPLE. Like very different doors, we all have slightly different (often sets of) keys.
autistic author and autism consultant
Hi Donna
Just wanted to say really enjoyed this article and I’m in total agreement to what you say, its great to know their are other positive role models out there. Would love to link up to your web site, please email to let me know if ok
Hi Alyson,
Donna *)
welcome to blogville.
sure, link to my site any time.
Yes, very relevant, perceptive and timely piece Donna.
My son Mark, also suffers from ADHD, and is on a low dose of dexamphetamine. This enables him to concentrate and focus at school.
He also has OCD issues, and can become quite anxious at times too.His regular aide just had two weeks off school, and he was pretty upset about it.The teachers at the school however, did not realize it though, as he never mentioned his aide’s name at all.
By the end of the first week without her, he had a full blown screaming tantrum. The deputy principal(who is a lovely lady)had to help calm him down.
Talking to the teacher later I explained what I thought the problem was.
Mark loves Maria(his aide) and always talks about her. However when she went away he never mentioned her once, at school or at home.
This was highly unusual, as he loves her!
I believe even though it was explained to him, that Maria had gone on a holiday to see her father, that he resented her for not being there with him.
As he found it hard to articulate his feelings, it was bottled up inside him.Hence the big blow up on the Friday afternoon.
After discussions with the teacher we decided it would be a good thing if everyone talked about Maria with Mark, encouraging him to speak about her and reassuring him that she would be back on Monday!
Maria even emailed some holiday pics together with a message for Mark.
(Coincidentally, she had emailed me the weekend of Mark’s blow up and I had filled her in on what had happened and what I perceived to be the problem.)
You should have seen his face light up when he saw her pictures.
This, coupled with a different approach at school seemed to do the trick. His behaviour improved, and no more tantrums too.
” Autism is a fruit salad of many different sizes and varieties and approaches need to be tailor made to the individual who is just not a walking condition, but a whole bunch of personality traits and history which make each unique PEOPLE.”
You are SO right on the money Donna!
Asperger’s usually has features like inability to read facial expression or body language
I’m sorry, but you are confusing inability with having a deficit or deficiency in ability to do so. This isn’t to say that there aren’t people with autism/aspergers who are completely unable, but there is variation in ability amongst the group or groups that you are speaking of.
If you listen to Temple Grandin, who was diagnosed with Asperger’s as an adult after an infancy in which she was thought brain damaged
If I am not mistaken, she was diagnosed with Kanner’s or autism, not brain damage. Unfortunately, I no longer have a copy of Emergence with me.
or at least the 6% with ASD who are in full time employment (yes 94% are not).
I’d like a reference to that statistic. Not that I can count on a good study as of yet, since we still have yet to know exactly how many people with autism and/or asperger are truly out there.
Agnosias are equally on a spectrum and can be more or less severe and have a range of underlying causes, some of them will sort or be adressable, others won’t.
Temple herself says she was diagnosed with brain damage at age 2. At that time she struggled to pronounce words and had tantrums and sensory hypersensitivities. A speech therapist addressed her articulation issues so she was able to speak by age 3 and a half. In childhood, Temple attended a school which took emotionally disturbed children and her mother found she fitted a DSM checklist on autism. As an adult she got a formal diagnosis of Asperger’s but because her speech was late (3 and a half, fluent by 4), and because Asperger’s wasn’t known of in the English language until the 1980s and not mainstream until the 1990s, Temple’s mother identified her as autistic.
The testing results for those with significant language processing disorder are distinctly different from those for people with AS and this is what distinguishes the source of late language onset as the results of significant language processing disorder (seen in Autism) are still present in high functioning adults. This was why my diagnosis in adulthood was autism, not Asperger’s. If you read up on test difference in written/verbal language processing in autism (including Semantic Pragmatic Disorder) versus Asperger’s you’ll see the differences.
The stats re employment are Australian figures, not sure if it’s replicated globally.
I can try and source it for you.
Agnosias are equally on a spectrum and can be more or less severe and have a range of underlying causes, some of them will sort or be adressable, others won’t.
I was not speaking of Agnosia, but those with Asperger’s in general. If I am not mistakem, you said those with Asperger’s were inable, or at the very least implied. Some people with it may also have Asperger’s, but it’s important not to confuse correlation and causation.
As for Temple, I remember a somewhat different history. I’ll take a look at her first autobio again, and the one of her mother’s. I don’t consider Grandin herself to be a highly trustworthy source, and I think she changes facts and makes untested claims to fit her viewpoint. But I’ll do some digging despite that.
