Gifted Issues Discussion homepage Forums Twice Exceptional Asperger's - "20% grow out of it"

I read that 20% of those diagnosed with Asperger's grow out of it. Is this true? Should I dig up the quote? This would move it to the "syndrome" status in the DSM IV, wouldn't it?

Also, an article on the OASIS website stated that anorexia in girls is associated with Asperger's.

Seablue, I'm not sure where that statistic came from, but I wouldn't believe it.

It is true that many people with AS learn to deal with their symptoms effectively, so that they don't appear obviously autistic. Some people crow about "losing their diagnosis" or "overcoming autism." It's hard work, but people can really improve their social skills dramatically if they are motivated. My DS8 has done wonders in consciously trying to learn which of his behaviors trouble other people, and eliminating them, and I expect this to continue to improve with maturity.

At the same time, autism is defined in the DSM as a lifelong and pervasive disability. I know adults who are managing it successfully; but I don't think I'd say that any of them no longer has it. They usually work hard to do things typical people take for granted. It can be a very happy life; it's a life marked with certain ongoing challenges to overcome, to be sure, but it's doable.

As for the anorexia: one of the symptoms of AS is anxiety, and there are often co-occurring conditions with AS; for some people anxiety drives eating disorders. I wouldn't be surprised to see a link. At the same time, I wouldn't assume that all girls with AS are high-risk for anorexia; I'd wait alertly and see what develops with your particular kid.

AS is a syndrome, which means it's a collection of co-occurring symptoms; few people have them all, and they appear in interesting combinations. You can't assume your child's path will follow anyone else's.

DeeDee

I think that some kids are incorrectly diagnosed when they are younger, so they appear to "grow out of it." There is no growing out of an autism spectrum disorder. With early intervention, however, kids can accommodate very well. Now that our son is 8, people act surprised when we tell them about his ASD diagnosis...but he has had therapy since age 2 1/2 so his behaviors don't stand out as often. Nan

Here's the link to the paper cited by wikipedia, re: the 20% cure quote:

http://www.waisman.wisc.edu/family/pubs/Autism/2003_symptoms.pdf

The question about this and the anorexia is not my concerns about my daughter's future, but more about a retrospective survey of the gene pool she comes from! Some of her behavior at this age looks like some of her relatives', but most of those relatives are fine as adults, including those who had anorexia.

The anorexia article, as I read it, was more saying that anorexia might be associated with AS, not the other way around. In the past, anorexia has been thought to be associated with OCD.

In all this reading I have become acquainted with a new term, "neurotypical." How funny!

Nan - great news about the improvement due to early intervention.

Reading through this paper, I think the results are more indicative of the inappropriateness of the current diagnostic criteria for diagnosis of adults with Asperger's. The symptom profile of individuals with Asperger's changes over time (this is reflected in the data) but interpreting that as "outgrowing" the syndrome doesn't make sense. Asperger's is a developmental disorder which means that a person with Asperger's will develop differently, but they will still grow and change. What doesn't change are the underlying differences in how the person perceives and processes information about the world.

That makes sense. Have you considered contributing to the wikipedia page?

The article was published in 2003, which is quite old, especially for an emerging topic.

I keep searching the literature because her aunt and uncle have more obvious signs of AS, but I am stuggling to find info on identifying preschool girls.

Seablue, I bet if you ask for reading material in the Girls forum at OASIS you'll get some answers. There are some parents over there with AS girls.

Anecdotally (we have a female cousin with AS), I'd say they get missed because:
--many are "sociable"-- ie they want to relate and have friends even though they have poor skills for doing so. (This is also true of some AS boys.)

--they don't all have huge meltdowns; sometimes they are just as anxious but many internalize it, so they look extremely "well behaved" and schools can ignore them.

--they are often taken advantage of because they can't read social situations or the intentions of other kids; again this is often mistaken for compliance.

--they often display play behavior (ie, they are not lining up toys, but playing with them)-- but their play can be heavily scripted, repetitive, or echolalic. It looks more like real play than the play of AS boys does, but it's still not functional.

I would watch for real, back and forth conversation: can she build on someone else's idea? Or does she just lecture?

Starting to see AS in family members is pretty usual once you suspect it in your child. Our family is sprinkled with AS-type quirks... and some adults who are clearly diagnosable but were missed because the diagnosis didn't exist back then. For me it just confirms the genetic nature of ASDs.

DeeDee

I would call that extremely encouraging for the long term!

DeeDee

I am wondering if the "out grow it" idea is similar to what folks say about ADHD - that many adults outgrow it. The research in the ADHD realm says that adults often learn compensatory strategies, but the underlying difficulty is still there.

Isn't this what early intervention is about - teaching the person the skills and strategies needed to have an easier time of it?

Unfortunately - I have often run into situations at the HS level where students with diagnosis such as AS or LD have worked so hard and become so successful at developing compensatory strategies that institutions pull the supports and services claiming a cure and lack of need. But, this is an entirely different topic.....

Autism still has such a stigma that many parents don't want to "label" their kids. If there's a chance of losing the designation, some people jump at it (parents to believe they've "cured" their kids, schools to save money)-- which can sometimes mean kids no longer get the supports they need. Not the best thing for the child, but the social pressures at work on the adults are real.

DeeDee