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.


Also linking up with #PoCoLo.

Autism Diagnosis and Rediagnosis: Do Labels Matter?

Earlier today, I saw a blog post about adjusting to a late autism diagnosis. The author didn’t receive her diagnosis till her mature years, while I was 20 when first diagnosed as autistic. Still, I could relate to some of the things she discusses.

Particularly, I related to the fact that diagnosis changed my perspective in quite a radical way. I was no longer just a bad, difficult person. I was autistic. Always had been.

As regular readers of my blog might know, I have had multiple autism assessments since my first diagnosis in 2007. The reason for this is complicated and mostly related to the fact that professionals kept questioning my diagnosis and wanting further testing. At one point, the records of my most extensive assessment disappeared due to a change of electronic record keeping systems and this led to my then psychologist jumping at the opportunity and removing my diagnosis altogether.

Most autism support groups online are open to self-diagnosed individuals. The main one I was part of at the time, however, I found out, was not. I was heavily criticized and distrusted by the other members after I’d lost my diagnosis. They thought my psychologist had finally unmasked me as someone with a personality disorder rather than autism.

Of course, I also needed an autism diagnosis in order to get the right support. With just borderline and dependent personality disorder on my file, I would be treated much differently by the mental health agency than with autism as my diagnosis. I wouldn’t be able to get support from the intellectual disability services agency either. Thankfully, I got my autism diagnosis back.

Interestingly, the psychologist who removed my autism diagnosis, always said that diagnoses didn’t matter, yet she was the one constantly throwing around new diagnostic labels at me. In a sense, an official diagnosis doesn’t matter, in that self-diagnosis is valid too, at least outside of the need for services. For instance, I self-identify with a dissociative disorder even though I haven’t had this official diagnosis in over eight years. However, to say that labels don’t matter and that all that matters are the symptoms, as she said, is quite frankly wrong. Especially in the context of the need for services.

After all, I am the same person with the same symptoms whether I am diagnosed as autistic or as having borderline and dependent personality disorder. The treatment approach is quite different though. With autism, I need structure and a fair amount of support. With BPD and DPD, I mostly need to be taught to self-regulate by being made to take responsibility. Of course, in an ideal society, services aren’t rigidly based on someone’s diagnosis, but in our current healthcare system, they are. Because of this, I am so glad I currently have a well-established autism diagnosis and that my current support team at least don’t question it.

This Is “Profound Autism”?: Reframing the Discussion Around Complex Care Needs

A few days ago, there was a discussion on the Autism Science Foundation’s Facebook page in which parents of autistic adults with complex care needs were describing their children with the hasthag #ThisIsProfoundAutism. I asked to reframe the discussion to include people with multiple disabilities including autism in general, because it is rarely (but not never!) autism, no matter how severe, alone that causes a person to be completely dependent on caretakers. I then explained that due to the combination of my disabilities, I need 24-hour care, including one-on-one for most of the day.

Not surprisingly, I was quickly met with the question whether I was saying I needed 24-hour help with basic tasks such as eating, bathing, dressing myself, etc. Well, the Autism Science Foundation page is a public Facebook page and I didn’t want the people on my friends list (including immediate family) who don’t know this, to judge me for it, but the short answer is yes. While I, like presumably most “profoundly autistic” people who don’t have physical disabilities, am physically capable of eating and dressing myself for the most part with some difficulty, my executive dysfunction means I still need help with them. As for bathing, well, I basically need someone to wash me, because, while I can physically hold a washcloth in my hand, I don’t have the organizational skills to actually work out the ritual without a ton of supervision and even then it’d lead to a lot of meltdowns.

I did, incidentally, point out that I recognize intellectual disability as a valid additional disability that needs to be taken into account when I asked to reframe the discussion. After all, that’s most likely what’s causing these autistic adults to be unable to understand instruction and to be completely dependent. For me, it’s a combination of executive dysfunction, which is a direct autism symptom, blindness, mild cerebral palsy, and other things.

I also do recognize that the need for support with severe challenging behavior is not the same as the need for help with basic personal care. One does not exclude or necessarily include the other and one is not more valid than the other. I, for one, am somewhat more independent in terms of eating, dressing and bathing than my severely intellectually disabled fellow clients. I am a lot more dependent where it comes to the effects of my challenging behavior.

I also do not mean to say that autism on its own cannot possibly cause a person to need a lot of care. It can. I am reminded of a girl I read about on Dutch social media many years ago, who indeed had hardly any functional communication skills but did have an IQ above 85. She, unlike me, didn’t have any additional disabilities. She was completely left behind in the care system: she was too severely disabled for traditional child and adolescent mental health services, but her IQ was too high for intellectual disability services. Really, I should not have called for reframing the discussion to include those with multiple disabilities, but those with complex care needs in general.

That being said, I strongly disagree with those people who say that just because I can write, means I should have ignored the conversation, since it clearly wasn’t meant for me. The fact that I can write, does not make me not dependent on care providers and does not mean policy or lack thereof won’t affect me. I am autistic and that, along with my blindness and other disabilities, causes me to need the extensive care I get now.

Autistic Pride Day 2019: Reasons I’m Proud of Myself

It’s June 18, which means it’s Autistic Pride Day. I have known this for years, but didn’t realize it today until I saw another blogger share about it just about an hour ago. I don’t really know what to write about for today. I could list positive traits of autism, but others have probably already shared those. Besides, I don’t pride myself on my autism, despite not seeing it as a negative thing. I am proud of myself just for who I am. For this reason, I am going to list some reasons I’m proud of myself. Autism, after all, is part of who I am.

1. I am self-aware. I had a meeting today with a care consultant for a possible living facility for me. I was quite able to articulate my needs and strengths. I am increasingly aware of those.

2. I am resilient. Some people don’t think so, as I’ve had multiple mental health crises. However, I always veer back up.

3. I am determined. I don’t let others tell me what’s best for me. Again, this isn’t always seen as a positive characteristic, but so what? I think these people are just trying to get me to be submissive to their ideas of what I should be.

4. I am honest. I can be blunt, but I always speak my mind.

5. I am open to new experiences. This may contradict some common autism stereotypes. In fact, when I first heard of autism, it was explained to me as “being afraid of new things”. I am not.

6. I am affectionate. I do display affection in my own, autistic way, but I can definitely show love and affection for my husband and others I care about.

7. I am creative. Not in the sense that I can tell imaginative stories – my fiction has a horrible lack of imaginativeness to it -, but I think outside of the box.

8. I can be focused. That is, if something grabs my attention, I can completely hyperfocus on it. This can be a negative characteristic, but it definitely helped me during my school years and helps me focus on what I like now.

What are some reasons you are proud of yourself?

Confessions of a New Mummy