Astrid’s Journal

Many people within the neurodiversity movement vigorously oppose the idea of autism as caused by mercury poisoning, or vaccines, or heavy metal poisoning in general for that matter. I understand them. After all, it is not supported by science that autism is caused by vaccinations or mercury. Besides, the “vaccines cause autism” campaign leads a large number of parents to choose against vaccinating their children - which puts them at risk for serious, potentially disabling or even fatal, illnesses. Furthermore, parents who believe that their child’s autism is caused by mercury or other heavy metals, might choose risky treatments such as chelation, which are neither evidence-based nor safe.

However, there is another reason why many neurodiversity activists oppose the theory that autism is caused by vaccines: they claim that autism is present from birth and, hence, there is no “normal” child hiding behind the autistic. This, in my opinion, is a stupid reasoning. After all, it implies that if someone became autistic after birth, then they should be cured. What is the difference between someone disabled from birth and someone disabled since early childhood? And why should the disability be accepted if it’s present from birth, and apparently not if it’s acquired?

My disabilities might not be completely congenital. My blindness, after all, is caused by a condition I acquired in the NICU, and preemies also do run an increased risk of getting autism spectrum disorders, so I might not have been autistic from birth. Does that mean that, naturally, my disabilities are less acceptable than if there were a proven genetic cause for them, and I’d had them since birth? I don’t think so.

I have a problem with the mercury causation theory, because it’s not supported by science and parents who believe it, may put their children on unproven and unsafe treatments. However, whatever caused someone to become autistic, does not and should not influence whether they are acceptable as they are. Whether a disability is congenital or not, should not influence how acceptable it is.

Research foudn that people with mental illness are more likely to die from cardiovasuclar diseases than people in the general population. This is due to many circumstances. Firstly, mentally ill people are more likely to engage in unhealthy lifestyle habits, such as smoking and high-fat eating. However, there are also reasons directly related to their psychiatric illness. For instance, antipsychotic medications have as a potential side effect an increased risk of diabetes and cardiovascular disease. This may be primarily - antipsychotics mess with one’s blood glucose and liver enzymes, for example -, as well as secondarily, due to the fact that antipsychotics often cause weight gain. Hence, people on antipsychotics should be monitored extra carefully for disease risks. Ideally, people on antipsychotics should have regular monitoring of blood pressure, blood glucose, cholesterol and triglycerides (liver enzymes that may be elevated in antipsychotic users). Checking for increased triglyceride levels is in the medication info for Risperdal on the Dutch pharmacy website I use for my medication ingo, and so is the recommendation that diabetics check their blood glucose more often. I don’t know what actually happens as far as testing is concerned - I was never tested for anything, but I’ve only been on an antipsychotic for 2 1/2 months. Even so, someone on an autism list was shocked when I said so, saying I should’ve been checked at baseline.

Another factor of concern is the fact that people with mental illness are relatively unlikely to be screened and properly treated for diseases such as diabetes, high blood pressure and high cholesterol. It is possibly harder for those with psychiatric problems to participate in screening projects, because of the fact that they don’t have as easy access to primary care. In this case, I think it’s important that it is made sure that psychiatric patients get appropriaate medical screening and, if needed, treatment. I’m not sure how this works for people with psychiatric disabilities, but I find it hard to access healthcare independently and know this is a relatively common issue among people with autism. It seems understandable that there’s this same problem in people with mental illnesses like schizophrenia, hence putting them at risk for remainign undiagnosed with potentially dangerous conditions.

Kristina of Autism Vox pointed out this article about an autistic young adult who lives in his own apartment in a supported living residence. I think this article is wonderful. It shows what is possible with a good system of disability services. Ideally, every adult with disabilities could live in the setting they choose with as little or as much support as they need.

Last January, the disability world was outraged at the news of Ashley X’s growth attenuation and hysterectomy. Now we have a similar case in the UK. This time, it’s about a 15-year-old girl with cerebral palsy, whose mother wants doctors to remove her womb to prevent the “indignity” and embarrassment associated with menstruation. Yet now that same menstruation is national news. Speaking of embarrassment. Kate Ansell, a woman with CP, shares why Katie should not have a hysterectomy.

Last Thursday, I had my first appointment at mental health Nijmegen - well, after the get-to-know-you last July. My diagnosis is being done all over again, because the doctor who formerly diagnosed me as autistic, threw out the original testing material and she did not write down why she diagnosed me with an ASD, so the psychologist can’t tell what my diagnosis was based on. This means I’d need to fill out a questionnaire and have a structured interview done, and my parents will need to fill out almost the same developmental questionnaire they got back in February. But psychiatry and clinical psychology are not objective medical specialties, and so with this new evaluation, there is a chance of getting new results - in other words, that my autism diagnosis might not be confirmed this time. Does it really matter?

