Monday, February 27, 2006

Autism Hysteria - An Unusual "Recovery" Anecdote



A controversial blog (autismhysteria.blogpot.com) documents the claimed recovery of Steve Colville's daughter from autism. Steve makes the following claims:

1) The definition of autism has broadened over time to the point where it's no longer meaningful. This explains, in part, the "autism epidemic".

2) Many children labeled autistic are not autistic (and Thomas Sowell, author of The Einstein Syndrome, is right about a similar assessment).

3) Even though his daughter showed behaviors consistent with some of the DSM-IV diagnostic criteria for autism, she is not autistic, and never actually was autistic. (She was actually diagnosed PDD-NOS).

4) Autistic behavior may be caused by a lack of bonding between a child and his/her mother. This also explains, in part, the "autism epidemic".

5) There exists real autism which is truly life-long (apparently meaning that no development of speech or social skills is possible when afflicted by it).

Claim #1 above overlaps with some of my own views. (See Does Autism Exist?). I mostly object to the labeling of an increasing number of children as brain disordered. I don't mind the recognition that a good number of people are autistic - people who in the past would've been labeled weird, stupid, retarded, nutty or even gifted. When used as an identity label, it can be very useful.

Claim #2 is meaningless, as autism is a social construct. There is no objective test for autism, so it's possible to claim that a given person is autistic or not really autistic, or to say that she used to be autistic, etc. The only formal convention is the DSM-IV, and that is still pretty subjective. This is why it's possible for researchers to speculate and disagree as to whether Einstein was autistic.

The same applies to claim #3, i.e. whether his daughter was really autistic or not. This reminds me of Raun Kaufman, who is claimed to have gone from being autistic to being someone "without a trace" of autism. Given the common but unsubstantiated belief that autistic children don't develop fully, this has become quite controversial. Naturally there are those who say Raun Kaufman was not really autistic, and those who say he's now a very high-functioning autistic. The key here is that Raun Kaufman does not believe he's autistic, and that's really the assessment that matters. I should note that some evidence presented in favor of the view that Raun Kaufman is recovered is based on stereotypes. For example, it is often mentioned that he has a University degree, as if autistics could never have a University degree. (I have a Master's degree myself, BTW).

A diminishing number of researchers still believe that autistics never develop speech, and those who do develop speech are described as 'not truly autistic'. This clearly makes no sense. Some autistics who develop speech still have substantial deficits. At the very least psychiatrists would have to come up with a new label for those who truly never develop speech, but the big problem would be that it is impossible to predict which young child falls into which category. Again, medical tests for autism or kinds of autism don't exist.

Refrigerator Mother

Claim #4 could be seen as a variation on the refrigerator mother theory. This has been the most controversial claim of all. For example, Xian Diaz said:

I'm curious to hear how your wife feels about this whole situation, and how she felt when she was blamed for her daughter's affliction.


It is clear mothers feel offended when such theories are proposed. My wife gets pretty rattled. The recognition of my autism and its strong genetic component are seen as a vindication of her parenting skills. But frankly, being offended by a theory has no bearing on the theory's scientific merit. Furthermore, it would be foolish to claim that parenting is irrelevant with autistic children, or any children for that matter.

I do believe Political Correctness was one of the reasons why the Refrigerator Mother theory was no longer studied by researchers. (There's very little research on it in the last couple of decades). When autism began to be recognized as a highly heritable condition, Refrigerator Mother began to be phased out. But if you think about it, today many researchers continue to look for other environmental triggers. Except, this time, they aren't looking for environmental triggers that have to do with childhood experiences or psychological influence. They are only looking for environmental accidents, i.e. physical causes. There is no good reason for this focus, except fashionable belief systems, and the unpopularity of certain views.

Autism is highly heritable, but it is not 100% heritable. Note, however, that nothing that is evaluated subjectively is ever 100% heritable. Personality and intelligence are probably even less heritable than autism. Homosexuality is less heritable than autism. There must be something that makes one identical twin have one personality type and the other twin have a different personality type. The cause of this is not likely going to be level of mercury in the brain. It's probably something a lot more subtle that has to do with the unique experiences of each twin. (Or perhaps it's something that occurs in the womb - we just don't know).

