Astrid’s Journal

A judge required a Florida school district to pay $720,000 for private education of an autistic young adult because they allegedly failed to provide him with the necessary education and training he was entitled to. The young man is 22 years old and is facing another five years in private education, in hopes of getting him to achieve the desired academic and life skills.

Details of the case are not given. Allegedly, the school district failed to provide Drew Sammons with a free and appropriate education by making him graduate and leave the school district while he didn’t meet appropriate requirements. The district, however, claims that he did pass a particular test, called FCAT or something (I don’t know what that test is for but it looks like a standardized test). In the Netherlands, it would be ridiculous if a family demanded a child remain in education beyond a certain age (usually 20), and certainly if that child passed a standardized test. Of course, standards in special schools are a little different, cause there training is focused more on life skills than academics, but students will still be made to leave when they’ve passed the standardized test for their particular type of high school, and this may include passing with accommodations. Doesn’t matter whether that disabled student has the life skills to make it in the outside world or even the study skills to carry with him into college - I didn’t either. Further training or therapy is paid for by health insurance or the government, not school districts - and even when the child is still in school, only special education schools will provide such things as occupational therapy or speech therapy, not regular schools.

But there is another, much more fundamental, issue raised within this case: do children or adults with disabilities need to be trained until they have reached a particular level of skills set for them? This man is 22, a few months older than me, and he’s required to undergo five more years of private educatioon and behavioral therapy to equip him (hopefully) with the academic and life skills he allegedly needs. Have the parents bothered to realize how much pressure all this training and therapy and treatment and education may be placing on their son? Can they possibly accept that their son may not reach the standard of achievement they determined for him? I’m pretty afraid that the parents run a risk of having to blame everything their son is lacking that they didn’t want him to lack, on poor education.

My parents are somewhat the same. They will not sue my old training home to make them pay the cost of having me retrained in Deventer - they don’t have any decision-making power over me and, should I’ve gone to that place, the government or my health insurance company would’ve paid anyway -, but they are of the same opinion: because I failed independent living, my old training home failed in providing me the skills I needed for that. They don’t say that my high school failed in preparing me for college, because they apparently know that school isn’t going to teach you how to learn but how to graduate. Training home doesn’t have a graduation exam. There are life skills goals - like an IEP has goals, too -, but if you don’t meet them, that doesn’t necessarily say that your training has failed. I didn’t meet the majority of the goals put on my last goals list at training home. That’s not because no-one tried to teach me or because I didn’t try to learn, but it happened anyway. And while I believe it ought to have sent a message that simply sending me to Nijmegen to live independently, might not work, I’ve never held training home accountable for not teaching me life skills.

And even if I had been saying that my training had failed - which I refuse to say, but many others do say -, that doesn’t mean I ought to be in training for another five years. Even if I did say that high school should’ve taught me study skills and didn’t, I still wouldn’t want to be in “college prep” school for another five years. What if I still don’t have the life skills and study skills I need after those five years? What if Drew still hasn’t met his parents’ goals for him after five years in private school? Will the family sue again, demanding the school pay for yet another training/education program? Please, parents, realize that just because your child has IEP goals, doesn’t mean he will reach them. And just because an education or training may not have been the best it could’ve been - which neither my high school nor my training home nor any other training or educaiton I’ve been in, have been -, doesn’t mean you ought to be in training and education and behavioral therapy programs for the rest of your life.

A few weeks ago, an Ontario facility for people with developmental disabilities, Christian Horizons, was penalized by the Human Rights Tribunal for having discriminated against gays. The reason was that they have a Lifestyle Morality Statement (LMS) thar prohibits such activities as lying, premarital sex, illegal drug use and homosexual behavior. A woman was employed by the agency, signed the LMS, but later entered a lesbian relationship anyway. She was disciplined by the agency, then resigned and took Christian Horizons to court.

