Astrid’s Journal

Arda and I finished my list of advantages and disadvantages of different university majors today. Also contacted the student counsellor who specializes in disability services. At first, I was scared that she’d make the same “I only see blind people once or so” type of statement that she made last year, while I realize I’m not such a great student who will do fine if she’s just given her books in an accessible format - which I doubt is possible. Then, as I tried to clarify myself to Arda, she got into how we had to mention that I’m on the autistic spectrum as well. So what if we told them? I became scared that the student counsellor would be like: well, I’ve seen blind people before and I’ve seen autistics before, but a blind and autistic person doesn’t belong in college. I’m really not used to this yet, of course. I E-mailed Yvonne (a classmate) yesterday to tell her, cause she’d been asking me about my behavior many times before and now she was asking me if blindness was my only disability. She reacted quite positively. Much to my surprise, so did the student counsellor. She got into a brief explanation of how they could help autistic students and that they were planning on setting up some sort of buddy system for autistics, to become effective this fall, etc. Now of course I will still have to get info from the directors of studies for all of these three majors - linguistics, philosophy and religious studies (not to be confused with theology). I’m pretty sure at least one of them will panic, but well. Man, it makes me feel strange: I’ve fully overcome my fear of telling people that I’m blind, and now I have to tell them that I’m autistic as well? I’m not even sure yet what I think of the label myself, even though I’ve claimed to be an advocate for autistic civil rights for years. I do feel glad most people react positively at least. We have an appointment with the student counsellor next week.

Do labels change me? The simple answer is no. I’ve always highlighted this and, on a rational level, I still believe it. No-one who knows me well has regarded me any differently after we found out the mental health folks labeled me autistic. Worse yet, I still cannot claim, according to Arda, that I’m not social, even though being asocial is one of the core symptoms of my so-called disability and it is probably one of the main reasons why the mental health folks have come to believe I’m on the spectrum, as the social interaction deficits were the ones my parents highlighted most and I was most clear about - cause it’s the thing that I understand best. Still, I’ve not seen anyone here at training home respond differently to me and my parents, besides not saying a word about the label, are still acting the same, too.

And, of course, I haven’t changed. Autism, as well as neurotypicality, is congenital. And so are other characreristics. Like, I didn’t become gifted the day a remedial educationalist identifed me as such. All the identification did, was to highlight that my parents were right.

That “being right” thing works here, too. Arda says the staff long suspected I’m on the spectrum. Yet they can’t label me. It’s even like I only need a label to show future agencies - like I only needed to be labeled gifted to show my high school that I was intellectually capable. Arda even seems to think it was that simple, back in November. I tend to assume it was not, as we were getting stuck quite a bit at the time. That is, however, not anything a label can change. Like, the label of an ASD doesn’t enable the staff to cater their support to what an autistic is supposed to need any more than a staff’s suspection of an ASD - and, in this sense, I sincerely don’t believe the mental health folks have any better power of authority than the staff who’ve known me for a year. Labels can help in clarifying my situation for people who don’t have extensive experience with me, but they will not change the way I respond.

There is, however, another factor to this, that is the fact that I’m still getting stuck. Arda says that, because I’m labeled what they suspected I should be labeled, it means they’re on the right track. I say that they may be on the right track in interpreting my behavior, but the situation was, and still is, clearly not what it should be. That may be cause of my behavior - everything is cause of my behavior, directly or indirectly, cause I belong to a behavioral minority -, but that doesn’t change it. Labels do, hopefully, open the door to a better understanding of and working on this. To expand on the gifted analogy: without my identification as highly intelligent, no-one at the schools for the blind might’ve cared to give me enrichment work. That label didn’t change me as an individual, but it made it easier to understand me.

There is another part to this: labesls don’t help me understand myself even if I have good knowledge of these labels. I have better than average knowledge of autism. Incidentally, last week I almost engaged in a lengthy monologue about autism causation theories (was only stopped cause Marianne made the comment that Kanner’s original article dates from 1942, which I had to correct). That doesn’t mean a label enables me to have a lot of knowledge about myself. This is not only cause each individual is more than their label, but also cause there is a lot of difference between theorectical and practical knowledge. I know almost every bit of theoretical knowledge on autism till April of 2004, but I am seriously lacking in practical, applicable knowledge. I use the word “labeled” to connote that lack of knowledge: just because I understand autism and the mental health folks say I’m on the spectrum, doesn’t mean I understand myself.

Damn! The NT screening test is down - it will let you fill it in but won’t give you your results. Would’ve been a funny thing to quote what it says, cause I know I get nine out of ten questions “correct” and it’s the only place where you’ll be congradulated on being on the autistic spectrum. According to the mental health folks, that’s at least where I fit. They now want me to go to some autistic team or whatever it’s called for further help. That is what that waiting list the folk mentioned before is for. The folk couldn’t really give an indication of how long it’d take, but at least they don’t want to wait till I’m in Nijmegen.