I was diagnosed with ADD and HFA, but now I suspect the ADD part may of had something to do with Celiac. I’m off gluten now, so I’m a lot less easily distracted (that being said, I have yet to be diagnosed, on the other hand I feel a lot better and somewhat different than I used to now).
I also feel like adding something here in regards to diet and behavior, which I feel should of been added with my first comment. I think a lot of the connections between diet and behavior have less to do with the prevelance of it in those with autism and ADD, but that those with it have more obvious behavioural differences once they’re off the offending foods. There has been a lot of research out there out of late about junkfood and its negative affects on children, and now that it also turns out that Celiac is still under-diagnosed to the point of dangerous levels makes me wonder about the actual rates of people with actual disorders, rates of misdiagnosises, and so forth. What is needed is a well funded study that deals with as many variables as possible, but I’m not holding my breath. Who knows, I might change my major to nutritional anthropology in order to try to figure this one out.
Oh no, not at all. I far from see those with Asperger’s as inable. I find it outrageous that such a high percentage of capable people are unemployed especially those at the Asperger’s end who often have such wonderful intellect and can mentalise (I have my skills but I struggle to hold two concepts in my head… I use rocks, toothpicks, anything, to mentalise externally to compensate).
I was rather surprised to read Temple cited recently as having sensory perceptual disorders. I understood she found scratchy petticoats impossible as a child and struggled to understand her parents’ dinner party chatter when she was 3. But sensory hypersensitivity (however challenging) is about problems of TOLERANCE levels more than sensory perceptual issues are and are world away from being unable to process a face or body as a whole, or have significant meaning deafness so getting meaning from written or verbal communications keeps one with the receptive language processing of a 4 year old. I was tested for deafness at 9 when my family finally understood I was meaning deaf. As an adult I’ve been diagnosed with a severe language processing disorder (in addition to my autism) and a visual perceptual disorder.
Significant face blindness means most people appear interchangeable and feeds social phobia. Being context blind and not seeing objects as a whole until my 20s means I can’t think in pictures or do complex mentalising in my head. Not being able to see people as a whole when up close means I don’t know where touch is coming from so can panic. Sure, if Temple lives that world, shout it from the rooftops honey, but sensory hypersensitivity is totally different to sensory perceptual disorders. Sound isn’t just ‘too loud’, with language processing disorder then after the first 5-10 min a dinner party sounds like a chicken coop with all the voices tumbling and develops a progressive echo chamber effect which freaks out not the ears but the nervous system. It’s a whole different space…. similar ain’t same. It’s like saying that every person who can’t understand speech is deaf… just plain ignorant. And that ignorance can be damaging especially when a qualification in animal handling (animal husbandry, cattle slaughter) is put forward to the general public as DOCTOR because most people in the street will presume a psych doctorate, a medical one or at least zoology… and Temple has done little to clarify that yet I’m sure she knows most will presume that Dr means DOCTOR not PhD in something with no relationship to psych, medicine, neurology etc.
One can have sensory hypersensitivity without significant sensory perceptual disorders (though having sensory perceptual disorders leads to sensory flooding which can mean sensory hypersensitivities as well) so one should talk about what one knows.
Good luck with gluten free. I’m GF/CF and low salicylate. I found the salicylate part fed the attention and visual fragmentation issues and upped tempo on anxiety and bipolar stuff in my case.
you’re so right what you say re diet… its a PERCENTAGE for whom these things make stuff worse. I’m in that, sure you are too, but Temple for example has her level of functioning with no dietary interventions and is doing fine.
you are so right that actual numbers need to happen but most of all we need to stop this idea of autism as ONE thing or they’ll waste funds forever seeking the ONE answer which helps ALL on the spectrum and the fruit salad thing doesn’t work that way.
Re Temple’s PhD and it’s relevance to autism:
“Dr. Grandin is a designer of livestock handling facilities and a Professor of Animal Science at Colorado State University. Facilities she has designed are located in the United States, Canada, Europe, Mexico, Australia, New Zealand, and other countries. In North America, almost half of the cattle are handled in a center track restrainer system that she designed for meat plants. Curved chute and race systems she has designed for cattle are used worldwide and her writings on the flight zone and other principles of grazing animal behavior have helped many people to reduce stress on thier animals during handling.
