Autism Early Diagnosis, the Wait is Challenging

Experts agree that identifying and treating autism early provides the best opportunity for a positive outcome.

But how to get anyone to believe you?  And when you finally do, where do you get help?

The Frustration

Are you waiting for an evaluation to diagnose or rule out autism? If so the delay may be as frustrating as the lack of assistance.  The wait according to the NIH in July 2017 was 42 months.  That is 3.5 years!  Are you in that category?  Try our 5 Things to Do if You Suspect Autism,  to get a start today.

I knew by the time my daughter was 9-10 months she most likely had autism. When she was close to a year old I contacted our local Early Childhood Intervention program; in Oklahoma, it is called SoonerStart.

When I did, the case manager laughed at me. Apparently, they believed a year”ish” was too early for me to know.  However, I insisted they evaluate her and gave them information about my background, education, and experience.  I honestly believe they would have blown me off otherwise.

After the evaluation, they admitted that they had laughed and didn’t really believe that I could see something so early.  Then the worry set in.  After all that the therapist wanted me to have my daughter evaluated for Rhett syndrome since here signs were so visible and they had never seen a child that young with apparent signs.  Rhett is associated with Autism, is regressive and has the loss of hand usage and a reduced life expectancy, among other things.

The Diagnosis

She started speech therapy with SoonerStart right away and private speech therapy also.  Next, we visited a Neurologist, did genetic testing, there were other possible things he wanted to look for like Angelman syndrome and fragile x.  It took me more than another year to get a diagnosis, so treatment could officially begin.  We began occupational therapy shortly afterward without a diagnosis insurance wouldn’t pay for Occupational Therapy and SoonerStart didn’t have a therapist.

In Oklahoma there is little other therapy that is regularly accessible. What I know now I wish I knew then, what I learned in graduate school about autism is not at all what I have experienced. There has been so much more research in the last 15 years.

You know your child best, be your child’s most vocal advocate! I will be sharing in my posts how to get started right away. The important basic things you can and should be doing with your child and you can do for free right away!  You can start with 5 Things to Do  if you suspect autism.  Watch for our mini-course to start soon.

Having difficulty getting diagnosed? Have an experience to share? Feel free to leave a question or comment.