So, what’s next? I found out aabout the whole thing on Friday when Arda called the mental health folk - or really, she called back cause Arda’d been trying to reach her all week. Immediately, we wrote a letter to the family doctor asking for a copy of the mental health paperwork - they don’t send this stuff to the client. After having done this, I stood in the staff’s office for ninety minutes talking to Arda, because I’m sort of confused. Of course, the only thing we can do now is to wait till the waiting list’s over, but well. You know, being labelled and referred for help isn’t such an easy thing and it’s for many reasons related to a lot of issues in my life.

I’m on the public computer, cause mine crashed last week. Father discovered yesterday that it’s the harddrive, so that means I’ll have to send the computer to the manufacturer and I’ve lost two months of data - because I’m a mess at doing back-ups.

Unfortunately, I’ll have my communication psychology retake test next week. Can study (mother E-mailed the reader to me), but am not sure I can take the test cause I don’t have a laptop to take it on. E-mailed Elma to see if there’s a solution, cause I do want to retake it cause I failed the class.

Good news is that I received a letter from SSHN saying they’ll have their next meeting on the 21st (oh, that’s tomorrow) so then they will discuss my case - ie. whether I will get an urgency declaration so that I can get housing sooner. I’m curious as to what’s coming from that.

Albert Mohler has written an article on the implications of a biological basis for homosexuality for pro-life, anti-gay Christians. He first stretches the difficulty both pro-life and pro-choice people face when dealing with the possibility of prenatal testing for homosexuality. After all, pro-life people would oppose abortion, but they generally oppose homosexuality, too. On the other hand, pro-choice folk would have to face the fact that many mothers would abort solely cause their child will be gay - and that communicates that being gay is wrong.

As a pro-lifer and a supporter of gay rights, I don’t have this problem. There is, after all, no right to abortion - never. Gays don’t have a medical problem of homosexuality (it, in fact, hasn’t been in the DSM since 1973), but a social problem of being stigmatized and not tolerated. And even if they had a problem which most people considier medical (like Down Syndrome), that still didn’t make them so flawed that they should be aborted.

Another issue arises with possible treatment. The biggest problem is not, for me, that no-one should want to reverse their homosexuality, but with the fact that unborn babies - or even children - can’t consent. In this respect, it is making someone who may not want it into something they’re not. I might say I personally don’t have a real problem with gays going to re-orientation therapy. It ought to be made clear that behavior modification isn’t going to adjust their biology, but if a homrone were found that could reverse it, I’d not have a problem with adults voluntarily taking it. The problem is forcing it onto someone else.

You might think it strange that I, claiming to be pro-gay, would not have a problem with adults voluntarily taking medication to reverse their sexual preference. Let me clarify this. There is some risk that these adults might get out the word that homosexuality can be cured, so that others might pressure their friends to take the same “treatment”. Well, it’s happening already. Now, treatment is behavioral and, hence, possibly less effective, but some “former homosexuals” claim effectivenss and spread the word to others over the Internet. The only reason why UCLA doesn’t host the Feminine Boys Project anymore, is because public opinion about homosexuality has changed, not because there’s become increased awarenss of its biological basis. ABA is, after all, still widely promoted even though it’s generally accepted that autism has a biological foundation, too. That’s not the point. UCLA probably deemed it unethical to want to eliminate gays. They still think it’s perfectly acceptable to want to eliminate autistics. That’s not my point either. The thing is, UCLA was forcing its feminine boys to become something they may not have chosen to become. Hormones or other biological treatments, if given without consent, would do the same. That’s my main point, and it’s exactly why I don’t have a real problem with adults choosing to go for therapy or to take meds to reverse their homosexuality. The thing is, this would mean parents would abort their gay children, or force them to become straight through hormonal treatment. You just can’t do this to someone else.

Harold Doherty of Facing Autism in New Brunswick posted this article to his blog to prove the harsh realities of autism and living wiht an autistic child. I would not disagree that this child’s behavior is extremely distressing to the parents. I sympathize with this mother’s longing for more support. I can understand that she feels burdened, caring for this child on her own. However, that does not change anything about this boy’s human and civil rights.

I hate some of my own behavior. I hate it when I feel so frustrated and overwhelmed and confused that I throw objects or scream at people. I would love to overcome it. It was in fact what got us to go to the mental health place, and, even when I didn’t take the initiative, I still agreed with it. In fact, I even agreed to some vague idea that I don’t even understand beyond its having a waiting list that’s allegedly not too long. Go figure: I’m not saying I don’t have problems. Much less would I be saying that of anyone else, regardless of diagnosis or severity of behaviors.

