(update) and the diagnosis is in...

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(drumroll a year later?)

High Functioning Autism. I liked the psychologist who tested her, she was extremely thorough and looked at all sorts of factors including types of thought/mental processes, etc. The one thing that confused me a little is her insistence there's more of a measurable difference between HFA and Aspergers than I've come to think. My daughter wasn't delayed in speech, but had some speech problems and currently has some language issues, so that's why she's been put in the HFA cubbyhole instead of the AS one. But other than that, what, if much of anything, is the mega difference between the two (from everyone's experience as parents of ppl in the spectrum)? I think the only thing I worry about with her being deemed HFA instead of AS is that I don't want her educators to assume she'll necessarily need more done for her than if she were AS- the assumption being made that AS are more functional than someone with HFA.

Next step is waiting list for in-school occupational therapy for some sensory/auditory issues and a mega tweak of her IEP, which has been kept really generic up until now.

I know I'm only in here sporadically compared to some, but I do lurk more than I post

no difference, or rather, theres not really a solid dividing line between the two, and theres no way to predict what she might need in the future.

That's pretty much my viewpoint on it, but I wonder why the psych is so insistent there's a dividing line. She specializes in ASD, so obviously works with a lot of children in the spectrum.

Anyway, feh. I look forward to the school backing off of my kid in regards to group work in the near future (they'd better!)

there are very specific differences between classic autism and asperger's, mainly in the additional communication category found in the classic autism criteria. thats the section that includes delayed speech, but also includes other language things such as impairment in initiating/sustaining conversation and stereotyped/repetitive/idiosyncratic language usage. asperger's also requires that there is no delayed speech, no delayed self help skills, and no cognitive delay. for classic autism, the onset must be before age 3 also, which is probably one reason asperger's gets diagnosed later on average.

you literally cannot have someone who fits both criteria, simply because one of the criteria for asperger's is that the criteria arent met for another pdd. classic autism basically overrides asperger's.

a lot of professionals seem to arbitrarily diagnose as either HFA or AS, without really considering the diagnostic criteria. some apply the AS diagnosis incorrectly, to reduce stigma. some apply the classic autism diagnosis incorrectly, if needed for services to be received. our son was misdiagnosed asperger's, even tho he obviously meets the criteria for classic autism, and i think this was based on two things, first that he didnt have a significant language delay even tho he has all the other communication markers, and second that he has no cognitive delay, in fact his IQ is quite high.

what we found was that the asperger's diagnosis was a detriment for our youngest to get services. this was because of the preconceived ideas held by the school social worker and psychologist who both stated he was too young to be diagnosed asperger's, and because of that refused to acknowledge autism at all for him. it took two months into the next school year, two more IEP meetings and a new school psychologist before we could get him recognized as ASD and thus eligible for autism specific services. and that was just for a generic ASD eligibility, they dont get specific as to HFA or AS in the school.

so after our experience, i would think its better for them to assume she will need more services and be ready to provide them, than for them to assume she will need less and not offer them.

I've kind of stayed out of the whole HFA v. Aspergers v. PDD-NOS thing because when it comes down to the kids at the ages I've known them, they seem to have more in common than different, and the protocols for helping them through school share more than they differ. So, in my pragmatic view point, the differences are a non-issue, but I'm also not the one making a living out of delving into technical diagnostic language. I'm the one that tells parents, "trust your instincts" "you'll know if it's right" and "labels are only worth what they get you." For a doctor, the diagnosis is the goal; for me as a parent, helping the child through life is the goal. Different goals take different paths.

I think the HFA will, as azurecrayon suggested, leave the most doors open when it comes to accommodations and services, so it should be fine. You never have to accept anything that is offered; you are always free to ignore the whole deal and just mainstream your child with no accommodations at all, assuming there are no behavior issues anyway, so I tend not to worry about "over" labeling. I've turned down plenty of specific accommodation offers, and you will be free to do the same. Neither of my son's schools have had a problem with me saying, "I think he can get by without that, and I want him to have as real life an experience as makes sense." I much prefer turning accommodations down to fighting for them, but that could just be me.

The AS criteria is really flawed. I thought it was quite common for people with AS to be delayed in self-help skills.

This has been my experience, to the point that when my friend's daughter got a new diagnosis of autism (previous diagnosis was PPD-NOS) my first reaction was "hooray!" Thinking, *finally* she could get some real help. My son's diagnosis is autism, but he's pretty much indistinguishable from most kids with AS so I use the terms pretty much interchangeably, depending on which I think is most likely to convey useful information.

I want to know what would constitute self help skills anyway. Sounds vague o.O

Language wise I can see HFA for her because there's just some aspects of language she struggles with (the ability to just blurt out a definition, she often just uses the word in a sentence when asked to define, for example), though I she wasnt speech delayed. She stutters & has pronunciation issues & idiosyncratic speech sometimes...

Anyway yes, I want services for her because she's unhappy in school. If I can help her to the "toleration" point I'll be satisfied. She's 9 now and I'd like to see her self sufficient economically and life-skills wise when she's an adult if possible.

Next step for me is dealing with mo red tape, but I'd like to hear from the adults with ASD who were diagnosed before they were adults what, in their opinion, helped with anything. I'm not interested in diets or drugs or changing the core of my child (that creeps me out), but I want her to feel comfortable and be able to navigate the world to some extent.

eating, dressing, using the toilet, brushing teeth, hygiene, etc. the skills needed to take care of your physical needs on a basic level.

i would agree that a lot of people diagnosed with AS have delays in self-help skills. i can only assume that either they are misdiagnosed, there really should be no separate category called AS, or the diagnostic criteria need to be adjusted. maybe thats one reason for the changes seen in DSM-V?

there could also be differences in the reasons for the delay in self help skills between AS and classic autism. could be sensory issues, hypotonia, or simply a lack of attention to detail, besides a genuine learning issue. as far as im aware, there is no cause of the delay defined in the classic autism criteria.

I think if people were diagnosed by the actual criteria that Asperger's would be a very rare disorder to have. I think Asperger's fits me best (logic-oriented, no speech delay...), but I will be glad to see it go because of the horrid criteria and the unpleasant name.

she's ok with those things, but I think her understanding of language is what made the psychologist put her there, along with a v high score in math reasoning/visual patterning, but lower on spatial and word problem type things. She can take a drawing or picture of just about anything and draw it, too-- but she *must* have a model. Coming up with something on her own and she draws like her age range.