There are a couple case reports that indicated a higher proportion of autistic behavior in children who had experienced profound institutional privation at an orphanage. This was not nutritional privation, BTW. This seems to suggest, in principle, that some psychological factors could amplify the perceived severity of someone's autism.

The Anecdote

At first I was inclined to dismiss Steve's anecdote as yet another anecdote of sudden development that coincided with the latest treatment attempted by desperate parents who are always trying something new. After reading his account, however, it was clear that this was unusual.


Then suddenly [the headmaster] leaned over, picked up my daughter and held her tightly to his chest... And screamed for the best part of an hour as the headmaster walked about... Then when she'd calmed down a little he put her down, placed a chair in her hand and pushed her into a semi-circle of children having a music lesson.
My daughter sat down and looked about for a few seconds as though waking from a sleep. Then her eyes focused on the teacher. And then my daughter (and remember at this point she was making no eye contact and was almost completely non-verbal) simply began to copy the teacher's hand actions and mouth the words to the song...
And then three months later she began to talk... The best moment came when, during one of the hugging sessions, she tried to escape and said: "Daddy, you shouldn't be doing things now that you should have done when I was a baby!"


This is just a summary. The whole description is pretty lengthy. But essentially, it seems far-fetched to say such an improvement is coincidental. The part about beginning to speak in sentences all of the sudden is not surprising. Speech develops that way - it's not a gradual process but an explosion. But the sudden improvement seen right at the beginning of this therapy appears notable.

Some people dismiss this as a kind of ABA. This is nonsense. ABA involves intensive training up to 40 hours per week for several years. It's not just hugging for 3 months.

Some key information to understand what went on here is found at the beginning of the account:


She began to say single words at about 12 months, and by 18 months had begun to make sentences. At 18 months she had a development test and seemed fine.


It is clear this little girl understood spoken language and could also speak in sentences before 18 months. Then suddenly she stopped speaking. This is what most parents refer to as a "regression". It appears that true regression can occur due to conditions such as Landau-Kleffner Syndrome. In other cases, it's not clear if the child forgets some skills or simply stops using certain skills.

Some additional information seems relevant:


Then when she was two years old we moved house... At about this time our second child was born... my wife went back to her own country for a while, during which time Denise's behavior became intolerable.


So it seems she experienced considerable stress around the time of her "regressions". It is possible she simply withdrew and had constant anxiety, not so much that she forgot to speak in sentences.

Social withdrawal due to depression and stress has been reported. See Autistic devices in small children in mourning (2000). It should be noted that not all children are affected this way. Clearly, there needs to be some kind of genetic predisposition. There is some evidence that autistic children react differently to stress.

Incidentally, my mother says I was the happiest child before my brother (who is 4 years younger) was born. I believe I experienced a sort of regression at the time. I have seen how stress has affected my son, particularly when we first enrolled him in a preschool, when I've been out of town and when my wife has been out of town. But my son has never really spoken in sentences. A regression per se has not been obvious with him. Additionally, my son is quite loving and likes hugging. These are some of the reasons I don't believe this approach or outcome could apply to my son, even though the profile of hyperactivity and so on appear to be very similar.

In trying to understand the sudden improvement observed at the beginning of the therapy, I'm reminded of some anecdotes retold by Thomas Sowell (who Steve has read as well). He tells, for example, of a family sitting in a living room, very worried, discussing how to deal with their late talking child. Realizing this, the child approaches his relatives and says "I'm sorry". He also tells of children who don't speak in public but who are caught practicing speech when they are alone.

Steve's daughter did know how to speak and so on. When the headmaster forcefully hugged her for half an hour, I'd hypothesize she realized her parents were very worried for her, that this was going to become a major problem for her, and much like the child who said "I'm sorry", started to behave in a way more in line with the expectations of the parents. The hugging, in fact, might have worked like an aversive. I could be wrong, but without evidence for this or the opposing hypothesis, who's to say which is right.

