Why does diagnosis take SO LONG!?!?!?

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OK, I started having concerns over a year ago. Finally decided I should make an appt. for some sort of assessment in November. So, at the end of November I called our local child find and got an appointment for early May. In February I heard about Kennedy Krieger and did an online assessment and have been waiting my turn for appt. since then - a 6-8 month wait. In April we got an appt. through Kennedy Krieger for an occupational therapy appt. where we learned he has low muscle tone, poor muscle planning and muscle organization and more. She recommended at least weekly therapy for these things through preschool/child find services.

The beginning of May I had my intake appt. with Child Find. Tuesday (May 26th) they had ther meeting and yes, they decided he requires further/complete testing. They'll send out a form for me to sign and then they'll call me for appts. My pediatrician at my son's 4 year well check the end of April said I was doing everything I could and to keep him informed.

So, I started this the end of November and all I've gotten so far, nearly June, six months later is an occupational therapy eval and a preliminary "he needs more testing" through the school system!

This is just maddening! In the meantime, I've been reading and talking and learning and I "KNOW" he has Asperger's, but I still don't know how to help him with speech and only generally how to help with motor skills. Why does it have to take so long??? It's maddening!

It took us a long time also. I started with a phone call thru the school district in Oct last year, then about 3 weeks later an email, then in Dec I finally got a Dr's appt thru Kaiser for the ASD, which the Dr blew me off because my son looked him in the eyes . Then nothing........



Then about the end of March begining of April, the school district blew my phone up, and appts needed to be made NOW! So we went thru thier prelim, and they agreed that his speech delays were the most important thing to take care of, they also stated he needed different testing as the testing they gave him, well he was too sofisticated for, so we got a second appt. At that appt, they agreed that he had some other issues to deal with. So came the 3rd appt, which was round tabled with a bunch of people and me. After talking with them about my concerns and things we had been dealing with, they were shocked that the Dr blew us off so easily, til they heard the Dr's name and then came the crash of faces, apparently he's known for not doing his job.

Anyways, my point is, it does take a long time thru the school. They have something like 90 days to start your processing, but that doesn't include weekends and holidays and school holidays (which they take off every chance they get) all those days add up to months.

I started about 9 months ago trying to get an assessment. I went to the GP to inquire about sleeping issues/night terrors and some behavior issues. The GP wrote us a referal for a pediatrician (you have to have a referal for one in Canada) because of sleep issues. In his note to the pediatrician he wrote in all bold faced capital letters "NO BEHAVIOR PROBLEM". My daughter was well behaved at the appointment, so CLEARLY I must have been lying. However, the pediatrician was much more observant. She noticed the toe walking and the hyperactivity right away. We ended up having our meeting in the waiting/play area so that she could observe her a little bit more. This gal was thinking AD/HD, but mentioned AS because of the toe walking thing. She sent us to an orthopedic doctor who concluded that the toe walking was "non-idiopathic" and refered us on to child psychiatrist. The child psychiatrist has conducted several assessments and has interviewed me alone for some family history. The child psychiatrist has now refered us on to speech and language pathologist for a pragmatic language assessment. More than likely we will still end up seeing a neurologist or something similar for IQ testing and maybe even some brain scans. It is a lot of stuff to go through, but I really like the idea that the evaluation is so comprehensive. Regardless of the outcome with respect to a "label", there is so much information being collected that we will certainly end up with a plan to address the problem areas regardless of wheather or not anyone ever decides to call it AS or OCD or ADD. The end result will be a plan that is unique to my child!

I'm lucky, it only took a meeting with a GP, a few sessions with a psychiatrist and then a few weeks wait whilst she wrote up the diagnostic report and then I was officially diagnosed.
It took months and months for my younger brother though.

The standard wait is between 2 and 6 months for the initial assessment, and then you may wait up to 6 weeks for a report. The reason? Not enough professionals qualified to conduct the assessments. That's it in a nutshell.

Yep, that is standard. To wait the amount of time you have waited is incredible.

My son was on a neuropsych wait list for 6 months. He is a good doctor so it was worth it. Nate ended up being this persons last private patient ever.