Astrid’s Journal

On September 22, I painted three different images of what my situation might be like after leaving training home. One is described like this:

Yet there is also this part of mine, that totally incapable girl. She thinks she requires a lot of assistance cause of behavioural/social/communicative difficulties - not just disruptive behaviour. She sees evidence, in the fact that I was at first unable to buy a railroad ticket a few weeks ago (cause the situation confused me), that she can’t do these things for herself (I can buy railroad tickets perfectly well) and, in the fact that Renee left cause she didn’t know what to do, evidence for the idea that she’s truly too difficult to handle and belongs in the mental health system. This is not saying I need 24-hour care or something, but what it says is that I have fundamental impairments in social/behaviourral/communicative functioning that aren’t going to go away once I’m learning to adjust to some emotional difficulties, and that do require to be addressed after I leave training home.

Today, Arda wrote my request for funding for services once I’m in Nijmegen. It finally gave me a clearer picture of where Arda thinks I’ll be on the independence ladder, and one that I agree with. Yet it also means I can now view in my mind the rainbow that my situation has become. There are colors for the housekeeping assistance I’ll need, the independent living support cause of my blindness (reading mail etc.) and cause of my autism spectrum condition, the mobility training I’ll need to learn new routes, support for attending college, and mental health services. And that same rainbow today was black in September. What’s changed?

The biggest thing that’s changed, is actually my attitude. You may think of this what you want, but I think it’s a change for the positive, because I stopped thinking of myself as “totally incapable”. I’m far from that. I certainly do have my difficulties, but I’ve realized - even though it’s not yet a solid realization -, that these don’t alter my abilities. You may think my situation has deteriorated, but I really didn’t lose any skills. All I lost were images of what I might become. Or really, I only lost one image. After all, I can still be a responsible user of services, like many self-advocates are. So maybe what I really did was to realize that a situation in which I need many independent living services and am in the mental health system, doesn’t mean a situation in which I can’t be responsible or a situation where I’m unable to go to college. How stupid from me for writing myself off as “totally incapable”.

I just watched a news show on TV. It discussed the bad services delivered in a Philadelphia living facility in Driebergen, a town near Utrecht. This facility houses people with mild intellectual impairments, many of who also have autism. Last year, the parents complained cause the clients allegedly weren’t getting the support they needed and the facility got paid for. The way Philadelphia puts it, they did not get too little support, but certainly the communication between parents and staff could be better. Also, the staff didn’t have enough expertise as far as autism is concerned and the staff hence didn’t support the clients all that appropriately. This was all last year, but the situation doesn’t seem much better now according to the news program. All clients have care plans now, but the care plans can’t be carried out, Philadelphia is alleged to have said. I can understand this. Even here, care plans usually don’t get written until months into training - mine wasn’t written till August and I’ve been here since January, 2006, and the plan hasn’t been revised ever since August despite its serious inaccuracy. These clients also got goals list after last year’s complaints, only the goals really didn’t get reached. Well, of course, making goals is not a guarantee that a client will make progress, but I can see where they’re coming from: even though I do have goals lists, I didn’t get my first one till March, 2006 and at some points there really wasn’t much clarity as far as how to work on them goes. This is no big problem when learning practical skills, cause the real thing is that I got trained, but it does get somewhat troubling when there are vague goals. For instance, one client at this facility in Driebergen had the goal of coming to work on time. He reached this goal, but when there’s nothing clear as to how he would be trained in achieving this goal, I can imagine that parents get worried. Another thing is that, when parents aren’t given a clear description of expected progress, they may not know what their child is working on. My own parents experienced this, at least, they said so on the mental health interview last February. The difference is that they are not my advocates and if I think I’m not served appropriately, I don’t need my parents to have a formal contract that determines how I should be served. The parents, who are the clients’ advocates in this facility in Driebergen, do need to know how their child will be served, cause the person cannot supposedly stand up for himself when the support is inappropriate. And, of course, the parents do not see how the client is being supported everyday, so they will need to rely on written goals and care plans to make sure the person gets appropriate support. This will also, hopefully, serve in straightening out possible differences of opinion between parents and staff. After all, the parents may have dreams, hopes and expectations for their child, but it’s the staff who see that person everyday and who may see that they aren’t meeting up to that standard. In this sense, I do not think it’s a major problem that the man featured in today’s show, only reached one of his three current goals, but that it apparently wasn’t communicated why he might not meet the other two. This is a big problem I see with training home, too. And as a person who has at least a little insight into my own situation, I at this moment don’t have a problem realizing that I clearly didn’t reach the goal of being able to live fully independently, and that the reason is my behavioral difficulty, but I can understand that my parents don’t see this. This is in part cause of their own shortsightedness where my behavior is concerned, but it is also cause of really poor communication from the staff’s side - but the good thing is that Arda offered to clarify the situation to my mother and she didn’t react, so now it’s up to her. Communication is even more important when the clients aren’t their own advocates, and this seems to be the biggest problem in this facility in Driebergen. Whether the clients really weren’t getting the support they deserved, might just be an issue of poor communication. After all, the father of one man explained that his son should get 24-hour support, but we don’t know what he means by this. Maybe he truly expects a staff member to be beside his son 24/7, and that is fortunately not what 24-hour support is about.

