7854 posts in CT’s history, and “virtually none”:https://crookedtimber.org/?s=autism written on autism. I think we are missing an opportunity here, to talk about something most people have no clue about, while chances are real that they have non-diagnosed people with autism in their families, neighbourhoods or professional circles. April 2nd was International Autism Awareness day, but since I was leaving that day for a family holiday, the post that I wanted to write arrives only now.
Autism is “a spectrum of neurodevelopmental conditions, characterised by difficulties in the development of social relationships and communication skills and the presence of unusually strong narrow interests, and repetitive behaviour”, according to the definition given by “Cambridge University’s Autism Research Centre”:http://www.autismresearchcentre.com/arc/default.asp. People with autism process information differently than ‘neurotypical’ (read: ‘normal’) people: they see a myrad of details rather than the full picture, they are often only able to understand spoken or written language in a very literal sense, and are often unable to interpret information in its specific context. People with autism often also have oversensitive senses: they see, hear, smell and feel much more, or much more intensively, than people without autism. And they have very strong interests, sometimes really obsessions, about particular things: cars, techniques, trains, computergames, particular music, physics, metaphysics…
These information processing conditions have potentially far-reaching social and behavioural effects. People with an autism condition have difficulties filtering the information that they receive. Yet the more information you have to absorb, the more effort and time it takes to process that information. People with oversensitive senses, including the large group of people with autism who also have this condition, are therefore much faster exhausted than other people. They also have more difficulties concentrating, since they are absorbing much information that they don’t need for the task at hand (so one thing teachers of children with autism do, is to put them at separate desks, away from the other children. Adults with autism often have a strong need to regularly be on their own).
In the social realm, people with autism often do not understand what is expected from them: they cannot ‘read’ between the lines, ‘read’ body language, ‘decode’ cryptic language, and so forth. People with autism have difficulties with recognising emotions, and with being able to understand the perspective of another person. Empathy doesn’t come naturally to them (though they can learn it to some extent, but even that takes a lot of effort).
Some experts on autism have used the metaphor of a computer: the autistic brain processes information like a computer, taking every ‘input’ literally, unable to interpret it in its context or to decode the subtext. No surprise that one typical piece of advice given to parents and coworkers of people with autism is to work with clear, predictable rules, lots and lots of structures, and stick to them. But this aspect of their information processing also explains why people with autism often have a special talent: they can memorise details which ordinary people often can not, or they have a ‘photographic’ memory whereby they print everything that catches their eye as a photograph in their memory, which they are able to retrieve seemingly without any effort at any later moment. They also often have a talent to see details which other people don’t notice, which explains for example why they are valuable workers in the computer software industry, since they catch errors that others don’t spot.
Autism is not an illness, and therefore cannot be cured: if you are born with this condition, you have it for life. But if autism is diagnosed at a young age, then parents, teachers and other educators can adapt their style of interaction and education, limit the amount of sensory information that they have to process, and learn them, step by step, those aspects of social and emotional intelligence that do not come naturally to them. Autism is often labeled as a social disability.
In contrast to many other disabilities, autism manifests itself in an myriad of ways. There are at least three reasons for this. Firstly, the common aspects of autism are at a relatively high level of generality or abstraction, but concretely manifest themselves very diversely. Many people with autism look totally ‘normal’/’ordinary’, and only when interacting with them for some time does one start to observe strange manners or modes of interaction. Secondly, autism comes in different types. A commonly made distinction is between classical autism, which is characterised by language delay and often a below-average IQ, Asperger Syndrome, which is characterised by no language delay and on-or-above-average IQ, and PDD-NOS, a mixed bag of vague variants (There are a few other labels that I won’t introduce here now). So among the people with autism are highly intelligent but seemingly ‘weird’ people, but also severely disabled people who cannot care for themselves and often suffer from other mental problems as well, such as anxieties or phobia. Thirdly, as Simon Baron-Cohen (see his brief and very lucid introductory book ‘Autism and Asperger Syndrome
So no surprise that it is so difficult to recognise autism for the untrained eye, and that there are so many undiagnosed cases of autism. I dare to bet that most of you know at least two people with autism, but you may not know who they are. People who have autism but don’t know that they have it, often feel misunderstood and mistreated, have many misunderstandings that are often interpreted as misbehaviour or as bad behaviour, have social and relational problems, and are more likely to lose their jobs. Within autism self-help groups and organisations, there are ample stories around of adults with autism who suffered from such problems, had problems throughout their lives, and only when they were finally diagnosed with autism did they understand why they had been for years in this unhappy situation where the entire world seemed to be against them. But by that time, much damage was done that could have been avoided if they had been diagnosed at a younger age.
About one percent of the population has autism, and the large majority are boys and men. Simon Baron-Cohen “claims”:http://bjp.rcpsych.org/cgi/content/abstract/194/6/500 that for every three children diagnosed with autism there are another two undiagnosed. I really feel very sorry for those kids. Chances are real that their lives are difficult or even miserable, because they are seen as ‘difficult’ or badly behaving children, resulting into an overdosis punishment, whereas what they really need is a total overhoal of the way their parents and teachers treat them. Chances are also real that they need to get out of those primary school classes with 25 to 30 kids, and move to an autism-friendly class where one has one teacher for just a couple of children. Chances are real that their parents will have lost all their patience with this difficult child, whereas being patient and staying calm is one of the most important ingredients in raising a child with autism.
Until October 2008, I knew nothing about autism. I thought I didn’t know anyone with autism. Then, one day, my husband and I were told by the manager of the creche of our oldest son (then almost three) that the behavioural problems and stress which he had shown for months, and which we had been trying to solve, could be due to him having an autistic condition. I was utterly surprised: autism, in our family? I didn’t know anyone with autism – only Rain Man
I think there are many people like me, who simply had no clue, until an event happened that forced them to inform themselves. One reasons why we need something like Autism Awareness Day is precisely because a majority of people, including many very intelligent and socially concerned people, have no clue. And it is not difficult to see why, as I explained above. It has little or nothing to do with not caring about people with autism, but all to do with the difficulties to recognise this disability. Therefore I think it is very important that we start speaking publicly about autism, not just among ‘specialists’ and ‘parents’, but among the wider public. We need to inform ourselves and others, to raise awareness, to create a more autism-friendly world, and to avoid that many more lives of people with undiagnosed autism will be made unnecessary hard.
{ 63 comments }
OneEyedMan 04.09.10 at 8:39 pm
“Autism is not an illness, and therefore cannot be cured: if you are born with this condition, you have it for life. ”
I don’t understand the difference you make here between a condition and an illness, would you please elaborate?
gmoke 04.09.10 at 8:52 pm
Paging Michael Berubé, professional dangerist. The reasonable accommodation rather than the cure.
