I received a call from a lady with CARD (the Center for Autism and Related Disabilities) the other day. Luke's Early Steps (a local early intervention program) teacher had refered him to be evaluated by the lady. She is going to do the ESAC (the Early Screening for Autism and Communication Disorders) with him. She will come a couple of afternoons for a couple of hours. She will ask questions and go through the screening. I am really excited about this. I feel like we are moving in the right direction.
While Cerebral Palsy is a fitting diagnosis, I believe that Autism is what Luke really has. I have gotten so frustrated with his doctors. His pediatrician and his neurologist have children with autism, but they refuse to even talk with me about autism. His pediatrician had a hard time dealing with her son's autism diagnosis. To this day, she still thinks he has a syndrome, but really disagrees with the autism label. When I take Luke to see her, she dances around the autism subject. She will admit that he has "autistic behaviors", but will not diagnose him with autism. His neurologist will not even talk to me about it. So, if he has "autistic behaviors", wouldn't that be good enough for an autism diagnosis? Then, he would be able to received specialized services for the disability.
So, he turns two on August 21st this year. He has an appointment with his pediatrician and his neurologist. I am going to those appointments with guns blazing. We'll have the ESAC evaluation paperwork. I am also going to be sending in a video of Luke to both doctors. I am done dancing.
The following are the reasons I believe autism is the correct diagnosis-
1. He makes little to no eye contact.
2. He flaps
3. He self stems (ie; tapping toys against his teeth, tapping his teeth against hard surfaces)
4. He is developmentally delayed (which could mean other disabilities also)
5. He does not talk, yet he screams
6. He stems vocally (mmmm sounds)
7. He usually wants to be left alone (he does not seek out social interaction)
8. He likes fans and lights (really all things that are bright and spin)
9. He engages in repetitive play (pushes the same button hundreds of times, does the same thing over and over again, etc.)
10. He is hypotonic (low muscle tone)- This could be genetic. I am not Ms. Toned Muscle myself.
There are probably some other things, but come on! I mean, really! Autism should at least be on the table as a diagnosis.
3 comments:
I jsut found your blog and I think it is great for so many reasons. It allows you to think through your feelings and put the on paper. It also allows for other families to see that they are not alone in the stuggles they face when a child is developmentally delayed! I am so proud of you for putting yourself out there and sharing your story with others!!!
P.S. How old is Luke now? I have a lit review I did a while back on the appropriate age to diagnose autism. Shoot me an email at this email (mom2cat@gmail.com) and I will send it to you!!
Carnley
HI!
I felt the same way with Zach at Luke's age!
He also did the things you listed -and his Drs all said he had autistic tendencies - but would never say it WAS ASD.
We saw a DP at 2 years old who quickly ruled out ASD because he did so many other things that were not characteristics of ASD.
As Zach has gotten older I can see now why it isn't ASD but at the same time A LOT of those characteristics are still very much there.
It is so frustrating not knowing what EXACTLY is wrong.
I can't remember have you taken him to a DP yet?
(((((HUGS)))))
Just incase you didn't go back to my comment page: DP stands for developmental pediatrician.
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