Seeking some answers re: trying to get a dx

[jakesmama]

We're pretty sure that ds is on the asd spectrum, most likely Asperger's. He currently has an IEP at school but it is for speech-only. They refused to evaluate him for any of our other concerns. I brought these concerns up 3x over the course of grade 2 but was told that he was more likely gifted then anything else. He did not get into the gifted program because his Torrance Test of Creative Thinking score was very low. His CogAt and WISC show above average to superior scores.

Ds is socially awkward, hones in on one topic and knows everything about it, has one-sided conversations (but doesn't realize it) and often says or does things that seem selfish or weird. His facial expressions do not match the communication going on (if someone is telling him about something that made them sad his face doesn't show concern...neither does he, really. He just can't wait until he can interject with something about Pokemon, math or the life cycle of beetles). He relies heavily on routine and cannot think outside the box. Hence the low test score for creativity...I could have told them he wouldn't do well on that.

So, my questions are this: 1) How would having a dx actually help him? What are the benefits to evaluation and what are the types of treatments for AS?
2) How the heck do we get the school to conduct these evaulations? Or do we? Should we do them privately?

I did bring this up with the ped. last summer and he ordered testing for ds that consisted of academic evaluations...not at all what I had in mind. I want to be a good advocate for ds but I need to know what to advocate for and how.
Thanks for reading through all of this. I really appreciate any insight that you all might have!

Oh, and he has his well-child check-up tomorrow also.

[christinelin]

That sounds pretty Aspie to me.

I think knowing the diagnosis helps because you can target interventions more and you have an explanation for all kinds of things (ie: he scores low on creativity because that is not atypical for people on the spectrum). Typical interventions for AS are social skills/pragmatic training or more general ASD therapies like RDI.

We did an evaluation privately. I think the best evaluators will observe your son in a natural setting with peers as well as doing testing. The main ASD diagnostic test is the ADOS (although there are others). Schools are typically focused on academic challenges, which it doesn't sound like are your son's primary issues. It would be lovely if they recognized that social challenges have an impact on academics, but I think that is unusual.

[jakesmama]

Thanks!

Ds has some academic issues but it isn't the subject matter that is the problem, it's organizational and time management...focusing on something that isn't part of the assignment while letting the assigned stuff slide. Ds forgets directions (maybe doesn't "hear" them in the first place) and has to be told over and over to do simple tasks. I would think that this would concern the teachers but I feel like they believe we just aren't structured enough at home and he just needs to get with it.

I met with his ped today and she was wonderful! I've been trying so long to get these concerns addressed and someone seems to be listening finally! I wrote down traits that seemed concerning to me (the list got pretty long...I thought I'd have between 5 and 10 and it was more like 18) loud voice, disconnect within conversation, sensory stimulus issues, hand flapping, etc. and just handed it to her. She asked questions and jotted down examples of each behavior. She referred us on to behavioral health.

I thought more about how a dx could help (not just label) and the kinds of modifications that could be made in school to help ds achieve both academically and socially. It seems like the pros outweigh the cons here.

Anyone know what is next in the process? Will they administer the ADOS (or something like it)?

[ericswifey27]

request testing for your son in writing, use email. Print out a copy for your records. Sometimes if you ask (verbally) it is like you did not say it. Even with a paper trail, follow up on it. Ask when the testing will be done- ask to sign an evaluation form- they have 30 days from the date you sign to do testing.

Which tests are used may depend a lot on personal preference of the therapist, but you also have the right to request a certain test if you feel it is more appropriate or decline a test that you think is inappropriate. The school did both academic performance tests and a Gilliam Asperger's test. Later outside of school he had CARS and ADOS I think. That was when he was diagnosed with HFA or "mild autism" is the term she used.

I would do both the school testing and your own outside testing through your insurance.

Do you have a Regional Center for services for him? They will do their own testing to determine if he qualifies. (Make sure to ask that your son be observed in the classroom, with his peers, or with peers in a "playdate" type setting, like a Boy Scouts get together, or something like that..

My son had one observation with a psychologist in her office, and then a follow up with another psyschologist in the school setting. The second report really "saw" his issues, while the first report did not.


We just recently got (not many) hours of "respite" care per month. It can be used at a local center where they have recreational drop in program after school. They work on social skills, and every little bit counts so we'll take it

Also, use the term "Autism Spectrum Disorder" instead of "Asperger's" on his IEP. It is accurate and atleast in our school district this seems to carry more weight.

If your son were to get the diagnosis, it could certainly help the speech therapist address what areas of weakness she should be focusing in on during therapy sessions, i.e. voice modulation, maintaining a conversation, facial expressions etc.

[kme]

I had similar problems getting help for my son at school b/c he does pretty well academically. He has SPD and a language disorder though and it affects pretty much every aspect of his life. Although we have been told he does not have ASD, he is most definitely "autistic-like".

I got private evals done to present to the Child Find committee to show he does have a disability. The neuropsych we went to said she would be willing to speak to the committe via conference call if necessary b/c she felt strongly he needed an IEP. It wasn't necessary - once they saw the private evals (I had several done) they did an eval and "Suddenly" found all these problems. In fact, they gave him an IEP under autism which is great b/c it gives him access to the special ed teacher, the speech therapist and the OT. My son is doing very well and he has a great special ed teacher who is working with him mostly on staying on task, paying attention, and communicating appropriately with peers and teachers. His goals are not academic but focus on language and executive functioning.

As for therapy for Asperger's - OT, speech therapy (for pragmatics), RDI, social skills classes, social stories, sensory diet, etc. A great book to help is "Overcoming Autism" by Lynn Koegel and Claire LaZebnik. It gives lots of practical advice on how to overcome the symptoms of ASD (including Asperger's) and it is mostly stuff you can do at home on your own.

good luck!!

[jakesmama]

Thank you all so much! This is exactly the info I needed to know in order to advocate properly for ds.
So, from what I'm understanding, this could be a pretty long process? Since it's summer now I don't think he'll be in a group of kids again until September.
His ped asked me how long I had noticed the traits that I wrote down and it was certainly hard to say, "since he was 2." Yikes.

I'm not aware of a regional center like the one mentioned. It could just be that I've never looked into it, though.
His first appointment with the pyschologist is July 28th. Can anyone tell me what this meeting will be like? I assume they aren't going to evaluate him then and there but do more of an intake/screening process.