Temple Grandin, the animal behaviorist who credits her autism with allowing her to understand animals better, believes that autism can be an advantage rather than a detriment.
Here is her recent TED talk:
http://www.youtube.com/watch?v=fn_9f5x0f1Q
Here is her three hour In Depth feature on Book TV:
http://www.booktv.org/Program/10695/In+Depth+Temple+Grandin.aspx
joel hanes 04.09.10 at 8:59 pm
The writings of Oliver Sacks on Temple Grandin changed my understanding.
OneEyedMan 04.09.10 at 8:59 pm
I don’t see how having it be an advantage would be enough to not make it a disease. Sickle cell anemia sometimes helps but is treated as an illness by the medical community. Or what about morning sickness?
I also don’t understand what incurable would mean here. I presume that autism has physical causes and therefore could addressed and prevented from reoccurring with sufficient medical technology. I understand that autism could be a healthy form of natural variation and therefore we might not want to cure it, but I don’t understand why it should be intrinsically incurable.
James D. Miller 04.09.10 at 9:18 pm
You wrote “But by that time, much damage was done that could have been avoided if they had been diagnosed at a younger age.”
Since (to the best of my knowledge) there are not any studies on the long term effectiveness of early intervention for autistic children, we don’t know if this is true.
Society is willing to spend huge sums on early intervention but seems uninterested in finding out if it is of any value.
Substance McGravitas 04.09.10 at 9:42 pm
Some studies, including a long-term one. Not a disinterested source though.
Anderson 04.09.10 at 9:48 pm
Thanks for the post, Ingrid. My then-4yo was diagnosed with some sort of autism last May. We really have no idea what to expect for him, but we’re getting him all the therapy we can, working with him ourselves, and hoping for the best. Best wishes to you and your family also.
Anderson 04.09.10 at 9:50 pm
Society is willing to spend huge sums on early intervention but seems uninterested in finding out if it is of any value.
I don’t see how we’re going to determine the value without spending the huge sums first. The issue is too indeterminate for small studies to be persuasive.
Adam Kotsko 04.09.10 at 10:09 pm
Society is willing to spend huge sums on early intervention but seems uninterested in finding out if it is of any value.
Every day, the internet reminds me that there remain people whose thought processes are completely incomprehensible to me. I’m not sure this is even wrong, properly so called — I literally don’t know what would lead one to say this, and so don’t know what it means.
mcgowan 04.09.10 at 10:30 pm
May I recommend Randi Davenport’s “The Boy Who Loved Tornadoes,” a wonderful memoir about an autistic son, just published by Algonquin Books?
James D. Miller 04.09.10 at 10:39 pm
Adam Kotsko
Let’s say there is a condition C and possible treatments X, Y and Z. There is some justifiable belief that treatments X, Y or Z will in the long run improve the welfare of people with condition C. Yet it’s possible that none of the treatments will in the long run be effective and if the treatments are effective the optimal combination of treatments is clearly unknown. The government pays lots of money for people with condition C to receive various combinations of treatments X, Y and Z. Yet no rigorous studies of the effectiveness of treatments X, Y or Z have been undertaken even though the cost of a few extensive studies would be tiny compared to the sums already being spent on treatments X, Y and Z.
harry b 04.09.10 at 10:59 pm
Is it really the case that no studies are being undertaken? This would make treatment of autism unique among treatment of common conditions and diseases. I googled and came up with lots of results, but my children are fighting so I can’t follow up right now.
Substance McGravitas 04.09.10 at 11:03 pm
No, but it complicates things that “no treatment” control groups are unconscionable.
Matt 04.09.10 at 11:04 pm
I’d guess it’s not very important(*), but it seems that the guy that Rainman was based (mostly) on wasn’t actually autistic, but had some other brain problems (including having no corpus callosum, among other things) and that his problems and skills were rather different from most autistic people.
http://en.wikipedia.org/wiki/Kim_Peek
(*)it might be mildly important insofar as many people, including me, until recently, thought that the real guy was autistic, as opposed to just Dustin Hoffman’s character in the movie being said to be autistic. In addition to the normal dangers of using a movie as a guide this could be especially misleading, as the model for the movie didn’t even have the problem he was widely supposed to have, perhaps leading people to have even more false beliefs about autism.
Janice 04.09.10 at 11:46 pm
I think that one of the most useful metaphors to use when speaking of autism is the spectrum. We are all on that spectrum in some ways, but people like my younger daughter exhibit enough clear and sometimes problematic differences that they evoke uneasiness in others.
She speaks a little too loudly and with a lisp, but then will speak with great authority about different types of penguins or television idents from long-vanished British stations. Almost my height, she seems taller than me when we walk side by side if she’s not wearing the orthotics made to curb her toe-walking. And no one in the family likes to think back on the day we found the living room floor covered with bloody streaks from where she’d rubbed the skin off her toe tips from obsessive dragging. Unlike Temple Grandin, she’s not very visually oriented, although they share a craving for tactile comfort that my daughter recreates through rolling up in a comforter tight against her torso.
One book that I found most helpful in understanding autism, from my perspective as a parent and historian, was Roy Richard Grinker’s Unstrange Minds: Remapping the World of Autism as he tackles the issue both over time and across cultures, as well as from the perspective of his own family’s experience with autism. There’s an excellent NPR interview with Grinker from 2007 that gives you a good idea of what he’s done with this.
Good luck to you, Ingrid, and your family. Since 1998, when our babysitter suggested we screen our daughter for autism, we’ve been deeply affected by autism. Like you, I see it manifesting in the world around me, both overt and undiagnosed. And we work to make sure that our child can do as much as is possible with the help of schools, medical professionals and those around who care and contribute to her quality of life.
Bill Snowden 04.10.10 at 12:10 am
I acknowledge I don’t know what I’m talking about, am cognizant of the real risk of being and appearing to be a hard-hearted ignorant prick, and do not dispute autism is a real phenomenon; that having been said, the spread of ‘spectrum’ diagnoses is worrying to me. The follow-on to awareness raising here includes earlier diagnosis, diagnosis of subtler and subtler border cases, and creeping self-diagnosis and self-identification, all of which lead me to wonder to what extent we may be reifying and medicalizing a complex of behaviours and experiences without being sure of the utility of or justification for doing so. Hate to be the one to say this, am not a troll, and wish my disclaimers above taken at full force.
laura 04.10.10 at 12:55 am
I don’t know about Europe, but they are phasing out the Asperger’s term in the US and just calling everything autism.