Of course, I’m not going to say that disability support is great here. Really, it isn’t. The whole disability services system is lacking in money and personnel, and this is not a problem of one organization or one facility. The Socialist Party has set up a notifying system for poor disability services, and it needs to be addressed as a political problem. Really, disability service workers are underqualified and underpaid in many settings, and this is likely going to lead to poor care. This is, after all, by far not the first alarming situation coming to the media’s attention. Blaming Philadelphia or this particular fccility - and requiring even more paperwork and bureaucracy, hence taking time away from client support -, will not do anything about the bigger picture.

Yesterday, I failed my communication skills final. Not cause I’d done it badly, but cause I’d not done it at all, cause I went to the wrong classroom and, once I got to the right one, I was late so Dannie had left. Freaked out cause I was confused and this only made it worse, cause Dannie interpreted it as rudeness when really it wasn’t meant as such. Eventually, Elma came round and asked if there was any way to solve this problem and Dannie proposed I go for the retake tomorrow (Wednesday). It will be at 10:30. Stupid thing is I’d scheduled a family doctor’s appointment (cause of recurrent nosebleeds, one more issue I’m afraid will be more difficult to explain than it seems and that hence will go on my hypochondria record) at 9:30. Rescheduled it to next week. But on Monday, still being confused, I had to go to the train. Really, we would have gone out for dinner but I decided against this cause I was really too tired and confused and I didn’t feel comfortable sitting on the dinner table with Dannie when we’d just had this problem. Hope classmates and/or Dannie don’t interpret it as yet more rudeness. Arda says she would’ve done the same thing in my circumstances, but well, whatever.

Today I had a really confusing discussion with Arda. Yesterday as well. Stupid thing is about arrangements for living in Nijmegen. Really, I do want to go to freaking Radboud and that means I need to live in Nijmegen so find housing there, but it’s really all still so unclear and one thing I don’t want is that it will go like everything’s been going forever now. The freaking communication skills thing only made that worse, cause I realize it really was a small thing that caused this trouble and it’s something that happens at the most accommodating schools because someone just forgets to mention something. Like, Dannie genuinely thought I could tell which of the two classrooms would be the preparation room in which I would’ve needed to show up (we have 30 minutes preparation time before doing the exam discussion) and which was the exam taking room cause one door’s sign said “exam taking” and the other said “exam preparation”, but I only saw the “exam taking” sign (oh well, someone else read it) and thought this was a universal sign asking for silence wherever exams are taking place, so didn’t think that perhaps this was the wrong room and the other one had “exam preparation” on its door. However, even if you realize this, you might just forget and an “it’s your responsibility” statement is pretty quickly made by instructors when one of their students gets in trouble even if they don’t mean it literally - perhaps Dannie did think she’d told me about the different door signs (cause she did E-mail me about them for tomorrow). But the point is, even though Saxion is not the most accommodating school I could imagine (and Radboud so far seems at least somewhat better), it really isn’t about accommodations anymore. It’s about bad behavior once again. Elma called training home yesterday saying to Christa (a new staff folk) that I had these problems every week. What did she mean? She was talking about how I had to go to the train but couldn’t find my way. Well, I don’t have that problem each week. She must’ve meant behavioral difficulty. Arda asked me if she knows I’m autistic. Well, duh, of course not. Neither does Dannie. Besides, what would’ve changed if they did, besides them telling me I really can’t be in this program cause it’s too socially demanding (which I could’ve told you ages ago)? It’s only one more quarter (if I pass communication skills tomorrow), so maybe they won’t tell me to quit cause they know I will be quitting soon anyway, but what relevance does the freaking fact that I’m on the spectrum have for my current education? The only thing I could’ve hoped it’d do is to lessen the negative stereotype I created about the blind, but I think I must conclude from my cognitive social psychology book, that stereotypes don’t change like that. The freaking label, further, doesn’t make my behavior any more acceptable. If you knew in advance, like the folks from Radboud, maybe you could tailor possible accommodations to that knowledge so that I might have fewer situations in which I’d freak out, but we’re past that with Saxion. So it’s all about excuses anyway. Who wants an excuse? Elma not, I might hope.

