Thursday, July 3, 2014

Getting Real: Questioning a Diagnosis

It has been just over a year since we received the official diagnosis that Little Man had Autism.  It came with relief, answers, and help.  However, in the last year I have found myself living in a lot of doubt.

Autism.  It's a pretty hot topic.  As of now there is only speculation to the cause and "cure" of Autism.  A debate that I am not willing to engage in.  The process to diagnose it can be tedious or simple.  We went the tedious route.  We had phone interviews, a questionnaire (300 pages long), documents from the school, developmental reports, a developmental screening done by a team of experts, and an appointment with the specialist who made the official diagnosis.  It was not done lightly.

At first all of this offered reassurance that yes the diagnosis was right.  However, as time has gone one I have spent hours wondering if something went wrong.  I feel like I'm staninding with a wall of evidence behind me but doubt makes me unable to stand on it's assuances.

Tony and I have sat in a room where we have had multiple professionals say things like, "well, I'm not sure what you told them but..." or "we don't see that here, he's NOT doing that" or "we know a lot of kids have been misdiagnosed."  The "I'm not sure how he got this disagnosis" tends to sting.

As Tony and I dealt with a new situation in which Little Man was not coping well, Tony looked at me and said, "This is how I know it wasn't wrong."  The evidence is there, the behaviors are there.  However, as a mom living in a world that wants to debate my child's disability more then it wants to help my child with his disability it can seem very lonely.

1 comment:

Heather Snyder said...

Regardless of the diagnosis begin right or wrong the important thing is you do everything for your son to live as "normal" of a life as possible. Nothing you are doing is hurting him and whether he has autism or something else you know that he needs sensory help, you know he needs help coping, etc.

As long as you are doing what you feel is right for your son and what you see is helping then that is the best thing for him. Just never let those professionals think that he is unable to do something due to his diagnosis and you will be fine! :D

You are AMAZING parents!! I hope I can be as great an advocate for my own son one day! :)