Hi sciencelover - I registered so I could respond to your message, because your son sounds so similar to ours. (I also have social anxiety, so I'll probably worry about this message for a few days!)
Ours is not quite as advanced, but he taught himself to write at age 3, to add and subtract 2-digit numbers, and to read chapter books before kindergarten. He has sensory issues, like not liking lotion or to brush his teeth, lying down all the time, and poor handwriting. He is a happy person, but has a low frustration tolerance and can't modulate his emotions.
We did a round of testing and the first diagnosis was ADHD. The psychiatrist we went to recognized that other things were going on too, but recommended treating the ADHD first, because it will make other services more successful if he can pay attention.
We tried Ritalin, Concerta, Metadate and Adderall in a variety of doses. No positive impact, just side effects. I find it hard to get people to believe me.
We tried Tenex, which is a blood pressure medication used off-label for ADHD. Nothing good happened. He was tired, irritable, and at a higher dose got a very bad headache. No positive impact.
We tried Zoloft, with the idea that it would reduce anxiety or OCD tendencies and smooth out negative emotions, so maybe he wouldn't react so strongly to everything. It worked for that, but his impulsivity was worse and became more obvious, because he didn't care as much about consequences.
At this point, the psychiatrist is leaning toward saying he is on the autism spectrum or has a social communication disorder with ADHD. (My son looks people in the eye and has some friends, but his stories do not make much sense and you have to ask him questions.) I get frustrated too with how doctors and therapists focus on one thing like ADHD and see everything through that prism, but I can also see now that they have to make it fit in certain boxes to get insurance coverage and services at the school.
It appears from articles on the internet that kids on the autism spectrum with ADHD tend not to respond reliably or predictably to ADHD medication. Perhaps kids with other issues, like expressive language disorder and ADHD, don't respond to the typical ADHD medications as well.
Our son is going to get a full evaluation at his school next month. I am hoping they will diagnose an expressive language disorder qualifying him for speech and language services, OT for his sensory issues, and maybe even a behavior intervention person to help him learn how to respond appropriately in the moment.
The next medication that we can try is an anti-psychotic, Abilify, which I understand is approved at a low-level dose for autism and is being prescribed off-label for kids with ADHD who don't respond to the typical ADHD medications. Like all the medications, it has serious side effects to consider. I think Abilify is used to control tics as well, or something in this category of medications is. The psychiatrist said Abilify has fewer negative side effects than Risperdal and the others. As I understand it, the mechanism is sort-of the opposite of the stimulant medications. Also, I think it's one where we should know pretty quickly if it helps.
Anyway, I mostly wanted to say that I sympathize. Our psychiatrist said that she would have recommended the stimulant medications first even if his other issues had been more clear, because they are the most benign of the medications that kids try for these issues - the kids respond quickly (or not) and the medication is in and out of their systems quickly, and if it works, the other treatments progress more quickly and effectively. At least now I don't have to worry about him ever abusing stimulants!