The housing issue got kind of strange this afternoon, cause it is all so unclear and it all so confuses me. I don’t understand the whole thing and all Arda says is that she hopes it will work out. Well, duh! I got to hope so, too. But it’s April and no-one really knows what September will be like. All Arda says is that she doesn’t have expectations of me. Bad thing, after fifteen months of training, but she seems to mean that she doesn’t expect magical improvement from me within the next several months. Well, how, then, does she see me? Yesterday as well as today, she got into vague statements about how I needed to accept needing help and the impact the stupid label would have (never mind that she told me she could write a final report on me a month before I was labeled and I contend I didn’t change cause of labels) and how she couldn’t guarantee anything but she was trying her best, etc. I’m not doubting any of this, but it’s already April and all I’m getting is that Arda doesn’t expect anything of me but knows I’d likely be happiest while at university. It’s the same my mother says, and I agree to that latter statement (I do have expectations of myself and think this is in fact healthy), but my mother and Arda differ wildly on how they realistically see me - at least, I hope they do, cause I hate my mother’s view. I don’t understand Arda’s perspective and it makes me feel like: hell, if you said you could do a final report on me (and maybe only you needed the freaking label to justify my needs) by February, why do you remain so vague? I have decision-making power in certain areas, in that I can decide to go to university (or not, as Arda stressed this afternoon) and choose my major and even eventually was involved in the picking of the most suitable SSHN housing, but “realism” is not the answering of a whole lot of either/or questions. Whether I’m going to clean my kitchen cupboards on my own, is one decision to be made, I agree, but it is going to take me years to answer all of these either/or questions and I probably won’t answer most consciously cause their answers are supposed to be inherent in the biggger picture of my situation created by other more or less consciously made answers. Now I have a situation that is supposed to be “realistic”, yet that I don’t understand cause I don’t see the forest for the trees. Besides, I seem to have completely different abilities depending on circumstances. Arda found that a really interesting comment, but I just find it confusing, because I cannot conform to either image.

Within the autism and autistic communities - the former being domiated by parents of autistics seeking treatment and sometimes cure for autism, the latter dominated by autistic adults who aim to have autism accepted as a matter of neurological diversity -, but also within the wider disability community, phrases like “the voice of” and “speak for” are often used. In autism, we have Autism Speaks, which is a parent-dominated organization, and Autistics.org, which claims to be the real voice of autism because it’s maintained by autistic adults, and in the blind community we have The Voice of the Nation’s Blind, which really is the NFB’s blog. All of these websites claim to speak for respectively severely autistic children who cannot speak for themselves, autistic adults, and the blind in the United States. Do they really do what they claim to be doing? I don’t think so.

It is in an advocacy organization’s nature to have a few people claim to speak for the entire target group of that organization. Even assuming that target group consisted soleley of members who chose to be members of that organization, still they are not all going to Washington to lobby their agendas. All 50,000 NFB members, for example, are not coming to the Washington Seminar. After all, the very point of an organization is so that not everyone has to speak for themselves, in which case they would all be lost in the mass of voices. So the members usually elect a board of directors or representatives for specific events, and these people are supposed to speak for the whole organization. So far, so good. The problem is that the organization’s target group usually is not limited to its members, and even if it were, the organization’s agenda will affect people outside of the target group. For example, the NFB opposes audible traffic signals and tactile warning strips in most circumstances, cause competent blind people are assumed to be able to travel safely without them and having this accommodation in place might send a negative message to others about the blind, to name a few reasons. So at their annual convention, the NFB approves resolutions urging the government to limit the use of audible traffic signals and trctile warning strips. The government listens and audible traffic signals and tactile warning strips are not placed or may even be inactivated. Whom does this affect? Obviously the competent blind travelers for whom audible traffic signals and tactile warning strips are not necessary and who, hence, adopted this resolution. But the NFB has only 50,000 members. There are 1.3 million blind people in the U.S. Many of them may not be as competent at traveling as those in the NFB are. It may not have been intended, but the NFB, with this policy statement, would’ve affected their lives, too. It’s the very reason why there are two organizations of the blind in the U.S. And yet the NFB is calling itself “the voice of the nation’s blind”. Clealry not.

Much in the same way, Autistics.org cannot claim to speak for all autistic people. After all, right now I can only think of five people who regularly contribute articles: Amanda Baggs, Laura Tisoncik, Joel Smith, Phil Schwarz and Michelle Dawson. How can they possibly represent the whole autistic community of North America, much less the rest of the world? Many people might agree with them, but there would still remain many who did not. After all, there are enough autistic people who support the autism community, and many more who don’t think about autism politics at all. And there are also many who don’t have effective communication skills. Who will be speaking for them?

