Dx for my son today

[Another World]

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...

[Sophist]

Funny how so many experts scoff at seld-diagnoses and yet not so when an uneducated "professional" provides one.

Ah well, good luck with all this, AW.

[Another World]

Funny how so many experts scoff at seld-diagnoses and yet not so when an uneducated "professional" provides one.

Ah well, good luck with all this, AW.

It is... Equally funny is how once a person gets the label, you are hard pressed to find a professional that will question it...

[Blandit]

We took our son to a private, independent child psychologist who actually specialized in ADHD. She originally gave a dx of mildly mentally retarded (when our child was only 3), but later (age 10) gave the AS dx. She was apologetic about the previous one (back in '96) but I gave her a break since the info. about AS was so new at the time. Also the school psychiatrist gave an AS dx in '03. However, my husband dx'd him at age 8 after he heard a radio program about Asberger's and OASIS on a Focus on the Family radio broadcast. He came home from work and was so excited and said, "Honey, I know what Jared has! It's like autism only it's not as severe. It's called AS!" to which I replied, "Oh, that's nice. Now we'll call him 'son afflicted with Asberger instead of J. Dinner is in five minutes." (I really didn't care what we called it, we still had to deal with it and it didn't change a thing) It did seem to give my husband some relief, though.

By the way, we ended up paying over 2000.00 total for the trips to that private psycholgist; out of pocket. (ouch!)

[Another World]

We took our son to a private, independent child psychologist who actually specialized in ADHD. She originally gave a dx of mildly mentally retarded (when our child was only 3), but later (age 10) gave the AS dx. She was apologetic about the previous one (back in '96) but I gave her a break since the info. about AS was so new at the time. Also the school psychiatrist gave an AS dx in '03. However, my husband dx'd him at age 8 after he heard a radio program about Asberger's and OASIS on a Focus on the Family radio broadcast. He came home from work and was so excited and said, "Honey, I know what Jared has! It's like autism only it's not as severe. It's called AS!" to which I replied, "Oh, that's nice. Now we'll call him 'son afflicted with Asberger instead of J. Dinner is in five minutes." (I really didn't care what we called it, we still had to deal with it and it didn't change a thing) It did seem to give my husband some relief, though.

By the way, we ended up paying over 2000.00 total for the trips to that private psycholgist; out of pocket. (ouch!)

That was who DX'ed me with my mish mash of neurological disorders back in the 80's. I have request in for pricing. I am thinking that I may be able to bridge the appointments over two billing periods taking advangtage of 2 fiscal years for insurance in Aug / September. That would give us 1000 worth of coverage. Although, i really want to shop around for someone who specializes in AS.

We may be able to free up some money with a loan around that time t oo. Our houses mortgage is up for renewal. Basically though, we have a hard time right now just getting the bills paid and coping with emergancies. I feel fortunate that we are not relying on social services, or food banks or anything like that, but still, money is very very tight, dispite living ridiculously bare bones.

*sigh* I really seem to have screwed up my life...

[Blandit]

Another World wrote: That was who DX'ed me with my mish mash of neurological disorders back in the 80's.

Are you referring to Dr. Dobson or my husband?! (either way, I'm shocked!)

I understand about the financial crunch. We have usually used our tax returns (thank God for the child tax credit) to pay for unexpected expenses like that. We have been living frugally ever since I can remember and it just keeps getting harder. The kids get bigger, so do their expenses. The economy (at least here) is getting worse all the time. (I knew there must be a reason I was raised poor!)

[Sophist]

Another World wrote: That was who DX'ed me with my mish mash of neurological disorders back in the 80's.

Are you referring to Dr. Dobson or my husband?! (either way, I'm shocked!)

I understand about the financial crunch. We have usually used our tax returns (thank God for the child tax credit) to pay for unexpected expenses like that. We have been living frugally ever since I can remember and it just keeps getting harder. The kids get bigger, so do their expenses. The economy (at least here) is getting worse all the time. (I knew there must be a reason I was raised poor!)

Wow, your husband gets around more than even you realized, eh?

That's funny.

