Autism and Aggression: An Autistic Adult’s Perspective

Posted on by Astrid

April was Autism Awareness Month. In previous years, I have dedicated my #AtoZChallenge to autism, but this year, I chose a different topic. For a while, I had it in mind to focus on developmental disabilities in general, but, as you can see, I chose another topic entirely. However, the topic of autism is still on my mind. In the coming weeks, I want to offer more of an insider’s perspective on autism and its characteristics. After all, I am autistic and I feel that the blog coverage on autism is heavily divided between parents of autistic children sharing their stories and adult autistics sharing advocacy. Now there’s nothing wrong with advocacy – I feel passionate about it too -, but there is also nothing wrong with personal experience stories. What is wrong is when these are mostly one-sidedly coming from neurotypical (non-autistic) parents of autistic children. Hence, my insider’s perspective.

For my first post, I am choosing a rather controversial topic: aggression. When parents talk about their child with autism, one of the first things they will usually mention is the child’s aggressive behavior. And in fact, this was the first thing my parents would say when asked to describe my problem behaviors too. It was also what got me to be referred to the mental health agency for an evaluation at age 20, which ultimately led to my autism diagnosis.

I don’t know about statistics of aggression in general, but it is highly stereotypical to equate autism with violent behavior. Autistics are not more likely to be deliberately violent than neurotypicals and they are, in fact, more likely to fall victim to violent crimes.

That doesn’t mean aggression doesn’t occur and, when it does, that it isn’t related to the autistic person’s autism. To say that it’s a “comorbidity” is, in my opinion, doing the autistic a disservice. It is, however, an issue that arises in the interaction between the autistic person and a highly autism-unfriendly world. After all, at least I have often gotten aggressive when my needs for autism-supportive care are not met.

For instance, one day in the psych hospital, a nurse, whom I will call Sara, had said one evening that she’d get back to me the following day after morning report to talk about getting me unsupervised off-ward privileges. The next day, I went up to Sara, but wasn’t able to communicate clearly what I wanted. “I’m not your assigned nurse today,” Sara said. “Go to Daisy if you want something.” Now the nurse I’ll call Daisy was a temp worker, so clueless about my needs or what I’d talked to Sara about the previous day. I got very irritable, because Sara had promised me she’d get back to me and now she was referring me to Daisy. I screamed, walked around the ward restlessly and constantly nagged the staff in an irritable voice. By handover, a third nurse, whom I’ll call Robert, came on and said that he’d put me in seclusion if I didn’t calm down right away. “Go on then, stupid,” I shouted. So he did.

This was not my worst incident of aggression ever. As a teen, my mother reports, I would hit her. I currently still occasionally slap or push staff. Usually, this again results from staff not following through on something or not following my daily routine.

I feel strongly that, though not all incidents of aggression can be prevented by parents or carers providing autism-sensitive support, a lot of them can. If an autistic is aggressive anyway, there are much better ways of handling it than solitary confinement.

loopyloulaura

Also linking up with #PoCoLo.

Learning to Swim

Posted on by Astrid

Today’s topic for Throwback Thursday is “learning to swim”. There are no specific questions, but we are allowed to interpret the topic as we see fit. Here goes.

I got my first swimming lessons at the special school for the visually impaired I attended from first up to third grade. I, however, was very scared of the water and particularly of the deeper end. I vividly remember my teacher taking me to the deep end and my anxiously asking her if she could stand there. She was quite tall, but even so, she couldn’t. That scared me intensely.

According to my parents, my teachers were just overprotective, so my parents put me in swimming lessons at the pool close by their home. I didn’t need to start at the really shallow end, as I had had some swimming experience already, but could start at the 90cm deep second pool. Within a week, I was moved to the 110cm deep third pool, even though I think I protested.

It took me several more years before I earned my first swimming diploma. This first diploma at the time required students to be able to do breaststroke and backstroke, to swim one pool length with loose-fitting clothing, to tread water, etc., but it did not require students to swim underwater.

By the time I got my diploma, I had transferred to another school for the blind, where I had once again been put into the relatively shallow pool. I proudly showed my teachers my swimming diploma that I’d earned at home and was reluctantly transferred to the deep end.

From earning my first swimming diploma to my second, it took me only about eight months. The second diploma required students to swim 7m underwater. There was no way I could see whether I’d passed the 7m mark, so I had to guess. According to my parents, I swam about 11m.

After that, I had swimming lessons for the next three years that I was at various schools for the blind, but I never earned any more diplomas or certificates. The reason was, once again, the fact that my fear started to act up. After all, I wouldn’t swim under a mat. My parents, however, were okay with it this time. After all, my sister never moved beyond her second swimming diploma either.

