Autism Acceptance, not cure. Be on the right side of history.

On the subject of curing homosexuality.
Let's establish the facts:
- Some people want cures for their gay children.
- Many people (particularly gay people) are offended by this.
- People who want a cure are frequently offended by gay people being offended at cure rhetoric. They think gay people should calm down and let them want their right to a cure. After all, their burden is greater, because their child's homosexuality is extreme, so they should have the right to relieve their suffering and the suffering of those around them.

On the subject of curing autism.
Let's establish the facts:
- Some people want cures for their autistic children.
- Many people (particularly autistic people) are offended by this.
- People who want a cure are offended by autistic people being offended at cure rhetoric. They think autistic people should calm down and let them want their right to a cure. After all, their burden is greater, because their child's autism is extreme, so they should have the right to relieve their suffering and the suffering of those around them.

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I'm sure you can see what I am trying to demonstrate there. Put any minority group where cure rhetoric has been part of their history, and you can see how offensive and bigoted those statements are. Sure, find ways to alleviate suffering, but recognise that being pro-cure means eradicating an entire neurology, with its own set of strengths and wonders. Sure, it has challenges too, but so does every person on this planet. Your child would no longer be the same person if they were cured. It's that simple. When you say you want to cure them, that's conditional love, and nobody wants to hear that from their parents.

Sure, some people want to be cured. Just because that want exists, doesn't make it less offensive. It just means they have been conditioned, by society, family or whoever, to uphold that same bigotry towards themselves. My belief is that it is our job to help these people feel more self-accepting, and more self-loving.

When a minority group tells the majority that they are being offensive, it is not okay for the majority to then suppress that message, no matter how much you disagree. It is time to sit up and listen. 

I have created the following image for people to copy, use and distribute far and wide. Let's get this message out!

Stimming - socially inappropriate?

If stimming is socially inappropriate, who gets the privilege of making that decision? And what about people who stare or laugh at stimming? Or worse, what about people who find stimming somehow discomforting, and consequently try to control the innocuous behaviour of others (ie: suppress stimming behaviours), in order to restore their own comfort?

When my child was 6, an "expert" told me I needed to pin his arms to his sides to stop him from hand-flapping. That was when I first realised so-called "experts" often have no idea what the hell they are talking about, and are also often just imposing their opinions on others.

Don't accept "expert" opinion as gospel, people! If it doesn't feel right, don't do it!

Click the links below to further your insight into stimming and social "appropriateness".

Socially appropriate.
"This innocuous phrase has turned obnoxious for me. Here’s an example of why: I’m reading a book about teaching social skills to children with Asperger’s and I come across a sentence stating that children should be allowed to time to engage in stress-reducing activities, including “self-stimulation in socially appropriate forms.”"

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About Stimming
"Looking normal worked well for me for a few years, and then it made me miserable. I find it ironic that when my teachers and parents told me to stop stimming, their goal was the same as when they taught me social skills or took me to occupational therapy: to help me live in the world with the minimum of suffering. But I suffered more when I couldn’t stim, and I came back to it like it was a wonderful hobby I had forgotten about."

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An interview with Emma about Stimming
A:  Do you like the word “stimming” ?
E:  No.
A:  Is there another word you’d prefer?
E:  Yes, but words are not as meaningful to me as they are to those who talk all the time.
A:  If you could choose any word other than stimming, what would it be?
E:  Self-care

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"Are you at peace with your decision?" Amanda Baggs' story of survival in hospital

Amanda Baggs is an autistic woman, and an autistic rights activist. Recently she has been very ill, and has been hospitalised. The seriousness of her illness has meant that she has needed a feeding tube to ensure her survival, but instead of automatically going to all lengths to keep her alive, doctors have tried to talk her out of her feeding tube -- out of living -- because of her perceived quality of life issues due to her autism.

Amanda has had to fight tooth and nail to get that feeding tube into her stomach. And then, just before she had it inserted, she was repeatedly asked if she was at peace with her decision. The fury that question brings up in me is difficult to express. Imagine being the person who is being asked. At peace with her decision to live??! Of course she was!

Her plight highlights a hidden prejudice, a devaluing of the lives of people with disabilities in the medical system. Amanda expresses her situation much better than me, so go ahead and read her material to find out more.