Holding Therapy

It's true what they say: There's nothing new under the sun. After a bit of research, it's clear Steve's miracle cure is exactly the same as Holding Therapy. This is an old therapy invented by Dr. Martha Welch in the 1970s. She hypothesized that autism was caused by the lack of bonding between mother and child. The therapy involves forcefully hugging a child despite any distress experienced by the child.

As with ABA, holding therapy has been described by people on the spectrum as a form of abuse [ref].

Others are not so forceful. This is what Temple Grandin has had to say about Holding Therapy:


During my travels to many autism conferences several parents have reported to me that holding therapy was beneficial. It is not the "cure" that some of its proponents tout, but it had a beneficial effect on some children. In my opinion, the benefits of holding therapy could be obtained by less stressful methods. I cringed when I watched the BBC show The Visit and I am glad I did not have to endure forced holding. Fisher (1989) describes a gentler approach to holding that worked with her daughter.


I should note that Temple Grandin is one of the few people on the spectrum who still sees autism as a disorder that needs to be defeated through various means, including drugs.

Proponents of Holding Therapy contend that it forges a bond between mother and child. But there is no scientific evidence whatsoever to support this assertion. As I noted, my own hypothesis is that it works as a kind of aversive, i.e. the child is forced to act more in accordance with expectations in order to avoid further hugging. This will probably appear to work well with children such as Steve's daughter, who have the skills necessary to pretend to be NT (which, BTW, requires considerable energy expenditure). With children who are simply incapable of emulating expected behavior, I'm thinking forceful hugging could easily lead to PTSD.

I have learned that Donna Williams has criticized Holding/Hug Therapy in her book Autism - An Inside-Out Approach on much the same grounds.

Don't get me wrong. I do think it is advisable to hug children as much as possible. I not only hug my son constantly. I tell him how special and unique he is. I just wouldn't recommend hugging children against their will, and particularly not until they are screaming with pain.

Further Issues

I have some problems with what Steve has to say. For example, at one point he says something like "she was bad, bad bad... now she's bad, but in a good way if you know what I mean." I'm not sure if he realizes this insults all autistics, including my son and myself. He's basically saying "autistics are bad, bad, bad, and in a bad way." He has also implied that autistics don't get excited and so on - perpetuating estereotypes that should not exist anymore. Steve doesn't like the word "neurotypical" and prefers to speak plainly by using the word "normal". I wonder if he thinks his daughter's development and reaction to psychological stress was "abnormal", and whether he thinks it will never be "abnormal" again. I'd obviously prefer if Steve did not imply that my son or myself are "abnormal".

4 comments:

  1. For a view of the darker side of holding therapy (primarily coming from outside the autism community), see Advocates for Children in Therapy.

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  2. Hey Joseph

    Very well written analysis of my daughter's story. However, there are many more facts about my daughter that I haven't told yet, because the story is very complex. Therefore your analysis is unintentionally simplistic.

    For instance, as well as the fact that she understood speech, she also knew how to play psychological games, both with her parents and her sister. This was not a child whose mind was affected by a disorder, but a child who fully understood the effect of her behavior on others, and was using it to manipulate.

    Some may call this "autism", but even some of the "autism-obsessed" pediatricians had reservations when I told them about this.

    As for the "miracle cure", as you put it, being the same as Holding Therapy, I think you're a little of the mark, mainly because you don't yet know the full story.

    The hugging was actually only a small part of what we did with my daughter, and it is not seen as a cure for autism. The whole "therapy" (for want of a better word) is based on a belief that many childhood problems (but not autism) come from a lack of bonding not only with the mother, but also the father and the family in general.

    To this end it uses a whole range of techniques. But all of them are so simple that it would be pretentious to call them "therapy". They are simply good child-rearing strategies which come from the time when family units were much more closely-knit than they are today.

    This is based on the fact that humans are social animals, and children learn to be human from what they are taught and nothing else. I believe that parents have a duty to teach their children how to live in society. To not fulfil that duty is a cop out, and people who don't want to fulfil it are doing a grave disservice to their children and society in general.

