A few years ago, one of my articles received this comment.
“F*** YOU F***YOU F***YOU.
You don’t even know anything about autism. It’s a f***ing curse that controls parents’ lives until they finally die!
F*** YOU”(Obviously, this was written without the asterisks.)
The article was Five Ways to Damage Autistic Children Without Even Knowing [all links on Autistic Not Weird open in new tabs], and as far as I could tell, there was nothing abusive or judgemental in there. But when you look past the abuse in this comment (which must have been far less personal than I took it to be), you see a picture of real hurt.
These words are likely to be a typed expression of years of negativity this person has been put through, which might range from fighting tooth and nail for basic services, to having their or their child’s rights and dignity thrown aside (or assumed not to exist), or catering for disabilities they couldn’t possibly have been prepared to face as a parent.
On top of that, one regular comment I hear from my parent friends is how they feel like they’re “not allowed” to talk about the struggles to people outside of the autism world. (A lot of autistic people feel this way too. In fact, a lot of people in the wider disability community can tell you how annoyed they are by their duty to be “inspirational”.) I even remember one friend telling me “just for once, I’d like the chance to talk about the difficulties of raising my child without people telling me I’m wrong.”
This is one reason why I would never discourage my autistic students from talking about the things that make them struggle. Nor would I create any type of environment where they feel unable to share what’s on their mind. The rest of the world manages that just fine without me joining in.
As much as I’ve ended up with a reputation as a positive autism advocate (which really wasn’t my intention, by the way), I do believe it is essential to talk about the negatives associated with autism. Not least because:
- Plenty of people will be feeling negative about their autism (or their relative’s), regardless of whether or not it’s openly discussed. We might as well address the issue healthily.
- Whether you’re an autistic person or a parent/caregiver, it’s unhealthy to feel forced to keep your difficulties to yourself.
- Talking about our struggles can lead to other people in similar positions feeling less isolated.
- If we only talk about the advantages without being open and honest about the struggles, the general public won’t believe autistic people need accommodations or services.
With all that said, it’s not enough to think “okey dokey, let’s splurge some negativity for autism awareness!” Whenever I discuss the negatives associated with autism, I first ask myself questions like:
- Is this going to make people think lesser of the autistic population?
- Is this going to make other autistic people think lesser of themselves?
- Will this truly help people, or is it just me venting? (Nothing wrong with a bit of venting of course; just don’t confuse it with autism awareness.)
I often deliver speaking engagements about how to raise meaningful autism awareness. In my opinion and in my experience, real autism awareness means being open and honest about the difficulties, but never talking about them in a way that would make an autistic person feel worse about being autistic. (While making this point, I make sure to show the audience this picture, made for Autistic Not Weird’s Facebook page🙂
So how do we discuss the negatives openly, without falling into the trap of it being problematic?
I’m going to split this article into three sections. Although there’s common ground for this issue across the wider autism community, I’d give different advice to autistic people (like myself), parents of autistic children, and professionals in autism circles (again, like myself).
Honestly though, I’d read through all three sections if you have time. They each have advice that applies across the autism world.
If you’re autistic yourself…
Autistic voices are progressively being listened to more and more in the wider world. Whereas twenty years ago it would have been a special treat if a real-life autistic person spoke at an autism event, it is now becoming unacceptable to have events without us. And the more events I speak at, the more events I notice that are exclusively hiring autistic speakers/professionals.
With this in mind, there’s now an extra layer of responsibility upon us. The way we talk about autism will directly influence non-autistic people’s opinions about it, which will in turn influence how we get treated by them. (No pressure, right?)
The tricky thing about writing this section is that I believe in absolute self-determination. That means that if an autistic person hates or feels negative about their autism, they should have every right to feel that way and express it how they want. Their autism, their experiences, their choice. As long as they’re not hurting other autistic people in the process, of course. (I said something very similar in a piece similar to this – ‘Hating autism’, and the damage it does.)
But of course, there are helpful ways and unhelpful ways to talk about it. Not just in the glorious name of autism acceptance, but for your own self-esteem too.
