AS vs. HFA diagnosis - any suggestions?

Post Reply New Topic

My 9-year-old was diagnosed with AS almost 2 years ago. I recently started doing a lot more research (he is now having a lot of trouble at school, before he was doing pretty well overall). I looked up the DSM-IV criteria for AS and HFA. Because my son was very speech delayed at 3 (not saying 2-word phrases like "more milk"), it looks like he really should have the HFA diagnosis instead of AS. I spoke to his specialist today and her feeling is that since his speech is normal at this point (except for some pragmatic language), that she is not concerned about the earlier speech delay as far as the diagnosis goes.

My question is - should I stick with the AS diagnosis or push for the change?

He is so borderline, but the "letter of the law" in the DSM-IV would put him in the HFA criteria. Most NT people who meet him don't realize that he is not NT. Most of the time, he functions reasonably well. But, he really struggles with pragmatic language, has a deficit in written expression, and is dealing with severe anxiety and frustration issues.

Will the change in diagnosis help him get services? We have an IEP meeting scheduled for next week. So far, he has not received any services because until recently he was doing well in a private school, but things have gotten worse.

How will it change how he sees himself? He has done therapy programs with other ASD kids, so he sometimes uses the terms Asperger's and autism fairly interchangeably, so I don't know if this change would bother him.

How might people see him differently? I now for a lot of NT's, the first thing they think of when you say "autism" is a kid sitting in a corner, rocking and not speaking. They wouldn't expect my son who makes decent eye contact (most of the time) and is able to hold a conversation (with some social awkwardness).

I know most of this is going to change dramatically when the DSM-V comes out, but that isn't for at least 1 1/2 years, so I am not going to worry too much about DSM-V until it goes into effect.

What do others in the AS/HFA group think?

It's iffy because most of us diagnosed with AS actually meet the qualifications for HFA. Apparently the people diagnosis tend to use AS as a default rather than Autism as a default.

I'm not sure how much you'd get - at least here for adults all the services are for anyone on the spectrum, not different for different diagnoses on the spectrum. If its like here its not worth the time pushing, because of the changes in DSM-5

Asperger's is pretty much the default a lot of the time for older kids and up. If he were younger, he'd probably get PDD-NOS or autism. People don't think of people beyond young children as being autistic. I don't know why. Most people with Asperger's fit HFA criteria.

My March diagnosis of AS was revoked by a second psychologist in July and replaced with classic autism. This was due to a speech delay plus a total regression.

There are a few things to consider in your situation. First of all, there is no such diagnosis as "HFA". The term "high-functioning" is an ambiguous classification term, not an official diagnosis. He would either have Aspergers, PDDNOS, or Autism. Also, just because he had a speech delay does not mean he automatically has (classic) autism. He would have to fulfill all criteria for Autism, not just speech or communication issues. While a speech delay would technically disqualify him from being truly Aspergers, it could also mean he is PDDNOS (unless he fulfills ALL criteria for Autism).

Secondly, there are other things you need to consider: is his functioning limited? Would being labeled as classic autism give him services he really, truly needs? Or is he VERY high-functioning in that you might end up hindering him in the future by giving him a more "hefty" label. If he would truly benefit, then you may want to pursue it. If not, why bother spending more money on it? (Keep in mind, in 2013, regardless of having Aspergers or Autism or PDDNOS, everyone is just going to be ASD then, and he will transition over into ASD regardless of what his label is today).

Also, how was he diagnosed? Was he given the ADOS? I know that test is commonly used for kids now. There are two cut off numbers: a lower one signifies an ASD, a higher one signifies classic autism. If he did not score in the classic autism range, he would not have been given a classic autism diagnosis (they have to go with the lowest cutoff he received in all three areas). ASD in this case, would either be officially labelled as Aspergers or PDDNOS depending on the criteria he fits.

If he functions like an AS kid now, what does it matter what he was like when he was younger? The services he needs now will be the same anyway. There is no clinical difference between autistics who never had a speech delay and autistics who used to have a speech delay but overcame it.

However, if he has ongoing language issues (beyond the social-pragmatic issues such as literalism) or other issues beyond what you typically see in AS kids, then changing his diagnosis to autism (HFA isn't a diagnosis, it's included under autism) could provide services that most AS kids don't get because they don't need them. Things like speech therapy or whatever.

I'm similar to your son. I spoke a little, but then for a few years, I didn't talk. Then I became more high-functioning over the years. I have an HFA diagnosis. AS is like autism but without a speech delay, does your specialist know that?