In part, not really. I don’t buy into the belief that the label you’ve been given by a healthcare professional, defines who or what you are. When I was labeled autistic last March, I didn’t get any more or less autistic than I’d been during the twenty years before, and what will come from my current diagnosis, won’t define how autistic or neurotypical I am: my neurology isn’t going to listen to evaluation results. I’ll still be the same after this evaluation as I am now and I’m now still the same as I was last year - other than my having changed due to circumstances. It’s only that, before last March, I had no official diagnosis, then my diagnosis was an ASD and now it may or may not stay that way. It won’t change who I am.

Unfortunately, the rest of the world doesn’t think so. Autism advocates would discredit me if I lost my diagnosis, because how can someone who isn’t really related to an autistic person, claim to advocate for autistic civil rights? I never cared for this a lot, as my post on March 14 illustrates. This was, of course, two days before my diagnosis, but I didn’t know this at the time.

Did I not worry about what diagnosis I might get? Well, I did. In fact, for a while I worried about being diagnosed with something purely behavioral, like a disruptive behavior disorder or psychopathy or something, because of what I came into the doctor’s office with - aggressive behavior. But I didn’t worry about what actually the disorder was called. After all, contrary to training home staff, I didn’t come to be diagnosed - I came because I wanted help. If I had been labeled something like a DBD, I would most likely have asked what treatment the doctor suggested for that. In fact, I actually agreed to be referred for treatment more than three weeks before I knew my diagnosis.

Now things are a little different. Last February, I’d been looking for help in dealing with my difficulties for nine years, without ever having been properly diagnosed or treated. I and others had had many different paradigms about what caused my difficulties, and accordingly tried many different approaches - in fact, at training home, there was a new one every month -, before we’d ended up in the doctor’s office on December 12, 2006. I was about to have yet another paradigm stuck on me, and yet another approach tried. Yet this one started to work, though I moved not even three months after having started my discussions with Jeanine, and how much progress do you expect in such a short time? Now, I finally found something that helps me, so it’s understandable that I’m not as open about possibly different paradigms as I was before.

Then there’s something related to this, that is worse than ending up with a different paradigm than my old one: ending up with no paradigm at all. In other words, the “fine fine” answer. I half expected this last February - not anymore last March, because I’d been referred for treatment by then -, and it is one of my biggest fears now. What if I were declared fine?

Well, it’s pretty obvious: if I’m said to be fine, I’m likely to lose the support I have now, and will most certainly not get the support I need. After all, someone who is fine apart from blindness, should be able to live independently and manage at university. There’s still this little voice in my head who says that I am capable of this. I picture myself calling Gerda the day I’m given the “fine fine” answer, to tell her I don’t want Marion or Adrie to come anymore, cause really I’m just blind and someone who’s just blind should be able to live independently. Forget about Andrea, my buddy in the autism college project. All blind people arrange their own college education, according to the student counselor, so why don’t I? My mother still believes it’s all a matter of self-confidence, and I’m sometimes tempted to get rid of all support for a while until I fall apart - but how do you define falling apart? -, if only it were so that I won’t risk being given the “fine fine” answer.

“If you hadn’t been disabled…” Many non-disabled people assume that I would’ve been far better off without one or both of my disabilities. My mother hears of a blind, non-autistic acquaintance of my sister’s and wishes all blind people were alike cause then I would be able to do fine at university and live on my own. My father is convinced that I’d have majored in something technical if I hadn’t been blind. Maybe, as a sighted NT, I would’ve majored in biology and lived in a college dorm like my sister. But maybe not.

The first strategy people, including people with disabilities, use to define what life would’ve been like for someone if they hadn’t had their disability, is to define the ways in which their disability is limiting them. For example, I dropped math and science and biology in high school because I wasn’t able to see the graphics one needed to see to follow these subjects, and I almost failed communication skills last year because I wasn’t able to apply the concepts we’d been taught to the given situation. And, when it comes to independent living, I’m not able to manage my own mail cause I can’t read it, and I’m not able to attend formal meetings at agencies alone because I get confused when I don’t know what’s expected of me. This seems to be a fairly surefire way of assessing what life would be like without a disability. However, not really, cause it isn’t black or white. I know a blind biologist, for instance, and several autistics who earned college degrees in social subjects. I also know many other people who don’t have disabilities, who failed math and science and biology and several who failed communication skills last year.