Let’s use an analogy from another group of people who presumably cannot speak for themselves: people with severe brain damage, like Terri Schiavo. In Terri’s case, both Michael Schiavo and the Schindler family claimed to speak for her and to know what she would’ve wanted. But Terri couldn’t have wanted two things, so who was Terri’s real voice? Whom you choose likely depends on your position on such issues as euthanasia. I, for example, would side with the Schindlers cause I’m pro-life, but someone who herself wishes for euthanasia or has a family member who does, might side with Michael Schiavo. My father once made a statement, in a similar discussion to the Terri Schiavo case, only it involved a child, saying that this child really was incapabel of having a will. Hence, it would be a waste of time to wonder what she would’ve wanted: the decision was now with the family. While I strongly disagree with this as a normative thing, it makes quite a bit of sense in defining what actually happens. After all, neither Michael Schiavo, nor the Schindlers, were actually speaking for Terri. They were all speaking for themselves. Perhaps Michael Schiavo couldn’t cope with seeing his wife in the bad state she was in, cause he loved her so much. Perhaps he couldn’t deal with caring for her anymore. Perhaps he wanted her inheritance. This is not meant as a value judgment, it’s just meant to say that he was using his own interest as a frame of refernece. So were the Schindlers. Maybe they couldn’t deal with the possibility of losing Terri. Maybe they hated her and wanted her to suffer. I cannot think of any plausible yet bad reasons for the Schindlers to want Terri to live, but perhaps someone who supports euthanasia can fill me in on that. In any case, they were not speaking for Terri. All they were doing, was speaking from their own perspectives as Terri’s parents. So are autistic children’s parents when they claim to speak for their autistic child - and so are parent’s in general when they claim to speak for a minor. When a parent wants their child to be cured of autism, it really isn’t cause he knows autism is horrible to the child. After all, he cannot look inside his child’s mind and see what autism means to him. When he himself is neurotypical, he also runs a risk of not being able to see the barriers a neurotypical world is imposing on autistic children. What he does know, is how living with an autistic child affects him as a parent. That is in fact what most conventional autism awareness is all about. And I don’t think that’s intrinsically bad. I believe families have the right to speak their minds about how living with an autistic child (or adult) affects their lives. But this is vastly different from speaking for that autistic child or adult. People need to realize and acknowledge that: there is nothing wrong with speaking for yourself, or even speaking for other families with autistic children if they are in the same organization as you and you happen to be a board member, but don’t claim to speak for autistic people.

Now, can autistic people, like those on Autistics.org, speak for autistics? Yes, to a certain degree, just like the NFB can speak for the blind to a certain degree. That is, when people with high-functioning autism were to claim that autistics should be valued cause they are so intelligent, they could legitimately be accused of not speaking for lower-functioning autistics - and, even though I’m high-functioning, they wouldn’t speak for me, either. Same if they denied that autistics exhibited self-injurious behavior, like people in the autism community claim. The thing is, with these statements, autistics would be generalizing their own traits to be all-inclusive of autism, like the blind in the NFB consider being able to travel safely without audible traffic signals to be universal amongst the blind.

Shortly after I was labeled autistic, I wondered whether I could still remain an advocate for autistic civil rights. The reason was, and to a certain degree still is, that I do see myself as having problems. While I cannot tell whether these are due to my autism, I assume they are cause my having them led to my being labeled. Then, when I read the Autistics.org website, I realized they didn’t claim autistics didn’t have problems. In fact, one of their aims is to connect autistics with appropriate services. Furthermore, some contributors with more severe disabilities than I were acknowledging their difficulties. So really autistic advocacy isn’t about bragging about how great being autistic is - and it shouldn’t be.

Now, can the people at Autistics.org or any other autistic advocacy agency claim to speak for low-functioning, non-verbal autistics who allegedly cannot speak for themselves? Not directly, cause they can’t tell what these children or adults would’ve wanted any better than their parents or relatives can. All they can do is to offer insight from an autistic perspective. I do feel autistic people are a more adequate “voice of autism” than families, but I don’t think they can speak for specific autistic children, or that tehy will necessarily speak for all autistics. After all, each individual and each organization or online group still has its own goals. So I think Autistics.org has the same right of calling itself the real voice fo autism as the NFB does with the blind: they are autistic people speaking from their perspectives as autistic people, but there will always be exceptions to the assumptions they make about autistic people. So far, I haven’t seen any in specific cases (including cases where the parents said their child was very different from autistic advocates), but I encourage autistic people and their families to point them out, and I assume so would the Autistics.org staff and other autistic advocates.

By the way, I do not claim to be the voice of autism or anything like it. Neither do I claim to speak for the blind - or have I ever claimed this. With regards to autism, I’m not even sure I speak from an autistic perspective - cause, while I’m autistic, I held the same opinion I do now when I didn’t yet know I was autistic and I didn’t think I was. My opinion on audible traffic signals, or my opinion on anything for that matter, should not be interpreted as typical blind people’s opinion. Neither do I claim my position on autism issues is cause I’m autistic - in fact, I’ve been having some serious problems with this concept. When I post factual information (or what I hope is factual) about autism or blindness, this should be interpreted as coming from a researcher’s desk, sometimes with some personal examples thrown in when I feel I have the understanding to do so. I have enough practical understanding of my blindness to speak from a blind person’s perspective when I write about blindness. I do not have this understanding regarding autism yet. Hence, I do not claim to speak from an autistic perspective even if I really do - in the sense that since I’m autistic, I cannot speak from any other perspective. I hope I will eventually get that practical understanding, but more cause I am looking to understand my own situation than cause I want to be able to claim to speak for autistic people.

Today, it’s three years ago that I stopped thinking I’m on the autism spectrum. Only last year, I was pretty much convinced I’d make it at least three years. Well, not. What does it mean?

