I was just wondering what was everyone's experience in getting their
dx? How long did it take, from when you first started the
process? How many times did the dx change? How old was your
child(ren)? I apologize if this has all been asked of you
before.
Our path on the road to dx started July 1st of this year. We had
some concerns, went to the ped, who said it was some sort of pdd,
something on the spectrum for autism and gave us a referral.
Everywhere I called has a 10+ month waiting list for an official dx -
psych eval! But we were able to get in for an initial
diagnosis/2nd opinion at an Autism Research Center at one of the nearby
universities. They did confirm he's on the spectrum, has
characteristics of autism, asperger's, and pdd-nos, but not sure where
specifically he would fall. We'll know that after he has his psych eval. We're now going through the state's
EI program, and have an evaluation on August 1st. We know for
sure he will need ST, but won't know what others he will need until
after the eval... Everyone I've talked to has told me how lucky I
am to have gotten in so soon, and to have gotten an early dx of asd
with my son so young (he's 30 months).
I'm still very new to all of this and I find this board to be so very
helpful. I have been reading as much as I possibly can on the
boards! I'm just curious as to what other's experiences have
been... I would love to read what you all have done and where
you've gone on your road to dx.
Christie
I was told that PDD-NOS is most commonly used with young children when
they show symptoms of being on the spectrum, but it's not clear where
they are and be/c of their age, the doc doesn't want to label them as
autistic. Does this sound right to anyone else?
Kellie
Yah sounds right to me Kellie from what I've heard on here. If they don't know where to place child, also if child is quite young, they will say pdd-nos. Just from what I've read anyway.
The possibility that my ds may have asd was brought up to me around april I think by my stepmother, who has an autistic child my age. Since then I've read and read and researched and posted and you name it. At first I thought I would prove her wrong, but now I think she may be right. Now it took me awhile to find a place to dx in my area. I first found a place across the state, they sent me paperwork, I filled it out, etc. Then a few weeks later I found a place locally by means of inet that I had never known about (no idea why I didn't find it on any previous inet checks). They sent me paperwork. I dropped it off w/ them this mth I believe, along w/ a video, copies of online tests I had taken, and a daily journal from May to present.
They just called me yesterday and said they wouldn't have an appt until Sept. So the waiting list here isn't at all as bad as some places. Took me longer to find a place and get the paperwork in than it will to be seen I think. I am thinking that so many places have the waiting lists because of the huge rise in this disorder. Even though the waiting list wasn't that long here, the lady still said to me that she was sorry it would be so long but they were getting so many cases to view lately. I wonder why.
Amber
Things are changing for the better......believe it or not!! When we started out on this journey about 14 years ago, aspergers was virtually unheard of in the US. one had to be a "rainman" or worse to be considered autistic.....there was no spectrum....just black or white. We went through years of testing with Bryce from age 2 until finally finding information on the internet and taking that info to the Drs and educating them so that they could make a dx.....at age 10. It was all new to the psych community in ND.......and forget the medical community knowing anything.......they still are in a fog about it! It sucks being first sometimes!! We got the run around for years! When we finally found the aspergers dx it was such a relief......like a breakthrough!! We were excited to hear there were others who shared the same problems.....we had always heard how unique he was!