If this article challenges you, it may be a good thing. I’d encourage people to read this with an open mind, even if your instincts are telling you to oppose it.

 

I used to have a love/hate relationship with my autism, especially in the early days of knowing I was autistic. To this day, I have followers on Autistic Not Weird’s Facebook page [all articles open in new windows] who hate their autism too. And in most cases, that hatred was taught. By society, by fearmongers on the internet, by people closer to us, whoever.

 

But for a moment, I’m going to ignore the historical hatred directed at me for being autistic (or just a freak, during my pre-diagnosis days). Instead I’ll concentrate on a former student of mine: a 12-year-old boy who was the perfect poster child for the type of autism that suffers the most hatred.

During my time with this boy, I changed his soiled pads more times than I can count. I had to deal with physical attacks, which he couldn’t possibly have known would hurt (because 12-year-olds mid-growth spurt often don’t know their own strength). I had to physically stop him putting himself in danger, and catch him when he ran away. I rode in the back of an ambulance with him when he had a seizure during our end-of-year celebration meal.

And during the whole time, I never hated his autism.

Ever.

He deserved better than that. Because in hating his autism, I would be obliged to hate his quirky approach to life, his habit of patting his hands against me to show that he liked me, his near-unceasing laughter, and his unreserved enthusiasm that had never been dulled by peer pressure.

Nobody deserves to have their whole being hated, not even autistic people (and I can’t believe I just had to write that sentence).

 

So why is the attitude of “I love them but hate their autism” so popular?

I have no doubt there’ll be people reading this thinking “I don’t hate my child’s personality – just their autism!” And if that’s you, I’ve got good news for you: it’s not autism you hate.

 

Not long ago, after reading one too many anti-autism rants, I wrote this on my personal Facebook account:

 

When I hear/read someone saying “I bloody hate autism!!” it basically becomes my whole evening. I know they don’t mean it personally against me, but it seriously hurts and it removes my ability to function for several hours. This includes when it’s said about a profoundly disabled child – I may not share their experiences but I have a duty to defend autistic people wherever they are on the spectrum, and it hurts when I see them attacked.

Allow me to expand on the above quote.

 

When I first found out I was autistic, I spent a long time seeing “autism” as a word which meant “everything that is wrong with me”. Why? Because the world had taught me that autism was supposed to be a bad thing. Not just a way of thinking that leads to certain specific strengths and certain specific difficulties, but inherently a bad disorder that removed your quality as a person.

Before I had an opportunity to understand what autism meant for me, I was already being taught to hate it.

Of course, my case is different to my students (but it still matters). But hatred spreads, with or without learning difficulties. So if you’re going to hate, hate in a healthy direction.

You can hate the difficulties faced by autistic and/or disabled people. You can hate the low employment rates, the fight for services, assumptions of incompetence, public misunderstands, negative stereotypes and outright discrimination. Hell, I remember hating my student’s seizures as I held his hand in the back of an ambulance. (Outside of those difficulties though, it was difficult to pity a boy who loved life as much as he did.)

But hating autism means more than hating the struggles. In the truest sense of the phrase, hating autism means hating the autistic person’s whole character.

We don’t like to think of it that way, but logically that is what it means.

 

How to express negative feelings in a non-damaging way

I once heard a parent shout “I f***ing hate autism!” because her child had been unfairly discharged from professional care. And yes- services can often suck, and professionals can leave a lot of people feeling let down.

But seeing it from the autistic child’s perspective, having her brain hated by her mother was probably an unfair reaction to some professionals making bad choices.

Of course, this mother clearly loved her child. But her phrasing was extremely unfortunate to say the least.

 

Whilst preparing this article, I discussed the topic with plenty of parents of disabled children. One common theme in their responses was not being “allowed” to express any negativity about how autism impacts their lives.

(The internet, at the same time as thriving on negativity, also looks down on it. According to the rules, disabled people have to be inspirational figures. Note that my own voice as an autistic person was only seen as worth hearing once I’d gained the appearance of overcoming my challenges.)

 

Despite my reputation as a relentlessly positive autism advocate, I never shy away from realism. Sometimes being autistic hurts. Living in a world built for everyone else hurts. Loving and supporting other autistic people hurts. And that hurt – like all hurt – should be discussed.

But bloody hell, let’s discuss it in a way that isn’t damaging to the cause.

I uploaded this to Autistic Not Weird on Facebook back in April, but I’ll include it here to help drive my point home.

 

For reference, here’s a quick guide to talking about people’s differences/difficulties:

Helpful:

“I love my black friend, but I hate the fact that he faces so much racist discrimination.”

