Astrid’s Journal

Went to the block manager because I have concerns about paying service costs, what to do when something in my place falls apart, etc. He said he didn’t know about service costs so I should go to the SSHN main office for this, and didn’t comment on the something falling apart question. Then, he went on doubting my ability to live in this place and that I might need to be in more adaptive housing. Why? Because the kitchen tops height can be adjusted in some places. I’m blind and autistic, not physically disabled (no offence intended to those who are). I realized I was probably annoying the block manager cause this is the second time in a week that I asked him something and I was asking him about things he didn’t know about. However, that is no reason to doubt the suitability of this place, is it? Marion took it positively and said there might be a better place in SSHN housing to live for me. Well, maybe. Maybe not. We’d just decided last Tuesday that there wa sno point in questioning the suitability of my place or my living situation for at least two months - this was cause Marion and Gerda got sick of my constantly saying I don’t want to live in this place. We left the block manager’s office, and I felt confused. Now I still don’t know what to do with the clothes hanger, where a hook fell off, and this is likely the block manager’s business. However, I don’t know. I’m worried about many things, and now that I expressed my worry, I’m told that I shouldn’t be living in this place. I’m not going to tell the block manger about the clothes hanger anytime soon, cause I can deal with it as it’s now and I feel uncomfortable going up to the block manager again.

Went to university today for another meeting for autistic students and their buddies. This time, it was meant to get started the process of the buddy system. I had to fill out a checklist of things I might have problems with, so Andrea (who is my buddy) can see what I need help with. I also gave her my contact info and Gerda’s and Marion’s info, so she can get in touch with either of them. We then made an appointment for next week Wednesday at 4:00 PM. Andrea will come to my place, cause we need to do Blackboard and I can’t access a computer at university cause lack of a screenreader. Man, university is really where blindness and autism get to interact and it’s hard to tell which issue is from which disability. Like, I had trouble at freshman intro cause I didn’t know the way around, but the main situation in which Andrea needed to support me, was when I freaked out. This does prove that one cannot see one’s disabilities separately, and this is a major reason why I’ve always hated the idea of a “primary” disability. In most places, blindness is my “primary” disability, because it’s the one most easily conceptualized, even when autism is the reason I need most support. I’ve seen blindness taken apart, before my autism diagnosis, and this was a problem, but Andrea is now helping me with some things the other buddies don’t need to help someone with, cause they don’t face this problem cause they’re sighted. I’m not either blind cause that is what everyone will see or autistic cause that is why I’m in the buddy system. I’m both and I have many more qualities, each of which may influence my college education for the better or for the worse.

Too often, psychiatrists and other professionals working with autistics believe that having perseverations is a bad thing. In the DSM-IV, this autistic trait is worded as an “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus”. Consequently, many parents and professionals believe they should discourage perseveration, because, as they think, it gets in the way of normal functioning. Really, perseveratiosn do have their problems, but they also have their good side that needs to be recognized.

Where perseverations become a problem, is when they get in the way of things like work or housekeeping. Perseverations certainly have their time and place, and according to the woman from the autism agency who spoke at university last week Sunday, this is at home during the week-end. I disagree: many successful autistics have made a career out of their perseveration, and perseverations can be very useful when they’re related to one’s college major.

I recently discovered another function of perseverations, which I discovered through the effect it had when I had no perseveration: I feel empty and lonely. You see, perseverations do provide an opportunity to occupy one’s mind. This is the reason why, recently not having had a particular perseveration, I deliberately searched for one. Also, having a perseveration can provide some degree of structure into one’s life - provided it doesn’t get in the way of necessary activities. For me, I have to find a perseveration cause I was feeling very empty without one, and I don’t think there’s a problem with this. So, it’s fine to redirect an autistic when perseverating is really getting in the way of something that needs to be done, but there is no point in discouraging perseverations altogether, and they are by far not non-functional.

This past week was quite difficult despite the fact that everyone’s been trying their best to help me get through it. On Monday, I had my first day of freshman introduction, which at first went quite well but then it turned out I’d bought the wrong book for one course, so I freaked out at university. Same on Thursday after another book turned out to be the wrong edition. Now the freshman intro organizer says I ruined the nice atmosphere at intro. She doesn’t mean it as a personal attack, and I don’t take it as such, but since I know how stupid I behave, it does make me feel pessimistic. If I freak out my first two days at university, how will I do the rest of the year?