She has also developed an objective scoring system for assessing handling of cattle and pigs at meat plants. This scoring system is being used by many large corporations to improve animal welfare. Other areas of research are: cattle temperament, environmental enrichment for pigs, reducing dark cutters and bruises, bull fertility, training procedures, and effective stunning methods for cattle and pigs at meat plants.
She obtained her B.A. at Frankin Pierce College and her M.S. in Animal Science at Arizona State University. Dr. Grandin received her Ph.D in Animal Science from the University of Illinois in 1989. Today she teaches courses on livestock behaviour and facility design at Colorado State Univeristy and consults with the livestock industry on facility design, livestock handling, and animal welfare”.
from http://www.grandin.com/
Donna,do you see a great deal of difference between HFA and Aspergers?
My son’s speech pathologist, conceeded that he met the criteria for HFA but further said that:
” given his greater ability in expressive , than receptive language skills and the fact that his language does not meet the criteria for being delayed, he is likely to present in the future with features more consistent with an Aspergers Syndrome diagnosis.”
The paediatrician agreed with the HFA diagnosis, but not Aspergers.
There was disagreement between the two as to what really constitutes a language delay I guess.
Would appreciate your thoughts Donna.
Yes, in terms of functioning levels someone with HFA can function around a similar level to someone with Asperger’s.
But the strengths and weaknesses are different
so the person with HFA will usually have such significant written and verbal RECEPTIVE processing challenges that they are less likely than most with Asperger’s to work in jobs requiring extensive reading or where they have to follow written or verbal instructions.
Those with significant receptive language problems have difficulty mentalising internally even though they may become good at expressive language and can use external tools to do some complex mentalising. there’s often also significant difficulty visually processing objects, contexts, faces and situations.
by contrast those with Asperger’s may struggle more with the expression and reading of emotion because the person with language processing disorders has usually learned to compensate by acutely mapping shifts in people’s tone and movements even if they also can’t read facial expression or body language.
There is also less implication of personality in HFA as the diagnosis of autism is based more on language processing disorders than personality features. Where in Asperger’s, it’s often down to the manifestation of personality traits far more.
I can hang out with my Aspie friends but my receptive language processing skills are often too simplistic to sustain complex conversation although, with effort, I can track their speech using objects on the table to ‘peg’ key concepts and order the objects to capture conceptual relationships. At the same time I’m more emotionally expressive than most of my Aspie friends although I tend to appear rather blank when listening or watching due to the receptive processing struggle… again similar ain’t same.
generally I function in the mild-moderate area. But in testing, yes, I didn’t fit Asperger’s because of the significant struggles with receptive written and verbal language.
Language delay alone doesn’t mean language processing disorder. Oral dyspraxia can mean articulation problems delaying speech, Selective Mutism is part of an anxiety disorder and learned dependency can also lead to late speech. Again, similar isn’t same. One of the problems is SPIN. That those who’ve spoken by 3 or 4 years old continue to latch onto this as proof they had autism rather than Asperger’s. A severe receptive language processing disorder doesn’t disappear at 3 or 4, even though it may decrease, and it will still be present on testing an adult with history of LDP in autism.
> Hi Donna,
> A wonderful grandmother on my autism-homeschooling listserv recently reported on a conversation with her grandson where she showed him your book “Autism: An Inside Out Approach” and said that when you were little you couldn’t talk or something like that and that you had autism but now you have Aspergers and she detailed many of the wonderful things that you do as an adult.
> Anyway, this grandmother is amazing and clearly, like I am, a fan of yours as she has brought you up in numerous threads and brought up topics like exposure anxiety. If I remember correctly, however, you don’t like to consider yourself as having Aspergers (please correct me if I’m wrong!) and I think I remember all the reasons why. My question is, would you like me to/do you think it is appropriate for me to correct this incredibly dedicated grandmother on how you don’t like to consider yourself Aspergers. Or should I just let it go. If you would like me to correct her, is there something very simple that I can just nicely quote to her or is there a link I can send her to that further explains your feelings on the matter.
> I hope you’re doing well!
Hi,
I was assessed as psychotic at age 2 in 1965, then still tested for deafness at age 9. I was echolalic since 18 mths and by 9 had a vast repertoire of jingles, songs, advertisements and strings from TV which I used as self directed and later other projected expression.
I developed functional speech between age 9-11 after language was slowed, simplified and gestured for me, however I was nervous of using this new system so experienced some episodes of Selective Mutism as I settled into this clunky system but by age 13 could do litanies and by 17 had around 50% functional speech mixed with 50% of my old ‘Donna Speak’.