So, you’re very new to this diagnosis. I am very impressed that you are taking everything calmly and have accepted the news so quickly. Good for you! Maintaining normality and remaining positive is so important.
I liked your description of autism as having too many of certain puzzle pieces. It works because two kids can both have autism, but have different puzzle pieces and, thus, appear so different. My kid has superior visual-spacial abilities, extremely poor expressive language skills, sensitivities to touch and taste, and trouble with transitions.
Remaining calm is everything. When your son is having problems coping, you have to detach yourself from the situation and never challenge him. Just let him get through it. And remember that every year will be a huge improvement. More on the blog. E-mail me if you have questions.
Zora 04.10.10 at 1:31 am
Reading Goleman’s Emotional Intelligence was an eye-opener for me; I realized that I had very little. Later, a psychologist diagnosed me as having borderline Asperger’s.
I have many of the puzzle pieces, but not enough of them that people immediately think that I’m Aspie/autistic. They are much more inclined to think that I’m being willfully obtuse. Why CAN’T you look me in the eyes? Why CAN’T you figure out what I want, without my having to tell you? Why CAN’T you remember faces very well? What the hell is wrong with you? You’re exasperating. Unlovable. Unemployable.
I’m doing somewhat better now that I know there’s a problem. If I keep in mind certain guidelines for social interaction, and take my time to think through difficult situations, I can simulate normality most of the time.
vivian 04.10.10 at 1:43 am
Thank you, Ingrid. We got the word a few years ago, and it takes some adjusting, but (if you keep away from the science haters and trolls) there is a lot of concrete, practical help available, often in schools to teach social skills. Among the less pleasant parts of being an “autism spectrum parent” is that the kids on the spectrum are… not so good at giving positive feedback so you know when you’re doing a good job. So it’s hard to tell when the child is overloaded by an activity (in which case you want to stop for a while) or reacting to the novelty (in which case you want to keep on) or just upset at something completely unrelated. So there’s a lot of guessing and hoping involved. Taking Laura’s advice is not so easy, but really really helpful. One of the best parts is that all of the spectrum kids I know are warm and loving and rather witty – even the nonverbal ones.
As a non-utilitarian philosopher, I find the usefulness of behaviorism is a source of amusement and food for thought. So far, it’s pushing me further towards pragmatism, but I really look forward to hearing your thoughts on this over time. (And if you can convince Harry to tackle the special-ed side of educational philosophy, then I will be doubly delighted.) Good luck with this, and do please keep us posted on your thoughts and experiences, and feel supported.
Anderson 04.10.10 at 2:46 am
Miller’s viewpoint is shared by many insurance companies, but it’s relatively new for autism to be diagnosed so young; it may take a generation to find out, but autism presents so many ways, it’s hard to gauge what works.
AaLD 04.10.10 at 2:57 am
We have a 10-year old autistic son, so I’m aware of autism every day. But before he came along, I knew practically nothing about it, so I appreciate you’re posting this.
I have mixed feelings about all the new efforts on early intervention. If it works, it will be great for those younger children and the ones yet to be born. But what is left for older autistic children like my son? And what about those autistic adults who have already grown up when little was known about it? Instead of more help for them, I see cash-strapped states cutting back services. Is that what the future holds for my son?
Anyway, good post.
dilbert dogbert 04.10.10 at 5:35 am
We were told to place our son in one of the state hospitals and get on with our lives. This was around 1966. We didn’t and that decision had a huge impact on me, my wife, our other children and of course our autistic son. What we lived through did not make us better people. The only good result is that our son now has a job, friends and lives semi independently. If we had placed him with the state I am sure he would be a semi vegetable in a ward somewhere.
With our autistic son out of the family; myself, my wife and our other children would have had a more normal life. How does one balance the good and the bad of a decision like that? The lives ( comfort, family solidarity and mental health) of 4 people were sacrificed for the sake of one. Now I am glad we made that decision but for about 30 years it seemed like the wrong one.
The take away from my story for those newly facing the autism of a child is: there will be change, slow; not steady, not always in the direction you wish and what you are coping with now will not be what you have to cope with later but there is is hope.
I hope you are stronger and better able to cope with the demands of an autistic child and your normal ones better than I. I hope also that you get better support for your child than we did. Some of the “helping professionals” were less than helping.
Sandrine 04.10.10 at 5:58 am
Thanks for posting on this, Ingrid. It was autism awareness day last week and it’s good that philosophers are posting on this too. One thing that struck me is that you mention the fact that there are probably lots of undiagnosed adults on the spectrum out there. There are also diagnosed ones, of course. I wonder how well they cope in their everyday life, when their parents are no longer around to drive them to special classes, practice social skills with them, reassure them when they go on sensory overload, etc. Sure we know of people like Temple Grandin, but she is a very high functioning autistic. My concern about my son, and his friends at special ed., is that despite all the great help they’re getting now, they’ll still have a hard time later on. As you say, it is a life condition. So I’d like to see more written in public fora by and about autistic adults.
Btw my post for autism awareness day is here: http://bit.ly/atK9if
Aulus Gellius 04.10.10 at 6:26 am
“Autism can be compared with a puzzle of 100 pieces: every human being has 10 to 20 pieces in their character, but people with autism have many more (say, 60 to 90), and have a few crucial ones – the corners and the pieces that form the frame of the puzzle.”
This makes a lot of sense and I’ve wondered about it (I have very little direct experience with autistic people myself). But could anyone be clearer (or do we know) about how fully the spectrum is filled in? That is, are there a significant number of people with, so to speak, 21, 22, 23 pieces, and so on up through 59? Or is it pretty polarized, such that you can definitively distinguish between people who are autistic and people who are neurotypical?
ejh 04.10.10 at 7:45 am
I’m very sceptical that people are talked of as “having” Apsperger’s, which seems to me tio be a description of symptoms rather than a thing in itself. There was a long period in which practically everybody was getting told they “had” Asperger’s, and while it can be very psychologically helpful to be told this (I score 39 on Baron-Cohen’s test and hence am in a position to know) I’m not sure that it is hepful, in the long term.
There has been some work done on Chess and autism.
Nicholas Whyte 04.10.10 at 7:47 am
All three of my children have autism diagnoses. The oldest and youngest (both girls, aged 12 and 7) cannot speak and are not toilet trained. Our oldest now lives in permanent residential care, as she was simply too disruptive at home. I hadn’t especially noticed Autism Awareness Day because I am aware of it all the time.