I wouldn’t say it shouldn’t be figured out what causes this child to get aggressive and, if possible, to address that cause. For example, if he gets violent when trying to communicate something, his communication abilities should be improved, for example by having him evaluated for alternative augmentative communication or to get him speech therapy. I don’t think anyone, whether they’re autistic or not and whether they consider themselves self-advocates or not, would disagree. In fact, I feel offended by implications that people who advocate for autistic civil rights, don’t think this child has problems. I myself struggle with milder behavior difficulties and don’t have labels, but still consider the problems significant. Simple behavior modificaiton (as in, just punishing me) may not work, but maybe some other strategy will. I wouldn’t have gone to the freaking mental health ccentre if I thought people should just accept my aggression, so don’t pretend that that’s what I say.

What I do say, is that I don’t want to be turned into something I’m not, and I don’t wish that upon anyone, including this child. The aim of support or treatment for this child, or me, or anyone, should not be to “normalize” them. When in the February 21 discussion with the mental health folk, for example, she was asking my father if I could talk on and on about one subject. He said I do that, but it doesn’t bother him. Even if it did bother him, it doesn’t bother me and it doesn’t put people in danger, so there’s no need for me to get over it, much like I don’t need to overcome my high IQ by learning to act dumb. Likewise, a child who spins round objects, doesn’t need to have that behavior extinguished, I think. He might be communicated that others find it inappropriate, if he has the level of understanding to comprehend that, but it’s not something that puts the child or other people in danger. That’s how I mean not forcing someone to become something they are not. It’s perfectly fine to help a child overcome dangerous behavior (if done in an ethical manner), but that doesn’t take away that child’s right to be himself. And yes, this kid *is* autistic, and there’s no point in scratching that off like a mask, cause there is no normal child underneath the autism.

This is by far not unique, but that doesn’t make it any less shocking. It’s the inevitable “extrme behavior calls for extreme measures” logic once again, that leads to nothing less than abuse of disabled children. It doesn’t matter what these children may’ve done, this is unacceptable. Besides, it seems this school has absolutely no knowledge of developmental disabilities or mental illness whatsoever, if they think it’ll do fine to just put a kid in seclusion whenever they’re not behaving. I am glad these parents are standing up for their children’s human rights.

Hmmm, this is interesting. While browsing a Dutch disability agency’s website, I just found out that the largest guide dog school in the Netherlands is going to train some of its dogs to help autistic children. These are dogs who are disqualified as guide dogs, but can still do thigns like watch the child for possible safety hazards, so that the parents won’t have to keep an eye on the child all the time. It’s also said that the child may build companionship with the dog. I’m not sure how it’s going to work out practically, but it seems like quite a nice idea. Still, I wonder whether these dogs will also be trained in ABA techniques :D.

We had provincial elections (yeah, these are the last elections to be held for a few years, the politicians are hoping) yesterday. As I filled out the voting guide, I was surprised at the number of items pertaining to the environment, but that seems like about the only topic provinces have power about. So I pretty much voted cause the provincial parliaments are going to elect the Senate this coming May and I want more Socialists in the Senate. Besides, I don’t care what I’ll be voting for as long as I can get Socialists in office - oh well, not always, cause I voted in favour of the European constitution while the SP opposed it. As it turns out, we will have about three times as many seats in the Senate as we got in 2003: eleven or twelve seats out of 75, while we now have four. The percentage voting for us is a little less than last November when voting for the House of Representatives, but I’m still very happy. Unfortunately, it seems GroenLinks will be losing a seat in the Senate, going from five to four, but I’m not sure about that as the prognoses kept changing yesterday evening and, besides, it’s still a tricky procedure when Senate members are elected indirectly. By the way, the coalition retains its majority support in the Senate - unfortunately. Balkenende, who’s just started his fourth term as prime minister (in five years, go figure), had sparked fear about systematically blocking government policy should they not have majority support, but he was just overreacting.

Now I do feel there was too much fussing in this election about some representatives having two passports - being Dutch citizens and also citizens of another country. Geert Wilders, who didn’t even take part in the provincial elections anyway, had raised suspicion cause these representatives might not be loyal. Well, they swore loyalty to the constitution upon being put in office as representatives, so what does having another passport change about that? Besides, it’s not anything provincial governments are going to decide about and the House of Representatives will have to decide on these matters before the Senate ever can.

So, not all people are like Michael Schiavo, and it pays off. Christa Lilly awoke from a persistent vegetative state after six years. Of course, no-one knows how she will come out, and she even runs a risk of slipping back into the PVS, but it does matter that Christa was given a chance at living. I’m sad she would long have been euthanized if she’d lived here, I guess.