Autism and Aggression: An Autistic Adult’s Perspective

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.

Five Things I Take for Granted #5Things

Yesterday, DrTanya’s topic for the #5Things challenge was things you (sometimes) take for granted. I realize I take a lot of things for granted that I really shouldn’t. Here are just five.

1. My intelligence. I don’t take it as much for granted as I used to when in school, but i still feel that I pretty much consider my high IQ a given. Not only that, but I usually find that I’m surprised when others aren’t as intellectually capable as I am. Of course, I don’t mean my fellow clients at the care facility. In fact, they have taught me quite a lesson in humility.

2. My access to medical care. I don’t take my access to long-term care for granted, because that was a fight, but my basic health insurance coverage, I certainly do take for granted. Of course, it is mandatory here in the Netherlands and even those who don’t pay their premiums can’t be refused insurance for at least six months while the insurance company tries to sort things out with them.

3. A roof over my head. I’ve never been without shelter, although in a sense I’ve often felt “homeless”. In the psychiatric hospital, I knew several ppatients who had no home other than the hospital and who were regularly suspended from the ward into the homeless shelter. In this sense, it is really surprising that I never even considered this would happen to me, since I too for several years had no home other than the hospital. I think this signals how secure I felt, in a sense, at the ward I resided at back then.

4. Electricity. I never had to pay my own electricity bills, at least not directly. I mean, even when my husband and I lived together, my husband paid the electricity bills. As a result, I’m hardly aware of how much energy really costs. My husband did tell me how well we did compared to other households and we were always relatively frugal. Even so, it all seems a bit abstract to me.

5. Access to a computer. I don’t take Internet access for granted, but access to a computer, I certainly do. Even in my early days at the locked psychiatric ward, I had my laptop with me and there was no way anyone could take it from me, regardless of what the rules said about only certain electronics being permitted. Thankfully, my nursing staff did understand.

What things do you take for granted?

A Letter to Myself Five Years Ago

Today, I stumbled upon a journaling prompt that asked me to write a letter to myself five years ago. I’m pretty sure I’ve done something similar to this at least a couple of times before. In fact, when I searched this blog for letters, I saw that I’d written A letter explaining my life at the time in early 2020, a letter to my younger self in general in October of 2018 and even a letter from my (then) future self in 2019.

Those who know the timeline of my life, of course, will not be surprised that I am going to pick this prompt anyway, as the “five years ago” part of the prompt is particularly significant. After all, it was weeks before I’d be kicked out of the mental hospital. I am not going to bore you with a timeline of the past five years in this letter. Instead, I’m trying to provide some new insights.

Raalte, March 27, 2022

Dear Astrid,

It is tempting to start this letter with a cliché, such as, “How are you?” However, I know how you are. You are struggling greatly with self-doubt and uncertainty. Fear of abandonment and attachment loss. You’d rather avoid taking the next step in your life, leaving the familiar behind to step into unfamiliar territory. Even though you’d rather not admit it, your psychologist is right that you’re scared of needing to become independent.

I want to let you know I understand. Independence is scary. The unfamiliar, leaving the psychiatric institution to go live with your husband, is even scarier. I understand you’d rather stay with unsupportive people you know, ie. in the psych hospital, than live with a supportive person, ie. your husband, under circumstances you don’t know.

And, to be honest, if I had a choice back when I was you, I’d not have chosen to live with my husband. The thing is, you don’t have a choice. Not yet. But you will, at some point.

Please, for my sake, hold on for a bit. Do what your psychologist tells you, but also stand up for your right to proper day activities and community support. It will be hard, living in the community with your husband. But things will get easier.

I am writing from a care facility. In 2019, I was approved for long-term care based on blindness. I also have extra one-on-one support. Please don’t tell your psychologist all of this, as she’s going to time travel right ahead to me and make sure my funding gets taken away. This is just between you and me, so that you know things will improve. I know they will get worse first, but please do hold on.

Looking to you, I do see that you struggle to let go of the familiar, even when it isn’t good for you. I sometimes think I face the opposite issue, chasing perfection rather than being content with what I have now. It’s a true balancing act.

I also want to let you know that, as much as you’d like to make your own choices, being allowed to make those choices also can be a burden. The fact that, now, I am free to stay in the care facility for as long as I want or leave when I want, is quite scary, I must admit. In that sense, your psychologist was probably right about my dependent personality disorder features.

I wish I could tell you that your attachment issues would be over by now. They aren’t. I’m still struggling with them, worse even than I was when I was you. However, I do have a supportive mental health treatment team now,for which I’m forever grateful.

In summary, please do believe in yourself. You have every right to feel that you need more support than your psychologist says you need. You just won’t get it yet. Eventually though, you will.

With love,

Your future self

Benzos As a “Bandaid” for Serious Mental Illness: My Experiences

Earlier today, Ashley of Mental Health @ Home wrote an interesting article about the role of benzodiazepines in mental health treatment. While benzos can be useful as short-term treatment or PRN medication for panic disorder, generalized anxiety disorder, social anxiety or insomnia, they are often used as a go-to “bandaid” med for all kinds of mental health conditions. And by “bandaid”, I don’t just mean short-term.