I don’t remember much about Tuesday. One of my new support workers, Adrie - the same person who came to Malden on Sunday -, came to my home to help with grocery shopping and picking up my meds at the pharmacy. Then the occupational therapist came and we tried the route to the shopping centre. Arda suspects that the reason I do so poorly on O&M these days is cause the occupational therapist focuses a little too much on instruction and lets me figure out the route somewhat too little on my own. I can sort of see where she’s coming from, but I also know that on several occasions, I wasn’t able to concentrate cause of stress. This was also what happened today, cause I’d felt confused after meeting up with Arda. She came for fun, but it really wasn’t much fun cause I freaked out before she came. I felt so nervous about the talk she’d had with Gerda and Marion, my new main support worker. As it turned out, it wasn’t that bad after all, but I felt really freaked out about it this morning.

Evenings are still difficult. Freaked out extremely yesterday, where I self-injured by banging my head - something I rarely do anymore. I got really worried about this, but it seems most other people see it as a bigger problem that I went outside crying after this happened. Well, that is a problem, too. Gerda says I should’ve called her, which I eventually did but not until someone had reminded me to call someone. I do need to find a way of reminding myself of healthy coping mechanisms like calling someone before I self-injure, run off or use other unhealthy coping strategies. Arda suggested I write a reminder and put it in my computer. I’m not sure if this works, but I’ll try.

Tomorrow and on Sunday, I will be having dinner and evenign coffee in the living facility in Malden, so that’s a good thing. Gerda is looking if she can get funding for me to sleep over at that place more often. She’s also looking into getting me in touch with other people. I worked out a list of things to do with Adrie this afternoon, which she will be discussing with Marion. I hope things will be working out a little.

Yesterday, I went to university for an informational meeting about going to college with an autism spectrum disorder. At first, a person from an autism agency talked about what problems students with autism might face, from a kind of medicalized, theoretical point of view. Even so, it was an interesting talk. After this, a woman from an autistic self-advocacy organization talked about this organization. It was interesting, but there was a little too much emphasis on how autistics should arrange their own stuff. In my opinion, taking responsibility for your own life is not the same as doing most things for yourself. Also, she talked about how the organization is for high-functioning autistic adults. Why just high-functioning people, who are, supposedly, capable of standing up for ourselves? Whether you should have the ability to self-advocate, doesn’t depend on your intelligence.

Then, two autistics and a parent of autistic adults talked about what college was like for them or their children. I don’t remember everything the people said, and I didn’t like the emphasis the parent placed on the importantce of parents. Not because I don’t think parents can help a college student succeed, but because my own parents don’t give a flying flip about disability issues other than things striclty blindness-related.

After this, we got some information abotu services for autistic students at my university. We have a sort of buddy system starting this year, where each autistic student who wants so can get another student (mostly from psychology and special education) to be their buddy. I met one of them yesterday, who helped me through today, as I navigated the first day of freshman introduction.

Today, one of the support workers from my service agency came here to help me with scheduling and making arrangements for going to university tomorrow and on Monday. She also wrote down my concerns about living on my own and will discuss them with Gerda on Monday. I’m pretty scared I misworded myself, cause I said living in my current place is too difficult. It is, as it went over the last several weeks, and I seriously doubt this will get better after class starts, but I don’t want to sound all negative and be told that my subjective experience is not objective reality - one of Arda’s statements when I used to go on and on about how stuff is too difficult.

Later, I lied down on my bed to rest, cause I got very tired from the discussion with this support worker. I at first kept worrying, then fell asleep, then woke up and freaked out in fear and worry. I went to the front room, had dinner and then tried to talk to the staff who’d been here yesrerday, too. She tried to call Gerda, but got the answering machine. Another staff took me on a brief walk and then sat in the garden with me, chatting in order to distract me. It helped mostly, though I still feel a little anxious about having said the wrong things and still don’t know how things will work out. Gerda called back a few minutes ago, and said she can’t do much now, but the other support worker will take me to university tomorrow and then things may become more clear (we’ll ask about some things for university), and on Monday they’ll try to work out how to make things more quiet for me. I hope we’ll get somewhere then, cause it’s still pretty unclear how things will go from next week on.

So, I’m in a living facility in Malden near Nijmegen and will stay here over the week-end. The reason is that last week went very badly and I seriously freaked out, most seriously yesterday. This is likely partly cause I decreased my risperdal dosage cause of those panic attack like symptoms, and partly cause of all the stress of these past few weeks. I went back to my normal risperdal dosage again today after consulting with my family doctor: she now is the fourth doctor doubting the symptoms are from my meds, but even if they are, they’re supposed to go away. This stay here over the week-end should ease my difficult situation, cause week-ends and evenings are the hardest. The proposal was made after my support worker discussed me with a colleague, who will be my support worker starting probably next week. This support worker then called her supervisor, who came up with the idea of sleeping over at this facility.