One of the big “what if”’s that’s been going on and off in my mind, is what would’ve happened if I was not labeled last month, but at some other time, like years ago or years from now. It was one of the first questions I pondered when I found out about the label: in one sense, getting labeled has gone really quickly - most people I know first have to fight shrinks’ stereotypes for years before finally being taken seriously as possibly autistic -, and yet, it’s taken twenty years. And, even though I’d never seen a psychiatrist in all of these years, educational psychologists etc. are at least supposed to have basic knowledge of what ASDs are, and I’ve seen a few of them. And they all to a certain extent acknowledge my problems, dependiing on what tests they gave me and what other instruments they might’ve used. None said I was fine. That’s somewhat reassuring. After all, if they had said that I was fine, I would’ve had to wonder about even larger inconsistency. Now it’s just that they didn’t know about autism. They might not have thought about it cause no-one else did. After all, in all of my evaluations, the paradigm behind them was pretty clear: in 1997, it was that I was too behaviorally disturbed and had too many self-care problems to go to regular education, and in 1999, it was that I’m too intelligent for low-level high school. In 1998, that was the paradigm, too, but that remedial educationalist did quite a good job of being objwective and looking at the picture from different angles. Now the paradigm may’ve been quite clear, too - I knew the staff here had decided I might be on the spectrum -, but I didn’t want to stick to it too much: I wanted to stick to my own reality, whatever label may or may not be stuck on that, and within the limits of my understanding of my own problems.

Back in 2004, the situation was much clearer, even though I think I couldn’t have explained to a psychiatrist why I thought I was on the spectrum anyway, cause of my real lack of practical understanding of my own problems that was present already at the time. The only problem was that I didn’t get any support - my mother said she’d known for ages that I didn’t have Asperger’s Syndrome (or another ASD, for that matter), my father said I had a “fashion disease” and my tutor called me a hypochondriac behind my back -, and I had no idea how to pursue the whole thing myself - besides, I was a minor anyway. That thing - not knwoing how to do the whole thing anyway - could’ve kept me from seeking help for many more years if the staff didn’t step in. In fact, really, there wasn’t anything that made December, 2006 a particularly good time to seek help. It was just that the staff thought I needed help, so I got help. I did see I was getting stuck, but I’ve been getting stuck to a certain degree for years and I might’ve been able to keep up getting stuck for another so many years. Yet I pursued the mental health thing and ended up getting labeled and being refered for help. And I wonder: why didn’t this happen before?

The reason why it’s a good thing wondering, is that so far, the only things that have changed since I was labeled, changed for the better. So, one might assume, possibly I could’ve gotten stuck a little less when we’d known earlier. Maybe not. Particularly if we’d known by 1997, it would likely have led to my being sent to the multiply handicapped school and I don’t think my former high school would’ve accepted me with a dual disability. It doesn’t matter that they now have had a student with a dual disability in their school for six years, and this student was quite successful academically. Forget about Saxion. Yet Radboud’s so far pretty positive. It makes me wonder. But, of course, it’s 2007 and it won’t be 2004 again - thank goodness. Things could’ve gone differently, but didn’t. So far, things seem to be changing moderately for the positive.

I’m just going to do a list, cause at this moment I’m too confused and tired to write a coherent journal entry.

1. Had my discussion with the student counselor in Nijmegen last Thursday. Well, mostly it was Arda explaining stuff and the student counselor responding with her knowledge. It went quite positively.
2. Talked to Arda about my behavior, ie. freaking out, on Thursday. Reason was that she asked me for tips on how to deal with this behavior. Couldn’t think of any, but tried to explain my point of view when things get out of hand during discussions with her. She sounded pretty negative - later heard from another staff member that she had a bad cold, and forgot to take that into account -, so I didn’t know what to do: I felt I’d accused Arda of doing things wrong while that was not my intention. So I asked Annelie what to do on Friday morning and, with her help, sent Arda an E-mail. She only read it this morning, but still took it to my multidisciplinary discussion.
3. Visited parents on Sunday. Went quite well except for some frustration when Sigrid was helping me read an E-mail from Dannie and accidentally deleted it. Mom got like it being “Astrid day”, ie. my craving attention. Eventually, it got worked out alright.
4. Father fixed my computer. He installed JAWS version 5.10 and MS Office 2003. Spent about the whole afternoon fixing little JAWS bugs, but by the time I brought the computer home on Sunday evening, most bugs were fixed.
5. Looked through information on philosophy and linguistics - particularly course contents - and eventually decided I want to study linguistics anyway, cause it’s more concrete and, hence, more interesting: I thought linguistics was all about dismantling languages, and, while you do get subjects like that (syntax etc.), most classes are really about applied linguistics. E-mailed (well, actually Arda did it cause I was pretty overwhelmed, but from my account) the director of studies to ask him to see if we can make an appointment. Hope it’s going to work out.
6. Received (well, Arda did) copy of report from mental health. Well, received it from the family doctor but it’s written by mental health. Not really anything new except for perhaps some DSM-IV lingo (that I appear to have a better understanding of than Arda ;)), but it is one more step in realizing that this label is real. You see, in my mind I’d always had this feeling like it maybe isn’t real, how come they think I’m autistic, and now that I see it (well, Arda read it to me) written in the report, it makes it more real than when it was only Arda telling me about a phone conversation with the mental health folk.
7. Speaking of mental health, I forgot to mention that I have an appointment on the 19th. Got that letter already last week, but since I have no clue as for what the appointment will be all about, I keep forgetting about it.
8. Made arrangement for the fourth quarter. Arda called library for the blind to find out if books were available and all but one were. Great thing!
9. E-mailed Elma asking about optional cretits - that aren’t all that optional as you need three of them to get your freshman certificate anyway. I hate them, but found an assignment that will get you three ECTS (credits) if completed successfully and that I think I can do. Bad thing is it’s created by Enschede staff (who thought out much better assignments for optional credit than the Deventer folks did) and since I’m in Deventer that means it may be a problem. Will see.

