Expert: Trey McGowan - 1/7/2008

Question
Dear Trey,

My Younger brother was diagnosed with autism at an early age, and the past couple of years I have been considering being tested myself. I hear autism can run in families, and my parents have told me they have suspicions i may have symptoms.

I have always had trouble with spacial awareness, to the extent that I have trouble distinguishing between left and right. I had to quit driving lessons becuase I would find following rules of the road confusing. Even after being driven/driving the same route into town for 18 years, I still required someone to tell me which turning to take. Giving directions is even more difficult, as I have to picture roads or buildings that I can't even see. People accuse me of exaggerating this problem, becuase I'm an intellegent individual, but this inability genuinely bothers me.

I also have problems with my memory sometimes, especially when it applies to locations. At school I often forgot which classroom to go to, and I don't recognise locations readily. Remebering friends addresses, phone numbers and occasionally even names was difficult. What I find even more confusing is family trees. I get confused when I try to picture family trees and how people are related. The concept of cousins is especially perplexing. When reading a book or watching a film i usually end up asking for someone to explain to me which characters are related to whom. I don't seem to have many sensory problems, though I do have an unusually high pain threshold. Also, my hearing is not too good but if i hear music I especially don't like i tend to get disproportionatly angry or upset about it, to the extent that I will avoid social situations where I know there will be 'bad' music playing, or leave the room if I can't change the music.

I have many friends, but I can't seem to form strong relationships. I have never been close to my parents, and although I know that should, I feel little fondness for them, as though they were just distant friends. The same applies with potential partners. All my relationships thus far have failed becuase I just don't feel enough towards them, and can't understand why they feel differently.

In comparison to myself now, I could be considered a very antisocial child. I barely spoke for the first 2 years of secondary school, but now that I've left home and found my feet I feel I don't have any social problems. I suffered depression in my teens, but though I feel I have mainly resolved my adolescent issues my problem with my sense of direction and memory I find very annoying, and i'm curious to find out more.

Who should I contact if I would like to get tested, and do you think this sounds like something diagnosable? I'm due to start university this year, and maybe I might be entitled to financial or educational help.

Answer
Hello there, Penny!

Ah, late-diagnosis autism. A topic that is near and dear to my heart! ... well, maybe 'near', anyway. A lot of young adults and even older ones have started looking at the new sciences and diagnoses of autism and gone 'Hmmm...', so certainly don't feel that you'd be the first, nor would you be the last!

The diagnosis of autism in an adult has come a long way, mostly helped along by the diagnosis of autism in children. It is, after all, recognized that this isn't a recent problem, so much as one that has recently been more identifiable. Therefore, even if it might not have been diagnosable back when you yourself were young, it may very well be able to be IDed now.

I'm not sure where you are, so I can't suggest an exact 'who to contact', but if you check around for local Developmental Disorder chapters, most of them are either geared specifically toward ASD (and will say so), or can direct you to a location that is. You may have to look a bit to find one who diagnoses it in adults and teens, but there are many more of them than there used to be; it shouldn't be difficult to find somewhere, even if it's a little travel away. Try Googling 'Autism testing' and your State/Province or even city, and you should collect a small body of places to start your search at. Be sure to try and get either a body of information from your parents about how you used to be, or see if the doctor wants to hear from them directly. After all, you might not be able to answer *all* the questions of your young years!

Now, the possible bad news: depending on where you are, you may have a hard fight ahead of you if you go searching for financial or educational help. High-functioning autism is not recognized in some locations as a pervasive enough disorder for individuals to require specialized assistance. I, myself, am able to receive Ontario Disability Support, but it does take direct proof from the doctor, so the diagnosis may need to be more than just a brief letter-writing even in Ontario. I'm not saying that you shouldn't fight for it, particularly if you are having difficulties with such things, but that it may very well *be* a fight. Fortunately, the same people who will be diagnosing you will often be able to put you in contact with chapters who can help out with these sort of things, if they don't do it themselves. So you likely won't be doing it alone.

The big question of 'should you' ultimately can't be answered by anyone but yourself. A lot of people find peace of mind knowing that they aren't alone in the world, but others are disturbed to find they have something pervasively 'wrong' with them. It can get you specialized help, or it might make you feel like you have more of a fight. However, the most important thing is, in the end, how you feel about it.

For me, my own belief? I'm right there with 'peace of mind': knowing what is wrong can go a long way to giving the person avenues of how to fix it, or at least adapt to it. And if you are indeed high-functioning autistic, knowing that can give you a wide support group of other people to talk to about common problems, or a common pool of aid. Even without the financial support, trust me when I say that the *social* support can go miles toward helping. And the identification of a problem ultimately brings with it a few coping mechanisms that you might find go a long way to helping you in the big scary world out there.

If you want more help, or just to comment, follow-up, or whatever, feel free to ask more! And if you can give me even a general location for yourself, I might be able to help out with local chapters/doctors/et cetera who do testing, if you can't find any yourself. Good luck with your decision, which ever way it goes!

Trey