Ingrid, you and I are lucky to live in Belgium (or at least in Flanders), where the system is generally very good, and for children of more or less normal intellectual ability (like my middle child) teachers are trained to spot it early and help is available; my son (aged 10) is now in his second year in a special education school this year and should return to the normal system next year.
I have no sympathy with the various snake oil treatments which play on parents’ sense of guilt and powerlessness. We did try a month of excluding dairy products from the diet of our eldest at one stage; all that happened was that she got grumpy because there was no cheese.
And finally, I also have no sympathy with those who are unaffected personally by autism and whine about over-diagnosis or query the value of early intervention. Children need help, and if resources permit, much better that they get more help than they need than less.
Chris Brooke 04.10.10 at 10:15 am
Thanks for this post.
Cian 04.10.10 at 11:53 am
Justin,
I’ve come into contact with kids with fairly bad aspergers as a volunteer, and there was definitely wrong with them. I’d be hesitant to place them on the autistic spectrum, though, simply because too little is known about what autism is and what causes it. Mostly it is just theories which lack data to really back them up properly. The diagnosis processes don’t seem like the most robust in the world, either. And yes, skepticism about the diagnosis rates in the UK seems reasonable. Aspergers is, apparently, the new dyslexia.
Nicholas: The trouble with early intervention is that much of it hasn’t been properly evaluated, and there’s a history in Intellectual Disability of inappropriate, or damaging, techniques being used. Though you could say the same about education generally I guess.
novus homo 04.10.10 at 1:02 pm
Maybe it’s just the circles I run in, but it is scarcely my experience that “most people don’t know” about autism. To my mind it’s become something like the ADD of the decade (not saying that pejoratively).
Ah 04.10.10 at 1:10 pm
I’m a researcher on the theoretical end of autism research so I hope I can contribute a couple of points. First, there is now one double-blind study of the effectiveness of autism early interventions (Dawson et al Paedatrics 2010) which found that the intervention did help. This is the first study to properly test any behavioural intervention but I’m sure there will be more. Second, read Baron-Cohen with a pinch of salt. He has a very high profile but a lot of his more recent ideas on gender aren’t properly tested. I second the recommendation on Grinker and also suggest Uta Frith’s book gives a sound introduction to the science. Finally, while autism isn’t curable (because there is a genetic component and you can’t change your genes) that doesn’t mean it is unchangeable. Children with autism can and do learn and develop and live fulfilling lives – they just do so differently.
Tim Worstall 04.10.10 at 2:15 pm
“But could anyone be clearer (or do we know) about how fully the spectrum is filled in? That is, are there a significant number of people with, so to speak, 21, 22, 23 pieces, and so on up through 59? Or is it pretty polarized, such that you can definitively distinguish between people who are autistic and people who are neurotypical?”
Using Baron Cohen’s ideas (which 30 has just told us to be very careful of) the spectrum is complete, yes. Quite where the line should be drawn for a diagnosis of autism (or Asperger’s, or autism spectrum etc) is the problem. What is above called “classic autism” might be (to pluck random numbers, just to make the point) 70 or 80 pieces. Aspergers 50, autism spectrum 40 and so on. And yes, having zero of the pieces would also be a problem, even if a different one.
B-C also goes on to make a number of other points: the increase in diagnoses is partly because the definition was expanded (in the US, in the early 80s) from, using those made up example numbers, from 80 to 40. But that’s not all, he also goes on to state that it is increasing “really” as well. He doesn’t rule out environmental causes but thinks that the most likely is assortative (or assortive) mating. If it is genetic and those carrying the genes are more likely to have children with each other than in the past (lots of maybes there) then that seems logical.
kid bitzer 04.10.10 at 2:24 pm
ah @ 30–
so there really is a genetic component? what does the evidence for that look like? do we know the site? know the alleles? is there a test?
or is the genetic claim more of an inference? (not a bad word in my book–lots of stuff is inferred). and then on what basis?
alex 04.10.10 at 4:44 pm
Is anybody “normal” any more? Between the autistic spectrum and the narcissistic personalities, the bipolarities and the sociopathies, the anxiety neuroses and the OCDs, the body dysmorphias and the eating disorders, the ADHDs and the MEs, what percentage of the population is left not subject to some potential medicalisation?
I ask this not because I think any of these diagnoses are “wrong”, but precisely because the apparently accelerating spread of them leads me to wonder if “normal” is, in fact “normal” in any sense, statistical or otherwise.
polyorchnid octopunch 04.10.10 at 5:17 pm
My son’s autistic. Here’s my personal take on a lot of this stuff. First, autism treatment is not a medical issue, it’s an educational one. Autism isn’t something you have, like leprosy, say… it’s something you are.
The genetic claim is by inference, though there is a lot of research going on to attempt to turn it into specific knowledge, but simply put autism runs in families in such a way that a genetic component is an inescapable conclusion… while it may not be all genetic, there is absolutely no doubt that genetics plays a major role. My family has participated in numerous genetic studies (mostly centred around Dr. Fombonne and the Montreal Children’s Hospital) and I’ve gleaned a lot of what I know from discussions with the various doctors and researchers we’ve worked with.
Substance… you’re going to find that a lot of people with autism in their families are going to want to punch you out (and I’m not speaking metaphorically here) for talking about research in that way; the historical approach to dealing with people on the spectrum has been banishment, shunning, tormenting, and warehousing them… often with the “but these people can’t be helped” as the reason why they should be treated no better (and oft a lot worse) than cattle. Ah is 100% correct about the point that autistics learn differently. novus homo… it’s the circles you run in… and maybe you think you know a lot more than you do. Take an actual autistic child to a public park and watch how other kids and parents interact with them. The fact that a lot of people know the word autism doesn’t mean they’re really aware of it. If I had a dollar for everytime a parent pulled one of their kids away from my son because they thought “il est un imbecile” (my son lives in Quebec, Canada) I’d be rich. When I hear a concern troll here in Canada talking about “whether it’s justified to spend money on those people” my main reaction is to repeatedly kick them in the head with my steel toed Grebs and then suggest we shouldn’t bother taking them to a hospital since now that they’re brain damaged it’s no longer worth treating them.
My main hope for my son is that he be able to become self-sufficient… my dream is that he become able to deal well and effectively with his fellow human beings, and be able to fall in love, have a family of his own… but at minimum I’m very much hoping that he’ll be able to avoid the fate of institutionalization, because the simple truth is that those places have a very poor track record and helping the people warehoused within them.
