From First Concern to Diagnosis - What are the barriers?

Our son is 5, and was recently diagnosed with Aspergers, ODD, and ADHD. However, they noted to RULE OUT the Aspergers. His psychologist and 2 tss workers believe he def has AS, while his one TSS feels he doesn't because he has not been "showing" his temper in front of her yet. I have taken to video taping his episodes. My son is far from stupid, and when i ask him why he acts differently when she is here, he replies, "because she will get me in trouble, so i am better when she is here." I feel lost in translation. Being told one thing, and then another. My son has all the classic symptoms of AS. I just hope he doesn't get lost in this system......

Hi luvinmyaspie.

I so understand your frustration. Because autism spectrum diagnoses are based on behavior, and not a blood test or brain scan or anything like that, there is often disagreement between professionals. You are doing the right thing: documenting what you see, and communicating it.

I know many parents have to take their child to several professionals before they find one who "gets" it. It is important to make sure, especially for a high functioning child, that they are truly expert in ASD and can recognize the disability that is obscured somewhat by the intelligence, large vocabulary, and other gifts of some high functioning children.

My son was born in 2003, and started having seizures in 2004. They ruled it epilepsy. I started feeling something was different at about 2 1/2-3. He is now almost 9 and we just got a formal diagnosis Thursday. I told several people for years that I thought he was autistic and was either ignored or told i was crazy, that he was just babied too much so he is babyish. I am relieved to get the diagnosis, but scared. the process of being diagnosed was fairly short, once i got the ball rolling. He has definite signs and so when doing the eval, the psychologist knew immediately after the initial visit that he was more than likely autistic.

Hi my2hbos, and thank you for sharing your story. It is so frustrating how long it took for you to get a diagnosis even when you had been telling people for years about your suspicions. This happens far too often, as you can see by our IAN data: higher functioning children are diagnosed much, much later: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_13

Parents often say they shared their fears and were dismissed instead of being taken seriously.

Because of this, the American Academy of Pediatrics has urged pediatricians to always take a parent's concerns seriously, and to err on the side of "let's find out what's going on" instead of saying "he's a boy, don't worry, they develop more slowly" and the other things they habitually said in the past.

Connie (IAN Staff) wrote:

Parents often say they shared their fears and were dismissed instead of being taken seriously.

Because of this, the American Academy of Pediatrics has urged pediatricians to always take a parent's concerns seriously, and to err on the side of "let's find out what's going on" instead of saying "he's a boy, don't worry, they develop more slowly" and the other things they habitually said in the past.

Its kinda funny, not haha but ironic...when i finally said something to our pediatrician, he said he always had a feeling but just assumed that his neurologist had already tested him. I learned and I hope others will take my advice, to go with my instinct. If I had said something to our pediatrician years ago, we may have had a diagnosis much earlier but i chose to think it was all in my head. I learned good communication between you and your dr is key. If you have any thoughts something is not right, please talk to your child's dr. You will make such a difference in their lives if you catch ASD earlier