    And by the way, the hugging we did with my daughter doesn't act as an aversive. My daughter now loves to be hugged.

    And your assertion that my daughter has "the skills necessary to pretend to be NT" is based on a skimpy understanding of my daughter's personality. You've never met her, don't know her, and therefore really can't diagnose her, if you don't mind me saying so.

    My daughter doesn't act in accordance with expectations. She's simply a funny, witty, playful little girl of six who enjoys her life. To think that this personality is a pretence is beyond credibility, especially since we're talking about a six-year-old child.

    Now on to the further issues.

    My statement that my daughter was "bad, bad, bad..." meant just that. Her behavior was bad. Now it's bad, but in a good way, in that she's naughty and witty and funny and playful and exasperating and wonderful. Just like any child, she's tiring. But that's good. Because that's the way children are supposed to be.

    How this insults autistics, I'm not sure. My daughter never was autistic and her bad behavior doesn't reflect on autistics in any way. I said my daughter's behavior was bad, nothing more.

    I used the word normal in its widest sense. I believe normality covers a wide range of behaviors, but at some point you have to draw the line.

    For instance, if a man walks naked in the street and then sits down in the middle of a busy road, endangering himself and others, would this behavior be considered abnormal? I would say absolutely yes. But if a man likes to walk about naked in his own home while drinking a glass of wine and listening to The Magic Flute, is this behavior abnormal. I would say absolutely no.

    The criteria is simply this: does the individual's behavior cause an extreme problem for himself and/or others? If it doesn't, it fits within a generally accepted (and very wide) framework of acceptable behavior and is fine. If it does cause a problem, that's another matter entirely.

    So do I think my daughter's development was abnormal? Yes I do. I don't believe it was autism, but simply a developmental problem of another sort. But whatever it was, if it had continued she would have had very serious problems in integrating into society, her education would have suffered (or been non-existent) and she would probably never have been able to lead a full and independent life.

    Now it seems that she will be able to do just that.

    As for implying that you and your son are abnormal, I did no such thing. I don't know you, and therefore can't comment, even if I wanted to.

    To be honest, going off your blog, I can only say this. It seems that you have a very fine mind. You write well, can hold opinions of varying degrees of subjectivity, and you have a great understanding of the subtleties of language and the underlying emotions. This doesn't seem particularly "abnormal" to me. If anything you seem to be a very perceptive and well-adjusted human being.

    You say you and your son are autistic. Of course I don't know anything about your behavior. But I can see that you have a family, and can only guess that you hold a job and lead a life to your own rules. If that is the case, then your autism seems to be causing you no problem, in which case it is, according to the parameters I set out above, no problem for anybody.

    But in that case, what do we call the people who do have a problem with their "autism"? Those who really can't integrate into society at even the most basic level because their condition simply doesn't allow it? The autistic kids (or children diagnosed as autistic) I came into contact with certainly had serious problems. Violent, obsessive, unable to function without a strict routine and continually engaging in repetitive stereotypical behavior. Maybe we need a new word for them.

    Anyhow, I hope you'll continue to read my blog to hear more about my daughter and the school she attended. You might find the story interesting as it unfolds.

    In fact, send me an email every now and again. As I continue my blog, I'd like to correspond once in a while with someone who has autism and can maybe give me some insights. Let me know and I'll give you an address.

    Take care, Joseph, and, yes, give your son a hug. And play ball with him. And get him to help around the house and take part in stuff. Children are great fun to have around...