The first benzodiazepine I was prescribed, was the sleeping pill temazepam (Restoril) by my GP in 2006. I was suffering with significant insomnia, but really I was suffering with what I now know is a combination of the onset of autistic burnout and my dissociative shell cracking, if that makes sense. I was given ten pills to use over the course of a month at least. I took six weeks to use them up and refused to get a refill even though my staff at the independence training home nagged me about it.

Then, once in the psychiatric hospital a year later, I used a number of different benzos, one after the other, mostly for sleep too. I however also got put on oxazepam (Serax) as a PRN medication for my agitation. Whenever I took it, I’d become hazy, fall asleep for an hour or so and wake up just as agitated as I was before or more so.

At the time though, I was seen as just autistic if that at all. More so, I was seen as a manipulative, challenging pain in the neck of the nursing staff. It hadn’t been come to the surface yet that I was a trauma survivor and, if it had, no-one cared.

Benzos can cause dissociation to worsen in people with dissociative disorders. Indeed, I find that I do become more fuzzy and I really don’t like it. Benzos can also cause people with borderline personality disorder to become more irritable or impulsive. While I personally haven’t noticed I become particularly aggressive on benzos, like I mentioned above, after the first effects wear off, I do notice I become at least as irritable as I was before taking the medication. I used to attribute this to the fact that the reason for my agitation wasn’t solved by my taking a pill.

After all, one thing that Ashley doesn’t cover is the fact that people with severe mental illness who get prescribed benzos as bandaids for agitation, may very well have good reason to be agitated. I found that often the nursing staff in the mental hospital weren’t following my care plan or my crisis prevention plan at all and, when I got irritable as a result, I was quickly directed to take my Serax.

All this took place in 2007 or 2008, before I was diagnosed with DID or PTSD or BPD for that matter. Once diagnosed with these, I still ended up with a prescription for lorazepam (Ativan) though. In fact, I at one point took it at a relatively high dose of 3mg per day for several months. Thankfully, my withdrawal symptoms once quitting cold turkey due to a miscommunication with my psychiatrist, were physical only and I was able to go back on it and taper slowly soon enough.

Currently, I do have a prescription for lorazepam as a tranquilizer for when I have a dental procedure. Now that I am thinking about all the things I read in Ashley’s article, as well as what I’ve been discussing with my psychiatrist recently about my fear of losing control, I’m not even sure I’m going to take the medication when the time comes to have dental work done. Which, I hope, isn’t anytime soon.

Accepting My Ordinary Identity in Christ #Write28Days

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.

Flash Fiction: Can I Go?

“I just want to go to a friend for two nights,” Patricia yelled, asserting her words with some colorful language, as she grabbed the nearest chair she could reach. “You are NOT going to treat me this way,” nurse Nancy replied with more anger in her voice than she probably intended. More calmly, she added: “If you want to go on leave for longer than originally agreed upon, you need to discuss it with Marjorie, and she’s not available right now.” At that point, a blonde nurse in her mid-thirties entered the ward. As Patricia saw her, her anger rose and, heaving the chair off the floor, she threw it at Marjorie, barely missing her. Turning to the nurse’s station, Nancy told Patricia, not even looking at her: “Here are your meds and the address for the homeless shelter; for your severe aggressive behavior, you’ve been suspended until Monday.”


This piece of flash fiction is based on a true story from a fellow patient at the locked psychiatric unit back in 2008. I always felt rather conflicted about patients, especially those without a home, being suspended for severe challenging behavior. In this case though, the patient got exactly what she wanted.

I am joining the Six Sentence Story Link-Up, for which the prompt this week is “Shelter”. I am also linking up with Friday Writings, even though it’s Saturday. The optional prompt is conversations you’ve overheard. Though I didn’t exactly overhear this conversation, as it was told to me by the fellow patient later on, I thought it’d be fitting enough.

How I Cope With Loneliness

Today in her Sunday Poser, Sadje asks us about loneliness. She describes the experience as the feeling she gets when her family or friends can’t celebrate something important (such as the seasonal holidays) with her. This is one aspect of loneliness indeed. I feel lonely, left out even, knowing that my sister will be celebrating St. Nicholas with my parents next week and I haven’t been invited. Okay, she has a child for whom this holiday is more meaningful than it should be for me as an adult. Still, I am reminded of the last year we celebrated St. Nicholas with my family, or rather, the first year we didn’t. That was because of me: I had been admitted to the mental hospital shortly before and my parents didn’t want the hassle of having to watch me while I was on leave, so at first they suggested they celebrate the occasion without me. That year, my sister refused and the celebration didn’t go forward at all. Now that my sister has a child, there’s no way she’s going to care about whether I’ll be included or not. In fact, I’m pretty sure she’d rather have me excluded.

Loneliness, however, can take other forms too. Like I mentioned last month, loneliness comes from within a lot of the time. That’s why you can feel lonely when you’re surrounded by people. I often felt this way in the high school cafeteria.