Joely 04.10.10 at 5:45 pm
kid bitzer, I was diagnosed with Asperger’s last year after my son was diagnosed with PDD-NOS. There was certainly a lot of assumptions about heredity in the tests and interviews we both went through – both psychologists were interested in the scientific qualifications and musical abilities of my relatives on both sides. I understand the genetic test for children in the womb that people are talking about uses collections of genetic data from families with an autistic child – ie there is no specific site; it’s just supposed to guide people to early diagnosis.
Anderson 04.10.10 at 6:21 pm
I’m finding the comments really helpful, esp. Ah and Polyorchid. Thanks to all.
Paula Casal 04.10.10 at 10:26 pm
An old friend of my family, Teresa Ubeira, runs a school called El Pelouro in Caldelas de Tuy, Spain. The school specialises in teaching autistic children alongside non-autistic children, and is in a little village containing an old abbey and beautiful buildings, which my mother helped design and restore with the children needs in mind. It also has land for organic agriculture, and the children grow food and cook. Apparently contact with nature and animals increases their connection with the world. There is no religion but they made an enclosed Japanese garden with a little pond where the children go to think and feel relaxed and safe. Teresa once asked me to reply to Sylvester Stallone who had requested information for his autistic son. There were stories of other wealthy families offering large sums to anybody who could cure their son – a risky idea as the child could suffer a succession of inconsistent and wrongheaded techniques. A condition which is not a disease can still worsen or improve. Temple Grandin is one example of the latter, and I have heard of other cases in El Pelouro.
I recently read Louann Brizendine´s The Female Brain, and she writes that “the testosterone-formed boy brain simply does not look for social connections in the same way a girl brain does. In fact, disorders that inhibit people from picking up on social nuance – called autism spectrum disorders and Asperger´s syndrome are eight times more common in boys. Scientists now believe that the typical male brain, with only one dose of X chromosome… gets flooded with testosterone during development and somehow becomes more easily socially handicapped. Extra testosterone in people with these disorders may be killing off some of the brain’s circuits for emotional and social sensitivity.†( p. 47). A few pages earlier, she explains that, “until eight weeks old, every fetal brain looks female – female is nature´s default gender setting. A huge testosterone surge beginning in the eighth week will turn this unisex brain male by killing off some cells in the communication centers and growing more cells in the sex and aggression centres. (p. 36).
Could this be the reason why many autistic children display (more or less extreme) tendencies typically associated with boys rather than girls, regarding, for example, language acquisition and capacity to be completely absorbed in one activity or computer game? I have heard that some conditions involving lack of connectedness have been successfully treated with oxytocin. But I have not heard of hormonal treatments for autism. I would be interested in learning more about this.
Nix 04.11.10 at 12:30 am
As a longtime lurker diagnosed with strong Asperger’s about fifteen years ago, in my late teens, I thought I could possibly comment.
ejh@25 said
Well, yes. That’s the nature of most syndromes in the sphere of mental health; their causes are uncertain, and they may well be an umbrella label for a vast collection of semirelated deficits and variations, shading back into the realm of normality. It doesn’t mean they don’t exist: it just means the universe does not conveniently sort itself into categories for the convenience of humans.
kid bitzer@32, the genetic claim is rather more than by inference now. Several changes have been identified which account for several percent of autism each. But, yes, the estimate of 90%+ genetic influence for autism, while fairly solid, is not direct (very little is in this field, the brain being as complex as it is). Nonetheless, so far there has been no evidence that I am aware of to back up Baron-Cohen’s ‘extreme male brain’ hypothesis. I’d suggest a much simpler cause of higher incidence in males: that some of the genetic factors implicated in autism are situated on the X chromosome. That alone would suffice, because females are of course X-chromosome mosaics and so would usually have a normal X chromosome in half their cells, including half their neurons. Lots of genetic conditions are like this, but we don’t call them ‘extreme male’ conditions: they’re just boring old sex-linked conditions.
More and more research is indicating that the underlying problem in autism may well be copy number variations in numerous places on the genome (places where normal people have some number of copies of a gene, but get too many — or, in other places, too few — and you get a higher chance of getting autism): a recent article, with citations of many others, is here. There is even some evidence that autism and schizophrenia may be inverses: in some loci, if you have a lot of copies it increases your chances of getting autism; too few, and the likelihood of schizophrenia goes up; in other loci the opposite seems to be true. There appear likely to be somewhere between dozens and hundreds of associated loci, many not on genes but in regulatory regions or at other unknown areas outside coding regions of genes. Note that with that many loci, it would be astonishing if some were not on the relatively large and well-populated X chromosome. (There are none on the Y, but that’s not surprising as the Y is a genetic wasteland with only something like forty working genes.)
(This sort of geekery is what happens when someone with Asperger’s focuses on biology. My apologies. :) )
btw, I’ve noticed very few people mention one overwhelming effect of autism: fear and stress. My entire life has been structured around minimizing the effect of stress (social and otherwise), keeping the demons of fear at bay, and retaining control whenever possible over as many aspects of my life as I can. When I’m not frightened, life is pretty good: but it takes very, very little to get the fear machines whirling again. As for stress, the only time I’m not stressed out is when I’m unconscious. (Many years ago we tried hypnosis to fix that. Bad idea. Loss of control leading to panic attack.)
As for possible causes of this fear overload, there have been autopsies showing hyperconnectivity in the amygdalae of teenage/twentysomething autistics, and reduced neuron count in older autistics. The authors of one paper I read on this speculated that it may be due to the neurons firing too hard due to hyperconnectivity, then killing themselves through firing too hard for too long… as far as I’m aware, a tendency to constant fear through a firing-crazy amygdala is not exactly a typical trait of ‘extreme males’.
I’m lucky: I’m relatively high-functioning. For me, the joy-of-pattern has led to a job in the City well-paid enough for me to live a pretty happy life: I have books and the net and autonomy/predictability, and I don’t really need anything else. This is not true for a lot of autistics: many to most of us (75%? 95%? I hear many figures, all different) don’t have jobs, perhaps having focused on something people aren’t interested in paying us for. I can’t imagine how horrible it must be to be stuck in some institution, without control, with everything that happens being at the whim of some external entity. I suppose it must be a predictable life. That’s something, I suppose.
Nix 04.11.10 at 12:36 am
Paula: Brizendine’s claim that the male brain gets ‘flooded with testosterone’ due to having only one X chromosome would be a very sloppy way of putting it (and thus unsurprising for Brizendine IMHO). All living humans have only one X chromosome active in each cell. The source of testosterone is of course not in the brain at all :)
Have any studies been done on rates of autism in the female half of fraternal male/female twins? That might give us some actual evidence.