There are several interesting issues surrounding this case. Firstly, of course, the LMS may be discriminatory, but the former employee signed it anyway. I’m not sure what legisliation is like in Canada, but in the Netherlands, such Statements are invalid if they violate law, even if they’ve been signed. I am not sure, however, how strict non-discrimination legislation is. I have, for example, seen many job offerings that require applicants to be of a certain religion. As far as I understand it, this is acceptable only if the employer has strong reasons to discriminate, and they ought to make these reasons clear and may of course be taken to the Commission for Equal Treatment (our anti-discrimination tribunal) for this.

In Ontario, apparently, an agency is allowed to discriminate only if it only serves people of that particular religion or race or whatever. For example, if Christian Horizons had required that clients adhere to the LMS, too, then they would’ve been eligible for exemption from non-discrimination legislation, cause then they would be serving only an exclusive group of people. However, now that they serve all developmentally disabled people, regardless of religion, race, or even sexual orientation, they are not allowed to discriminate against their employees, either. This may be a useful way of preserving religious freedom while protecting people against discrimination, but I can understand that it sends the message that if only Christian Horizons were a little less tolerant, they wouldn’t have been penalized.

Silent protests are a great way of making your opinion know - without screaming or arguing or fighting over it. Silence can say more than words. For this reason, there are silent protests for a variety of issues. Two in the U.S. are the Day of Silence for gay rights and the Day of Silent Solidarity for the pro-life cause. Some people, particularly school officials where students would be participating, prohibit silent protests, cause, according to them, it would disrupt the educational process. Or is it the issue?

If you prohibit one form of silent protest, you should also prohibit the other, or if you allow one, you should allow the other, too. This would make it possible to decide whether it’s the issue that’s prohibited (which would be a violation of the constitutional right to free speech) or the method being used. After all, most people would participate in eithe rof these prosts, not both (I’m an exception), because a pro-lifer who supports gay rights or a pro-choicer who opposes them, is a rarity. In my opinion, these protests should ber allowed, but if they are not, then none should be.

Blindness and visual imparment make up their own disability category, with product and service providers catering specifically to that community. Autism spectrum disorders, at least in the Netherlands, do not. “Actually, you don’t belong here, you don’t have a psychiatric illness,” nurses in the hospital have been telling me repeatedly. Yet I was diagnosed for the first time by a doctor in training to become a psychiatrist, both of my diagnosticians worked for mental health agencies, I had been in outpatient treatment with someone called a social psychiatric nurse, I qualify for support services under mental health, and I recognize many behaviors in my fellow patients, with various forms of mental illness, on the psychiatric ward.

“You don’t belong there, you’re not intellectually disabled,” my social worker tells me when I propose we call an agency for the mentally retarded to see if I can be placed there. Yet I have always received support services from agencies catering (partly or mostly) to the intellectually disabled, the people who first (unofficially) recognized my autism, worked for an agency that serves those with intellectual disabilities, my old special education school used to suspect I had an intellectual disability, and I used to recognize many behaviors in my fellow clients, who were mentally retarded, in training home.

Autism services are shattered all over the place. For adults, it is the mental health system or the system for those with developmental disabilities. For children, in the Netherlands, it is also the child/youth service system. The question whether you should be in service with a mental health agency or with an agency for those with intellectual disabilities, used to seem to be something simply about IQ: those with an IQ below 85, went to the intellectual disability agency, and those with an IQ above 85, went to the mental health agency. This post is too brief to go into the controversies around “functioning levels” or the significance measured IQ plays in them, but I used to think it worked that way. Not anymore. The RIBW, which is the Dutch agency for supported and sheltered living for those with mental illness, refused me last sumemr because I’m also blind. An agency that caters mostly to those with physical impairments but also to those with developmental disabilities, ended up accepting me. Another former training home client, who has a form of autism as well as a mild intellectual disability, ended up being accepted by the RIBW in his town.