I now can swim in a pool or lake. When my parents took me and my sister on vacation to Vlieland, I would also sometimes swim in the North Sea. I doubt I’d be able to save myself should I get underwater unintendedly though.

Childhood Creative Endeavors #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter C post in the #AtoZChallenge. Today, I initially wanted to write about cardmaking, but I don’t feel like that now. Instead, I’m going to talk about my creative endeavors as a child.

As a young child, I had a bit of useable vision that allowed me to use colors sort of appropriately (that is, as appropriately as a sighted child my age could). I loved learning about the names of unusual colors. I remember, in particular, learning that the sixth color of the rainbow is indigo, which I was fascinated by.

I could do some basic drawing too. In Kindergarten, I went to mainstream school with hardly any accommodations. I remember having to color inside the lines of a piece of paper, giving each little shape within the drawing a different color and not leaving any white. When, several years later, I looked at it, I saw considerable white. I have no idea how I compared to the other kids though.

By the age of eight, I’d lost the ability to tell most shades of green and blue apart, but I continued to love drawing until I was about age twelve. Then, I realized I’d lost so much vision that it’d make no sense. Even so, before then, my drawings up till that age remained comparable to a Kindergartner’s in quality.

When I went to special education, I was taught other creative activities. I remember making at least a dozen origami frogs in second grade. However, my teacher did at one point write on my report card that she wished she were two teachers so that she could teach together. In other words, I required so much attention that she’d really need to split herself in half to be able to teach the class too.

My parents bought a pottery kiln when I was about eleven, so I also tried my hand at ceramics. I wasn’t too good at it, leaving fingerprints on my work all the time, but at least I enjoyed the process.

Writing also was a lifelong passion of mine. I can’t, in fact, remember a time when I didn’t enjoy writing. At first, I’d make up stories to go along with my drawings. As a tween and teen, I wrote stories that were somewhat or very much related to my real life. My greatest achievement is a work in progress, a young adult novel by the working title of “The Black Queen” about a teen whose mother has multiple sclerosis. This story, though it had autobiographical elements, was inspired by a conversation I overheard about a classmate.

Did you love creative activities as a child?

Unconsciously Incompetent #SoCS

Posted on by Astrid

When I was in college studying applied psychology (it was really an orientation year to Bachelor’s of social work or related fields), my tutor had an interesting theory about how we learn by first being unconsciously incompetent. Then we move on to being consciously incompetent, by which she meant we are aware of our lack of knowledge and skill. Then, after years of college, we move on to being consciously competent. Once being experienced in the workforce, we then become unconsciously competent, which means we no longer need to be aware of our competence, since it’s become muscle memory.

I reached the stage of conscious incompetence when my tutor told me flat out that she was passing me for communication skills only if I promised never to enter the field of social work, psychology or any related field of study or work again. Thankfully, I was aware that my communication skills exam had really gone badly just before she told me, so I didn’t just need to be dragged into conscious incompetence.

I think I might need a similar experience with macrame. I started practising on Thursday and, though I managed the square knot, spiral knot and lark’s head knot quite easily eventually, I am pretty sure I’m still unconsciously incompetent. In other words, my work is horribly ugly but I think it will do.

The only thing is, because I sort of know I might never reach the stage of even conscious competence, I am too scared to show my work online for judgment. After all, as much as I am self-conscious about it, I also would really like this to work out!

Similarly, though I knew before that horribly messed-up communication skills exam at least on some subconscious level that I’m not suited to become a social worker or psychologist, I wanted to be one. That’s probably why I went into linguistics, which, though it isn’t necessarily within the helping profession, is still a communicative field of study. I only went into it to have a student psychologist tell a newspaper that “a blind autistic who wants to study something communicative” is going to have a pretty hard time of it, when they were promoting their autism buddy program. That pretty much sent me into conscious incompetence as soon as I read it, which thankfully was six weeks into the academic year. I guess that’s what happened the time the first person to comment on my question about macrame told me it would be really hard too. Only that’s before I’d started. I’m not sure that’s conscious incompetence though. It looks rather like low self-esteem.

This post was written for Stream of Consciousness Saturday, with the prompt of a word containing “Comp”.