"Are you at peace with your decision?" <-- Click

What is Theory of Mind and why should I care?

Theory of Mind is the ability to understand that other people have different thoughts, beliefs and feelings to those of your own. It is the capacity to imagine what another person might be thinking or feeling in any given situation, and the ability to take a guess at their intentions. It is also known as empathy. 

In my observations, for an autistic person, it must seem like the world is filled with a bunch of neurotypicals who have no empathy. Autistics are constantly judged by neurotypicals, punished, assessed for their deficits and weaknesses, stared at, and moulded into different people to who they want to be within themselves. They are told they need to be cured, that the way their minds work is a disease, and is quite simply not acceptable.

To add insult to injury, autistic people are constantly told by neurotypicals that they have no empathy or Theory of Mind.

Can you see the irony here?

Check out this article for a deeper understanding of Theory of Mind and why it matters how we discuss it:

Psychology Today: Guide to Reporting on Autism: Theory of Mind & Empathy

Fairy Tale Forgotten: I don't want to change...

Fairy Tale Forgotten: I don't want to change...

Excerpt:

"So, I stopped seeing my therapist. I didn't like break up with him or anything. I just cancelled my last appointment and I haven't been back in a month or more.

He gave me homework. Like little projects to work on and then report back to him. His most frequent one was my eye contact. He wanted me to look everyone in the eye. Strangers, family, friends, coworkers, people in cars, people who were prepping to jump off bridges, whatever. Anyone.

I can't do that.

He asked me what happens when I look someone in the eye. When I asked what he meant, he said does anyone give you mean looks, say mean things to you, or get angry when you look them in the eye? I said, well, no. He then concluded that nothing bad happens if you look someone in the eye.

Here's where he was wrong. Bad things do happen. To me. Inside me."

Click on the link above for the full story.

What the...?

My son has always struggled with the unpredictable. Unfortunately, relief teachers naturally fall into that basket, so he tends to carry anxiety when he is confronted with a relief teacher. These are days he often struggles to achieve anything, as he spends most of his energy trying to manage his feelings and concerns.

One of the strategies he has come up with is to introduce himself to the new teacher and ask them if they know about Aspergers. If they respond in a warm and open way, and are honest about how much or little they might know, a helpful dialogue ensues and then the day tends to run pretty smoothly. These teachers, who took a moment to have a friendly interaction at the beginning of the day, are the ones who stand a chance of getting some productivity out of him.

On the other hand, sometimes there are the bad eggs. There are the arrogant ones, who seem to need to tell him that they know more than he does about himself, what he is thinking, and what he is able to cope with. There are the teachers who throw out the behaviour management plan left for them and set themselves up to fail. They try to control his every movement and his every thought. They waste their energy on futile disciplinary measures instead of care and patience. At the end of the day my boy is exhausted and teary because he has spent all his energy trying to appease the beast, so to speak. He has learned nothing, except how harsh the world can be at times.

In short, these people fail at teaching.

And there are those who are just plain, no-holds-barred, downright utterly rude and mean-spirited. Recently my son introduced himself to a male relief teacher and asked if he knew about Aspergers. This man, confoundedly, replied with, "Yes I do, and you don't have it."

When I was told this story, I was of course absolutely livid. But the first word that came out of my mouth was, "Why?" And every time I think about his choice of response, the same question comes to mind. It's unfathomable to me. I mean, really, why would a teacher preempt any chance of a positive teaching relationship and set themselves up to have a day full of failure? Why? It seems the very definition of insanity.

One morning about a week later, I witnessed my son attempt to engage with the same teacher, greeting him buoyantly. The reply? A curt and deflating, "Hello, whoever you are." And away this man walked, seemingly oblivious to the effect of his dismissiveness.

On another occasion some years ago, my son (aged 7 at the time), asked a teacher for a moment of her time, as he had a question for her. She paused in front of him. He started with "Uhm," and then a brief pause, as he tried to gather his thoughts into a properly formulated question. She then abruptly cut him off, said, "I don't listen to people who say uhm," and walked away. He of course burst into tears, unsure of what he must have done wrong. He never did get to ask whatever it was he wanted to know.

