Today I brought my son back to the peadiatrician who two months ago told us that he “thinks my son has aspbergers”. I went back a lot more informed, and determined to work towards getting a DX, either today, or being refered to someone who could do this.
Right off, he talked with my son for about 10 minutes, asking how things where going, I was quiet and let them have a “chat”. My son was very positive, reported that he was finishing class notes on time, and needing fewer reminders in school to complete tasks. Also, his report card was much better. What he failed to mention, is he is out on a 20 day stress relief due to bullying, and is doing upwards of 2 hours of homework a day (broken up into more manageable units) one on one with mom amoung other things.
I informed the doctor, who went on a tangent about “strattera not being as effective as others with concentration” but that there where little other options for my son, has he reacted badly to stimulants in the past. I suggested, “maybe this is more then ADHD, as you mentioned before, I reall think he has AS. He informed me, that would not have anything to do with attention. I cleared my throat, and we got into a respectful “discussion” about AS, ADHD, co morbidity, and similarities in symptoms. I told him, I did not believe that meds would ever “cure” my sons attention deficit. He thought it was odd I would say this! I pointed out, that the stimulants did nothing before for concentration, which he blamed on a bad reaction. I decided to switch tactics, and brought up the sensory integration issues my son has, and symptoms of dyspraxsia, two other conditions known for co morbidity with Aspbergers. He mumbled on about “not knowing much about that” and mentioned that maybe I knew more. Then we got into a brief debate, about maybe it was not aspbergers at all! As people with Aspbergers can show “great concentration“ and even get “tunnel vision“ with their interests. I wanted to scream, but I remained calm, I explained “yes, so can my son. If it is something he is interested in, like computer art, or one of his fictional TV / Movie characters, he can stay engrossed for days. I also pointed out that while I did a TON of homework with him every day to keep him up in most of his subjects, he was maintaining a B average in Social Studies, for the second term in a row, because that was where his interests are, with Vikings and Exploration, he really “hooked into it“. So, out comes the, “well, some people with ADHD can show interest and concentration in specific areas“. So I had to pull out the narrow interest card again, reminding him of many of my sons past fascinations. And other Autistic behaviours. So, again he turns to not knowing “That much“ and maybe I know more then he does. (I don’t think he was being defensive or smart, he seemed to have respect for my research). I also explained that the problem lay in areas that fell "outside" my sons narrow interests, he just cannot "get into" things that he does not connect with, no matter how many drugs we give him. To this, he admitted that sounded more As then ADHD, and that the tunnel vision "narrow interests" does work the other way, being "no interest" for other things.
After all this, he asked me what I wanted from him, and I was a bit taken aback, I told him I needed a diagnosis, or a referral to someone who could provide one. He asked me “why” I wanted it! He expressed frustration with our medical system, and that another patient he referred to our medical centre did not seem to get anywhere with getting additional services. I informed him, that I did not need anything from our medical system or local hospital, but a DX would open the door for services from our public schools ASD team! Without it, he will continue to not get the identification he needs, and the help that goes with it.
He became very agreeable and cheerfully said “oh, in that case I can Dx him!” All I had to do was fill a form so he could release the DX to the school! He mentioned the ADHD again, so I clarified, “so the Dx will be for Aspbergers and ADHD? And he confirmed it. I asked if I could see the letter first, and he told me I could pick it up, a copy for me, and a copy for the school the following week. So, with a grin on my face, I left the office. Maybe it all came down to his wanting lunch! I dunno.
In all honestly, I am not particularly keen on how this came about, it became apparent this guy did not know what the heck he really is talking about. I think he sees almost all social disorders as being “aspbergers”. But, for the school, I have what I need, that piece of paper that says that my son is special!
The funny thing is, I mentioned to him that nearly a year ago, I met a woman from my town on a guinea pig rescue message board, based out of California. We exchanged pleasantries, but after my internet connection died, we lost touch for 10 months. When I got the internet back about two weeks ago, I found out that her son was Dx’ed Aspbergers, and one of his patients! (not Dx’ed by him however). Stranger yet, she had an appointment with him today too! We lamented a bit about how small a world it is, and how sometimes it is not just the kids with narrow interests, but the parents too.
So, all is well, and then at 6:00pm I get an excited call from him. He is talking a mile a minute about how he was just talking to my “friend” (I did not give any names) and she mentioned some services he was not aware of, so he thinks we should go threw the local ASD clinic and get a “second opinion” on the Dx. Then, they may be able to offer additional help too. (You have to forgive him, he is very new to the area) So, I agree it would be best for my son to be seen by this “other” person and a second opinion is a good idea. I ask however, what does that mean for the letter to the school? And the replies that he is very sure of the Dx, and the letter is still on, he has dictated it for his admin, and it will be ready by next week. I mention that I think I am on a waiting list for a paediatric psychiatrist, and “should” be close to the top. I ask if it a good idea to see where I stand with that appointment, and he told me it could not hurt.
So, that is where we are. With a tentative Dx from a non expert, waiting for two more consults. I find it interesting that I am both worried that the next two experts may “retract” the Dx (you just never know with these medical type people) and leave us hanging again, but at the same time, I don’t feel right about this Dx. It is great from the school end, but it reminds of the time I talked myself into a Bipolar Dx! I worry about what is going to happen in the future, if all it takes to get this stamp of disability is, a consult with a non expert. Is Aspbergers going to turn into the next ADHD epidemic? It just seems wrong to make such a grand Dx, with no nurological, psycholgical, educational or social skills testing...