I also posted this on BT but wanted to post it here also..

wellllllllllllll.. I guess I can try to post about Adam.. Its been so frustrating and confusing and well... who knows.. I'll try to post what I know and all. I take lots of meds and some for seizures that dont help my memory problems and also have comprehension problems also so I might come back and add more.. BUT if any of you have some advice it would be greatly appreciated or questions for me I'll try to answer them.. I've been trying to get help for him and FINALLY he is in counseling and they are finally starting testing for Aspergers, HFA, bipolar and other behavioral problems....

We do know Adam probably has multiple diagnosis because we KNOW he has my rare disease (Gorlin Syndrome also known as Basal Cell Carcinoma Nevus Syndrome),ADHD, and we are also starting to test him for behavorial problems (or AS, HFA, Bipolar or anything else)....

Adam as an infant (as reading thru his records from regional records and baby calendar) seemed a happy baby tho had lots of ear infections and sickness. He was developmental delayed (because of the Gorlin Syndrome). He didnt talk sentences I think til after 2-3 yrs old which complicates the AS diagnosis. As an infant he did lots of stimming.. He would lay on the floor and stare at the ceiling and flap his hands with his feet in the air.. um I dont remember much else of his infancy or toddler...

At 6 yrs old I asked the regional center to have him tested for Aspergers/Autism. They sent him to one of thier specialists. According to HIM.. He said Adam wasn't... He said he had eye contact and was to social. YET I had told him Adam LOVED to draw and was good. He had Adam draw and Adam drew a picture of Adam in a boat and the psych in the ocean and Adam said the psych was being eaten by sharks and was DYING and then they were on the ground and Adam was dancing around him saying YOUR DEAD YOUR DEAD YOUR DEAD and laughing. The psych did say Adam did have some neurological disorders and "stereotypical movement disorder" (the stimming) and said it probably would get worse but wasnt AS...

So the regional center wouldnt take Adam back on..

Adam's stimming has changed from hand flapping to clapping and teeth chomping... His anger and tantrums have gotten worse.

He never seems to show his behavoir at school.. Everyone thinks he is sooo sweet and quiet. When things upset him.. He waits til he gets home and then takes it out on me or his brothers. He has always been in special ed (resource). He had Physical therapy and Occupational therapy and Speech til the past couple yrs. He was diagnosed with Expressive/receptive language disorder when he was younger..

Last yr the school FINALLY saw what I was talking about (after me telling them for like 2 yrs he has problems).. The teacher (who happened to be my 7th grade teacher when I went there) gave an assignment that said, "write about a time you felt like punching someone in the nose". WELL... Adam wrote about how he is going to kill his boy for taking his girlfriend and how he is going to do it.. . THAT got the schools attention!!!! THO I saw it FIRST and called his teacher before school started and warned her.. Adam DOESNT know I know about it. HE WOULDNT tell me about it. He said it was a secret.

The school put him in counseling. The counselor that sees him now agrees he has problems. She also says he has problems with communication and that he cant say what he wants and that leads to him getting angry. SHE DOES see some Aspergers in him.

Here is some of what is going on with him..

1. He AVOIDS eye contact when he can.
2. He DOESNT like to talk unless its stuff he LIKES to talk about.
3. He is an EXCELLENT artist!!
THO he ONLY likes to draw swords, Star Wars, VIOLENT like things like fightings. He was in an art class about 3 yrs ago and the art teacher said he was VERY advanced and was amazed he knew perception and things advanced for his age.
4. He STIMS (hand claps, "chomps" his teeth) when excited
5. He has sensory issues like feel of clothes, sounds, touch of things.
6.Tho he has NO smell (because of Gorlin Syndrome) He cant smell at all.
7. He is extremely tall and I THOUGHT pre-puberty but they say no. He has BO since like 4th grade and hairy legs.
8. He is facinated/obcessed with Star Wars type stuff.
9. He doesn't like being touched.
10. His best friends are like 7-8 yrs old.. He DOES NOT interact with his classmates (6th grade). He is 11 and does NOT interact with kids his age. At school he stays to himself or if he can he plays around the kindergarten or lower grades.
11. He can play with lego's for a LONG time.
12. OHHHHHHHHHHHHH his MOOD SWINGS!!! uggggggggggg He can be fine one minute then in a rage.. Then can be crying... or can be laughing (but not funny laugh).. We never know what will set him off. He DOESNT like change either.. If I say we are going to do something and something happens and it gets changed... He gets so upset. THO if in front of strangers... SOMETIMES he can mellow it and then let loose like in the car or at home.. BUT if his little brother is near... he better watch out. He has started hitting me back when I discipline him.

I think if you made it this long... Im shocked.. To tell you the truth.. As I've studied AS and HFA... I would NOT be surprised as I have told his counselor if I had it also.. I've been so frustrated with my comprehension problems and not understanding things (papers and books) and things people say to me. I also have had periods of clapping (Stimming) at times (tho mostly when by myself) and have TAUGHT myself and WORKED ON trying to keep eye contact Because thats what people have SAID is proper.. I prefer to stay home alone than go out in public.

Anyway.. Sorry to make this long.. I didn't really know how to word this and is one reason I havent posted it yet. IF you have read this and have any advice I would appreciate it.
Thanks so much..
Gina Marie

Hi GinaMarie, I will go and read your thread again where you posted it as well as here, but I just noticed you had no replies at all here. I'm really sorry I hadn't even read this thread before. I'm getting so confused going from here to there etc..
You know there is a condition called "Stereotypic Movement Disorder" that's rarely diagnosed. A couple of people in the Tourette's community that I know have children who have this SMD and not actually TS.
I'm not sure exactly what you're wanting to know. I think that you're doing the right thing with getting the testing for your son. Sometimes in children with multiple conditions going on, it can get really complicated. Some of what you've said about your son sounds a lot like my son when he was little but then, I don't know anything about the Gorlin Syndrome yet. I'll check into that later. Sometimes some of these conditions are like ruled out when assessing a child. e.g. in the tic disorders, just an example, there are actually dozens of conditions that can cause tics that are not technically called tic disorders, so in really complicated situations, doctors need to sometimes rule out some of those other conditions. I'll go read what you've said elsewhere.
take care there,
Lara

Hi Gina, I am so sorry to hear of the long road you have been down with your son to get some sort of diagnosis, although I feel in this case it is a very sketchy one! My son has moderate/severe autism, he is 10. Adam sounds very much AS to me and he needs to be seen by a consultant psychiatrist. No one else can give a diagnosis of AS other than a pdoc (US term?). Anyway, it is also quite usual for one or even both parent to have traits of AS too. My husband has traits but not enough for a diagnosis, he functions ok.

This leads me to you.........I really don't know what the system is like for diagnosing in the US, but here in the UK what I said above is the norm.

I do hope you get some peace of mind and some help for you both

my best wishes