I find that what helps me cope with loneliness is to surround myself with positive influences, both in the form of people and activities. I mean, I could dwell on my family’s rejection of me, but I do have a loving husband and loving in-laws. I also have caring staff and nice fellow clients, some of whom I consider friends.

It also helps me to engage in fulfilling hobbies, such as writing, reading and crafts. Through my blog and Facebook groups, I feel a genuine sense of connection to the outside world. Reading helps me escape my problems, including my sense of isolation. Crafts distract me and help me feel that I can be productive in a way. All of these help me overcome my sense of loneliness.

How do you deal with loneliness?

Suicidal Ideation in Childhood: Some Reflections

Earlier today, someone online asked a group of autistic women about suicidal ideation in childhood and at what age it started. It is common knowledge that depression and suicidality are near-universal among autistics. After all, we are taught, be it consciously or not, that our autistic way of expressing ourselves is unacceptable.

I remember my first autistic burnout at age five. I don’t have clear, verbal memories of the experience, but my inner five-year-old might and I do experience somatic and emotional flashbacks. The family story about the event is that I was ill with the flu. At the same time (coincidentally or not) my parents were making arrangements for me to start at the school for the visually impaired. I started in mid-May, before the end of the school year.

At the time, I wasn’t actively suicidal as far as I’m aware. I started having those thoughts when I was around age seven. I have a vague memory of telling my mother that I wanted to die sometime around that age.

Interestingly, I never made suicide attempts. Even the times I planned my “final day alive”, I never had any idea how I was going to go about actually doing it. This fact was later used to “prove” that I wasn’t serious.

I mean, when I was 21 and admitted to the psych unit, my parents came to tell the psychiatrist that I’d threatened suicide ever since I was seven-years-old, almost adding triumphantly: “See, and here she is, alive!” They said I just wanted attention.

Then again, is it somehow bad that I, deep down, didn’t really want to die? I just didn’t see any alternative. Of course I didn’t want to die by suicide. I imagine at least most people don’t really want to; instead, they want a better life. But I couldn’t get that at that time or so I thought. Does that make me a bad person? I don’t think so.

It’s so sad that, at least in my family, the red flag of long-time, severe suffering was ignored as a sign of “attention-seeking”. As if a seven-year-old even has the capacity to use suicide threats to manipulate their parents for mere attention without anything else going on with them.

The Best Decision of My Life

I really want to write, but, as usual when I’m like this, so much is spinning through my mind that I cannot ultimately get anything out of my fingertips. To get myself started, I decided to look at the book Journaling with Lisa Shea and picked one of the journaling prompts on gratitude. It asks us what the best decision of our life was. Was it an easy decision or a hard one? I’m pretty sure I already covered this topic several years ago, but the answer may be different now.

After all, up till quite recently, I would have said the best decision I ever made was to consent to being admitted to the psychiatric hospital in 2007. That, after all, set in motion the wwheels that ultimately got me into the care system. However, looking back, I could just as easily have selected my choice to go to the blindness rehabilitation center in 2005 rather than to university. After all, that was what led me to the training home and to my autism diagnosis.

I honestly don’t want to give the psychiatric hospital people, particularly my last treatment team, the credit they get if I say that getting admitted was my best decision ever. After all, like I have said before, I didn’t make much progress in those 9 1/2 years in the hospital. Worse yet, the only difference between my care arrangement before the hospital and after it, was that my husband was now in my life. My husband deserves the kudos for that, not any mental health professional.

Instead, the best decision I ever made, I made rather offhandly on September 20, 2018. This was the decision to allow my support coordinator to schedule an appointment with her regional care consultant on getting me into long-term care. The appointment itself took place on October 4.

I say I made the decision rather offhandly, in that we were discussingn living options and I eventually said, sort of half-heartedly: “Okay, you can ask your care consultant to come.” In truth, the decision was a really hard one.

Even though I had planned on going into supported housing ever since my initial psych hospital admission in 2007, it felt kind of like I was betraying my husband, my parents, my former treatment team and everyone else by admitting this is what I needed. For this reason, my husband’s first words when I said my support coordinator had scheduled the appt with her care consultant, were very comforting: “You know I support you, right?”

Treatment Plan

While in the mental hospital, every six weeks, or later, every six months, I’d have a treatment plan meeting. Not that my treatment or its goals changed anything over the 9 1/2 years that I remained in the hospital; my treatment goal was always to find me a suitable place to live and my treatment involved, well, what, actually? I honestly can’t tell you even now that it’s been over four years since I’ve been out.

What did change, were my diagnoses; from autism and an adjustment disorder (which explained my acute crisis that had led to my admission), to autism and impulse control disorder, to autism, dissociative identity disorder and PTSD, to eventually no autism at all and just borderline and dependent personality disorder and a little bit of depression (not otherwise specified) thrown in (just because with just personality disorders on my file I would have had to be discharged right away). The nurses said the psychologist who’d added depression, did me a favor that way. I think they were just completely clueless as to what they were doing with a complicated case like mine.


This post was written for the Six Sentence Story Link-Up, for which the prompt word this week is “Treatment”. I am not sure I did it right this time. I hope I did.