Interesting Article on "Optimal Responders" to ASD Treatment

[Crimson Wife]

I disagree with the title "Life After Autism" because it sounds like the individuals still are experiencing residual challenges, but it's a good read: http://www.slate.com/articles/health_and_science/medical_examiner/2015/09/is_autism_permanent_some_children_diagnosed_with_autism_seem_to_grow_out.html

[Guest]

Thank you for sharing this Crimson Wife. I think this says it all for me (quoting from the article):

 

"Brain imaging seems to support the idea that losing the behaviors necessary for an autism diagnosis doesn’t necessarily mean the brain has “rewired.†In an unpublished study, Fein and her colleagues found that when performing a language task, young people in the optimal outcome group have patterns of neural activity in some brain regions that more closely resemble those of their peers with autism than the patterns of typically developing individuals. The finding doesn’t negate the idea that those children’s autism has faded, Fein says: After all, the disorder is diagnosed based on clinical observations of behavior, not based on brain scans. But, she says, “the brain functioning is not normalized. It looks like they might be compensating.â€"

 

I'm on a tablet and can't bold what I would like to in the quote so I will just add it below:

 

- unpublished study

- young people in the optimal outcome group have patterns of neural activity in some brain regions that more closely resemble those of their peers with autism...

- Fein says: After all, the disorder is diagnosed based on clinical observations of behavior, not based on brain scans.

- she says, “the brain functioning is not normalized. It looks like they might be compensating.â€

 

COMPENSATING, that's the key word in this article, I feel and pinpointing that autism is diagnosed based on observations of behavior. That is what I teach my boys. How to behave according to social standards but still remain who they are. There are many positive character traits and abilities that are often linked to those on the spectrum. I would NEVER want my boys to lose those!

[kbutton]

I'm not sure if I find it fascinating and hopeful or totally scary.

 

If I could tell you about our morning, you'd understand why I find this disturbing. Yet my son would never get any help without the label because he's too "good" at everything. What they are describing about these kids is how my son is WITH his label, and he is definitely impaired no matter how well he looks people in the eye, no matter how many friends he has, and no matter how well he comprehends his history text. Just watch him take the history test. :-) While he can learn coping skills to help "normalize' him outwardly in those areas, there is nothing normal about the stress and frustration he feels and the lack of ability to mitigate that stress compared to neurotypical people. 

 

I think these clinicians dropping labels are pigeon-holed and likely idealistic. I bet most of them don't understand what the disorder looks like in the 2e population, nor would they probably diagnose a 2e as on the spectrum except in rare cases. At least if they are going to drop the labels, they should have some category for these kids. You can't convince me that most of them don't still have major issues.

 

I do think they are onto something with the recognition that many who lose the label have good EF skills. However, that makes me think they had something other than autism to begin with.

 

Exiting soap box now. 

[kbutton]

I am delighted that these kids can and have made such progress, and I can see why that would be hopeful to many. I just get frustrated when their bar for "lose the label" sounds so much like my son's functioning--I know what toll it takes on him. 

[PeterPan]

Oh yeah, nothing screwy about diagnosing something based on symptoms, not biology, and then saying see it went away just because you did treatments that improved some of the symptoms *just enough* that the kid no longer qualified under all the criteria of DSM5.  Oh no, nothing screwy there.  And you see it in the article, kids continuing to have OT issues, reading comprehension issues, needing supports, etc., etc., but THANK GOD THEY'RE NO LONGER AUTISTIC.

 

Someday maybe we'll finally have diagnostic criteria based on science.

[Guest]

I am delighted that these kids can and have made such progress, and I can see why that would be hopeful to many. I just get frustrated when their bar for "lose the label" sounds so much like my son's functioning--I know what toll it takes on him.

I think it has more to do with agendas and dealing with the "epidemic" status that autism has been given in the more recent years.

[KSinNS]

It's funny. I've often wondered of our son was retested, if he would still get his label. We certainly would never do it. It was traumatic the first time, and I feel no great need. Also, I can see his struggles, even if he gets along well most of the time. But, so many kids are diagnosed now who would not have been in the past, it makes sense that the diagnosis may not be that stable. But I also agree, it doesn't really sound like they are "cured" or "recovered" or anything, more that they just don't quite meet criteria anymore. Anyway, time will tell. 

[Princess Ariel]

My dd was just re- tested and has retained the lable.  The NP is calling it "high functioning" this time as the PDD-NOS label  no longer exists.  I felt relieved she still has the label because I still see behaviors on a day to day basis. I often wonder if she had been diagnosed earlier if she would "look" different today.  She wasn't diagnosed until age 10 and although she received speech, OT and some social skills, it was never with the concern that she was on the spectrum. I know I shouldn't dwell on that but I will always wonder!

[Heathermomster]

I don't know exactly how to verbalize this to make sense. DS is dyslexic, but I clearly recall a convo with son's principal where they wanted retesting because she felt the dyslexia diagnosis would not apply. BTW, the testing she looked at was within 36 months. Our stuff was not outdated by any means. DH and I felt like she was eager for the school to no longer be on the hook for helps. It was like, let's find any excuse we can to no longer accommodate in spite of the obvious need. This educator was being obtuse over an SLD that has been studied for years and years with tons of documentation to support findings.

 

For the sake of the ASD community, I wish there was more conclusive testing rather than plain old observation. Agendas get in the way and it just irritates me.

[Storygirl]

I just read this article, and I felt on the one hand that it is just amazing that children can get the kind of help that is available today. I think it's fabulous.

 

But. There is this quote:  "38, or 7 percent, no longer meet the criteria for autism. Of those, 35 continue to have emotional, behavioral, or learning difficulties, and only 10 are in a mainstream classroom with no additional support." To me that tells a different story. There is still a lot of difficulty and disability there, whether you call it autism or something else.

[kbutton]

Yeah, there sure isn't much missing from the autism list when you say, "emotional, behavioral, and learning difficulties."

[Guest]

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[Guest]

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