There’s been more evidence of hyperconnectivity in autistic brains than of lack of connectivity, but not much of either. This is still fairly embryonic, and getting info on connectivity in brains without killing them was difficult until very recently.
vivian 04.11.10 at 1:15 am
er, on Brizendine, read Marc Liberman on Language Log.
Substance McGravitas 04.11.10 at 2:03 am
That would be me. Not sure what I wrote is so objectionable, because I’m all in favour of my government throwing a ton of money at my kid for programs that I believe are supported by research. She is, I believe, on the road to independence thanks to early intervention and therapy (therapy that keeps her mom and I in the poorhouse).
Matt 04.11.10 at 3:33 am
Following Vivian’s advice, I did look at the language log posts. They really should be looked at by anyone with sympathy towards Brizendine, I think. The posts, and some of the linked reviews, provide good evidence that to call her views doubtful would be to give them much too much credence.
daelm 04.11.10 at 7:02 am
http://mjane.zolaweb.com/OL.html
http://mjane.zolaweb.com/diff.html
daelm 04.11.10 at 7:03 am
sorry for the opacity – the two links are two (very good ) articles from an insider perspective. the first especially.
Tim Worstall 04.11.10 at 8:59 am
“A few pages earlier, she explains that, “until eight weeks old, every fetal brain looks female – female is nature´s default gender setting. A huge testosterone surge beginning in the eighth week will turn this unisex brain male by killing off some cells in the communication centers and growing more cells in the sex and aggression centres. (p. 36).”
This is roughly Baron Cohen’s idea again (whether independently arrived at or not I’ve no idea). The proximate cause is a bolus of testosterone acting on the foetal brain (this bolus being much larger than the “normal” male one). The ultimate cause is genetic.
kid bitzer 04.11.10 at 11:53 am
nix@38–
manythanks for this.
“copy number variations in numerous places on the genome (places where normal people have some number of copies of a gene, but get too many—or, in other places, too few—and you get a higher chance of getting autism)”
that part sounds like huntingtons disease. there’s a gene that everyone has, which repeats a particular trinucleotide sequence. most folks have 28 repeats or fewer. if your repeat count is in the 30s, you’re at some risk for late onset hd. if it’s in the 40’s and above, you will get hd. if it’s super high, you’ll get juvenile onset hd. horrible, horrible disease.
Wendy 04.11.10 at 4:25 pm
nix@38: “btw, I’ve noticed very few people mention one overwhelming effect of autism: fear and stress. My entire life has been structured around minimizing the effect of stress (social and otherwise), keeping the demons of fear at bay, and retaining control whenever possible over as many aspects of my life as I can. When I’m not frightened, life is pretty good: but it takes very, very little to get the fear machines whirling again. As for stress, the only time I’m not stressed out is when I’m unconscious. (Many years ago we tried hypnosis to fix that. Bad idea. Loss of control leading to panic attack.)”
This is what petrifies me the most. My son was diagnosed at age 7 last year with AS. His expressive language is limited. He can talk your ear off about lots of stuff, very little of which involves how he is feeling. Everyone mentions how happy he seems a lot of the time, but I can’t help worrying that is all a mask. And he’s only almost-8. How can I help him if I don’t know when he’s feeling stress?
ah 04.11.10 at 4:30 pm
39 asked for evidence for twin studies, and yes, some of the best evidence we have for the genetics of autism comes from twins studies. The TEDS project at Institute of Psychiatry in London has tracked 3000+ pairs of twins since birth (they are now about 11 years old). They found strong (from memory, around 65%) heritability, see Ronald, Happe & Plomin (http://www.ncbi.nlm.nih.gov/pubmed/16048517) for details.
And I’d like to add that almost the whole of Brizendine consists of gross overgeneralisations for which there is only flimsy evidence (or none). A systematic study of gender differences in how people do different tasks found only tiny differences (mainly in agression). See Hyde 2005 (http://www.ncbi.nlm.nih.gov/pubmed/16173891). For an easier read, Pink Brain, Blue Brain by Lise Eliot is the only popular science book on gender which approximately gets things right.
Paula Casal 04.11.10 at 9:56 pm
Thanks for the input. I was asking whether certain symptoms associated with the spectrum of autism could benefit from hormonal treatment at any point. Some have mentioned that insufficient funds are invested in helping people with this condition and perhaps possible treatments are not investigated for this reason. Alternatively, there may be conclusive reasons why hormonal treatment is not even worth considering. But why does assuming that the ultimate cause is genetic imply that the condition could not be improved by hormonal treatment, or that hormones cannot intervene at some point as proximate causes? Excessive stress and fear can sometimes improve with hormones and the problem may fit in the Baron-Cohen-Brizendine picture, for example, if fear emerges as a consequence of misreading certain signs as threats. And even if Brizendine´s scholarship is questionable her big picture might still contain some truths.
Mrs Tilton 04.11.10 at 10:07 pm
Ingrid, thank you for posting this.
ChrisB 04.12.10 at 6:04 am
Autism is not in any meaningful sense a spectrum: it’s a cloud, and one in greater than four dimensions, overlapping a large number of other conditions and involving handwaving both in the definitions and the symptoms.
Mathematically, if you analyse the DSM-IV definition (two from column one, one from column two, etc) and do the perms and combs, there are about sixty-five thousand different ways to be officially autistic before you begin to address spectrum-related measurements such as severity.
Autism is a lot less like “having tuberculosis” and a lot more like “being like Hamlet” (or Heathcliff, or Mr. Pickwick, or Raskolnikov, or any literary figure) than the general public believes. Which makes clocking its incidence problematic, and deciding whether ABA is effective particularly problematic.
daelm 04.12.10 at 10:06 am
@wendy
“Everyone mentions how happy he seems a lot of the time, but I can’t help worrying that is all a mask”
I don’t think it’s a mask – he doesn’t know what he doesn’t know. Tony Attwood calls HFA and Aspergers ‘situational disorders’. In documentary on Clay Marzow, the autistic surfer, he made the point by claiming he had a cure for autism – put the child somewhere safe, let him be occupied in his interest, take other people away, and – voila – the symptoms disappear.
I don’t know how high functioning your son is but the basic background noise of autisitic stress can be handled for a while – it can be lived with, even. it’s exacerbated and becomes unbearable when combined with social collapses, hostile peer feedback, constant confusion about what’s required, the feeling of being rebuffed all the time, persistent unrequited overtures of friendship and the excessive, confusing, overwhelming sensory data that comes from groups of people interacting excitedly.
