s/o Aspergers diagnosis or other similar ones

[Night Elf]

As a spin-off, someone was wondering about the helpfulness of an Aspergers diagnosis. How has having a formal diagnosis been helpful for you?

 

What about other diagnoses such as HFA or PDD-NOS? Am I leaving something out?

 

For me, it's been a matter of just having validation that something was going on with my son when I knew there were different issues than a NT child would have. It helped me better understand my son and how to work with the problems that bothered us. We have never received any formal treatment as I could never find anyone that thought he could benefit from any such treatment. I'm not sure what a diagnosis might mean as an adult. We don't feel he would need any special treatment in college but I think we have that option because he has an official diagnosis.

 

Although I'm not sure he would get the diagnosis under the new definition proposed to be in the new DSM V. Some of it, like social skills, have been learned over the years. It would be spot on if I could answer the questions from his early childhood years. He still has problems at age 16 but not to the severe degree of years ago.

[Kathryn]

First, validation. The other big thing at this point is that based on his diagnosis and HIS lack of income, he qualifies for Medicaid. That covers a lot of his therapies and doctor visits. He was in speech and OT before the diagnosis, but now we don't have the copayment. We are on a waiting list for ABA therapy to be covered by the state. We get invited to participate in research studies.

 

I guess that's all for right now. It would enable him to have testing accommodations, but we don't test yet. I'm sure there will be other things to add to the list as he ages..

[MrsMommy]

Our son's autism diagnosis helped get the ball rolling to get him into a special education program when he was three, but since then, we haven't found the diagnosis to be particularly helpful. We've even gone so far as to keep the diagnosis off of his school paperwork...he's eligible for services under the "developmentally delayed" umbrella for a few more years, and we decided, along with support from school officials, that it would be better to not label him with autism officially at the school.

[sparrow]

Ds has a PDD-NOS diagnosis. I just responded in the other thread that I'm not convinced he has it. He has grown into his quirkiness.

 

The diagnosis has not helped, nor has it hindered us.

[Farrar]

I can only speak as a teacher, but I'll say that when I was first teaching and had kids come into the school with the diagnosis of Asperger's, I found it very useful in understanding how to work with that kid... And by the time I left school teaching, I found it downright confusing because there were so many kids with radically different profiles coming in with that diagnosis. It was no longer as useful for me in understanding a particular pattern of behavior and needs.

[Carrie12345]

The *label never helped me, but the information gained from multi-specialist evaluations were priceless. They showed me exactly where help was needed, where the things we'd have to learn to live with were, and identified the "perks" we could play up.

[Elizabeth in MN]

I think the Aspie diagnosis has helped me get services for my dd, but it also hinders me in knowing when to push with a behavior issue.

[Dmmetler]

My belief is that a truly correct DX opens doors and windows-either into services/programs that benefit the child and show obvious gains, or into understanding that leads the parent to be able to better understand the child and help the child help themselves. If neither is the case, the DX is probably wrong. I went through years of having my labels be cerebral palsy/gifted/epilepsy, and years of being told I wasn't trying in therapy and school because in certain areas, I might make very brief gains only to lose them again, and again, and again. It wasn't until I was an adult and got the additional DXs of Apraxia and Visual-Spatial LD that all of a sudden it made SENSE that I'd struggled as much as I had, and I was able to recognize why the strategies I'd devised on my own worked and what else I could do. My brother went through years of different DXs-it wasn't until he was an adult DXed with Aspergers (instead of behavioral disorder, Minimal brain dysfunction, ADD-H, and whatever the other disorder of the day was) that he was able to use his intelligence to research and start figuring out WHY he was able to get multiple college degrees but struggled to get or keep a job and so on.

[sbgrace]

My son was diagnosed pdd-nos at 3.5. I think he may well actually be NVLD though.

 

In the State of Indiana a spectrum diagnosis means health insurance has to cover therapies. So that has been big for us when we were receiving therapies. We have a high deductible plan (5000) now so in actuality it doesn't help us very much. We still pay it all out of pocket. It "counts" though this way.

 

But bigger than that was the validation and being able to put the "does he, doesn't he, what if..." questions behind us and move on toward the future.