Harmful:

“I love my black friend, but I hate the fact that he’s black.”

 

Helpful:

“I love my Jewish friend, but I hate the fact that she faces so much anti-Semetism.”

Harmful:

“I love my Jewish friend, but I hate the fact that she’s Jewish.”

 

Helpful:

“I love my girlfriend, but I hate the fact that she gets paid less than her male counterparts and is taken less seriously than them.”

Harmful:

“I love my girlfriend, but I hate the fact that she’s a woman.”

 

Helpful:

“I love my autistic son, but I hate the difficulties his autism gives him.”

Harmful:

“I love my autistic son, but I hate his autism.”

 

And to those who argue against this by saying “you can hate a person’s cancer, so why can’t you hate their autism?”, please remove that comparison from your head. It’s an insult to autistic people and to cancer survivors. For future reference, autism and cancer should never be mentioned in the same sentence (except ones like these, if you want to be pedantic). To compare the two increases the public’s hatred of autism and, by extension, hatred of autistic people.

 

I feel compelled to share a comment left by Miriam from Faithmummy while I was asking for parents’ insights on this topic. Miriam is the mother of two autistic twins: one profoundly disabled and one who’s very capable but struggles massively with anxiety issues.

I think it’s fair to say that she’s been on quite a journey of autism acceptance in recent months. With historic articles such as ‘I don’t want to be an autism mum anymore’ and ‘mourning a child I haven’t lost’, she will openly admit that her advocacy has been interpreted as anti-autism in the past. Since then, her attitude towards autism has shifted dramatically: her focus now seems to be on how awesome her children are at the same time as being straightforward and honest about their struggles. (Which, to me, is the absolute best way to talk about autism.)

Miriam said:

“I used to hate the fact I will never hear my son talk but then I realised that wasn’t hating autism – that was my own grief at loss of what I expected to happen and not my son’s fault in any way.

I could hate the fact my children find the slightest transition so hard that we can become housebound. But that is MY issue, not theirs. I am the adult and I need to deal with my own emotions, expectations and experiences in a way that sets an example to my children and helps them. Hating their autism or hating autism period won’t help anyone.”

These days Miriam’s articles have titles such as ‘blessed with a different child’, and very tellingly, ‘I could hate autism, but…’. Her children remain the exact same children as before, but her outlook seems a hell of a lot brighter. And all it took was an attitude shift.

(To learn more about how Miriam crossed that bridge, I wrote a whole article about it here.)

 

Very few people who say they want an “autism cure” actually do. Let me explain.

The cure issue is an extremely emotive one, and the source of countless online arguments. On one side you have parents of disabled children who would do anything to make life easier for their child, and on the other you have autistic people who are sick and tired of people seeing their whole way of life as needing a “cure”.

 

I have been in several conversations with those who claim to be pro-cure, and have managed to not take it personally. Instead, I asked them this question:

“If you could remove all of your child’s difficulties, but keep their autistic personality traits intact, would that be enough?”

 

To date, 100% of the people I’ve asked have said yes. Which tells me one crucial thing: they don’t genuinely want a cure for autism. All they want is for their child to overcome their difficulties, and become the most capable version of themselves they can be.

Which is an absolutely perfect approach – what kind of parent wouldn’t want their child to overcome their difficulties? And none of these parents wanted to throw out the baby’s personality with the bathwater.

 

Unfortunately, when the word “autism” becomes no more than a synonym for “difficulties”, the word “cure” is all some people have to describe what they mean.

Maybe one day, people will use “autism-related difficulties” instead of just “autism”, and say “overcoming difficulties” instead of “autism cure”. It would avoid a lot of misunderstandings, and make well-meaning conversations sound a lot less anti-autism (or, more accurately, anti autistic people).

 

Before I move on, I must mention the small but significant minority of autistic people who want a cure for themselves. The points I’d make to them are very similar to what I’ve said above – that it may be their difficulties they hate more than their whole personality, or even others teaching them to hate themselves. But this does raise an ethical question: is it ok to hate your own autism?

Through gritted teeth, I’d say yes. If you’re autistic, the autism is yours to feel however you want with. My own life experience tells me that hating our own brains is unhealthy, and it places enormous restrictions on our self-esteem and visions/ambitions for our own future. I would not recommend it. But as much as I would try to help an autistic person feel positive about themselves, on principle I have to respect their autonomy and their right to manage their own self-perception.

 

It has to be said though: in many of these people’s cases, their hatred of their autism was put in place early…

“Autism… a part of me so terrible that even my mother can’t love it.”

If you read that last paragraph about autistic people hating their autism, and panicked at the thought of your own child having the same attitude as an adult, read carefully.