Stacy of The Preemie Experiment raised an important topic when discussing her fear that her daughter wouldn’t live independently. I see this fear and uncertainty communicated on the PREEMIE-CHILD list all the time. Some people on this list have children with severe disabilities, like quadiplegic cerebral palsy or severe mental retardation, and these parents can be pretty sure that their child will always continue to need some assistance. That doesn’t mean they can’t live full lives, but independence is a very high value in this society and in disability communities in particular. So these parents will grieve, early on, that their child will always need some assistance. Some will decide to devote themselvees to seeking a cure for their child’s disability - I’ve not seen this prevail on the preemie list, but it’s pretty common in the autism community. Others will gradually adjust and learn to accept the “new child”. Many will do both - devote themselves to a cure while, as long as there isn’t any, working to accept their child.

But what Stacy highlights is different. This kind of fear comes with children whose disabilities cannot be seen readily. That doesn’t mean their disabilities are less severe, but it’s more difficult to tell. For example, it is pretty easy to recognize me as blind, but it apparently took twenty years to recognize me as being on the autistic spectrum.

The unfortunate reality of living with invisible disabilities, is that people constantly make assumptions that may compromise your ability to live as fully as possible. After all, disabilities that are invisible can pretty easily be minimized, or when a child is under a lot of stress and hence, experiencing the symptoms of his disability quite severely, people may assume he is more severely disabled than he would be if circumstances were better. Like I said yesterday, when you see me typing on the computer, you might conclude I’m very high-functioning. In fact, you can’t see I have problems recently labeled autistic at all. So you come to think I’m pretty intelligent and decide that, on this basis, I can live independently. Now imagine you’d see me when something is not going as I expected it to go and I am overloaded by the noise of fellow clients talking and the dishwasher washing and the radio blasting. Then chances are I will freak out quite majorly. So you’d see me freak out and decide I’m crazy and belong in a psychiatric hospital. Now imagine that you see me in both of these two states on the same day. Not possible? You bet.

So parents whose child is “on the fence” of independence have different experiences from those whose child’s level of independence is clear already at an early age. They are constantly faced by the dilemma of either expecting the child to be independent - which they may practically be - or acknowledging the child needs support - which they may need because they have mental health problems or developmental disabilities. And depending on circumstances, your child is going to land on one end of the fence or on the other, and you as a parent will have to adjust to their “realism” - to use my old term. When your child has reached adulthood and can live independently, you may be glad cause she reached this milestone, but you may continue to worry whether she’ll do alright. And when your child reaches adulthood and you realize she will still need support, you not only have to adjust emotionally to this state, but you’ll have to fight the system to get her the right support, too. You may grieve that your child did not conform to your expectations and is not going to lead a “full and productive life”. What is that, anyway?

When you have a child, you always have expectations of that child, and these expectations mature as your child does. When I was twelve, for example, my father expected me to study mathematics at university. Now he expects me to study either linguistics or philosophy, cause he knows that’s what I’ll have to decide between. When I was twelve, also, my father probably expected me to live fully independently. He may still expect that of me, but I already know I cannot conform to that expectation. Have I, therefore, crossed that invisible line of “bad outcomes”? I don’t think so, and, I hope, neither does my father. After all, there are different degrees of independence, and different degrees of support. Most people with severe mental retardation need full-time supervision. A person with quad CP may need help with basic self-care skills. Other people may need support only part of the day, or someone to come over to their house for guidance twice a week. Some people can do most of their cleaning alone, but cleaning their windows takes too much energy, so they let a housekeeper do that. The scenarios aren’t black or white - I don’t believe there is really such a “fence”, and if there is, where do I fit? -, but each requires adjustment from parents and (adult) children. Sometimes, this adjustment is gradual cause the parents realized that their child had problems at an early age, and sometimes, it needs to be made relatively suddenly - like in my own case. It’s about how we come to adjust to our own or our children’s “realism”. I can tell from my own experience, that this isn’t easy. I’m still in the process of adjusting to my own situation, and alternate between fear that living in Nijmegen will be too difficult cause I may not be able to get the support I need, and believing the whole freaking thing is stupid and I should be living completely on my own already. I don’t know what my parents think - Arda sent an E-mail explaining my situation to my mother, but she didn’t respond and hasn’t returned any of Arda’s other attempts at reaching her, either. To me, she pretends everything is still as it was. In one way, I think it is, in that the freaking label didn’t change me (and Arda’s E-mail dates from before I was labeled anyway), but I know sort of that my parents don’t accept my outcome. I hope they will, eventually.

