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Definitely a private tester for ruling autism in or out. You want someone who has seen hundreds (preferably thousands) of autistic kids and borderline-but-not ones, and who will not be confused by the giftedness. This is specialist stuff.

Asking the pediatrician is a fine place to start. There is also a list of diagnosis resources at aspergersyndrome.org .

DeeDee

I presume that the pediatrician will refer me to Seattle Children's, which has an autism center. Is there any reason not to use that one that anyone knows? Feel free to PM me if you don't want to get into specific information "in public."

We are seeing a trusted doc on Thurs--I'll ask.

FWIW the language on their website looks very sensible to me, proven approaches, nothing wacko.

He sounds a little like my 6 year old, who has dyspraxia. Does your DS have any articulation issues, or issues with speech fluency? The neuropsych who assessed DS said it's an "output" issue. He has a problem getting his speech out in a fluent way. His speech is slow and the prosody is odd. So his receptive language is a lot better than expressive. He was delayed with sentence formation (although he a huge vocabulary labeling things).
He also had early reading ability, although his comprehension is fine as long as he can choose a correct answer (i.e. multiple choice test) rather than express an answer (unless it's a simple question that can be answered with a few words or sentence).

In kindergarten he didn't really make any friends til several months into the school year. Now in first grade he has a group of friends and is much more social.

If you go for an autism eval, just make sure you go to a good place that doesn't over-diagnose. The neuropsych I took DS to said that if I had taken him to certain centers they might have slapped him with an asperger's label due to his cognitive ability and odd speech/mannerisms (like flapping hands, walking on toes, etc). But he does fine on tests for asperger's/autism and there are no red flags other than the superficial type ones. There is an overlap between dyspraxia/developmental coordination disorder and autism. Wikipedia has a good page.

No, he was an early speaker and speaks very well. He has a slight lisp, but he's easy to understand, even by non-family members. His prosody is good. He does quote movies a lot, and he watches the same TV episodes over and over again. He doesn't flap or walk on his toes. He is very constipated and has had issues with potty training, though.

I'm always worried about this, because on the one hand, both kids have behaviors that I would describe as "spectrum-y," but neither of them is a classic case of autism or Asperger's.

Some autistic people do have stereotyped (repetitive/odd) behaviors or motor delays, as well as comorbid conditions like dyspraxia, but autistic people all have some delay in social skills, which is not necessarily true with those other disorders. In addition, not all autistic people have the motor issues you describe.

I'm not saying nobody is ever wrongly diagnosed-- it happens-- but a careful neuropsych will tease out the difference between these distinct diagnoses.

It makes sense for parents to ask lots of questions about how the neuropsych arrived at their conclusions, and follow up on any conclusions that don't make sense with the parents' gut feeling.

DeeDee

Those traits do make me think that the further consultation is a good idea.


In the autism community, people say "if you've seen one person with autism, you've seen one person with autism."

There are stereotypes of what constitutes a "classic case," but the reality is that it's more like a set of family resemblances, with no two people having the exact same presentation. In some ways my DS is very typical of "classic" Asperger's, and in other ways very atypical. (He adores travel and novelty! His verbal skills are a strength, not a weakness!) Giftedness only complicates the picture.

A good evaluator will be able to quantify the traits in the way a lay person can't. And if the child doesn't have a spectrum disorder, the information gleaned from the detailed testing can still be very useful in making an educational plan.

DeeDee

I don't know how much over-diagnosis happens but there does seem to be a considerable number of young children who "outgrow" it--probably never had it in the first place. By 5, I would think a diagnosis would be more reliable but still be careful. There was a place I wanted to take DS based on the school's recommendation and the pediatrician refused to give me a referral saying "they diagnose everyone with autism". She sent me to the neuropsych at the university instead. And he made similar comments. we filled out rating scales plus there were a couple tests looking at affect recognition (reading emotions on people's faces?) and "theory of mind", all of which he did fine on.

AFAIK nobody is collecting statistics-- that's a very hard kind of statistic to collect.


I don't know any such cases personally, and those covered in the literature are comparatively few. All children learn and grow, and many who have challenges as young children grow into adults who have learned to manage their difficulties relatively smoothly (although often with invisible effort).

My take on that question is very like that expressed here: http://jerobison.blogspot.com/2013/01/can-we-outgrow-autism.html


Some autistic people have theory of mind; it's a misconception that they can't. My DS can do quite well on those tests. Still autistic.

The ADOS attempts to quantify the social engagement aspect of autism for diagnostic purposes-- it's the best instrument I know of for making the distinction. Rating scales aren't enough IMO.

The reason I recommend going to a major pediatric autism center is that they have access to and much more experience with the latest testing instruments than the average private neuropsych might. And they've seen a lot more kids, so the practitioners tend to have a quite nuanced sense of where the diagnosis applies. Not to say you can't have a bad experience there, just to say that going where the expertise and experience is makes a lot of sense to me.

DeeDee