    S

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  3. Hello, Joseph..
    This is my first time visiting your blog. I found your article "Autism Hysteria" while doing a search for the words 'autistic' 'children' and 'mourning'. I was hoping to find word from a psychiatrist, a professor, anyone that could offer an idea for my problem. As it turns out, my search led me to you, an autistic parent of an autistic child. Who better suited to give feedback about spectrum children than one who has been there on both sides?
    My name is Kat and I have an eleven year old son. He lives with his grandmother (a two hour drive via freeway from my house) in the house he came home from the hospital to. When he was less than a year, my grandfather had a stroke and by necessity joined us and my now ex-husband in living there.
    When my son was born, the cord was wrapped around his neck so many times it had forced his head into a perpetual chin-up posturing and had an unseen knot caught in it elsewhere. Since he wouldn't drop, I was taken in for an emergency C-Sec. The plan was for me to remain awake through the procedure, but that was not to be. When they cut through the wall, he dropped just enough to cinch the knot and shut off all blood flow & heart rate. My doctor had me put under immediately (in fact, I remember nothing of the entire incident after my doctor's assurance that I was alright and that they were going to begin) when they saw his distress, removed him and attempted CPR. Luckily for all of us, he survived and was transfered immediately to Children's Hospital several cities over.
    I tell you all of this in the hopes you'll understand how much my son means to me and how his life started. I didn't get to see him till my doctor released me a week later - against her better judgement - and he didn't come home with us till another week after that. Due to his troubled birth, an OT was assigned to visit our house from the time he was - I believe - six months.
    If not for her sharp eyes and concern, we might never have known just how much trouble he was in. Physically and mentally he is more than slightly retarded. He can't use a pen to spell his name, nor eat with a spoon or fork, but he can talk your ear off and beat my husband at Burnout Revenge on Maniac level. He's a wonderful kid that's had to deal with more than his share of separation and loss, especially recently. His father has repeatedly made and broken dates to visit him throughout his life, but these are now coupled with several deaths, including his Poppa, my grandfather, who was his daily companion from the moment he first latched onto the lower support bar of my grandfather's walker and started cruising the living room with him at eighteen months, no matter how my grandfather ranted and raved about "that kid" being in his way. After several tiny heart attacks, my grandfather passed in April and was granted a veteran's funeral. We've had pets pass away, so he's seen death in some form, but with his Poppa's loss and the re-renting of the little In-Law cottage behind my mother's house - where my grandfather lived for the past seven years, my son has discovered just what "dead" means.
    We thought he was dealing with it very well.. He seemed to be grieving, accepting, and attempting to understand the why's and when's of death. The past couple months, however, we've seen a new side of him, and what I feel, is his real grief. He's become very violent and destructive, though never at a person, lashing out instead at items in his room. He's also very angry and distrusting of the certainty of anything. All of that I can handle, but this new behaviour I have no tools for. He is insistant that if he doesn't see me I am dead, that if he isn't at my house, it's gone forever. I made plans with my mother for him to have Christmas here, with all of us, and her. She says he wakes each day telling her if they don't come out NOW I will be dead and the house won't exist, that there will never be a Christmas and more specifically never be THIS Christmas. After I spent as much time as he needed with him on the phone tonight, he gave the phone back to my mother and told her "Mama's dead" then wandered off to watch tv. She called me a few minutes later to let me know he was thrashing again, then a half hour later I called to see how he was doing and he's back to distancing himself from her and his pain.
    I don't know how to explain hope to him, or survival. I don't want to tell him we'll never die as he knows that isn't true. I tried reasoning that grandfather was very old and very sick, but he sees my mother as old and sick and has lately started telling her she is old and sick and going to die any time she's attempted to reassure him that she isn't planning on going anywhere for a long time. The truth of the matter is she IS getting older and she IS sick, she's been sick since I was a baby.
    Do you have *any* advice for me.. I realize that each person is different and that spectrum makes for even more diversity, but I am desperate.. I need help in teaching an autistic child to cope with death and mourning. Are there any books, any sites, anything you could tell me about to help me to help him?
    I can be reached via email - though I'd rather not make it available via this notice. I'm including a link to my online art page, which has my contact information on it, should you need it.
    Thank you for any help you are able to provide and thank you for taking the time to even read this. I know it's likely very long by now.

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  4. Strange Angel,

    Thank you for sharing your story. Sounds like your little guy is going through a very rough period. I don't think my personal experience can help with something like this. There are probably books or social stories out there designed to explain death to a child. You can get one geared to his comprehension level. You might have found this already. There's also this. Sorry I can't be of more help. BTW, you can find many more blogs about autism by autistic people, parents and professionals over at the Autism Hub.

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