Illness or Injury

Posted on by Astrid

Today’s topic for Throwback Thursday is, as Lauren describes it, “Ouchies, owies and boo boos”. In other words, we’re asked to share our experiences of illness or injury when we were growing up. Now is an interesting time for this, as I’ve just recovered from the worst symptoms of COVID. Even though I had a mild case of it, I am tempted to take back my assertion that it’s “just a bad cold” even in my case. I’m still exhausted by 9PM, or at least was yesterday, and today just a walk around the day center had me horribly out of breath. Forget the elliptical, which I told my husband yesterday that I’d try to go onto today. Anyway, that’s as far as my current state of illness is concerned. Now, let me share about my childhood illnesses and injuries.

As a young child, until I had my tonsils and adenoids out as a Kindergartner, I was prone to colds and the flu. I can’t remember whether my parents let me stay home for most of these illnesses. Later though, we clearly had the rule that, if I ran a fever, I was sick and had to stay home. Otherwise, I wasn’t sick and had to go to school. Not that I remember ever “playing sick”.

I don’t think I was ever given medicine, such as painkillers, unless it was obvious from outward signs that I was sick either. I mean, I do remember having to take paracetamol as a child, but not for a headache or toothache. We did have a licorice-flavored cough syrup, but I only took it when my parents directed me to. In fact, it wasn’t until I was in my mid-twenties that I first learned to ask for medication myself. For the brief time that I lived independently and could take over-the-counter medications when I felt like it, I didn’t either unless a support worker directed me to. In fact, I remember buying a talking thermometer back then because I was feeling weak often and, relying on my parents’ rule that you had to have a fever to be sick, I wanted to know my body temp.

Similarly, I wasn’t taken to the doctor for minor illnesses or injuries usually, unless my parents decided they were enough of an outward abnormality to be taken seriously. I remember my father took me to the doctor one day when I was about fourteen because I had bad eczema on my neck. I didn’t see the need, but apparently it was so ugly that my father wanted me to get treated.

When I was about seventeen, I made my first appointment to see my GP by myself. I had a horrible earache, which turned out nothing to be the doctor could do much about, by the way. However, my parents said I also had to ask about getting treatment for my toenail fungus, which I didn’t consider particularly bothersome at the time. To be fair, I do now see they were right to be worried about my toenail fungus, even though it took me fifteen more years to finally get it treated properly. However, overall, I’d had it with their message that my outward appearance alone dictates when I should get help (medical or otherwise) and this was probably my first small act of rebellion. I never quite learned to gauge when I can trust my body’s signals (or my mind’s interpretation of them) and when I can’t. I’m finding that, for this reason, even up till this day, I rely mostly on other people’s judgment.

Mentors and Role Models

Posted on by Astrid

Today’s topic for Throwback Thursday is mentors and role models. Of course, last week, I already shared about my high school tutor, who was a mentor when I was a teen. Today, I’m going to share about other role models.

One of my first role models was my paternal grandmother. She was a fiercely independent, self-determined woman. In 1973, a year after women were legally equal to men here in the Netherlands, she divorced my grandpa. She went to college to become a social worker, eventually becoming the head of social work at the psychiatric institution in her area. In the mid-1990s, in her early 70s, she founded a senior citizens’ living complex, where she lived for nearly 20 years until she needed to go into a care home. She died in 2018 at the age of 94.

One clear memory I have of my grandmother that has stuck with me throughout life and which perhaps unintentionally inspired me, is her comment about her work as a social worker with troubled young people. She told me that, when some young people don’t want to go home to their parents, she had to sometimes honor the teens’ wishes rather than the parents’. Even though I was 19 when first going against my parents’ wishes, and their wish wasn’t for me to live with them, the point was that my opinion mattered even if I was “crazy”.

Later, when I was a teen and young adult, I sought out role models who shared some of my experiences. One of my first role models in this category was someone I met through an E-mail list for my eye condition. She was in her early thirties when we first met online and I was seventeen. Besides blindness, we had some other experiences in common. We eagerly read each other’s online diaries back in the day. She is still a Facebook friend of mine, but, because she has moved on to become more or less successful at life and work and I haven’t, we don’t share the same life experiences anymore.

Some people I considered inspiring, I never even talked to, such as Cal Montgomery, a disability activist whose article, “Critic of the Dawn”, I first read in like 2006.

Currently, indeed, what I look for in an inspiring person or role model is shared experience. That being the case, I consider many of the people I’m on E-mail lists or in Facebook groups with to be inspiring. Then though, our interactions are more based on equality, where any of us can be the inspiration for the others.

I don’t think that I quite have what it takes to be a mentor myself. Though I can provide people with inspiration and information, I don’t really have my life together enough to be a role model. This saddens me, thinking about the fact that I’m older now than the woman I met at seventeen was when we first met.

