Autism Recovery

8 Jun

I don’t get autism recovery. I don’t get what its supposed to be. I’ve been told (as has the world) that chelation can offer a 100% recovery, leaving the child indistinguishable from their peers.

I’ve been told that recovery means that a child no longer carries a diagnosis of autism.

I’ve been told that recovery simply means a previously non-vocal child now speaks.

I’ve been told that recovery is not the same as cure, but nobody gave me a cogent reason as to why not.

I’ve been told that recovery means a child can attend a mainstream scholastic setting.

There are so many ‘recovery’ merchants on the web (and also in Washington DC last Wednesday) who all want to tell the world that ‘recovery is possible’ and that their child is ‘recovered’.

On a popular biomed site for example there is a section where parents have sent in stories of their kids recovery. Oddly however, only 7% of those stories recount a child no longer having a diagnosis of autism.

Over on Kristina’s blog, a discussion regarding Jenny McCarthys latest interview turned up this nugget:

Jenny was jumping all over the board last night in the interview with Greta. She used “recovered” and “recovering”, then seemed to say that he was still autistic, but didn’t have any symptoms at all any more.

She stated that Evan had been diagnosed as autistic in the past, but that his current neurologist says that he never had autism. She reconciles this discrepancy as proof that Evan has been cured by her interventions.

McCarthy (who maybe concidentally was apparently still smoking in 2003/04 – two years after her sons birth) related an incident from May 2007 at the recent Autism One event:

Evan still suffers from seizures, the last one, he just had last May that no one kind of knows about yet, was horrible. He seized on and off for seven hours and then we had to put him in a coma for four days to make him brain dead to stop the seizing because he’d previously gone into cardiac arrest, and there’s so many kids out there with seizures had passed because of that reason. We had to induce a coma, it took him another month to walk again or talk again.

First off that is terrible. My heart went out to McCarthy when I was sent this. I cannot imagine how terrifying that must have been for her – and of course for young Evan too.

But does this sound like a recovered child to you? A child indistinguishable from his peers?

Thank goodness those (no doubt AAP members) mainstream doctors were there to help this poor little boy.

So what is recovery? To me, in all the YouTube videos I’ve seen posted by people convinced their child has recovered it seems most commonly to mean a clearly autistic child who has improved in certain key areas over time and has learnt a variety of coping mechanisms. Beyond that I have no idea.

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11 Responses to “Autism Recovery”

  1. Harold L Doherty June 8, 2008 at 11:00 #

    Kev

    Your concern over the use of the word “recovery” is puzzling. You appear to be OK with AAP member physicians. Are you aware that the AAP Management of Children with Autism Disorders concluded that:

    “ABA methods are used to increase and maintain desirable adaptive behaviors,reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills,and generalize behaviors to new environments or situations.ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community.

    The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive
    early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment
    have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40″

    Most parents want to help their autistic children and aren’t interested in semantics. The gains described by the AAP are impressive and they are what parents are seeking for their children regardless of the language used to describe such results. As for the word “recovery” it was used by Dr. Granpeesheh recently to describe four autistic teens she had worked with. Dr. Granpeesheh stated:

    “Many people don’t believe it is possible to recover from Autism. Our purpose in developing this film is to show that there is reason for hope. These children can learn to communicate, socialize, and play. I wanted to make sure families hear and see that,” Granpeesheh said.”

  2. farmwifetwo June 8, 2008 at 12:59 #

    Recovery is the mistaken assumption that if a child appears “normal” they now are.

    My 8yr old appears normal now – he went from non-verbal mild-PDD to a dx of NVLD. He appears “normal”.

    He has a terrible time with social skills and abstract thinking. Those issues are being dealt with.

    He’s not “cured” nor “recovered”… he’s just doing AMAZING!!!

  3. Angela June 8, 2008 at 14:33 #

    You know, we considered for a couple of months trying to find treatments for our son in the form of chelation and some of the other things that Jenny spoke of. It came down to the fact that none of those treatments are proven to have the desired results…and then we celebrated the wonderful child he is with Autism! I think you are probably right in your assessment that Evan may never have had autism….guess we’ll never know for sure.

  4. storkdok June 8, 2008 at 15:03 #

    I posted this this morning on Kristina’s website. I thought it was appropriate for your discussion here, as well.

    “When my younger son entered the Siblings Study at LADDERS three years ago, Mass General Hospital, he was first examined by Dr. Margaret Baumann. One of the many questions I asked was, “Is ‘recovery’ possible, or even real?” She said she had never seen an actual child who was no longer autistic. There were a handful of kids she saw over the many years of her practice who may have “lost” the diagnosis, basically they no longer needed an IEP and intensive intervention or an aide in school, but they were still autistic in their way of thinking and perceiving the world. They had learned skills and strategies very well so that they blended in with NTs.

    I also asked her about what percentage of children in the Siblings Study they were seeing with “regressive” autism. She said, “None”. She said when they reviewed the videotapes from the parents and watched the children’s development from birth, there were always subtle signs that pointed to autism, but were missed by parents and even clinicians/physicians who were not trained in child development. The atypical development was present from the first year of life, not just after vaccinations in the second year of life. It becomes more obvious in the second year of life when the child doesn’t progress in development when compared to NT children of the same age.”