Besides the alleged differences between Asperger’s, Autism, and PDD-NOS, the other really arbitrary distinction being made in autism is that between “high-functioning” and “low-functioning” autistics. I know that I am not the first to write about this - in 2007, I can hardly be the first to write about any issue in autism anymore, and I’m usually too busy with other things to be the first in writing about anything anyway -, but I wanted to add my view anyway. Because I think that’s the easiest to do, I’m going to write up a list of assumptions about the LFA/HFA divide, and share my commentary.

1. Low-functioning means having an IQ below 70. Well, this is one of several pretty official distinctions being made. The problem is that it’s often hard to determine IQ in people with autism: some people may seem high-functioning at first, but their IQ drops as they age cause of increased developmental demands - something that is extremely common in preemies (autistic or not). Others’ IQ jumps by sometimes as many as 50 points as they learn to use a communication modality that others understand. Here in the Netherlands, autistics whose IQ can be assessed as being in the mentally retarded range, are considered autistic as well as mentally retarded, so they essentially have two disabilities that may influence each other and each influence the person’s functioning.
2. Low-functioning means non-verbal. This is the other kind of official definition. The only thing it omits to say, is that non-verbal does not necessarily mean unable to communicate. Speech, after all, may not be communication (I sometimes hate it when people assume that everything that comes out of my mouth is intended as it comes across), and communication does not need to mean speech.
3. Autistics will always function at the same level regardless of circumstances. I hate this assumption, and have always hated it, whether you relate it to autism or not - I hated it years before I was labeled autistic or even suspected I was on the spectrum. In my own experience, this prejudice comes in the form of “You’re so intelligent, so …” statements. Some people who make these assumptions, can simply be directed to Stephanie Tolan’s article on asynchronous development, but even those who know about this, tend to have difficulty grasping the concept that I do not always function at the same level. I still have a lot of difficulty grasping this concept myself: that, when I’m overwhelmed, I don’t have skills that I have when I’m in a quiet state, most prominently communication abilities. So, when someone sees me here on the computer typing out a review on the HFA/LFA distinction, they may assume I’m very high-functioning, but you wouldn’t guess so when you’d see me when I’m overwhelmed. In this sense, I’m like the amethyst from Dave Spicer’s description. I will have to elaborate on this some more when I have a better understanding of my own situation, cause a variation to this theme seems to be the distinction between theoretical knowledge and practical understanding, and I’m experiencing this big time now.
4. Low-functioning means severely autistic. Well, number of symptoms and functioning level in either of the two relatively official respects, are quite different. In fact, some people with severe mental retardation lack the cognitive ability to exhibit some autistic features, such as routines. So are they “low-functioning” cause they are retarded, or are they “high-functioning” cause they are not severely autistic? This is a big reason why I’m glad the Dutch see autism and mental retardation as separate disabilities.
5. High-functioning individuals do not exhibit certain behaviors, such as self-injury or aggression. So, when someone does exhibit these behaviors, they must be low-functioning? I’m not proud of this, but this belief makes me pretty low-functioning. Often, however, it’s used the other way round, in that people who meet someone’s stereotype of “high-functioning” (eg. the ability to disagree with Autism Speaks in a way that they can read/listen to), is discredited for certainly not having serious problems. Amanda baggs has written a good article defeating this myth as well as pointing out its capacity to damage autistic people’s lives.

Well, I’m sure there are other assumptions that I’ll have to comment on, but I cannot think of anything to add now. I think it makes no sense to classify someone as “low-functioning” or “high-functioning”. People are autistic and have fewer or more symptoms to a greater or lesser extent, and some of these people have an intellectual disability in addition to being autistic. That doesn’t make them “profoundly autistic”, it just makes them autistic as well as mentally retarded, and both of these disabilities need to be acknowledged in order to help the person live as fully as possible a life while remaining himself.

When the mental health folks decided I’m on the autistic spectrum, they didn’t give me any specific label, such as Asperger’s, Kanner’s Autism or PDD-NOS. While there’s a chance that I will someday get labeled something specifically, and while many people ask about one’s specific diagnosis, I am pretty glad I didn’t receive a specific label.

I wanted to write about the stupidity in distinguishing between different Autistic Spectrum Disorders before, but now I feel inspired by one of Amanda Baggs’ posts, discussing the PDD-NOS label as well as a recent discussion on terminology on the Dutch AutSider autism forum.