 

In my (unexpectedly) most-read article ever, Five ways to damage autistic children without even knowing, #5 was “let them know you love them but hate their autism”. I’ll try not to repeat myself too much: feel free to read my original insights in the other article.

 

People in general – young people in particular – have a habit of adapting their behaviour to suit others. If I fart loudly in a roomful of people and everyone looks at me aghast, I’m likely to adapt my choices and not do it again. And on a less humorous note, I spent my teenage years changing myself to appease the people who were bullying me. As an adult, I kept trying to make myself ‘less autistic’ so others would approve of me more (or dislike me less).

In all three cases, the reason is the same. Fear of other people’s disapproval.

 

But if a child knows their autism is openly despised, there’s nowhere for them to go. They can’t go down the ‘changing my choices’ option, and choose to not be autistic next time. The part of them being hated is one of those rare parts that is literally impossible for them to get rid of. Sure, you can change behaviours and help people with their difficulties, but you can never remove autism from a child’s head.

Hating a child’s autism won’t make them magically able to solve what they’re told their problems are. It will only instruct them on what parts of themselves they’re supposed to hate.

 

I’ll end this part with the same point I made in the other article: if you reach the end of this article and still choose to hate autism, then obviously I can’t change your mind.

But please, whatever you do, never let your kids find out.

They’ll already have the rest of the world trying to convince them that their autism is a horrific curse and that their brains are wrong by nature. They don’t need their closest family teaching them the same.

 

Because if autism becomes seen as something which must be hated…

  • Autistic young people will obediently grow up hating themselves.
  • The general public will fear us for no justifiable reason.
  • Nobody will employ autistic people.
  • The general public will not even attempt to understand your autistic child.
  • The cure fraudsters will make a fortune.
  • Whenever an autistic child is murdered by their caregiver, all public sympathy will land on the caregiver rather than the person who was literally murdered. (Oh wait – that one already happens.)
  • Autistic people’s weaknesses will be obsessed over, and their strengths assumed not to exist.
  • The suicide rate among autistic people will be even higher than it currently is.
  • It will become even easier to dehumanise the disabled, opening the door to horrific consequences.

 

That last one’s no exaggeration. There’s an American school in the news right now which has been told it’s allowed to deliver repeated electric shocks to its students, even as punishment for basic childlike disobedience. It’s seen by the courts as ok because the students are autistic.

 

There’s no happy ending to this article, I’m afraid. Because we’re not even close to this issue being sorted. But I do know where the fight starts: it starts with people changing the way autism is talked about. And even if the world just switches from thinking “I hate my child’s autism” to “I hate the difficulties my child faces”, it would remove far more damage than you think.

To finish, some striking words from autistictimestwo.blogspot.com.

 

And that’s it from me: whatever your link to autism, you’re more than welcome to join Autistic Not Weird’s Facebook community, or watch my advice videos on YouTube.

Finally, since writing for Autistic Not Weird has literally become my job, feel free to have a look at the rewards available on Patreon for helping me spend my working days advocating for autistic people worldwide.

 

Take care,

Chris Bonnello / Captain Quirk

Further Reading: blogger Maura Campbell, an autistic mother of an autistic child, wrote a response to this article which is well worth a read – “The night I said “I hate autism” and why I was wrong.” It’s interesting to read experiences from a parent who not only sees autism from both “sides”, but has experienced both contrasting attitudes towards it too.

-

Chris Bonnello is a national and international autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).
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4 Responses

  1. Julie Clarke

    Absolutely brilliant article. These are the things we need to talk more about in the world but we don’t. I’m sure this piece will be well received and hopefully educate and offer support those that think autism is to be feared and hated. Perhaps it will offer food for thought to some 🙂 . Thank you for writing this.

    Reply
  2. Kristin Schneider

    Thank you, and everyone else out there writing these articles, for all the help and education. My seven year old has autism and I’ve been educating myself ever since I got the diagnosis when he was three. His slightly brother (1 year apart) has been told as best as I could how autism makes his brother’s brain work differently (in the context of constantly being asked why his little brother gets more chances to get some things right). I’ve tried hard to point out the positive whenever we talk about the difficulties. This year, my youngest is verbal enough to start having his autism explained to him and I was researching how best to do it. In the middle of my research, I overhear my oldest telling my youngest that he was much better at memorizing because of his autism. My youngest jumped up and started shouting “Yay autism!!” So we’re going to work on the details, but I don’t think there could have been a better way to break it to him.

    Reply
    • CaptainQuirk

      That story really made me smile. 🙂 Thanks for sharing.

      Reply

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