Tuesday, October 6, 2009

Drawing boxes

Well, I am officially off and running on my medical transcription courses. Within the next year, I will be a medical transcriptionist. Why is that so exciting? I will be able to work from home. I won't be so drained by work that I won't be able to do anything else. I'm excited to be learning again and have something to do with my mind. I'm doing the course through Career Step, and it's being entirely paid for by the Office of Vocational Rehabilitation, books and CDs and everything. This is the second time in my life that having a "disability" has done something good for me, made something easier. I'm being spared the $2000 it takes to go through this program because of my autism. In case you're wondering, the other time was the lines in Disney World.

We're getting there, I guess, with the Medical Assisstance and SSI, too. SSI is sending me for a "mental evaluation" by one of their own psychologists on October 14th. I'm very anxious about it. I have no framework in my mind for what to expect from this 2-hour appointment. What will they ask me? What if I lose my words before we're done? What if they conclude that I don't have autism, and I have something... else? That would certainly mess up my whole application process. Doctors can be really, really stupid, you know. In a way, my anxiety is going to work for my benefit, because it makes my autism symptoms show more. Still, it's not a fun way to feel.

The last piece of the puzzle for Medical Assisstance is a letter from my psychiatrist that explains my diagnosis, my capabilities, and what the doctor foresees for my future. The problem with that is as follows: my psychiatrist doesn't get it. Yes, she specializes is autism spectrum disorders. I've only met her twice, though, and she seems to think that because I can sit and talk with her for 15 minutes, I should be capable of living on my own. Can I go off on a minor tangent here? You've been warned. Here I go.

Doctors diagnose autism based on the DSM-IV, a manual that lists a set of criteria. If you meet the criteria (6 of the following 12, for example), then they will diagnose you with a given disorder. Especially with autism, the problem is that doctors don't adhere to the boxes drawn by the manual. The DSM says that there are three autism spectrum disorders (ASDs): Asperger's Syndrome, Autistic Disorder, and PDD-NOS (when someone meets most, but not all of, the criteria for Asperger's or autism). Generally, Asperger's is seen as less severe than autism, although I can guarantee you that the social issues present in a severe case of Asperger's can make that person more disabled than a mild case of autism. In order to be diagnosed with Asperger's, the criteria say that in childhood, the person must show no speech/language delay, no delay in self-help skills, and no lack of curiosity about the environment. Now, I spoke on time, even though my language wasn't conversational. The problem is that I did have a lack of self-help skills and lack of curiosity about the environment. I was, socially, in my own world. However, my psychiatrist's office ignores what the DSM says and, instead, decides that (this is a paraphrase), "People with autism act like there is no one else in the world. They don't care about people. They have very low IQs. They also don't have sensory issues." This frustrates me greatly, because they're drawing their own boxes for the ASDs instead of adhering to the way the DSM draws the boxes.

Why does this matter? For one, I have a thing about things being right. I like things to be right. I want my diagnosis to be right. If you ask anyone who is fairly familiar with ASDs, I don't quite act like someone with Asperger's. The best descriptor, even though it's not a diagnostic term, is high functioning autism (HFA). My severe sensory issues, language problems, significant auditory processing issues, and self-injurious are all more common in HFA than in Asperger's. The other big reason it matters, the huge reason, is for Medical Assistance and SSI. They're much more likely to give it to me if they write "autistic disorder" on that little paper than if they write "Asperger's Syndrome," as ridiculous as that may sound. It shouldn't be that way, but it is. But, the psychiatrist's office likes to draw its own boxes, as so many doctors do, and therefore, they have the potential to really mess me up. Just because I can talk to you in an office for 15 minutes does not mean... does not mean anything. It means that I can talk to you in an office for 15 minutes, not that I can not to you on the street, not that I could have talked to you 2 hours ago, not that I can talk to you for 2 hours in an office. Certainly not that I have Asperger's, not that I can live alone. Quit it with the box drawing, would you?


  1. Lydia, this is great! To have the course paid for and to have the ability to work from home. I pray it will work out for you.

  2. Well before I forget to say, CONGRATULATIONS on your new career! That's really great news!

    Now for the rant - the one thing that INFURIATES me more than anything else is so called professionals trying to pigeon hole people on the spectrum. Some I have come across have been good but I'm afraid to say most have been rubbish. I've lost count of the number of times I've sat in a doctors office and had to virtually give a tutorial on autism. Unfortunately doctors don't get a segment in their training on ASD (maybe they should?) and it really REALLY shows. They read a bit of a text book and think the know all the answers. They don't. This is where autism mums step in and fight for their kids as usual. Maybe you should get your mum or Leigh to go with you to the psych and explain the 15 minute chat thing - or just send her your post. Like you say, loosing you words will be grotty for you but at least it will show your symptoms.

    Keep smiling - soon you'll be earning money while your with Elsie, how good can it get? :D

  3. Congratulations on getting underway with the medical transcriptionist studies! That sounds like such a winner for you.

    The diagnosis interaction sounds terribly frustrating though, and obviously with consequences well beyond frustration. One thing that jumps out at me is the weirdness about them saying that people with autism don't have sensory issues. What the heck is that about? I don't understand the impulse to separate the two, especially since I've read so much about autism and sensory issues going hand in glove. But I've encountered that impulse in other contexts... might need to blog about this myself... might need to link to this post when I do so, if that's OK! :-)

  4. Wow. Where does your psych get her info? No sensory issues if you have autism, um, she needs to update her reading. I completely understand your frustration. I get into the same panic often about my HF son - that someone who has spent 15 min. with him, as he tries his best to control himself, will take away all of his services that he so desperately needs.
    I know that it's so hard to trust that everything will work out ok, but I'll be praying that you'll feel God's love around you at that appt. and that all of the right things happen for you.