In terms of preparing him for that, you could start him on CBT now and help him develop strategies and routines that will stand him in good stead as he gets older and all of those situational triggers become unavoidable. CBT is excellent in that it’s a long term intervention, and therefore allows you (as a parent) to be an interactive part of the strategy making and testing – something that you probably want. It’s different to handing the child off to an expert, and wondering what’s going on.
d
Ingrid Robeyns 04.12.10 at 6:22 pm
Thanks for all the comments. I’m glad so many people with many autism-puzzle-pieces joined the conversation, and parents of course too. Laura’s (@17) made me realise I wrote an error – we in fact were told to check our son in October 2008, not 2009 (I’ve now corrected this in the original post), and we got the confirmation from the psychiatrist in June 2009.
Many books have been suggested here that I hadn’t heard of (I only just realised that in fact most books I’ve read so far have been written by Dutch-speaking writers, since they tend to be ‘practical’ books). Perhaps some of us here at Crooked Timber will read and discuss them – I am not a very regular contributor to CT (no surprise, I would think, given my more-than-fulltime job and two kids one of which is autistic/has a form of autism), but I hope to write more about some of the aspects raised in the discussion in the future.
Salient 04.12.10 at 6:49 pm
I second what Anderson and Mrs. Tilton and et al said.
Between the autistic spectrum and the narcissistic personalities, the bipolarities and the sociopathies, the anxiety neuroses and the OCDs, the body dysmorphias and the eating disorders, the ADHDs and the MEs, what percentage of the population is left not subject to some potential medicalisation?
Well, maybe normality is n-dimensional, with nobody occupying the origin (normal in every way), but for any given dimension (e.g. the autism spectrum) most people fall very close to the origin. So with respect to an identified condition, i.e. w.r.t. a one-dimensional projection, most people are normal. And n doesn’t have to be terribly large for this to be meaningful and for ‘normal’ to take on objective significance: the DSM posits n = 5, though that’s mostly an operational assertion.
It wouldn’t surprise me to learn (I haven’t looked into it) that a substantial number of people really are quite close to the origin with respect to DSM-IV — I’d be surprised to learn that, absent severely adverse environmental factors, more than say 1/5 of a given population suffers from one or more conditions enumerated in the DSM.
In any given consideration I think it’s important not to completely lose sight of ‘normal’ as ‘would not benefit significantly from accommodations x, y, z’ so that we can better isolate which accommodations would best suit those who would benefit from them. In others’ hands, the truish-truism “Everyone’s abnormal” can quickly and dangerously turn into something like “so everyone’s normal — and thus we have no special responsibility to accommodate some people in various ways.”
idlemind 04.13.10 at 9:56 am
I think one thing that tends to be ignored in conversations about autism is how it is defined by the larger culture around it, both the world of autistics and the families and professionals around them and the greater society they live in.
I’m likely on the autism spectrum as presently defined. (Like ejh, I score 39 on the Baron-Cohen test.) I’m now 54 — the ideas of high-functioning autism or Asperger’s syndrome were foreign concepts when I was a child. I was faced by my likely diagnosis (I see no utility in obtaining an “official” one) by the Asperger’s syndrome diagnosis of my 8-year-old son. The similarity between his idiosyncrasies and challenges are spookily like mine when I was his age (though it spooks my spouse, his mother, more than it does me).
Reflecting back on my childhood and comparing it to a suburban middle-class upbringing today I see some stark differences. Schools today focus much more heavily on group interaction. Classrooms are noisier. Children are monitored much more closely inside and outside of school. Many of the coping mechanisms I employed as a child, such as wandering around the neighborhood alone for hours at a time, exploring a nearby woods, and so forth, would be considered borderline neglect these days. There is more noise — incidental and from a plethora of electronic devices. Familiarity and comfort with mass culture, especially among youth, is more essential to social acceptance. Parenting styles are less structured. And so on — these are all things that would have made my adjustment as a child and early teen much harder. I think I’d be a sad case if I had been born 45 years later than I was.
Changes in the classroom seem dramatic. I’m probably over-generalizing from my experiences, but it seems to me that it was much easier 45 years ago to at least passably succeed in school by simply sitting at ones desk, doing most of ones assignments and answering the occasional question from the teacher. I’ve been in several classrooms recently and the level of social interaction required — group projects and so forth — is much greater than it was. The ability to go off and be by oneself during the day (I would hide in the bushes during recess when classroom stress was high) looks to be impossible, children are so closely monitored. (There are few things that induce brain-gobbling anxiety as as much as being watched.)
Thus I must wonder if part of the increase in autism-spectrum diagnoses has as much to do with the particular stresses of growing up in the 2000’s as the increased focus on seeking such a diagnosis. 45 years ago I was able to manage sensory overload and reduce social interaction to a level I could cope with. Over time I developed sufficient social skills by observation and study, and lost some of the overwhelming urgency presented by emotional and sensory stressors. A lot of luck was involved (such as having teachers who knew instinctively how to supply both structure and sanctuary). As we try to guide our son into the world, with a lot of professional assistance and greater community understanding (other than its location in the financial catastrophe known as California, Silicon Valley is one of the better places to be with an ASD), I’m hoping that luck will have a smaller role. It has to. I don’t see the room in his world for the random acquisition of coping strategies and social skills.
So far we’ve been successful. A combination of occupational therapy (for motor skills and sensory integration), social thinking training, psychiatric consultations, anti-anxiety medication, and better support in school has lead to remarkable improvement over a year and a half span. The fact that I’ve come to accept my own differences from the norm in dealing with his, and have managed to share some of my own strategies with him, has also helped.
Nix 04.13.10 at 9:20 pm
Vivian@40, oh, yes, Mark has done a better job than I could hope to of eviscerating Brizendine. That’s one reason why I didn’t go into any length.
Tim Worstall@45, “A huge testosterone surge beginning in the eighth week will turn this unisex brain male by killing off some cells in the communication centers and growing more cells in the sex and aggression centres” bears no resemblance to any neurology I have ever heard of, except that testosterone production and all that it implies does happen at around that time. Is Brizendine simply making it up? (Hell, “communication centers”? What does she think the brain is, an advertising agency? A call centre?)
kid bitzer@46, yes, Huntington’s chorea is a similar idea, but CNVs normally refer to whole genes or large chunks of them (a kilobase or so) being duplicated a different number of times in different individuals, not a single nucleotide or a short section varying in length. (This is really just a terminological difference: the underlying mechanism, a stutter in the copying machinery, is the same.)
wendy@47, well, as far as my memory tells me, I rarely felt much stress at home when young; certainly not before secondary school. Secondary school was continuous hell, and homework (and the disorganisation it implied) dragged the stress home. But this was a long, long time ago: my memory may be lying to me.