The diagnostic criteria for Kanner’s Autism, Asperger’s Syndrome and PDD-NOS do not differ as dramatically as one might think. Asperger’s and Kanner’s Autism, for example, only differ in that Asperger’s people invariably have an IQ above 70 and didn’t have early language delays, while Kanner’s people did. For people with an IQ above 70 but below 85, this may even mean a diagnosis of mild intellectual impairment along with Asperger’s Syndrome, cause in the Netherlands, borderline intellectual functioning is, depending on other variables, often also considered a mild intellectual impairment. This is, by the way, not just theoretical, as I used to know someone diagnosed with Asperger’s who is also considered mildly intellectually impaired.

Yet people assume Asperger’s is intrinsically mild. Lenny Schafer et al. used to use a “diagnosis” of Asperger’s Syndrome to discredit Michelle Dawson (who is, by the way, diagnosed with Kanner’s Autism). For her, and others like her, this distinction is hihgly hurtful, and I would be on their side if I were labeled Asperger’s - particularly, the assumption that people with this label are highly verbal, would hurt me in some situations. Others, however, delight in the distinction, cause it allows them to distance themselves from the Rainman stereotype in Kanner’s Autism. There are once again problems with this: firstly, most Kanner’s autistics are not like Rainman, either, and the distinction doesn’t help to dispel the myth, and secondly, some Asperger’s people do have severe difficulties. What if Asperger’s, which is now still relatively unknown, becomes widely known as “Geek Syndrome”?

Another problem with assumptions based on a specific diagnosis - while the diagnosstic criteria for each of the three ASDs are only slightly different -, is the old severity indication. It is not even diagnostically incorrect to assume that Asperger’s, on average, is less severe than Kanner’s Autism. But how severe is “less severe”? And where do we place PDD-NOS, which is diagnosed quite frequently in the Netherlands and which is often incorrectly assumed to be a very specific diagnosis (probably cause no-one knows what NOS stands for)? There are, generally speaking, two different opinions on this: some people believe that PDD-NOS is less severe than Kanner’s but more severe than Asperger’s, while others place PDD-NOS on the mild end of the autism continuum. Both are possible (certainly with the DSM-IV from 1994), but it makes quite a bit of difference which of these you care to believe: imagine your child were diagnosed with PDD-NOS based on the first definition (eg. she meets criteria for Asperger’s but also has a language delay), but her teachers believe in the second stereotype so assume she’s only very mildly autistic. I bet it would be difficult to get services written into her IEP.

A long while ago, long before anyone had ever voiced a concern about believing I’m on the spectrum, the old student in work placement here at training home, made a comment about what children with PDD-NOS are like. They were supposed, when they lost something tiny, to be looking for it very organizedly. She contrasted these children with those with ADHD, who would impulsively look everywhere, and consequently got to wonder what children who have both ADHD and PDD-NOS would do. Well, a fellow client here has, if I’m correct, a diagnosis of PDD-NOS, but I don’t think he’s ever going to do as PDD-NOS people are presumed to do. I think it’s about time people learn what NOS means!

For once, in light of this discussion, I would like to link to Bernard Rimland. I’m not a big fan of him, but his article on PDD makes quite a bit of sense. This is why I prefer the term Autistic Spectrum Disorder, and would even if I had a specific label: I do not meet the Asperger’s or Kanner’s stereotypes and I’m sick of assumptions about the specifities of something Not Otherwise Specified. We’re all autistic regardless of diagnosis or “functioning level” (another very arbitrary term) and the junk of stereotypes on differences between only arbitrarily distinguished disabilities, makes me feel sick.

I just found out about a court case that would be important on many fronts. The primatologists who brought up the case may be primarily concerned with the biological resemblance between humans and apes. However, if this chimp is granted human rights, it will shift our perspective on humanity on quite a few fronts. Religion will be affected, cause many religions (most prominently, christianity) hold that humans have a special place within the Kingdom of God. But if only it were just this - that humans would be considered “just another animal in the forest”! Peter Singer, who is a well-known philosopher and Princeton professor, already holds this view. However, the picture is much wider: if this chimpanzee is granted human status, it requires us to define “humanity” all over again, which so far is being defined as “belonging to the species homo sapiens”. More precisely, we would have to find non-biological characteristics that make up the essence of humanness. The people who brought up this case, already use several of these: the fact that Hiasl recognizes himself in a mirror, enjoys painting, giggles when tickled, etc. You see where this is going already? Yes, these are all abilities that not all beings that belong to the species homo sapiens have. As a result, we would have to draw the line somewhere, and thereby, we run the risk of excluding certain beings belonging to our species from the realm of humanity. Peter Singer likely has no problem with this, but most people do not support his views on the worth of disabled children - or at least, I’m still naive enough to hope that they don’t. So we would have to draw the line somewhere where all beings belonging to the species homo sapiens, would be included. Possibly that means some beings belonging to other species will not, while others belonging to that species will. Will we get humans to stand up for these beings who, after all, belong to the same species as those who do have human rights? So where does it end? Will we eventually draw a biological line different from the current one - ie. those belonging to our species and such and such other species -, or will we draw a philosophical line? I’m afraid a judge cannot make this decision on her own.