Victim Blaming When Autistic Needs Are Overlooked

An autistic person walks into a classroom. They are there to start a course and are already slightly nervous. The course consists of two components, X and Y. With a 15 minute break in between. X interests them very much, in fact it’s their special interest. Not only do they have no interest in Y, they are actually terrified of it. They have emailed the course director and told them of this fact. And are told that it is no problem whatsoever to skip the Y part. In fact, the email goes on, X is on first so they can simply go home after. They are not offered a refund of half of the course fees, but that’s ok as they have not asked for one.

They have arrived at the classroom ten minutes early. The course coordinator tells them to sit where they like. She is aware that they are autistic and has been cc’ed in the email about them leaving at break time in order to skip Y.

Just as the course is about to begin, they discover that, actually, Y is on first, not X as they have been told. The classroom is full at this stage and they have to stand up, in full view of everyone, and dying of embarrassment, to leave. Which they do , and promptly burst into tears and cry all the way home. Because they can only go home, they cannot bear to go back to that room after the break, to finally study X. They just can’t.

An advocate goes back to the classroom during the break, while they hide outside in the stairwell. The advocate explains what happened. And is told they will have to contact Head Office if they want to go further. The advocate, who is also autistic and struggles with phone calls, writes a very polite email explaining the situation. And enquiries as to whether they might get a refund, which they understand is not usually given, considering the unusual nature of what occurred.

They get back a reply saying that neither those at Head Office nor at the course “had been made aware” that such a sudden change in schedule would be such a big issue. They do not mention the refund, not even to say it won’t be given.

This is victim blaming. The onus should not be on an autistic person to make people aware of how every single eventuality will effect them. Especially in this case, where it was not something they would ever have predicted. This is highly unprofessional and simply not acceptable. And yet this is what happened to an autistic person today.

And similar happens to other autistics every day. Our needs are overlooked. Even simple accommodations like advance notice of timetable changes do not happen. Even someone relatively uneducated about autism should know in this day and age that we do not like sudden changes. That we need advance notice of these changes. That we may react badly if our needs are not met, if we are overlooked and not accommodated.

Needless to say, the advocate replied with a slightly stronger worded email. It will be interesting to see the response.

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Not Up For Debate

Today I did something I’ve never done before, I binned a comment on one of my blog posts instead of approving it. The blog post in question was Transphobia in the Autistic Community and the comment was a long transphobic rant by an autistic woman. Which just proved the point I was making in the post.

The person in question obviously doesn’t follow my blog or they would have known that I’m transgender and non-binary. They went so far as to inform me that gender isn’t a binary. Lol. A lot of their comments were couched in concern-trolling language, as if they actually cared about the autistic people they were commenting about. They went so far as to make the laughable suggestion that being in favour of transgender rights was akin to approving of eugenics.

I could have written a long and elegant rebuttal of each of their points. But I chose not to. I chose to do what Jordan Peterson would term censorship (a word that doesn’t mean what he thinks it means) and what I would term self-preservation. I simply don’t have the time, energy or fucks to expend on communicating with transphobes.

So straight in the bin her comments went.

On my blog, transgender rights are simply not up for debate.

A Question of Motives

The thorny subject of ABA keeps cropping up every day. Autistic advocates and their allies clash with ABA therapists and certain parents over its promotion. Day after day after day. It’s wearying.

And that got me to thinking why. Why do we do it. Seeing as going head to head with ABA promoters takes to much of our mental and emotional energy, why do we do it?

And then I thought: if you want to see whether someone is on the right or the wrong side of history, you need to examine their motives. Perhaps this is a rather simplistic way of looking at things,but it’s one that popped into my head and I can’t let it go.

So, first let’s look at ABA therapists. These people have careers and incomes at stake. Follow the money, as it were. And there really is a lot of money involved. But also, being told that what you’ve spent a good deal of your time and energy on is actually abusive must feel like a slap to the face. So, their motives are easy enough to understand.

Then let’s look at the parents who promote ABA. Most are loving parents who only want the best for their children. Unfortunately they mistakenly believe that the best outcome for their children is for them to do things in a less autistic way. To be less visibly autistic. They may believe this will lead to a greater chance of living independently, of getting a job, or not being bullied. They may have been told these things by autism professionals whom they trust. For them, ABA is a means to achieve these things. They don’t understand that the ends don’t always justify the means.

Also, like the ABA therapists, they don’t want to have to face the fact that they may, however unintentionally, be subjecting their children to abuse. Especially when their children seem happy on the surface. The long-term effects of ABA have not yet made their mark on these children. PTSD can take a long time to become apparent.