In education, it’s not much easier. Some children with ASDs who need special education will be accepted into what is called cluster 2 special education, the school system for those with hearing impairments and speech/language difficulties. Others will end up in cluster 3, which is the school system for those with physical and/or intellectual disabilities. Most end up in cluster 4, which includes schools for those with emotional disturbance and severe psychiatric illness. IN the USA, children with autism or Asperger’s qualify fir IEPs under “other health impairment” - never mind that autistics possibly make up a larger portion of the school district’s population than those who are legally blind. (Statistically, blindness occurs in one in hundred individuals, while autism occurs in at most one in 150, but children are overrepresented among autistics and underrepresented amogn the blind.)

But, of course, the questions i not so much which bureaucratic service system will take you. Well, it is a question I face, of course, now that I need to find myself a new place to live, but it is not what affects me most. More important is which support appraoch most fits me. I am not particularly helped with the continuous rehabilitative model used in psychiatry and in most RIBWs. After all, even the “re” in “rehabilitative” makes no sense - I was never a normally-functioning person, and there is no normally-functioning person hidden behind me, so I have no need to become one (again). Resocialization - there are plans to move me to a resocialization ward - to me means regaining the functioning I had before I became unstalbe, not gaining functioning that I didn’t have then, either. Also, psychiatric medications will not cause my autistic symptoms to go away. I may take a tranquillizer to calm me when I’m melting down, but that’s about it. But I’m glad that a nurse helpe dme develop a crisis signaling plan - even though it’s not been updated in four months -, and I takew advantage of every opportunity to learn from my fellow patients and the nurses in the psychiatric hospital. On the other hand, I am not helped by being treated like I have a diminished rational understanding of things, either, and too practical an approach will not work. But alternative communication methods and daily schedules do work for me, and I used to take advantage of whatever I could learn from my intellectually disabled peers and the staff at training home.

But even the question of which support method suits me best, is not the most important thing. The mos timportant thing to me is the identity component. Autistics make up their won community, that borders with the intellectual disability community and the psychiatric patients community. Personally, I take the best of both. I feel more connected with the intellectual disability community, perhaps because of the developmental nature of my disability and its being congenital, as well as the fact that intellectual disability professionals tend to understand behavioral issues, while psychiatric illness professionals don’t tend to understand developmental deficits. But I’m not sure. Maybe, fifteen years from now, when all the autistics diagnosed in the late 1990s and early 2000s, are adults, we will have a fully formed autism/autistic community, with its own service system, that doesn’t place us into boxes that we fit into somewhat but just not quite. It’s one of the dreams that I hold onto - only fifteen years is such a long time!

I found out that the next Disability Blog Carnival will be about disability identity and disability culture, and I don’t know what to write about. Oh well, in fact, I could write many different posts, and I think I’m going to. Not just as a way of contributing to the carnival (after all, then there could be an entire carnival just for my posts), but as a sort of self-explorative project. You see, I have many questions relating to this subject, and have long been thinking what I would be doing with them. Now I remember that, in 2004, I had a sort of journaling project around Dean Tuttle’s book Self-Esteem and Adjusting with Blindness, and I could do a similar thing.

First off, let me examine what relevance the terms “identity” and “culture” have in light of disability. Disability culture is often referred to as the disability rights movement, but what if you happen to identify as disabled but are not particularly active within the disability rights movement? Is identifying with a particular adjective (eg. disabled) the same as belonging to that culture? And does wanting to belong to a certian culture require that you adhere to that culture’s majority opinion?

Let’s look at other sort so cultures and identities. Ethnic identity for example. In the Netherlands, there is an ongoing debate about whether muslims are part of Dutch culture. Geert Wilders, a radical right-wing politician, at one point wanted (and I believe he still is of that opinion) to replace the constitunional part that prohibits discrimination with something about our Dutch culture being grounded on judeo-christian and humanistic principles. So that would mean that muslims are not part of Dutch culture anymore. Yet many muslims very strongly identify as belonging to the Dutch - and no-one would legally deny them this right, especially if they have a Dutch passport. But are they still “real” Dutchmen if they choose to remain professing muslims?

