Why we need more than Autism ‘awareness’ … all year ‘round!

“Oh but Jeanette, don’t say you’re Autistic. You could pass for normal”.

“Do you live at home with your mummy?”

“I taught a kid with Autism….’ (proceeds to tell me how they physically pushed said Autistic student’s chin up to force him to make eye contact and thought that was perfectly OK even when challenged)

“That is so ret*rded…..’ (followed by continued use of the R word over several weeks and required repeated explanation of why that word is equivalent to a horrible racial slur)

“Gee Jeanette, isn’t it good how [insert child in family with many Autistic members] is so normal.’

“Wow, you go to work. That was really nice of your employer to employ you. You are really lucky they took you on’

“Gee, your’e Autistic? I didn’t even realise anything was wrong with you.”

“You shouldn’t say you are autistic – I mean, you’re very mild.”

All of these statements have been made to me, either about me or Autistic people generally. They represent varying degrees of insulting assumptions and disrespect.  Each of these comments really upset me but this is certainly far from the full list. Some of these statements have been made by friends. some by relatives and some by acquaintances who wanted to share their ‘understanding’ of Autism with me.

The worrying thing about these statements for me is that they are almost all unintentionally insulting. The people who said most of these things did not realise how difficult they were for me to hear and how invalidating and just plain rude they are. Most of the people saying these things thought they were connecting with me as an Autistic person. I don’t even think they are indicative of people being consciously ableist. Taking the into consideration, I feel these comments indicate we have quite a long way to go to raise understanding and respect around Autism. …

Which brings me to April. The whole focus on Autism ‘awareness’ troubles me. It seems to be a slightly more benign version of the sorts of comments listed above. What is awareness? I am aware of difference – there are many different groups and backgrounds people come from. It doesn’t mean I have any understanding of what people from the groups tend to experience or feel. For example I know there are people living in Mongolia. I am aware of Mongolians.  But if my understanding stops at awareness, that is all I know. If I expand my awareness a little I might discover that in Mongolia, the horse is a very important part of daily life for many people. I might see a photo of a yurt and a photo of someone drinking a fermented mare’s milk drink. Does any of that awareness tell me about what it is like to live in Mongolia? Does it stop me from being prejudiced against Mongolians in the unlikely event that the whim to do so takes me? No, not really. Awareness is not anywhere near understanding.

In terms of Autism, awareness is hardly a useful thing at all by itself. When I was an Autistic child at school, a lot of the bullies were very aware I was different. They used this to torment me. If all I asked for in life was awareness then I’d probably get bullying and some more of those rude comments above rather than anything helpful or inclusive.

Awareness is shallow.It is the top layer of understanding Autistic perspectives. To know and understand someone you need far more than just awareness.You will need things like understanding – knowing how a person thinks and experiences the world.You will want something positive too – we aren’t improving life for Autistics if our awareness and understanding results in dismissiveness, making decisions on behalf  of Autistic people with their input or invalidating us.

After understanding, the next thing you need is respect. We are different to the non-autistic ‘norm’ and that is OK. We often see things in a different way, we have insights and thinking which may be seen as atypical. Respecting that different approach and drawing lessons and value from it, that is a good thing. Then we need inclusion. To be aware, understand and respect is good but including Autistic people and their insights and experience is even deeper. Inclusion means people stop focusing just on the differences between us and instead work together as friends and colleagues.

The final element I see is love. To love someone – or beyond the individual to broader Autistic experiences – you see them as equal – if different – to you. You embrace them and their experience. Love has no us or them, love has no hierarchy  – no paternalism, no judgement. Love sees the essence of a person and values them. I don’t mean all non-autistic people should find an Autistic partner though! My notion of love in this example is beyond the sexual, beyond intimate relationships. Love to me is as simple and as difficult as seeing someone as they are, without judgement. A non-autistic someone – or organisation that someone leads or works for – who has all the elements of Autism awareness, understanding, respect, inclusion and love is very unlikely to make any of the statements at the start of this post.

At this time of year I reflect on the April Autism Awareness Day and Month. One thing I often see is that my Autistic friends and colleagues do not really enjoy April. A lot of the time the ‘awareness’ seems to not really include Autistics themselves and the things we have to share. So this April I will be adding understanding, respect, inclusion  and love to my awareness. If we are going to have a month for building all those things then Autistics will need to be involved in everything which goes on. I hate feeling excluded for something which s meant to be for me and other Autistics.

So happy Autism Awareness, Understanding, Respect, Inclusion and Love month – which is actually every month of the year.

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10 thoughts on “Why we need more than Autism ‘awareness’ … all year ‘round!

  1. Such an important topic and post. Thank you for writing it.

    I’m already dreading April, especially after the things I heard on Down’s Syndrome Day. Really dehumanizing and ignorant things said by people who were happily celebrating this day. I find awareness to be completely useless since prejudice tends to be subconscious.

    There’s a case here in Sweden where an autistic boy isn’t welcome at his charter school, so a lot of people are speaking up about ableism… while using really ableist language. I’m trying to write a blog entry in Swedish about the dangers of using ableist language, but I don’t expect people to understand.

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  2. “Love to me is as simple and as difficult as seeing someone as they are, without judgement.”

    This is what we all want and need, regardless of who we are. Such a simple concept, but often more difficult in practice. Even for those with the best of intentions.

    Thank you for this post and happy Autism Awareness, Understanding, Respect, Inclusion and Love month. And year.

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  3. Well said! I completely agree. I’ve started a blog about traveling the Boston subway system alphabetically with my son (who is a very bright, with a mild ASD) because it’s taught me so much about him and Boston on the way. At first I was a very reluctant participant but I’ve come to really love our excursions now! And I’d love to ask him to write a few of the contributions going forward too. https://alextoat.wordpress.com/

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