[odeon]

Just an aside on your account, Another World: It's "Asperger" not "AspBerger".

You brought up some interesting points. I've sometimes been wondering if AS is the next ADHD, too.

[oscilor]

I saw my psychiatrist this week. I only see him every few months and this is just routine - I want him on board if I need letters for benefits agencies etc. So anyway he asked if I had any questions for him.

I asked him if he now had a lot of patients who had diagnosed themselves with an ASD and were looking for an official diagnosis. He said (not quite in these words) "well, we don't really deal with that as it's more about education than medication. But I do have many people thinking they have Bipolar since Stephen Fry did a TV programme about it."

That was interesting, but I was a little surprised when he said they didn't deal with ASDs, because I know that there is a diagnostic service for adults with ASDs in Edinburgh, and the psychiatrist who does it is on the same team as mine. And you have to be referred by another psychiatrist. Perhaps he meant that he didn't deal with ASDs after diagnosis?

[Another World]

I saw my psychiatrist this week. I only see him every few months and this is just routine - I want him on board if I need letters for benefits agencies etc. So anyway he asked if I had any questions for him.

I asked him if he now had a lot of patients who had diagnosed themselves with an ASD and were looking for an official diagnosis. He said (not quite in these words) "well, we don't really deal with that as it's more about education than medication. But I do have many people thinking they have Bipolar since Stephen Fry did a TV programme about it."

That was interesting, but I was a little surprised when he said they didn't deal with ASDs, because I know that there is a diagnostic service for adults with ASDs in Edinburgh, and the psychiatrist who does it is on the same team as mine. And you have to be referred by another psychiatrist. Perhaps he meant that he didn't deal with ASDs after diagnosis?

I would get clarification on that... Are you officially Dx'ed? How can you 'not deal with that?"

Something does not sound right... I would get all your ducks in a row, and point blank ask for a referal to the other doctor... Even if just to get a Dx...

[oscilor]

I would get clarification on that... Are you officially Dx'ed? How can you 'not deal with that?"

I was officially dx'd with AS in 2002, before he became my doctor. The person who diagnosed me has the grand title of Adult Autism Coordinator. She works from the same hospital as him, and has a background in speech therapy, I think - plenty of experience with AS. I was referred to her by my GP. Now, she no longer does diagnosing, because she is too busy and the psychiatric team does it. She helped train them. So any adult who wants a diagnosis now has to go through the psychiatric system - but I wonder if this is happening.

It's not true that medication or education are the only things on offer, because there are services for ASD adults here. Not that much, but a more than most places. We have a drop-in centre and an agency for helping people find and retain work, and an outreach support worker who has been quite helpful to me. So I hope he is not turning people away, saying there's nothing to be done.

Despite what he says, this psychiatrist does deal with me. He wrote a letter to back up my application for housing, which states I have ASD. And he referred me to the sleep clinic when I wanted to try melatonin. Even though I do take some medication, he lets me be the expert on that.

But the whole system is very strange.

[Sophist]

Just an aside on your account, Another World: It's "Asperger" not "AspBerger".

You brought up some interesting points. I've sometimes been wondering if AS is the next ADHD, too.

Funny how it likely used to be Aspberg. On WP a long time ago, we all tried to figure out where "Asperger" came from. The closest we could figure was it was taken from the city of Aspberg which would mean "city of aspen".

If it weren't for being named after ol' Hansy, "Aspberger" would probably be more accurate, hehe.

[Another World]

I have always suffered from terrible spelling... coulpled with moderate dyslexia.

It seems to mildly affect how I hear things too.

However I think the southern ontario accent puts a "b" sound between the p and er... making "berger" instead of 'erger'. Then my eyes keep glossing over the correct spelling...

I suppose that is why google keeps telling me I am spelling it wrong!


I thought it was just the "s" needed an apostrophy infront...

Oh well! I suppose after a few more lashings, I am sure you can all forgive me!

[Sophist]

LOL, no worries. Would you love us if we were any less anal-retentive?

[Another World]

maybe...

But I'll take what I get

No worries!