Within the various disability communities, there is a similar connection between identity and culture and between culture and political or philosophical opinions. Deaf culture, for example, includes the use of sign language and, often, a strong position against cochlear implants. With other disabilities, major associations of people with that disability dictate what their specific disability culture should be like. For instance, the loudest voice within the blindness community is that of the NFB, which calls out for the use of braille and cane travel and the belief that blindness in itself should not limit a person’s ability to achieve the same goals that sighted people reach. Autistic community, at least internationally, is a little more inclusive, in that those who don’t live independently and those deemed “low-functioning” can still be part of it. Even so, I still feel a little paranoid about the way my fellow autistics will think of my having been hospitalized for half a year now and having failed independent living despite having had lots of support - while many autistics have to survive without any support. The Dutch autistic community is more exclusive. I refuse to join the autistic self-advocacy organization here, because, in my opinion, it discriminates against “low-functioning” autistics by welcomign those with at least average intelligence only and making all sorts of attributions about them that have nothing to do with “functioning levels” whatsoever. Can I still identify with the Dutch autistic community even if I emphatically do not agree with the majority opinion held within that community on certain issues?

Of course, a community needs some core beliefs to build itself around. About a year ago, I was criticizing Autistics.org for presumably claiming to be the real voice of autism, and Amanda Baggs corrected me by saying that they meant to claim that autistics are the real voice of autism, as opposed to parents. Even so, they wouldn’t post an article from an autistic person who happens to want to be cured.

However, even if a particular disability culture excludes you, or you feel alienated from that disability culture, can you still claim disability identity? I’m not sure whether the autistic community still wants me, given the fact that my current life is so contradictory to what autistics are wanting to achieve (and I still want, too), and I certainly don’t belong to blind culture, due to my way too dependent living situation. Can I then still identify as blind and as autistic? I certainly do identify as both, in that I accept that both characteristics are part of who I am. But I must say, I identify more as autistic than as blind, due to the fact that the autistic community relates more to my experiences. I used to be far more active on blindness support lists, but always felt very much alienated from everyone else on those lists. I at least so far don’t have that feeling (or only a little bit) on autistic support lists, but maybe I will if they all decide to lecture me on how I should get to know autistic role models who live independently and have familes and hold down jobs and wouldn’t be hospitalized if their life depended on it (unless a shrink thought so as well and had them committed involuntarily for safety reasons, of course) - which is pretty much how the blindness community drove me away a few years ago.

I just read an article in the most recent issue of Future Reflections (the magazine of the National Organization of Parents of Blind Children). Of course, it was about equal expectations, as this organization aims towards the “good enough” standard for disability rights: blind children should be expected to achieve at least the same as sighted children.

What struck me, however, was how the writer emphasized completely the same expectations. For example, blind children should be expected, according to him, to have the same reading speed in braille as sighted children do with print: the commonly-accepted belief that braille readers read only 120 words per minute, while sighted print readers read at least 300, should be abandoned.

I have no problem with encouraging reading, and stimulating a child to read faster than what is believed to be the norm. Automatically giving braille reades double time on reading tests (as happens in the Netherlands) is stupid. After all, we won’t have double time to complete our job projects either. However, if a child cannot read as fast as his sighted peers, this is not in itself a dramatic problem. I have always hated reading test, cause I was very slow even for a braille reader. I have no idea of my current reading speed, and don’t know how it would be measured most accurately, as I rarely if ever read from braille paper now (I read using my braille display), so I think measurign my braille display reading speed would be more realistic than having me read from paper. In any case, I’m pretty certain that I won’t even reach the 120 words benchmark believed to be the norm for blind readers. However, I rarely required extra time on tests in school (I was entitled to 20% extra time), even foreign language reading tests. The reason is that, while I cannot read as fast as my sighted counterparts, I don’t need to read something as often in order to remember it.

