Grandson we are raising is age 5 and has huge port wine stain. Been there since birth on neck, shoulder and arm. It is not growing. He has been tested for autism four times now at state hospital but they say no. But he has self stimming behavior much of time: makes noises, unaware of surroundings, has never talked to or played with a friend at school, some toe walking yet seems of normal intelligence. He sometimes 'comes out of it' for a few minutes at a time, which is one reason they said it wasn't autism. I think because if he 'gets better' then maybe it wasn't autism after all and how would that look? His stimming does not increase or decrease due to tension, it is from sun-up till sun-down.
I see that there is a 'new category' of genetic diseases for usa.gov that says having autism with port wine stains might be a sub-category of autism. How can I find a medical study to put him in or more info? By the way, he was social and normal until age 2 3/4. so if he degraded from normal to this in a matter or a month or two we wonder what is wrong and what it is and will there be any future sensory losses (like is something growing on his nervous system or something?) This would be essential to know. Also, how can we get him matched into some sort of clinical study for this condition?. there was no info on this condition that I could find. The info said it's a 'new category' with no data yet. His port wine stain isn't even noted on any of his medical tests as they said it was irrelevant to his autism symptoms. I very much appreciate any information at all on this. Please someone answer !
You can find a lot of discussions of this issue by googling "autism birth mark".
When you post this type of question, you should describe the details of the stimming, just in case there might be a clue there.
Did you ever go anywhere else than that state hospital? They might have different standards, such that mild autism might be considered normal there. and they might dismiss the birthmark because lots of random people have the same one without any known symptoms of anything. and even when some of them do have autism, they might write it off as a coincidence and not even make a note of it.
You say you have had your grandson evaluated FOUR times for Autism and they keep saying it isn't Autism. Accept that your grandson's issues are not Autism and get on with things. what DO the doctors think is wrong with the little boy? I would assume they would have told you what they think might be the problem…if they think anything is wrong at all. Follow the recommendations of the specialists, they are the experts.
Children can have Autism AND port wine stain but they are NOT connected. Treat the skin condition and the behavior condition but understand they are probably NOT connected.
Do you know what his IQ is yet? if he has a very low IQ he would have some of the behaviors you describe. I am grasping at straws but that is something you should look at. Also, was he exposed to drugs or alcohol during the pregnancy? I know children with prenatal exposure to such things can have severe problems. my friends adopted child has extreme behavior problems because of her first mother's drug use during pregnancy. Also, you should probably ask his pediatrician for a referral to a neurologist to test for seizures and/or any other conditions that might be involved.
I hope you can find a way to help your little grandson. Make sure you take care of yourself because raising a child with special needs is very difficult. I know because my son and foster son both have Autism. take care and good luck finding the answers you need.