My 13 y/o son has Asperger's Syndrome. It took me 8 years and about 4 different diagnoses before they finally got it right. I took him to at least 5 specialists including West Virginia University, Children's Hospital in DC, UVa, and a small place here where I live where they had him on so much Adderall, he ended up with severe social anxiety because of the Adderall. I kept telling his doctor I thought it was too much and he said no, not at all. Then they added Risperidal which did not help at all. After my son was put on homebound schooling because he would get violent at school, I tapered him down from 60 mg a day to 20 and he did much better but still was having a lot of problems. This is when he had the diagnsosis of Oppositional Defiance Disorder and ADHD. I had to eventually put my son in a mental hospital for a week and detox him. He is off the Adderall now and I will never ever go back to it. Anyway, I had to fight like hell to get my son the help he needed. Everyone kept telling me they thought he had a form of Autism. He has a strange way of doing his math that no teacher has ever been able to figure out, but he gets the answer right and very quickly. He is very particular about what he eats such as textures of is food, things like that. He is very very bright but his communication level is about 4 years behind. He can barely read.
To finally get his diagnosis of Aspergers Syndrome, I actually went online and found a checklist about 4 pages long for Aspergers and low and behold, I checked of almost every symptom on the list. I found him a new doctor and brought that checklist with me along with filling out a lot of other questionaires as well and talking to the doctor. His teachers also filled out questionaires. My son is on SSI Disability and was approved within 3 weeks. No fighting or anything. His official diagnoses are Apsergers and ADHD. At the time he was approved for SSI, his diagnsosis was Pervasive Developmental Disorder and ADHD but if you read the guidelines, it all falls under their rules.
I am happy to say that he is now on a dose of only 10 mg or Ritalin LA twice a day and doing great. He seems to jsut grow out of one phase and then find a new thing to be extremely nit picky about. I think he will do fine when he gets older and be able to find a job. I think it may take him a little bit longer because his communications skills and coping skills are not that good at the moment but we still have time and we work on one things at a time.
Also on another note, I tried the once a week counseling thing for my son and it never worked. He felt too threatened sitting in an office with a doctor asking him all these questions and playing boring board games. What did work was a mentor program where a counseler came and picked him up with other kids in similar situations. They would go do things like play basketball, go fishing, or just go out to eat. This worked so much better because it was much less threatening and he felt more like they were just hanging out and talking. He also felt better knowing he was not the only one in the whole world with this kind of problem. This worked all fine and dandy until one day my son became very angry over a water hose incident, which was totally innocent, and cursed the counselor out and told him to never come back again. I think Aspergers is one of the hardest diabilities to deal with. If you have severe mental retardation, people under stand why you cannot do certain things, if you have ADHD or ADD, people understand that as well, If your blind, people know you can't see, and if you are deaf, they know you can't hear. But when it comes to Aspergers, most children seem normal, they look normal, they function almost normally, but they just can't comprehend, communicate, or cope well with a lot of things very well and become easily frustrated. At least here where I live, people just can't figure that out and my son has been told by his school counselor that if he wanted to be normal, he should start acting normal. I can tell you I wanted to rip his tongue out!!!!!!! Don't you think he would if he could. As if my son asked to be born this way so that everything woudl be twice as hard for him. I tell him how proud I am of him every day, that he has to work twice as hard to be in the grade he should be in and to keep up with all the other kids in his class.
I also want to say fight like hell for your childs rights in the public school system. Your child has every right to a public education and fair treatment as any other child in the school without a disability. My son lost out on 3 years of education because of a school system that did not want to have to deal with him. It took getting an advocate and an attorney to get the school to start giving my son an education and not sending him home every time he said Boo! Your child has rights and you need to be very well-educated in them. Find an advocate in your area and meet with them so you know your rights and dont let the school systems bully your or intimidate you. And do not let a dcotor bully you around either. You know your child best and if you think the medication is too much or something just isnt right, say something or get a second opinion. This is why they make laws protecting people with disabilities. My son can't get back the 3 years of education he lost or the many years of frustration because I didn't know. Find support groups in your area. I do not know where you live but West Virginia University has an awesome center called Autism Training Center and they hold classes all the time. You need to find something like that. It is very very helpful.