I did have academic problems due to my slow reading speed. For instance, in Dutch literature, where my sighted peers didn’t read a book multiple times either, it took me considerably longer to finish the project. In foreign languages, I was closer to my peers, because of my better fluency in these languages (for example, most people take longer to read an English book than that same book in Dutch, but I don’t).

I was a good student with above-average grades in high school and college and got an excellent grade on the one test I took at university, three days before my hospitalization. I was not a straight A student. Maybe I would’ve been one if I’d been able to read 300 words per minute, but I didn’t reach that point. Still, I was better than most of my sighted age peers academically. I may not have been better than my imaginary sighted clone - or whatever that “full potential” thing is considered to be -, but there is no such clone.

I am all in favor of equal expectations. If possible, this includes stimulating a child to reach the same objectives their non-disabled peers reach. After all, you don’t want to have the situation where you expect the child to go to college somehow when she’s grown-up but don’t care how she’s going to manage her reading now that she’s in third grade. Just because a child is blind, doesn’t mean she cannot achieve the same academic goals as her sighted peers - and that may include, for some, that they will eventually read 300 words per minute as an adult. However, if a child happens to not meet a particular expectation that her sighted peers do meet (such as 130 words per minute reading speed in third grade), that doesn’t mean there is no way she is eventually going to go to college. If a child, blind or sighted, lacks particular skills, do you need to force her to acquire them exactly as her peers do, at any cost (and note how much extra training children with disabilities already get to normalize them, leaving hardly any time for them to be children), or can you also encourage her to use the skills she does have (such as an excellent memory) to compensate for her weaknesses? Setting short-term objectives (such as a third-grader reaching age-appropriate reading goals) is important, because it will encourage a chidl to learn when she’s capable of it and it will allow you as a parent or teacher to spot potential deficits if she still turns out to have difficulties. However, just because a child doesn’t read at his grade level, doesn’t mean she won’t go to college or get employment. Not all sighted children read at grade level, either.

As a side note, of course my slow reading was influenced by factors relating to my blindness and the expectations set for a blind child. For one thing, I started out as a print reader even though my vision was too poor for print. However, I was stimulated to read (my mother and sister are both avid readers). Maybe I would’ve achieved higher if the double time standard hadn’t existed in the Netherlands or if I’d been exposed to braille from an early age on. I just want to say that just because a blind child doesn’t have the exact same abilities that her sighted peers do, doesn’t mean she cannot achieve, or that she’s not expected to achieve in the long run.

Well, I’ve known this forever, but according to this news story, it’s fairly ground-breaking research suggesting this: atypical anti-psychotics change metabolism. In lab rats given olanzapine (Zyprexa), abdominal fat and blood glucose were significantly increased compared to rats given the classic anti-psychotic haloperidol (Haldol) and rats who did not receive either drug. These are both symptoms of metabolic syndrome, which is a risk factor for heart disease and type 2 diabetes. So what did you say, newer anti-psychotics have fewer side effects? A smaller risk of extrapyramidal effects, maybe - and note that a smaller risk does not mean no risk -, but not less serious side effects. Besides, these measures were found after the rats had been exposed to the drug for a period of weeks. Several weeks to months is also the usual time period for evaluating effects on humans. However, I may have stopped Risperdal after 2 1/2 months, but most people are on atypical anti-psychotics for years, so I assume effects would be even worse over a longer time period.

Today, I feel that I’m not good enough for neurodiversity. It’s Autism Awareness Month in the USA, and of course this means that the neurodiversity activists jump up to interrupt the thousands of autism recovery parents who claim their child was cured by some unapproved and unproven treatment. They always hint at how wonderful autistics are, how their parents should love them for who they are, rather than wanting to turn them into NTs. And yet, there is still some sort of conditionality in disability rights: if you have capabilities, prove it and you will be de-institutionalized, get rid of your chelative and the ABA therapist will stop wastign his behavior modification therapy time on you. Or is it just me?