Another strategy is to compare me to people who don’t have my disabilities. This is easier when you have more than one disability, because that way you can discared one disability at a time, and images of someone with one disability, are less diverse than the non-disabled population. So in order to determine what I would’ve been like without autism, just take a blind person who you think has all other important qualities that I have, and decide that I would’ve been like him or her without my autism. In my case, the only important quality is intelligence, so you pick a blind person with high intelligence and decide I would’ve been like that person. This means I would’ve been successful at college and live on my own. Same with an autistic - even though many intelligent autistics don’t live on their own or go to college, but as someone not involved in tha autistic community, you’d only have known the people who make it onto TV.

The problem with this strategy is, of course, that you can’t find someone who is exactly like your disabled loved one, but without their disability. I don’t know my sister’s lbind acquaintance, so how can I be sure that we’re alike aside from the autism? Most likely, we’re not. And where do I find the autistic who has the exact same expression of their disability, and all other qualities the same as me, but who is sighted? I haven’t been able to find such a person.

Then comes the next strategy, which is to compare the disabled person to your image of them before you or they were aware of the impact of their disabilities. This is, in my case, especially possible with my autism, cause I wasn’t diagnosed till age twenty. So you take the expectations you had for me before I was diagnosed with my ASD. Clearly, this image includes success at college and living independently.

Of course, it is possible not to start experiencing visible problems until you’re diagnosed, or to have the problems worsen after a diagnosis, especially when you’ve long pretended to be normal and are now dropping a facade. However, in my case, have I ever actually been successful at college or lived independently? No. And in 2004, when my future image was drawn by my parents, did I have the skills to go to college and live on my own? Not at all.

Then again, is it really about disability? Or is it that the disabled person is not meeting up to what you expected them to be doing, and you chalk it up to disability because this is all you can imagine chalking it up to? Then realize how many non-disabled people are not meeting up to “normal” standards. Not everyone who graduates from my high level high school, will go to university, and many people live with their parents till they’re 25. Of course, statistically, disabled people are more likely to need support and less likely to go to college, but people aren’t statistics, are they? And, especially with someone with congenital disabilities, you cannot see the non-disabled person behind the disability, simply because there is none.

The first few days without risperdal have not been too well, but not extremely bad either. I felt stressed every day, but it was not very much out of propportion, relatively speaking. In this sense, it’s hard that I didn’t keep track of myself re freaking out before I went off risperdal, because it makes it hard to compare notes. I mean, the first week with 0.5mg risperdal went very well, relatively speaking, so it’s no wonder that I freaked out a few times this week.

I also had a brief discussion about freaking out wiht Adrie, one of my support workers, yesterday. She thinks there is a difference between the moments when I freak out to the point of unreachability, and those situations when I panic but I’ll still listen to other people. The latter was what’s been happening both last Tuesday when Adrie was with me and yesterday at Apeldoorn station before going on the train back to Nijmegen from a discussion at the mental health center. This is usually when I don’t know what to do because living here is just too hard. If only a medication helped me solve that!

Well, as of today, I’m officially off risperdal. I called the doctor’s assistant today. Since it’s been going quite well except for last Thursday, and I wasn’t stopping risperdal cause I didn’t need it but cause it wasn’t effective, the doctor agreed to have me quit taking it. Now, I’ll have to see how things go. The first few days are crucial, as withdrawal symptoms generally occur a few days after stopping risperdal. Well, we’ll see.

Stolen from Ballastexistenz.

1. Is there a regular time of day when you compose your posts? Not that I’m aware of, though I think I blog mostly in the evenings.
2. Do you prefer to write a certain number of posts per week (or per month)? Not really, but I do feel weird when I’ve not blogged in a long while.
3. Are you more likely to write a post when you’re happy about the topic, or do you mainly blog when you feel like ranting? I think I’m more of the ranty type.
4. Do you write from notes or an outline, or are your posts mostly spontaneous? I write spontaneously, and everytime I’ve tried to write from notes or an outline, or even consciously picked a subject, it’s failed.
5. Do you try to maintain a central theme for your blog and avoid random topics that don’t fit the theme? Not really, though there are a number of recurring themes in my writing.
6. Are there any interesting rituals associated with your blogging? Not that I know of.

Yesterday was a good day as far as not freaking out is concerned. Today, not so. I traveled to the train station while feeling confused. When I was there, I freaked out cause I had no idea what to do next. The police came and took me to the police station, and eventually they took me home.

Called the doctor’s assistant today. She did not know about my tapering risperdal, because I’d spoken to another medical assistant last week. She also couldn’t reach the doctor, so advised me to continue taking 0.5mg risperdal till this Monday, and call back on Monday when they would be able to talk to the doctor.