I was diagnosed with autism in my 20s. My IQ at that time was under 70, in the mildly mentally retarded range. This was due to severe written and verbal language processing problems and inability to work well visually with meaning. Because of this my diagnosis as an adult was autism, not Aspergers. I also have a diagnosis in adulthood of a visual perceptual disorder and a severe receptive language processing disorder.
I have checked with the psychologist who diagnosed me, a man with 40 years experience diagnosing people on the spectrum and one of Australia’s leading experts, was he sure I didn’t have Aspergers. He confirmed that it was very clear I did not have Asperger’s.
Your friend may understand better if she looks up Semantic Pragmatic Disorder. The test results for these people is significantly different to those with Asperger’s, as is their language history. Most people with autism also have Semantic Pragmatic Disorder. I can function as well as some people with Asperger’s and have some strengths most of them don’t have and some weaknesses many of them don’t have.
Your friend can call me Asperger’s just the same as she can call me a rabbit.
But I am what I am. I am someone with autism who now functions in the mild-moderate range after a vast range of interventions.
I’m not in the severely autistic range but began in the severe-moderate range, moved into the moderate range by mid childhood, then into the mild-moderate range by my teens and adulthood. Perhaps the best way to view me is someone with severe sensory perceptual disorders, co-morbid mood, anxiety and compulsive disorders, gut, immune and metabolic disorders present since early infancy, who responded autistically to these challenges and has treated, managed and found adaptations to that range of challenges so now functions far better than I once did.
Sometimes the world isn’t black and white, it has all kinds of greys too.
… Donna Williams *)
You mention Semantic Pragmatic Disorder Donna.
It is not a term that is used much in Australia, I find.
Funnily enough, just before my son turned three,I thought, after much research, that he had semantic pragmatic disorder.This was prior to his official dx.
This was pooh poohed by the speech pathologist.
I still reckon he has semantic pragmatic disorder..
However , I am no professional.He does fit the criteria though, in my opinion.
it was once thought that Semantic Pragmatic Disorder was a separate condition but the National Autistic Society UK now reads that most people with SPD have autism (one can have it without autism) and that autism itself always involves SPD. Also SPD can be severe, moderate, mild as can autism, so contrary to the stereotypes of SPD people with SPD and autism are not necessarily HFA.
Speech therapists traditionally worked with oral dyspraxia (the sort of speech impediments Temple Grandin had in being able to say ‘bah’ but not ‘ball’).
Cognitive and educational psychologists generally work with SPD in those with autism, as traditional speech therapy is more limited there.
Dear Donna,
Slowly, very slowly like clouds in a slow motion folks appear for the dinner club. That’s just and update.
But since you give a very detailed bio profile, and some like b. sharp are scientifically inclined to uncover new things…
I think the unemployment has to do with one small thing. Spectrum folks have difficulty telling a lie, even a white lie. And that as we know is fatal in getting a job - the first step being an interview.
Here is an excellent article, you might want to run a separate post. If so, I’d be ever so interested for all the comments, as this puts me a lot of things in a morally interesting and challenging perspective:
people on the spectrum are diagonal opposites to pathological liars who cannot tell but lie. spectrum people on the other hand are unable to lie, due to grey-to-white matter ratio and the role of the pre-frontal cortex. I am sure you’ll find it fascinating.
http://www.freerepublic.com/focus/f-news/1504096/posts
I can say I haven’t known autistic kids to lie.
but I have certainly known sociopathic teens and adults with ASD
and I have also worked with a few who’ve been compulsive liars
(not good ones, hence their issue was so obvious).
lying can be a rote learned behaviour - ie say opposite
and can be an anxiety response.
Some have learned to lie as a result of bullying and abuse.
Some have grown up around carers modelling this so that by their teens and adult years they have grasped the pattern.
Most people with autism, even if they can tell a lie, may not receptively process when someone tells them a lie.
If a person with autism is abused over many years when telling the truth,
they could eventually learn to say the opposite.
I was taught to recite a false address in order to get me into my 3rd high school due to time off having emotional breakdowns.
When put through a role play of being asked my address, I was slapped hard every time I gave the true answer.
After an hour of this, I began to recite the false address.
When in trouble for autism related behaviour challenges at the new school
I was grilled for my address.
I began the first word of my true address
then I felt as if I’d been slapped
and gave the rote learned false one I’d been taught to recite.
Clearly, an autistic person can lie.
I find lying traumatising, obviously
and senseless.
Although if one is in extreme danger, lying may well be a sensible thing to survive.
I’d hate to be in that position.