Today, I read several posts about legislation protecting the rights of people with disabilities, forcing de-institutionalization, etc., mostly from the USA. I’ve also been reading up a lot about Dutch legislation regarding forced commitment and treatment and restraining measures (under which time-out falls in the Netherlands) and seen I should’ve been asked to give consent for my January 24 treatment plan (a patient has the right to informed consent, but I thought that just concerned drugs) and most certainly for the time-out policy because, as a voluntarily committed patient, restraint isn’t possible unless the patient’s given consent. Yet now yesterday a nurse threatened to ask for time-out permission from the doctor again (we removed it out of the treatment plan two weeks ago). I’d decided not to complain about the treatment without consent of last January because it is three months ago, but now that it may happen again, I’m thinking whether I am allowed to stand up for my rights. Or is that just another variation of claiming the right to be autistic - which autistic self-advocates don’t see as a problem, but the rest of the world does?

I didn’t use to know my rights. I know them now. Can I stick up for them? Or is the only way to stick up for my rights, to prove that I’m capable enough to have these rights. The hospital uses whatever definition of me that suits them the best on a given moment: I am good enough if they want me to go to the open ward, but bad enough if they want to put me into time-out.

Why is it that curebies always seem to want an environmental cause for autism? I mean, I don’t generally follow the vaccine-causation debate. I think as far as mercury goes, it’s stupid, because mercury poisoning and autism are clearly two different disorders. On the other hand, I won’t deny that there could be some children or adults with autism where the autism was caused or agravated by some environmental factor, like a toxin or a viral infection. I don’t believe that, in order to be a neurodiversity activist, I need to claimt hat my or tohers’ autism is congenital. In fact, in my own case, I assume multiple causative factors: some genetics (my father has some autistic traits, but I have no diagnosed autistics in my family), premature birth and resulting brain damage, and possibly other factors. But why on earth des in need to be an environmental toxin causing the autism?

It seems to be that some curebies believe that, because autism should be environmentally caused, it can be treated - and if it’d been a genetic, congential condition, it would not be cureable. Well, let me tell you one thing: many diseases that are environmentally caused, cannot be treated, let alone cured. The inevitable comparison factor for autism, at least according to the curebies, ie. cancer, comes to mind: everyone knows that some cancers are caused or agravated by environmental toxins, and many are partly caused by lifestyle factors, and yet removing the environmental toxins is generally not possible and will not treat or cure the cancer. If a treatable condition is found in a specific child, such as high levels of mecury, and that child happens to be autistic, then of course chelate away. And if a child truly does have a predispostion for vaccine injury, and the resulting conditon might agravate autism, then of course the parents may be angry with the vaccinne business. However, that is all individual children we speak about, not the general autistic population.

In my opinion, I do not dismiss the idea that some autistics might’ve become autistic in part because of environmental factors, but this is a case-by-case issue. And to cure or not to cure has nothing to do with causation, but is a wholly different medical and ethical and disability rights debate.

So, politician Geert Wilders’ anti-islam movie has finally been released. According to the news, it’s not as bad as had been expected, and it’s basically just a collection of old news clips and the like. Well, politically, of course I disagree with the suggestion that islam equals terrorism, so I’m still not too content with this movie. But, one thing I do hope, is that now the endless fussing about it in the media will finally be over. The extreme media attention Wilders got, leaves even more room for him to ventilate his radical ideas and to bring out aggression among fundamentalists. Besides, I’m fed up with that entire Wilders person and the continuous stream of media attention for a small number of terrorists who happen to be muslims, that I’ve been needing to put up with ever since 9/11. Sometiems, it makes me sarcastic to think that terrorists can just stop carrying out real attacks: they just need to suggest that they’re planning one, and the entire world will be turned upside down to avoid it anyway.