What do you look for in a role model?

Accepting My Ordinary Identity in Christ #Write28Days

Posted on by Astrid

Welcome to day two in #Write28Days. Today’s optional prompt is “Ordinary”. Immediately, I thought: what a dull prompt! I don’t want to be ordinary. I don’t even want to write about it!

Like I said yesterday, I am an Enneagram type Four. One of the descriptors for type Fours is “The Individualist”. Another, less kind one, is “Specials”. As these denominators say, we don’t want to be boring, like everyone else, ordinary.

When I had just been admitted to the psychiatric hospital in 2007, my parents came to talk to my doctor. They said that, in order to avoid accepting the fact that I am blind, I sought out to be different in every other way possible. For example, as a teen I thought I was a lesbian. I had just gotten acquainted with my now husband at the time that my parents used this against me, but we were by no means dating yet. Besides, in my mental state at the time, my sexual orientation was about the last thing on my mind. That being said, at the core, my parents were probably right: I saw myself as a complicated, unique, special person. Extraordinary.

Now we’re nearly fifteen years on. In a way, I still see myself as different from “ordinary” people in many ways. For instance, I am multiply-disabled, including blind and autistic. I am a trauma survivor and identify as a plural system (dissociative identity disorder). I, however, also now see that I am loved by God and by others as I am. And that is what matters most: my ordinary identity in Christ.

I still sometimes focus on the aspects of my identity that make me different from most other human beings. That’s okay though, as long as my “otherness” doesn’t become all-encompassing. Ultimately, my main identity is as a person loved by God.

#IWSG: A Tribute to My High School Tutor

Posted on by Astrid
IWSG
Insecure Writer’s Support Group Badge

Today is the first Wednesday of the month and my regular readers know what this means: it’s time for the Insecure Writer’s Support Group (#IWSG) to meet. I just got an authorization for the latest JAWS, my screen reader, which turns out to support the WordPress block editor, so I’m trying that out now as I type.

I did quite well in the writing department over the month of January, having published 29 blog posts, including a poem and a piece of flash fiction. For February, I signed up for #Write28Days, so my main goal is to write a post for that challenge each day.

Now on to this month’s optional question. For the month of February, we are asked to share about someone who supported or influenced us in our writing who isn’t around anymore. Immediately, my thoughts went to my high school tutor. Even as I type this, I am still not sure whether I want to name him by his full name, as in general my relationship with him was tainted by the many conflicting interests he had to juggle as my high school tutor and the assistant principal, with me being the only student with a major disability in his mainstream school. That being said, he was a major supporter of my writing.

I must explain here that he wasn’t originally my tutor from the start, but my original tutor went on long-term sick leave, never to return, shortly before winter break my second year in this school in the middle of eighth grade. The teacher I talk about here became my tutor shortly after the winter break. In one of our first one-on-one tutor-student talks, he asked me about my hobbies I think and we somehow got talking about writing. He asked if he could read one of my stories and I eagerly agreed. I think I even wrote an original story specifically to show him.

This story was rather autobiographically-based, but not so clearly so that it could be transferred one-to-one into my school situation. My tutor did immediately notice the autobiographical elements though.

I was quite a troubled teen and struggled greatly, being multiply-disabled in a mainstream school. Sometimes, I struggled to speak. Over the years, my tutor encouraged me to write things down when I couldn’t speak, be it in fictionalized form or not. Once I got a public online diary, which later morphed into a blog, I permitted my tutor to read it, reasoning that, since it’s public, he shouldn’t even have to ask my permission.

He remained my tutor until I graduated high school in 2005. He also was the one arranging for me to go to the blindness training center after graduation, even though he full on knew this meant I couldn’t go to university right away then.

Sadly, about a year after my graduation, my now former tutor was diagnosed with cancer. He did live for another about ten years and did make it to the reunion in celebration of my high school existing 100 years in 2013. I, though, did not. My tutor died in 2016.

I am not sure whether my tutor felt I was a good writer per se. He might have thought, like my parents did during my teens, that I was overly self-centered in my writing. If he did though, he didn’t say so. In any case, he was one of the people who, whether he wanted to or not, influenced me to be a regular blogger.

Pocket Money Tales

Posted on by Astrid

Today’s topic for Throwback Thursday is chores and allowances. Let me share my experiences.

Regarding chores, I could easily be short and sweet: no, I did not have any. Neither did my sister. We were raised with the expectation that we’d leave the house as soon as we graduated high school, but we were hardly taught any of the skills of independence, much less expected to contribute to the household on a regular basis. My sister was occasionally expected to do the dishes once she was about twelve or so. Same probably for me, but my parents quickly decided I took too long, didn’t do it right or made too much of a fuss over it, probably all three.