  5. Bink June 8, 2008 at 15:23 #

    storkdok, thanks for sharing that information. I think a lot of parents of older autistic children genuinely believe “something happened” precisely because they and their doctors missed the early signs of autism. I myself was assured repeatedly by my pediatrician that there was nothing atypical about my child, up until about age 2.5 or 3. But looking back at my videotapes I can plainly see that the signs were always there. The pediatrician thought that since my child spoke and was affectionate that my child could not be on the spectrum. So I can understand where some parents might be coming from. When one does finally get the diagnosis, it can seem like a 180 degree turnaround from what one was sure was true.

    As far as “recovery,” it seems to be something people don’t want to define. I and others I know have tried to get a major autism organization we are members of to define the word, especially when they publish articles about how this or that biomedical intervention led to it, but, they won’t.

    A lot of people would consider my child to be “recovered” based on some of the above descriptions. I think my child is simply an awesome, brave, cool autistic kid who is doing her damndest to navigate her way in this difficult world. I love her, I support and help her, and I admire her strength. What I don’t do is try to “cure” her of being herself.

  6. Kev June 8, 2008 at 15:36 #

    Interesting story Storkdok. We too can plainly see signs in retrospect but only in comparison to our youngest child who is nearly 3. Its like xe does something and we say to each other – ‘M never did that!’.

    Angela, I’m not sure I’m saying Evan was never autistic. I don’t want to disenfranchise him on such scant data :) – to me it all adds up to a situation where no knowledge seems to being passed off and accepted as factual.

  7. Joseph June 8, 2008 at 17:08 #

    I wonder what happens to the kids of most must-cure parents when they inevitably end up being obviously autistic adolescents and adults. Are they accepted at that point? Is it even likely that the autistic adolescent or adult will appreciate their parents’ (sometimes dangerous) attempts of cure?

  8. farmwifetwo June 8, 2008 at 17:08 #

    Bink – we had to wait until my youngest was 3 to dx him with severe non-verbal PDD. B/c he is social, happy, laid back etc. Then the flapping, touching etc became noticable. We’d been in speech therapy since he was 18mths old. But we couldn’t get that “oh” moment. You know the one where Hellen Keller figures out the sign is “water”. It finally came at 4… and there’s no going back. He’s doing amazing too.

    Looking back at pictures with his HUGE bald head. The ignoring of the camera and other things we thought of later… it was very obvious in hindsight. But we were watching for the big signs… the head banging, meltdowns etc of the eldest so, although we knew something was up… they weren’t certain what that “up” was yet.

    Also with my eldest first dx was non-verbal mild PDD. Second 6mths later was “speech and language delayed with global delays” b/c they didn’t know where on the spectrum – if he was on the spectrum – he’d be. The dx now reads “a mild form of ASD” – needed to get services of course. But the Dev Ped says he had NVLD w/ S/L delay. Delay being… speech/language is coming and normally… just delayed. Now… he’s pretty much NVLD… bugger when they master sarcasm and little white lies and you cheer b/c they made the milestone and groan b/c now you have to discipline it :)

    S.

  9. Kev June 8, 2008 at 19:27 #

    _”Your concern over the use of the word “recovery” is puzzling. You appear to be OK with AAP member physicians. Are you aware that the AAP Management of Children with Autism Disorders concluded that:”_

    Yes.

    But before we get into that, I want to know what reason I have for engaging you in debate?

    Whenever you post here it is one post and thten you never respond. You don’t allow my comments on your own blog. Why should I engage you? What is productive about me doing so?

    _”Most parents want to help their autistic children and aren’t interested in semantics.”_

    Hmmm, not sure thats true. I agree most parents want to help their kids. I am not sure they are not interested ini what _you_ call ‘semantics’ and what I think of as ‘accurate definition’.

    As for the rest of your comment, I’m not sure what point you’re making exactly. Are you saying the AAP definition of recovery is one we should be adhering to?

  10. Joseph June 8, 2008 at 20:27 #

    BTW, I’ve previously noted that the AAP’s conclusions, and indeed, the surgeon general of the United States’ conclusions regarding ABA were premature. I’m not saying this in the same way a mercury parent might go against authority – based on “gut feeling” for example. The evidence just doesn’t support those conclusions. The point by point argument is here. Harold and everyone else are welcome to outline the problems with the argument.

    This is the gist of it:

    “There is a substantial body of Level-II-1 and lower quality evidence that suggests EIBI is an effective treatment approach. However, since there exists Level-I, Level-II-1 and other evidence that EIBI is not terribly effective, and also considering the lack of adult outcome studies, the statements by the Surgeon General of the United States and the American Academy of Pediatrics seem premature. Indeed, the trial which appears to be the most methodologically rigorous to date (Smith et al., 2000) was largely unsuccessful.”

  11. Ms. Clark June 8, 2008 at 21:10 #

    Catherine Lord is generally seen as the #1 expert on autism diagnosis. In a presentation I heard her give in Sacramento at a conference she said that of all the autistic kids she’s diagnosed, and followed and re-diagnosed (kids regularly get moved from PDD,nos to Autistic Disorder and vice versa) she knew of one whom she considered to have started out autistic and developed into a very typical kid. She showed a photo of him and some friends or siblings outside a baseball museum or something.

    She didn’t say if the kid had had ABA at all, or floortime or if his parents had biomedded him. My guess would be that they he had some interventions, but I would guess that no reasonable person would have attributed his change to those treatments. Lord certainly wasn’t saying, “Here’s what these parents did, I suggest everyone give it a try.” She made no comment even related to that.

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