Comments on: Recovery Distracts

By: farmwifetwo

farmwifetwo — Sun, 14 Dec 2008 12:58:02 +0000

I would guess it depends on what your def’n of recovered is.

Technically my eldest at 9 has been “cured”, he doesn’t flap, spin, echo, he now speaks clearly. He’s always been in a regular class without supports. This term he got an A in French, B’s in everything except Language Arts (not a surprise) where he got a C.

Grades are all his…. he’s involved in Scouts, Karate etc.

He talkes “normally”, he acts mostly normally

That… to some would be cured…. but that’s the surface.

Finally, after 5yrs of fighting, at Gr 4 we have an EA (Ed assist) in the class for him. She’s there an hour to 90min to help plan his day and help with Language Arts. He sees the LST, one hour per week to again work on L/A. He sees the OT for sensory and computer skills. He has a token program in place to teach appropriate social and behavioural skills for his age level. We’ve had a psychometric test done and we now know where the Learning Disibilities are… “walking and chewing gum at the same time” and short term memory deficits. The SLP has nearly completed another Language assessment.

Finally at Gr 4, coping isn’t good enough. On the surface he appears “normal”…. but those that think these kids are “cured” are in for a nasty shock the older they get and the kids have issues coping and learning in classrooms, b/c what’s on the surface… is not reality.

By: Naydi

Naydi — Thu, 04 Dec 2008 08:47:59 +0000

When C was between 18 and 24 months he was practically nonverbal, would stack and line up everything, and made no eye contact. I have no doubt he would have been diagnosed with Autism had he been assessed at the time. However he was not assessed until he was 3 1/2 years old. His diagnosis was PDD-NOS, with the doctor saying that in a few years he would likely be more of an “aspie” (yes, she did use that term ). His hand flapping is decreasing, his eye contact is increasing, and he has begun to ask those W questions. Perhaps when he’s a teen he will fall off of the DSM’s listed PDD’s. Perhaps not. But I wouldn’t call that recovery- I would call that a natural progression of his development that should be accepted at face value rather than analyzed. In science I think that is what they would call “remitting of symptoms”.

It doesn’t mean that someone is not on the Autistim Spectrum if they falls off of the DSM’s listed PDD’s. It just means that they no longer fit the check list. I also find it funny that whenever they evaluate a treatment, no matter how strange, they always find so many children who improve… but who is to say those children wouldn’t have improved anyway.

By: Paula

Paula — Wed, 03 Dec 2008 21:01:27 +0000

Book! Book!

I am agreeing with Linda’s post above.

By: Kristina Chew, PhD

Kristina Chew, PhD — Wed, 03 Dec 2008 20:23:44 +0000

I would note that, given the interest in biomedical treatments of at least one of the authors (Martha Herbert—-consider the latest edition of Alternative Therapies), and given the fact that “recovery” has been said to have occurred in some children due to biomedical treatments, discussion of alternative medicine here isn’t surprising, as far as the discussion is about the notion of recovery more generally?

By: mayfly

mayfly — Wed, 03 Dec 2008 19:56:45 +0000

I wonder how many of the commentators actually read the article which is a review of other papers (primarily longitudinal studies) and addresses with many of the concerns raised.

It does not deal with alternative medical treatments as qualifying papers in that area cannot be found.

By: AnneC

AnneC — Wed, 03 Dec 2008 19:53:04 +0000

Re. ASDmom’s point: I think this whole discussion sort of hinges on the problem of conceptualizing autism as a “set of dysfunctional behaviors”.

Autistic people may naturally tend toward certain behavioral phenotypes, but this does not mean that those phenotypes are somehow impervious to any external influence or that autistic people do not develop over time in ways that alter how we appear on the surface.

Autism really only makes sense when conceptualized as a cognitive style / neurological configuration. The surface stuff may be the most noticeable, but is also probably the most malleable and subject to influences like adaptation, education, and (unfortunately) intimidation, shame, and fear. Whereas the overall neurodevelopmental-structural tendency is likely to start off atypical and remain atypical throughout the person’s life.

And if that isn’t recognized — if a person is presumed to be internally functioning like a neurotypical when in fact they are autistic and using tremendous amounts of resources just to maintain the presentation they’ve been trained into in order to avoid constant ridicule, lectures, comments, etc. — then autistic adults will tend to be very vulnerable to the effects of stress, discrimination, denial of services for failure to fit a stereotype despite having very real difficulties in certain areas, etc.

By: Jeni Hill Ertmer

Jeni Hill Ertmer — Wed, 03 Dec 2008 18:54:01 +0000

Because, as you mentioned, autism is a life-long disorder, with respect to the use of the word “recovery” perhaps it would make more sense to speak of it as one does with alcoholics and alcoholism -which is a lifelong disease. Those who are alcoholic and attempting to live a life of sobriety speak of this as being “in recovery” which indicates it is a process that will continue as long as the individual lives. The same goes for those with diabetes -who must monitor their health all the time to maintain their sugar levels, etc. I realize alcoholism and diabetes also are physical issues, sometimes causing severe ramifications to the individual’s health, but I would also posit that not continuing with whatever needs the autistic individual may have, throughout the lifetime, could bring about mental health, possibly even physical health issues too then, could it not?
I’m just wondering if putting that word into a slightly different context might curb some of the animosities that seem to flare up about whether an individual diagnosed with autism can “recover” or not or would it be better to regard it as the person is “recovering” with the emphasis then being placed on the disorder being a constant.

By: David L.

David L. — Wed, 03 Dec 2008 17:53:49 +0000

Yeah, what about when these “recovered” children become adults? Autism is still very much only about children in most people’s eyes. Will they be able to make relationships and be able to hold jobs? I bet that under stress, the so-called recovery will collapse.

By: ASDmomNC

ASDmomNC — Wed, 03 Dec 2008 17:03:56 +0000

AnneC and MPJ hit it on the head. I think that children who are paraded as “recovered” have simply learned how to “pass” as NT in our NT society. John Elder Robison touches on this in his book Look Me In The Eye. He talks about how his mind still works the same way, but he has learned how to engage in behaviors and social graces that make him appear “not autistic.”

I like the analogy MPJ used about tying the left hand behind the child’s back and forcing them to write with the right hand.

By: AnneC

AnneC — Wed, 03 Dec 2008 16:53:17 +0000

The main thing that stood out to me in that study description was the mention of “tics, depression, and phobias” in supposedly “recovered” autistics. IMO, that sounds like the response of someone who has been through so much “normalization” that they are possibly suppressing autistic mannerisms and tendencies out of fear or shame.

My experience has been that when I try to “act normal”, people tend to read me as anxious and even “stiff”.