These parents remind me of the ones that defend spanking. “I was spanked and I turned out alright”. Leaving aside the question of whether or not they actually turned out “alright”, the fact that spanking, or ABA, may not damage every single recipient is no justification for it to continue. If even one autistic person is harmed by ABA then that is one person too many.

And now let’s move on to the motives of the anti-ABA advocates. Unlike ABA therapists, we have no financial incentive for our position. So, why are we doing it?

Attention? They say there’s no such thing as bad publicity. But I disagree. Fighting against ABA, we get called every name under the sun. We get aggression and abuse. We get talked over and told to shut up. And we don’t really get the kind of attention that would override that level of abuse. People still don’t know we exist. Our voices are drowned out by the pro-ABA lobby.

Are we simply bored? Hardly. Most of us have busy lives, a lot of us have children of our own. We do what we can but don’t really have the time or energy to expend on this fight. If we were bored we’d simply counter that by spending time on our special interests. I suppose fighting against ABA could be a special interest for some, but most of us have other things we’d much rather spend our time on.

Do we want autistic children to miss out on the glorious benefits of ABA because we did? Yup, I’ve heard that one. That could possibly be a motivation for a bitter and twisted autistic. But really seems far-fetched, don’t you think? Plus there are a fair few autistics who actually had the “benefit” of ABA as children and are amongst the strongest opponents of it.

The real answer, I think, is empathy. We are motivated to act against ABA because we listen to, and believe, victims of ABA. We can see how they have been harmed and we don’t want to see other autistics suffer the same fate. Autistics are known to hate injustice and we can see the inherent injustice of ABA. We don’t hate parents of autistics who use ABA. But we want them to see that there is a better way. We truly want the best outcomes for their children, even if our definition of this is slightly different from theirs, in that we see the best outcome as allowing autistics to be authentically autistic and to accept us and support us instead of trying to assimilate us.

So, like I asked before , please ask yourself why so many autistics are against ABA. It’s really not that difficult to come to the correct conclusion.

Theory of Whose Mind?

Having theory of mind allows one to attribute thoughts, desires, and intentions to others, to predict or explain their actions, and to posit their intentions

(Wikipedia)

Theory of mind, as explained above, basically means being able to read (or at least guess accurately) other people’s minds.

I have weak theory of mind. Though I can usually tell if someone is happy, sad, angry or upset, I often have no idea why unless they actually tell me. I used to think that my theory of mind was fine. That others would think similar thoughts to me in similar situations. And because of this, I often made assumptions that got me into trouble. I still do.

Some “Autism Professionals” would say that’s because I’m autistic. And while I have to remind myself that I can’t read minds, I would argue that nobody can. Just as I have no idea what’s going on in someone’s mind, they have no idea what’s going on in mine. For example, I have often been called condescending and accused of thinking that I’m better than others. While in my mind, I’m merely pointing out a factual error someone has made, and not ascribing values such as “better” or “worse”.

The problem is, non-autistic people are more often inclined to think along the same lines in similar situations than autistic people are. So their chances of guessing correctly when they guess what another non-autistic person is thinking are higher than my chances of guessing what they’re thinking. But, similarly, their chances of correctly guessing what an autistic person is thinking is much lower. We simply think differently to the majority. Autistic academic Damien Milton refers to this as the double empathy problem. (Empathy and Theory of Mind are linked but I’m not going to get into that right now.) Autistic Science Lady makes very similar points here.

So, while I am now more aware that a lot of my problems arise from problems with my Theory of Mind, I will no longer blame myself as severely as I have been doing.

I can’t read minds. And you can’t either.

A Little Story About A Horse…

I recently read a little story written by an Autistic Irishwoman, Evaleen Whelton, explaining what it’s like being an autistic advocate here in Ireland, or anywhere really. It really struck me, so I’m going to share it here with permission.

Myself and others have been trying to be heard for the past few days in an online debate on ABA between adult autistics and professionals. I left them with this but also I wanted to post it here too.

I will leave you with a little story about what’s happened to autistic voices right here and what happens too often.

We have scientific evidence of how horses behave, we have theories about what horses feel, we have studied horses for many years and have a vast knowledge about them. We have ethical ways of treating horses according to our studies and the beliefs based on those.

One day, along comes a talking horse who tries to tell us that actually some of the ways we treat him make him want to die inside, that many of his friends feel like this too, that they long to roam free. That they are happy to serve us but need us to do something in return so that they get a fair exchange.