I arrived here around 5:30 PM. Gerda, the supervisor, was here and so was one of the staff who work here. This facility is a place for people with physical disabilities, so everything is wheelchair accessible - and thereby also short stature accessible. At 6:15 or so, I went to have dinner. The soup and dessert were nice, but the meal was the same quality microwave food I’m used to by now cause meal service provides it, too - in other words, not very good. Now it’s about 7:20 PM and I’m in my room. I’ve not yet found an electrical outlet, which is a bad thing since where would I plug in my computer if not in one?

In this week’s Newsweek, there’s a report about autistics showing higher IQs when given a non-interactive test than on the standard Wechsler scale. This means that autistics may be labeled retarded because they don’t show their intelligence on a Wechsler IQ test, when actually the problem is their lack of social interaction. Consequently, unfortunately, people think a child is not intelligent and will assume their good reading or mathematical capacity is just a side effect of their autism, a preoccupation, when, in fact, this is one of their strengths. Unfortunately, most professionals and parents are unlikely to realize this anytime soon. After all, if a child doesn’t show their intelligence in a way that is useful to others, how will people around them realize it’s there?

I’m used to visual word verifications by now. Usually, I avoid websites that have them on their member registration or content submission pages. I stopped attempting to create Yahoo! groups for this reason - and mine are never particularly active anyway -, and join them via E-mail, cause I still haven’t figured out how their help page for visually impaired people works.

What does still annoy me, is when it’s a disability website that has a visual CAPTCHA (word verification) on its registration or submission page. The Disability Blog Carnival is one such page, but I’m not sure if the carnival organizer chose it that way. The good thing about the blog carnival is that you can also submit entries via comments on the organizer’s blog or at the blog of whoever is hosting the carnival you’re submitting an entry for. Some bloggers also require word verification if you want to post a comment, but at least Blogger has an option to hear the security code - now only the deafblind are left out.

Another option is contacting the administrator or host or whomever via E-mail or a contact form. It only gets problematic when even this form has a visual CAPTCHA. This is what’s the case with WrongPlanet.net, a prominent autistic community website I’ve been trying to join for several months now. Probably it’s not out of unwillingness that there are visual word verifications on every page you might use to get access to the community. Probably Alex, the website owneer, just doesn’t realize that there are people out there who happen to be autistic and blind, and that at least one of them has an Internet connection, is active in the autistic community and is trying to join his website. Bad thing I can’t tell him since all of his contact pages require visual word verification - to prove you aren’t a robot, as his administrator contact page says.

I think it’s an issue of knowing your own group, but not others. The Dutch Autism Association has a lovely “low-stimulation” website, but its accessibility to blind users could be far better.Another Dutch autism web community also is not too accessible to blind users as well as users with poor hand function, cuase of mouse-over menus - though it did not have a word verification at their forums registration page. I assume some websites created for blind people are probably very inaccessible to users with other disabilities as well. When looking at Dutch accessibility guidelines, I even discovered tha tmy own website did not meet all criteria for accessibility to users of speech synthesizers (I use a braille display). So, really, I can understand it if web developers don’t take into account eveyr little detail in making their websites accessible. However, that doesn’t mean I won’t notice it - and especially, of course, when I’m myself affected by the particular inaccessibility.

So, if Alex, or anyone who does have the ability to reach him, ever reads this: hint, put up an audible word verification on your website or use other methods to filter out spammers from joining your community, such as requiring an existing E-mail address for registration (which is probably already the case), or at least offer someplace where people who want to join your community but cannot handle visual CAPTCHA can reach you. And for everyone, here are guidelines on making your web content accessible to users with disabilities. And feel free to contact me with any inaccessibilities in my blog or on my website.

An autistic child was placed in a timeout room for 3 1/2 hours and it’s wondered whether this is appropriate. Well, no! As several experts in the article say, while timeout can be effective, there is no point in placing a child in seclusion for more than half an hour. Besides, the child repeatedly tried to prove that she was ready to focus on her task again. After trying so many times and being refused to get out, isn’t it understandable that her behavior gets worse? But instead of realizing this, the school officials saw it as proof that Isabel needed more timeout time. There really should be required limits on timeout.

Another controversy was the use of “hand-over-hand”, a technique used to physically prompt children. While I do think there is some effectiveness in this method, the way it was used here, is once again completely pointless. Obviously, the school is rationalizing this with the same old “this is what your behavior calls for” rhetoric that I despise in all of its forms. Really, aggression is aggression and when a child witnesses it, it’s completely logical that this is what she’ll learn. Unfortunately, because she’s disabled and the staff are staff and therefore always right, it’s assumed that the only reason why Isabel becomes aggressive is cause of her “disintegrating” behavior. Well, I think not.