Where to start (re: diagnosis)

[Minnie M6]

We definitely want to move forward with having DS 9 evaluated for Asperger's, but I really don't know where to start. Do we need a referral from our pediatrician? and how do we find someone in our area who specializes in Asperger's so that we don't end up with an incorrect diagnosis? And finally, what do I tell DS the evaluation is for? I will sit him down and talk to him about Asperger's once we know for sure, but don't know what to say before the screening.

 

[koolaidmoms]

I would start with your ped. only if you don't know where to go for an evaluation and who is really good in the area around you. We did not need to do that for our DS but we knew where he needed to go once someone doing an evaluation at the school said this might be autism or Asperger's. Also find out if your insurance covers the testing.

As far as telling him use your judgement. My DS, who is much younger, I told him we were going to a special dr and he wanted only to talk to him, play games with him and see how smart he really was and that he wanted to know everything about what he liked and didn't like.

DS still doesn't understand the diagnosis of Asperger's. He doesn't get that everyone does not think the same way he does and that they do not care to know about WDW (his favorite perceverative) or animals as much as he does.

Good luck and big hugs!

 

[debbi801]

I would start with your ped. only if you don't know where to go for an evaluation and who is really good in the area around you. We did not need to do that for our DS but we knew where he needed to go once someone doing an evaluation at the school said this might be autism or Asperger's. Also find out if your insurance covers the testing.
As far as telling him use your judgement. My DS, who is much younger, I told him we were going to a special dr and he wanted only to talk to him, play games with him and see how smart he really was and that he wanted to know everything about what he liked and didn't like.

DS still doesn't understand the diagnosis of Asperger's. He doesn't get that everyone does not think the same way he does and that they do not care to know about WDW (his favorite perceverative) or animals as much as he does.

Good luck and big hugs!

I second all of that. Originally, we started with our pediatrician, who referred us to someone who was totally clueless and did more to hurt the situation than help it at the beginning. He was throwing multiple dx at us just to see if something stuck. Meanwhile, DS was having more and more issues.

We finally found some people through word of mouth and got the testing done. DS met with a neuro-psychologist, a psychiatrist, and an occupational therapist in a group that specializes in ASD and sensory issues. In addition, DH, myself, and his teachers had to complete multiple questionaires and someone came and observed him in school before the dx of Asperger's was given.

We had planned to have additional testing doen through Kennedy Krieger Institute locally. But, they didn't take our insurance, and we didn't have a spare 3K laying around. Luckily, the other specialists that DS saw for testing and that he continues to see for therapy are all covered.

GL!

 

[bookwormde]

Check with your local autism society to see if there is a local parents support group for Aspergers, if so this is a great place to get real world information on what clinicians are competent. Your child does not need to be formally diagnosed to attend a meeting.

The clinical process is often governed by insurance procedures (unless you are doing it out of pocket) so working your way through them is a challenge. Most peds have little idea about Aspergers but if you have a good one often they will work through contracts to find you a good program.

It is really not about finding a single person but a group or medical center who has all the specialties along with the education and broad clinical experience in this area

bookwormde

 

[BeckyScott]

The best information I've gotten has been from other parents.

Not for a diagnosis, but for recommendations. With other parents, you don't have to worry so much about ulterior motive. And most are happy to give you their two cents.

If there isn't a local support group, try going to Yahoo groups and see if there is an autism or Aspergers Yahoo group for your area or state.

Oldest DS, he knows he has some learning problems (although according to the school he is not LD) so that's how we've approached explaining things to him. That we're trying to get some stuff figured out so that he can do better at school, get help if he needs it. He's a little confused as to why this "help" includes identifying facial expressions, but he's going along with it. Our situation is perhaps more difficult in that youngest DS had an autism diagnosis, and oldest DS is very very different, and of course he in no way thinks he resembles his brother.

We don't have an official diagnosis yet, only a screening by the school, so I am in a similar position. I think it depends on where you live. Here, I know where he needs to go, I am having trouble getting an appointment. I went to the school district's autism coordinator for a screening (hey, anything to help get thru the door) and then called the Dept of Mental Health, who also does a screening. Once that is all in place, they will help me get an appointment for a proper eval. You might find that this happens to you, too, even when you figure out where to go, getting an appointment is hard, or they're booked 2 years out, and you'll need to find some sort of referral by someone, not for insurance purposes, but to even get in.

 

[eileenkeeney]

I have Aspergers.

But I also think the label is over used.

Had I been diagnosed as a child, or even just had parents and teachers who were aware of this and familiar with it, I would have had a much easier time as a child.
If I understood it, I would have had a much easier time in my early adulthood.

As a child I would have described myself as being retarded in some areas while being very intelligent in others. The first time I ever saw a movie about someone with autism, my first thought was, that is sort of me, but more extreme.

As for getting a diagnosis, there are advantages and disadvantages.

Some people have been denied health insurance because Aspergers was on their medical record.
This does not seem fair at all, but it does happen.

I would think that just having parents and teachers with an awareness that your child has the condition, and knowledge about the condition, is of significant benefit to the child.


Aspergers comes with its gifts, as well as its disadvantages (as I guess any genetic combination does).
Learning to fully appreciate the gifts, may be as important as learning to compensate for the disadvantages of the condition.

 

[Minnie M6]

Thanks to all of you for responding. I am just getting to read through the replies as our power went out yesterday and just came back on. I have several people in mind who I plan to contact for a work of mouth referral. There is a specialist from Marshall University Autism Training Center who is giving a presentation about Asperger's for educators in our county, and I may be able to go (my mother is a teacher and asked if I could attend), so the presenter may be a good contact as well.
Thanks again, this board is such a supportive, helpful place.

 

[JESW]

We first went through the school psychiatrist as it was HIGHLY recommended that we did. Ds14 was diagnosed at 9 years old in the 3rd grade. When he was in 6th grade we had him tested again but went to a neuro-psychologist (out of pocket) who could do more and different tests at that age. We also needed the results of that testing and the recommendation that ds be taught in a different environment. Our son is VERY smart, but not good with social interactions and "life skills". He also has learning disabilities which includes auditory processing disorder. Public school was a nightmare for him since he couldn't learn the way everyone else did. He has been in a different program (in a different town) for almost 2 years now - BEST thing we ever did. Not every child will need placement, but it is what worked best for our son. Report cards came home last week and he got 4 A's and 2 B's.

Good luck!! It is a long and hard process but beneficial.

Jill