We tell that horse that he is ignorant, that he can’t possibly know as much as us with our many years of research, our qualifications and our study of his and other horse’s behaviour.

We tell him to be quiet, that he doesn’t know what he’s talking about and that there is scientific evidence that horses feel good about themselves in response to the way we treat them.

We tell that horse to shut up.

We dismiss what he says and make him want to die inside all over again.

Until we find a happily ever after for this story autistic people will continue to die inside.

Please remember this story the next time you address an autistic person.

Evaleen has organised what looks like a brilliant conference next year in Cork. It’s the first time in Ireland that an autism conference consists entirely of autistic speakers. So if you live in Ireland and want to support and help elevate autistic voices, and learn a thing or two along the way, you really should check it out. I haven’t bought my ticket yet but hopefully will soon. You can get tickets and more info here.

#TakeTheMaskOff

I recently heard of a new campaign being launched later this month, going under the moniker Take The Mask Off. It is a six-week long campaign aimed at highlighting and talking about the concept of “masking”. This is something I haven’t written about enough, but it’s a very important subject and is connected to a lot of other subjects, such as stimming.

Each week a different topic connected to masking will be emphasised, and you will be able to find blog posts, videos etc about these, tagged with the hashtag #TakeTheMaskOff. More info can be found here , on The Autistic Advocate’s blog, as well as in the info graphic below. I hope to take part as it is such an important topic to discuss. And here’s a link to the launch video as well. It’s well worth watching, though I do find watching split-screen videos quite difficult as there’s so much going on visually.

Image description copied from The Autistic Advocate’s website as I’m useless as writing them.

[Image Description:

Large body of text of black and white writing in smaller black bordered sections on a teal background.

From top to bottom reads:

“Follow: #takethemaskoff

Join in with 6 weeks of Blogs, Vlogs, Videos, Interviews, personal, experiences, on and offline content on all Social Media platforms covering the topics below.

You decide if you’re going to fully take part, or dip in and out – but the most important thing is helping to teach those who don’t understand about Masking and why it’s important to have Acceptance so that Autistic people can #TakeTheMaskOff

Week 1 23-29 July What is masking? What it’s like to wear the mask.

Week 2 30-5 Aug What is Stimming? How is it related to Masking?

Week 3 6-12 Aug How does Masking affect Mental Health?

Week 4 13-19 Aug What is burnout? How is it connected to Masking?

Week 5 20-26 Aug Diagnosis/self-awareness. How does that impact Masking?

Week 6 27-2 Sep Coping Strategies. What can help you not to Mask. Using it purposefully?

The Finale 3-10 Sep #TakeOffTheMask How people have been affected by the week.

For more information on Facebook or Twitter visit:

The Autistic Advocate – picture appears to be a white masculine person with short hair and glasses and some short facial hair. The picture is black and white.

Neurodivergent Rebel – picture appears to be a white feminine person wth red glasses short reddish hair and pierced ears with a red jacket over a black shirt underneath.

Agony Autie – picture appears to be of a white feminine person with short pixie hair coloured blue. Wearing a pink and white floral print short sleeved top.Do I look autistic yet – picture appears to be a white feminine person with long sandy blonde hair that is darker towards the top of the head. Wearing a long sleeved black top.

]

Holiday Guilt

Today is the halfway-point on our foreign holiday, and I’m feeling guilty for not doing the holiday “right”.

We are in Malta, in the fanciest hotel I’ve ever stayed in, with a “family room” that’s very spacious and has amazing views. So far, I haven’t left our hotel bedroom today, except to have breakfast, and then an over-priced lunch in the poolside cafe. I didn’t even dip a toe in the pool and it feels like such a “waste”. Guilt may force me to take a dip later, but probably not.

We went on a tour yesterday. A lovely boat ride followed by a bus tour which included the shortest of walks, up to the citadel in Gozo where we mostly sat and ate pizza. Later we scoped out the Blue Lagoon in Comino but it was an overcrowded sensory hell so we chilled out back at the boat. And that was it. And yet somehow enough to wipe me out for today.

So I’m sitting here in the balcony, watching others enjoy the pool, hoping beyond hope I’ll have energy to venture somewhere reasonably priced for dinner. And that I’ll be ok for our planned trip to Rabat in the morning.

Our holiday will be over soon, and I hope I don’t keep feeling guilty for not “doing all the things” and squeezing as much value out of it as is possible. I just have to respect that this is all I’m capable of doing right now. That I’m disabled and autistic and holidays for me now take on a different hue. And that sitting on a balcony in sunny climes is actually pretty good going.

But I still feel guilty.