You can certainly spot the stress: muscle tension is one way (although it’s pretty high even when unstressed). I’ve noticed I clench my fists so hard I draw blood without even noticing at times, often at the end of a working day. Oh, and those frustration tantrums I’m sure you’re familiar with? That’s stress from frustration, that is.
(And, well, I don’t talk much about how I’m feeling either. If he can talk your ear off, I’d say he’ll probably tell you if something is really wrong. Either that or it will spill over and someone else will tell you. I know I only considered bringing my mum in if things were really, really wrong: I considered her the nuclear option, not least because unleashing her on nasty teachers and so on might lead to the pupils around me attacking me because of it — and they were making my life hell as it was, so I didn’t want to give them an excuse to make it worse.
As an aside, I strongly recommend a mixed-sex school, even if the school isn’t as good as some of the single-sex ones, simply because the presence of girls will stop the boys being quite such utter bastards to your son… I still get flashbacks and nightmares about my single-sex secondary school, and I left it fifteen years ago, and it was a fairly academic one so not the sort of place you’d expect to contain monsters. Being single-sex was, I suspect, enough to turn it into a petit hell.)
Paula@49, be very suspicious of any and all alleged quick-fixes for autism. I’ve seen people pushing massive hormone doses as alleged ‘cures’, and, guess what? You end up with a feminised male autistic.
Autism is neurodevelopmental, and as far as I know there’s no way to tell differentiated neurons to change their little minds and dedifferentiate and crawl over there, please (which happens before birth, so long before you know he’s autistic); nor is there a way to tell neurons which have trimmed away incorrectly to please not die after all, nor an accurate way to tell a bunch of neurons which should have trimmed at age two to please trim now and oh yes all those neurons around you? Pretend that neuron there died off several years ago. And that’s just possible flaws caused by incorrect neuron positioning or trimming: there’s also problems in neuronal activity which might be caused by changes in the biochemistry of neurons that should be there but just aren’t working the same way they do in neurotypicals. I have even less idea how that might be fixed.
I suspect we will cure autism only when we find a way to diagnose it at the fertilized-egg stage, and if you can identify it at that stage you can more easily simply sort through eggs until you find one that doesn’t have it. Personally, I don’t think curing autism, at least high-functioning autism, is something I’d want to see done: stress notwithstanding, I wouldn’t give up my eye for pattern and focused memory for anything.
ChrisB@51: yes yes yes yes yes. ‘Spectrum’ is an awful term; but really mental conditions don’t neatly sort into syndromes at all, so this is all an attempt to classify something which is not classifiable in that sense. (I don’t have ADHD or dyspraxia, but only because if you have autism you’re considered not to have the other two under the DSM-IV’s definition. You cannot call that anything but a definitional kludge.)
daelm@52: Tony’s cure works perfectly. What’s more, the autistic will often actively try to arrange his life to self-cure :)
idlemind@55, of course, 45 years ago the autistic were often stuck in institutions and almost never diagnosed as such! (I’d agree with the rest, though: the extreme focus on social interaction in the modern world is unlikely to help.)
daelm 04.14.10 at 4:04 pm
I know. :) I tried it.
d
Anderson 04.14.10 at 6:28 pm
If anyone’s still here, I’m curious what anyone knows about “Defeat Autism Now!” and the “Autism Research Institute.” My wife has been moved by various discussion threads to set us up a “biomedical meeting” next month, and my initial googling has left me very skeptical. Anything *good* to say about these folks?
lowkeysmith 04.15.10 at 4:21 am
Anderson , the DAN and Autism Research Institute folks come out of the discredited vaccine cause movement. They are Quacks (IMO) so be careful.
Especially chelating therapy which can be dangerous.
daelm 04.15.10 at 3:44 pm
anderson, they’re a movement – in my mind – born of fear. They give no credibility to the voices of adult autistics and have been caught more than once arguing in bad faith. To my mind, they’re the acceptable face of rejection, and since rejecting your own child is such a hard thing, such a terrible thing to encompass, they’re driven to defend their positions with fury, rage and terror, and cannot consider alternatives to it . Because of this, their tent is big, with the only criteria for inclusion being that you claim to ‘cure Autism’. They can’t be argued with and they can’t consider any position other than that they’ll love their child as soon as they’ve fixed him or her, and that being committed to fixing him or her is actually the best love there is. Personally, it strikes me as an extension of the horror some people feel when faced with a child who’s disabled, and their stridency seems proportionate to their sadness. This seems to me all the more borne out by their unwillingness to engage adult autistics, and the occasional vitro that adult autistics face from them.
d
daelm 04.15.10 at 4:05 pm
‘vitro’ = ‘vitriol’
d
Ohio Mom 04.15.10 at 8:26 pm
A little historical perspective: the Autism Research Institute was founded by the late Bernie Rimland, who was a Nancy psychologist whose son has autism (his son should be in his mid to late 50s by now). In the early 1960s, Rimland pulled together all the research in the world (granted, there wasn’t that much back then) and compiled it into a book that demonstrated that autism was a neurobiological condition. The book won some pyschology prize and helped put an end to the refrigerator mother theory (if you could call that a theory).
Rimland helped found the Autism Society of America and was a very early proponent and champion of ABA, which is now one of the most widely accepted autism treatments. The idea that autism can be “cured” is silly of course, but the idea that individuals with autism can be habilitated isn’t, and he contributed a lot to that idea gaining acceptance. It really wasn’t that long ago that no one thought people with autism could learn to speak, and then no one taught them in ways they could learn, and lo and behold, they didn’t speak, proving that they couldn’t learn to speak.
When you read enough old autism writings, he pops up a bit — he visits the Greenberg family in “A Child called Noah,” for example. He met Temple Grandin before she became, as Charles Hart described her, “The Helen Keller of Autism.” He was the technical advisor to “Rainman.” It’s interesting to me how quickly he’s being forgotten.
Yes, some of his ideas, like his questioning of vaccines, are awfully out there (lowkeysmith has the sequence reversed, the ARI came first, before the vaccine controversies) but others are really, to me, just a matter of degree. He thought there were things a person with autism could ingest that would help them function better. Guess what? The psychiatrist who prescribes medication for my son thinks the same exact thing! The only question is, What substances? and it’s pretty clear to me that no one has a good answer to that yet.
Finally, we all should remember that there are also a lot of ABAers who claim *they* can cure autism (see “Let Me Hear Your Voice”). It’s not just the bio-medical movement. There’s enough things to roll your eyes at for everyone to have a chance.
Ohio Mom 04.15.10 at 8:28 pm
Oops, there’s always one typo: I meant a NAVY psychologist.
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