The parents knew something is not right with him developmentally. He is two and has routine tantrums that last more than 20 minutes, he has great difficulty with transitions, speech and other behaviors that baffle and exhaust them. Armed with the knowledge that something is wrong they were able to get speech therapy, but no diagnosis and no plan for addressing the behavioral issues.
I wasn't surprised to hear this because so many families have this story, or a version of it. It's important to know that all professionals and doctors do not know how to diagnosis kids with autism spectrum disorder (ASD). It’s important to know that only a small percentage of pediatricians use a comprehensive developmental diagnostic tool for children, there is no one tool used by all pediatricians/doctors and most practicing pediatricians do not have expertise in diagnosing ASD, especially in young children. If a child is not showing the classic signs of autism, like head banging, hand flapping and noises instead of words they can go undiagnosed. I thought I had a terrific pediatrician who could tell me everything about my child, until I called and told her he seemed to not hear me (even though I knew he could hear) he wasn’t responding when I was called his name and the only thing he wanted to these days was crawl out of his crib in the middle of the night, find the VCR and play video’s. I was worried and she said “Donna I know you, he’s just spoiled”. She was not a bad pediatrician, she was simply not trained to ASD because until recently only psychologists and psychiatrists had an understanding of the disorder.
Just before Nicholas’ first evaluation a friend of mine, who also had a high functioning child with ASD, told me “Keep Nicholas up all night the day before your intake. Because he will be tired he will be much more likely to act out. The last thing you want to have happen on examination day is for Nicky to have a great day and they think he’s okay or only see a little of what you see everyday. That’s not good they need to see the behaviors that got you there and no sleep usually helps with that”. I took her advice and it helped Nicholas was frustrated and in the small time allotted for the examination, he showed them exactly what they needed to see to confirm he needed help.
2. In the future if anyone is going to consult, diagnose, advise you regarding your child make sure that they have the experience diagnosing children with developmental disabilities’ – and that they are presently up to date with the new information regarding ASD.
3. Before any evaluations go online to the CDC website and review the developmental guidelines they have that posted. Reading this information first will give you a chance to see important milestones and think about your child’s progress before an evaluation. It will help you to be confident and prepared to ask questions or better answer their questions. www.cdc.gov/ncbddd/autism/actearly
5. Follow your gut, no matter what the professionals tell you until you believe you have found the truth.
6. To help our children get an honest evaluation we will have to go against what we all do naturally as parents, paint the best picture of our child, and explore their weakness's