My sister, who’s non-disabled, somehow managed the skills of independence by observing my parents anyway. I, being blind and multiply-disabled, did not. When I left for the independence training home right after high school, I had virtually no skills necessary for living independently. I am forever grateful I persevered and decided to take this step rather than moving out on my own right away.

Regarding allowances, or pocket money as it was known in our family, the situation was a little more interesting. I got my first pocket money at age seven. I got one guilder a week. A few months later, I’d turn eight and my father promised me I’d get two guilders a week provided I’d stop leaving the lights on in my bedroom when I wasn’t there. The reason being that, if I no longer left the lights on, he would save on electricity and could give me more pocket money. I doubt it’d seriously make a difference of one guilder a week, but I’m not entirely sure he hadn’t possibly calculated it somehow. That’s how he is, after all.

That brings me to my next pocket money story, some eight years later.
I originally couldn’t remember whether we already used euros at the time. Not that it matters for the morale of the story, but I saw the official documentation relevant to this story and now know we already had euros. I must’ve been sixteen and was rather angry because my sister got a higher allowance than I’d gotten at her age, so I now wanted more too. At first, my parents got all defensive, calling me selfish because I was playing the “not fair” card. Then, after both of us at calmed down, my father asked me to write a budget of things I’d need pocket money for. If it was within reason, I’d get what I’d asked for.

I had asked for €10 a week. I created a budget (that’s the “official documentation” I referred to above!) fitting all my personal expenses, including candy, jewelry, memberships to the children’s choir and the political party I was a member of at the time, into this budget. Ultimately, my budget showed I needed €555,60 a year. When my father saw it, he commented that I’d been far too careful to try to fit my budget into what I’d demanded. I particularly remember him saying he couldn’t believe I’d just spend €2,50 a week on candy, for example. And I must admit he was right. My father told me that €100 a month was a more reasonable allowance and so it happened that I got more than twice the amount of pocket money I’d originally fought for!

Were you taught about budgeting as a child?

My Shed

Posted on by Astrid

One of Mama Kat’s Writer’s Workshop prompts this week is to write about your very first apartment. I am going to cheat a little and write about the first apartment I rented rather than the very first apartment I lived in. The first apartment I rented was my student housing apartment, which I called “my shed”. This sounds affectionate in English. In Dutch, not so. “My cage”, though not as correct a translation, more correctly captures the feeling I had about this apartment.

When I got on the housing list in Nijmegen for the academic year starting 2007, the student counselor made sure I got a letter getting me to a priority place on the list because of my disabilities. This meant I was allowed to provide a preference for which student housing complex I wanted to live in. I had to list my top three. Based on the little information the housing association provided and what my support staff at the independence training home I lived in before moving to Nijmegen knew, my number one choice became the complex “my shed” was part of. My reasons were that its apartments reserved for disabled students were on the ground floor and the neighborhood was supposedly quiet.

Indeed, my apartment was on the ground floor, right beside the main entrance to the building. I didn’t have to enter the complex to get to my apartment.

It was a one-bedroom apartment. When you entered through the door, you were in the long, narrow living room and kitchen. Then you went through to something like a landing, with the bathroom on your right hand. Then, you’d enter another long, narrow room, which was the bedroom. The apartment altogether was 35m².

My apartment had just a few, very dim lights in the living room and one equally dim light in the bedroom. I guess my parents thought that I didn’t need much light since I was blind anyway. I had my desk, the one I currently still use to sit on whilst typing this post, in the living room. Other than that, I just had two kitchen chairs and a folding table to eat at. I did have one recliner that I’d gotten at a thrift store and a few rather tacky pillows. I had never thought of decorating my place at all. In fact, this past holiday season is the first time I’ve ever decorated my room and that’s quite a milestone.

Like I said, my apartment was very narrow and long. Its windows were on the short end of the apartment. Due to this and the lack of lighting, the apartment looked rather dark and gloomy. If I wasn’t depressed already, I’d become depressed from the lack of light in my shed.

The place quickly got rather filthy from my poor cleaning habits. I did try, but due to the combination of my disabilities, I just couldn’t keep the place properly cleaned. Looking back, I am so grateful my now husband didn’t go on a run as fast and as far as he could when I invited him into the shed on our second get-together.

I only actually lived in the shed for three months before landing in the psychiatric hospital. It is by far the worst place, in terms of interior, I’ve ever lived in.

Mama’s Losin’ It