I don't understand why adults think it's perfectly okay to default to being rude to people under the age of 21. The contempt I so often see directed at children and young people simply astounds me. Adults are supposed to know how to behave. Adults who work with children are supposed to be setting an example for those children. Kids are the ones who are supposed to be allowed to get things wrong. Adults should by default be holding themselves to a higher standard, because they ought to know better.

And to those people who behave in such a way, or who feel the above is at all familiar, I feel the need to request that you think about how you would answer the following:
- Why do you choose to be so hateful towards children and young people?
- If you despise them so much, do you really think you're in the right career?
- What did that young person ever do to you, to deserve such terrible treatment?
- Do you really think you are so superior to children? Why?
- If you were talking to a fellow adult, would you speak to them in the same tone, or use the same words?
- How do you justify to yourself such rudeness to children?
- Why do you hold children to a standard of behaviour that you are clearly unable to achieve for yourself?

And finally...
- Why waste energy on such negative interactions? If you just chose to smile and show an interest in the person before you, (yes, children are people too!), you might even have a better day than you expected.

Patience Please

A deficit in executive functioning can cause some interpersonal communication issues. I regularly hear, "Mum?!" as an introduction to conversation (just like all mothers). I of course answer "Yes". Then there is a looooong pause (several beats) while he tries to organise his thoughts into a coherent sentence or question.

I have to really restrain myself sometimes from jumping in impatiently and telling him to hurry up (which I will admit I sometimes say anyway, I'm human after all!). If I do jump in without thinking, he has to start over and it takes him twice as long to communicate, so effectively I have made the situation more difficult for myself by being impatient.

Once, when he was about nine years old, he approached a teacher by name. She answered him, and then he said, "Uhm..." while he was gathering his thoughts together. She immediately said, "I don't listen to people who say uhm," turned on her heel, and walked off, leaving him confused and sad.

I know, I know - you're incensed to read that story (and if you're not, please read it again). Let me tell you, it certainly fires me up to share it. I can't bear the way adults so often disrespect children.

But do you know what? Instead of getting all enraged, I like to wonder to myself what wonderful warm little moment that mean-spirited woman cheated herself out of that day, all because she couldn't wait a few measly seconds.

How is Asperger's pronounced?

Asperger's Syndrome is named after Hans Asperger, a very clever fellow who, in 1944, recorded a set of notes about the behaviours of some boys he had as patients at the time. These boys presented as meeting some, but not all of the criteria for a diagnosis of Autism.

Hans Asperger's name is pronounced with a hard G (as in gory, gross and green, NOT as in aubergine). So is Asperger's Syndrome, as it is named after the man himself.

If you have trouble remembering this in the moment, think to yourself,
"Ass Burgers" - then smile, and pronounce it properly. I can tell you on behalf of my child with Asperger's, who identifies with the title with great pride, it drives him crazy that so many people say it incorrectly.

It's a very small thing, but it matters more than you probably imagine, so thanks for taking the time to make an effort with it. :D

Standing in line

Doesn't it drive you crazy when you can literally feel the person queuing so closely behind you, their hot breath on your neck? Or actually touching you?!  Why people think it's okay to stand so close to a stranger, just because their back is turned, is utterly beyond me.

This problem is not unique to people on the spectrum though. There are plenty of supposedly neurotypical people who need to learn this lesson in queue etiquette.

When it happens to me, what I really want to do is turn 180 degrees and face the person - at which point they would realise how much they have invaded my personal space, based on the fact that our noses are actually touching. I have a friend who says she throws her bag over her shoulder, knowing that if they are standing too close, they will be hit by the bag. I'm not personally comfortable with doing that, but I completely understand the sentiment.


So, if you're standing in a queue, what's the right distance between you and the person in front of you? The basic, easy to remember rule is...

Always leave an arm's length in front of you when you stand in a queue. 

If you're unsure of the distance, practise with someone at home first. Get them to stand in front of you. Curl your fingers into a fist, and reach out your arm straight in front of you. If you can reach the person in front you are too close.

And if someone's uncomfortably close behind you, try turning sideways, facing your shoulder in their direction. It's not as confronting as directly facing them, but it's close enough to the real thing that they do tend to take a step back.