DX Day... sort of?

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Today I brought my son back to the peadiatrician who two months ago told us that he “thinks my son has Asperger's”. 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 Asperger's. 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 Asperger's at all! As people with Asperger's 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 Asperger's 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 “Asperger's”. 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 Asperger's, 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 Asperger's 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...

Sounds like the doctor was hoping to avoid putting any additional burden on local medical resources, so was fighting the diagnosis for that reason alone.

Glad to hear that you got a diagnosis, even if it was tentative. Perhaps not a very satisfying one, given the cluelessness of that particular doctor, but I'm sure that they'll do better on the second pass.

The pediatrician is no expert, but he is right that we share "hyperfocus" with ADHD. You need a developmental psychologist or a pediatric neurologist. A team approach is even better.

An evaluation here costs about $1500 and I'm happy to pay it to avoid all the crap. The psych we use for our daughter's periodic educational evaluation doesn't accept anything but cash or credit cards. But she is worth her weight in gold. Her entire focus is developmental disorders and since her credentials are impeccable, the school system cannot argue about anything she recommends. She also understands how to work the school system.

The faster you can get to see a specialist, the better off you'll be. But I have to say - Excellent work on staying tenacious and getting the Dx! It needed to be gotten, and you should soon have that in hand, so you are one step closer, anyways. I have found that doctors are just as fallible and need to be "worked" sometimes, but can be.

Again, Well done.

A parent's intuition is the most valuable tool we have. Good for you for and your son. Hopefully you are one step closer to getting him the services he needs to be successful in school.

Thanks everyone. Apparently the centre he is being reffered to is highly regarded on a national level. I hope that it leads us in the right direction...

hope all goes well ! the fight can be exhausting!

I am a little assured, I was looking at some Ontario info, and the pead is "qualified", so at least the school can't question it, and I am confident in the DX, so maybe I am just making mountains out of mole hills...

I have to say this. Z's Pediatrician flat out told us that she was not qualified to dx Aspergers [thank God for an honest doctor]. He was dxd by his psychiatrist but it took about 4 years. Neuro-psych exams are available and seem to work quicker. We were headed in that direction, but working through the Social Services system is always a slow process.

Good Luck. When you get that dx in hand pounce on the school and get a good IEP in place. Let us know what happens.

Thank you;

I'll have the Dx in hand after the 18th. I am going to hand deliver it that day, and I am already thinking about the specifics that I a m going to demand added to the IEP. Mostly time extensions, both for assigned work and able to push back testing, or eliminate testing in other areas. Also I want to make sure that all feedback he gets is positive right now, and they stop writting curt criticisims on his papers. Like "No excuse for misspelling!".

He has an IEP, I just have not gained anyground with the time extensions, most of the other stuff after 2 months of daily hashing it out is being done, much to my exhaustion.

it has been the end of a long and difficult road, i hope we hit new pavement soon;

He is 12 now, most of this stuff was visible at 4, he slipped through the cracks. He does not have another 4 years to go before we can work stuff out. I have a feeling they won't do neurological testing, I may get some done through a psychologist, he is due for a psychoed in the fall by the school, I am looking into getting a privately done one in Augest / September, because I don't trust the school.

The way I got my son officially diagnosed with PDD-NOS at 3-1/2 was through his special interests. This was prior to AS being a recognized DX in the US. Anyhoo, I'm not the type who cares much what other people think of me so I didn't have any qualms about letting my son take his favorite object out in public. His interest at that time was in electricity and his favorite object was a curling iron.

We go to the checkup and H gets into the exam room and counts all the electrical outlets in the room. The curling iron was dead, BTW, it had no power to burn him or hurt him, it was simply a small item with a plug which he adored. The pediatrician walks in and tries to get the curling iron away from him, and H smacks him very hard on the head with his beloved object. I was surprised it didn't draw blood.

The ped steps back and starts asking the right questions. We get an immediate referral to the university developmental disabilities center.

Sometimes you just have to hit them over the head with it! LOL.

if only my 12 year old walked around with a curling iron! lol!!

As a young child, he was a Thomas Aspie to a -T-

Then his interests seemed to mostly revolve around T.V. shows, pokemon, Ghostbusters, Spiderman, Starwars, indiana jones, star trek, and now James Bond.

That may not seem weird, but it is the level of interst, they consume him, for a much longer time then his peers. He usually gets told to shut up repeatedly, or everything he does, focuses on the interest.

Ghost Busters was the most interesting, GB played one weekend on T.V. for a halloween special, and that was it. he was not done with it for 2 years. He asked for GB toys at christmas, having not been made in any real quantity in 10 years, and not available at all in our stores, we tried to explain to him that "there where no toys". So, he asked Santa instead, 'don't worry, Santa can make some!' So... it was off to Ebay and Flea Markets with us!

He became fasinated with wasps when he was 5... they where his friends. Maybe I should have brought a jar of his friends to an apointment!

Now I would pay good money to see that fracas!

Just to elaborate a bit, we had a small ground wasp nest in our front yard, they did not bother us, we did not bother them. My son was "facinated" with them, and would have conversations with them, keeping his distance at first, then getting closer and closer dispite many warnings and threats. Eventually he would look forward to greeting them when we came home, like a 5 year old would look forward to greeting a parent or dog when they come home. He always had to say good bye to them too...

One day the inevitable happened, and they stung him. He got two stings, and mentally collapsed. It wasn't for the pain, that we secondary to the betrayal! Why, would they do that? He just could not understand for the life of him, he kept his distance afterwards, (moreso anyway) but he never understood why they where so mean...

I had a neighbour help distroy the nest after dusk, it must havebeen huge, because we could not get all the buggers, but their numbers where reduced, and next year they did not come back.

Z has a fascination with animals of any kind. I have seen him with a bee crawling on his hand and whenI asked what he was doing he answered just observing it. On another occaision, with a more agressive species, he was stung. After treating the wound and making sure he did not have an allergic reaction we discussed the incident. his response was that the animal just thought it was protecting itself. He has been more cautious since . I'm just glad it wasn't one of the local copperheads.

For really "close up studies we prefer Zoos, aquariums, books and Discovery channel.

A copperhead would be really bad.

When the first spiderman movie came out, O wanted to be bit by a spider, so he too, would become spiderman...

Fortunately in Canada we don't have any really dangerous varieties of spider. Eventually my sister scared him so bad, he became Terrified of spiders, resulting in a phobia that lasted for years!