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Boys in Social Skills Group: “My Autism is Forever” versus “My Autism Used to Be”

23 Feb

Whenever a new member joins a group, we do what the kids call the NOOB game. In this game, they are given a set amount of time to figure out a fixed number (usually their age) of things they have in common. These commonalties cannot be what I call “no duhs” — they have hair, they are boys, they have feet, etc. Today, the boys eagerly requested the NUBE game with the addition of Vic.

The game usually begins with pizza, video games, ice cream, and Star Wars. Until today. “Do we all have diagnoses of Asperger’s, autism, or AD/HD or something like that?” asked Trevor. “Asperger’s”. “Bi-polar Disorder.” “Not me. I used to have autism, but not any more.” Trevor said, “Wait, dude, if you have autism, you have it forever.”

I can honestly say that this topic has never come up in group, which, now that I think about it, is somewhat surprising. Most days, no stone goes unturned. I was caught off-guard today and I know that I didn’t do the topic justice. In fact, we didn’t “do” the topic at all. Both boys were adamant that they were correct — Trevor that autism is forever, and John that he “used to”. They didn’t argue, rather they just shutdown. So, we moved on.

The question that remains for me: How do I reconcile this contradiction for Trevor and John and the others?

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10 Comments

Posted by on February 23, 2011 in ASD in the Grand Scheme

 

10 responses to “Boys in Social Skills Group: “My Autism is Forever” versus “My Autism Used to Be”

  1. Tam

    February 23, 2011 at 3:22 AM

    You don’t? Sometimes people will disagree, and this particular argument could get very ugly, especially if John’s parental figures are really proud of his cure. It could cause problems with his self-esteem, his family, his parents’ views of you, and upset the rest of the group besides. I’d leave this one be unless it comes up again and you have to deal with it. Chances are it will, so have some idea what to say, but I wouldn’t bring it up again purposely in your position.

     
    • jholverstott

      February 23, 2011 at 1:16 PM

      I agree, Tam, that this issue is hitting at the core of some very difficult issues. I’m also not sure I can shy away from this discussion because I’m worried about saying the wrong thing. I plan to talk to John’s parents to get a sense about their attitude on this before I make any hard and fast decisions.

       
  2. C. S. Wyatt

    February 23, 2011 at 4:59 PM

    Parents who tell me a teen is “recovered” have a point — the teen has developed the mimicry skills to adapt to the daily world. Only a detailed discussion starts to reveal subtle autistic traits. I’m certainly not as impaired as I was two decades or three decades in the past. Most people would never believe I had any of the varied diagnoses I experienced through my life.

    Am I “recovered” somehow? No. I’ve developed skills and strategies over time, slowly and certainly at a pace behind any peers. A single evaluation might not catch me on a “bad” day. And those days are further apart with age. Only a detailed, multi-day and multi-modal evaluation would catch some of the less obvious, but definitely present impairments.

    I don’t know that every student and adult I have met would be diagnosed with autism years after the initial evaluation. Probably, yes, but only by a skilled evaluator. Many evaluators would now diagnose these young adults with ADD/ADHD or maybe a less radical shift from “autism” to PDD-NOS (which is still “autism” — and soon to be complicated by the DSM-V).

    I don’t believe ASDs go away or are outgrown, but the external expressions fade.

     
  3. pookiepookison

    February 24, 2011 at 8:17 PM

    Pizza, video games, ice cream and star wars?! I want to join! I wonder how many kids think autism is temporary? Also, I believe from what my brother says it’s “NOOB.”

     
  4. joelsax47

    February 24, 2011 at 9:41 PM

    Recovery is not cure. I agree with what Wyatt says: you learn skill sets and obtain mastery. I think that’s something to celebrate and admire.

     
  5. Keith

    February 25, 2011 at 1:30 PM

    My first thought was that Trevor was talking about what the family is deciding to call the diagnosis.

    I can imagine a mom saying, “You had Autism. Now you don’t. You have….?” That’s a short-run around a big concept. Make “This” the new rule, not “That”.

    My 2 cents, one might learn to cover up (re-direct, compensate for?) the issues/symptoms. There’s no recovery in that because life has stages and it seems to me each stage requires readdressing the same issues. Discovering new adaptations.

    What worked in my 20- early 30s definitely isn’t cutting it in my late 30s to mid 40s.

    Call it whatever you like for the diagnosis. It’s bad strategy to get complacent & feel like you’ve reached a plateau that will last forever.

    Some of those plateaus might look like they go on forever but in reality have a pretty steep drop on the other side.

    Still enjoying your blog.

    Keith.

     
  6. Diana Huetteman

    February 28, 2011 at 6:03 PM

    Siding with C S Wyatt – developing coping skills is not a cure but a recovery. There’s always some “monster under the bed’ that will provoke a full blown meltdown. On a good day most people will never see my child’s ASD traits that he now covers after 12 years of therapy. Can’t tell you how many times a “professional” school employee has told me, “but he doesn’t look autistic”. Choke!

    Depending on the parents, the label that sticks is the one they are most comfortable with. If parents believe that all ASD kids are like RainMan, they shun the autistic label. If they believe there are positives to the autistic label, ie. Einstein, then that label isn’t so bad.

    Perhaps the question isn’t about reconciling the two. Maybe there is a deeper question of looking a different perspectives and the gray areas of recovery vs. cure.

     
  7. Corin Barsily Goodwin

    May 3, 2011 at 10:16 AM

    It seems to me that autism has a neurological basis, so unless someone’s brain makeup has changed, they are still autistic. Their ability to cope and camouflage might have improved to where they don’t *appear* autistic in their usual environment, or possibly some doctor (maybe in a long string of doctors) has changed the diagnosis on the basis of behavior (or for other reasons).

    The issue may also be a parenting one: The parents may feel that the autistic label is harmful in some way, or are trying to encourage the child to thin of themselves differently.

    I’d say your decision to speak to the parents first is a good one. Once you understand why the child has said what he did, you’ll have a much better idea of how to proceed.

     
  8. Jazzygal

    May 4, 2011 at 4:58 AM

    I agree with previous comments. Autism IS forever but he may have just learned to integrate, socialise and cope better. I very much understand the issue as I have the same problem with my son who has gone from an ASD to PDD-NOS diagnosis. I never tell him he’s recovered though…I just say that things are much easier for him now but some things are still difficult. Good idea to chat to his parents.

     
  9. cat mikkelsen

    February 26, 2012 at 10:36 PM

    If and when we fully understand autism, in all its forms, autism may well be “forever.” However, we are fallible and we do not properly understand what’s going on with all of the different people and their different types of brains, so we do not always diagnose people correctly. A recent report said that in order for children to get services, many more of them are diagnosed with autism than really do qualify. And here is another study claiming that people “recover.” http://www.webmd.com/brain/autism/news/20090511/researchers-see-recovery-from-autism

    I would say that when a child is young, sometimes other things can seem like autism and that we are learning a lot. I would also say that everybody is different and wouldn’t really push it. You’re right that it really is something dealt with differently in each family.

    And yes, this is something that people fight about a lot, but I personally have such skepticism about test results at this point that IMHO some of the fights seem almost theoretical. (e.g. if diagnostic techniques for brain and neuro issues were fail-safe, hey, you bet it would be forever.)

     

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