Friday, November 5, 2010

What is Autism Recovery?

I have often wondered what the term recovery from autism really means.  Most autism treatments do not make this claim.  Some ABA providers make this claim, as do some biomedical proponents.

I am not going to comment on biomedical treatments because I have little experience with them nor much belief that they work beyond a gluten-free/casein free diet (In my personal experience only makes autism "better" by making children who have GI issues feel better.  This is not the same as "recovering" from the core deficits of autism.)

This recent article by Adrienne Perry, one of my favourite local autism researchers, finally breaks it down for me.  According to her study, she defines "best outcome" as:
  • Testing in the non-autistic range on the CARS.
  • Testing 85 or higher in IQ - that would be "low average", or in the 16th (or higher) percentile.
  • Testing 85 or higher in Adaptive Behaviour Composite on the Vineland-II Adaptive Behaviour Scales.  This would mean the child is functioning at the 16th percentile or higher overall in their age group.  Note this includes social ability.
Of course, just because a child has accomplished "best outcome" doesn't mean they do not have residual affects of autism.  By definition, autism is diagnosed based on observed behaviour since there is no known medical test.  If a child tests non-autistic on the CARS, they are by definition not autistic.  Similarly, if their IQ and adaptive skills (that is, their ability to function in every day life) is close to average then one would expect the child is, for the most part, "recovered".

I think this is something of a misnomer because any "recovered" child with autism has more or less learned how to overcome their disability.  But the disability is still there.  For example, the CARS will ask if a child is distracted by visual stimuli.  A child who has "fallen off the spectrum" may still be distracted but know how to control the distraction, or at least not do it when people are looking.  It may not mean they've lost interest altogether.

Recovery or not, I think I personally need to get my head around the fact that autism will affect Alanna her entire life, and accepting that fact is not the same as giving up on her.  It's a hard pill to swallow.  I haven't taken it yet... but I'm trying.


  1. That is a tough term to throw around since even when people claim children are "recovered", it is often years after diagnosis. How do they know these children are what they would have been without Autism?

    I think an IQ in the normal range and adaptive skills are best outcomes but I am always reluctant to use the term recovery.

    I am a teacher and I have a student who was, in his early years in a full ABA autism program. He fully mainstreamed in early elementary school. I can still tell he is Autistic - his voice modulation is different, his eye contact is different, he lacks social skills- but he is doing very well in school. In fact, he is in mostly honors level courses. he has an amazing singing voice and he gets a lot of satifaction from that talent. I know another boy who is in 6th grade and he just mainstreamed. He was also in a full ABA program. He still has social issues and it takes him a really long time to get his school work done but he is amazing. He is aware of his Autism and he has the ability to think about how it affects him.

    Both of these are kids whose parents never could have predicted their kids would be such success stories. I try to hold onto those possibilities when I feel down about Sam.

    I think as parents, we can't always focus on the outcome. It is hard not to b/c we want our babies to have "normal" lives but the most important thing to do is make sure whatever interventions they receive are helping them make progress. I saw my son stall last year and I fought to have his school changed to a program with more resources and experience.

  2. Some "Recovered" adults come to our support group. They got no jobs, no life partners, one has a college degree, two have life skills diplomas, all finished high school, only one has a job at home depot but he never had an autism diagnosis, back in the day he got a diagnosis of "cognitive disability" which his parents say now is diagnosed as autism (he is late 20's or 30 I think).

    Anyway, I don't get it. Recovered means nothing to me anymore.

    If your kid grows in to someone who has some goals, some beliefs, a friend, a sense of what their purpose in life is - that is a success story right there. Independence is such a subjective term and I did not include it in my list of things to have to be happy (i.e. successful).

  3. I disagree with whoever wrote this article. I believe children can recover from autism. By that, I mean recover from autism just as you would from a cold.