The first thing I learned in therapy was that our opinions about ourselves make an immeasurably big difference. (Believe it or not, they even make a biological difference to us.) And our self-perceptions are directly impacted by the way we talk about ourselves – for example, there is a huge difference between “I’m crap at socialising and I’ll never make any friends” and “I struggle with socialising and trying to make friends is hard”.
I’m not going to pretend that solving your life’s problems is as simple as changing your language – if you’re in therapy (or need therapy) like me, then you and I both know it’s so much more complex than that. But seriously, changing our language about ourselves is an extremely useful start.
The second bit of advice I’d give is one that I often use when chairing meetings – don’t just present problems, suggest solutions (if you can).
There’s a difference between “I hate crowded places” and “crowded places would be so much easier for me if _______”. Not only does the second approach make others more aware of your needs and how they can help; it can also put a goal or a solution in your own mind (because I don’t know about you, but I’m dreadful at catastrophising problems and making myself think there’s no way out of them).
Thirdly, don’t just talk about your struggles. Talk about your strengths too. And if the world and society have brainwashed you into believing you don’t have any, look deeper. If you’re human, you have strengths. That’s the rule.
You don’t even have to be the best in the world at them, by the way. During the worst years of my life, I was deeply proud of being in the top 164,000 chess players in the world according to FIDE.
And finally, a side note about talking about autism positively – in my opinion, we need to stop trying so desperately to separate the words “autism” and “disability”. If avoiding the word “disability” is supposed to be ‘autism-positive’, it naturally means we must think negatively of disabled people. (Ask any disabled autistic person how ‘autism-positive’ they think that is.)
It’s become common in the autism community to say “Autism isn’t a disability – it’s a different ability.” But I have to admit, I only 50% agree with that. Fair enough, I wouldn’t call my own autism disabling, and the only things holding me back (and so many of my friends and students) is the way society refuses to accommodate us. Long story short, we are more disabled by society’s inflexibility than our own autism.
But I understand the contempt some people feel for that “different ability” sentence when they or their child are significantly disabled. For some autistic people – including many advocates, bloggers and speakers – autism really is a disability. And you know what? Disabled autistic people are valid and valuable too.
It’s entirely possible to be disabled and wonderful at the same time, so why are we afraid of autism and disability appearing in the same sentence?
If your child/relative is autistic…
Full disclosure: I’m often told I’m a father figure to numerous autistic young people, and I’d readily take a bullet for the young people I work with and/or know socially, but I’m not a parent. I make no assumptions about what the parenting lifestyle is like, nor do I claim to have expertise in parenting beyond what I have been taught by my parent friends.
With that said- of all the people who have found my perspective helpful, I’d say about half have been parents of autistic children. And while writing this, I’m deliberately ignoring the well-known chasm in the autism community between autistic adults and parents of autistic children. Frequent readers of this website will know exactly how I deal with that divide: not by shouting matches over the internet, but by meeting up for fish and chips and elevator videos.
So how should you talk about the autism-related negatives if you’re the parent/caregiver of an autistic person? What I’ve already said above covers the main principles: be honest, be compassionate, and don’t talk exclusively about the person’s struggles.
When writing about autism online though, I think there’s a factor that isn’t discussed enough: whose experience people are aiming to raise awareness of.
Because there’s a difference between “autism awareness” and “parenthood awareness”. Both of them are needed and can offer enormous support to other people, although the boundaries between them can become blurred unintentionally.
Short version: spot the difference between these two sentences.
- “Do you realise how difficult it is raising an autistic child?”
- “Do you realise how difficult my autistic child finds this?”
I’ve lost count of the amount of times I’ve seen parent bloggers scolded for “making their child’s autism all about them”. The majority probably don’t mean to do so (with some high-profile exceptions), but it’s difficult to argue against the scolders when a blog claims to be charting a child’s “heroic autism journey” while the content is largely about parenting.
It’s important to distinguish between writing about autism and writing about parenthood. When setting out to talk or write, make it clear in your own head – and if appropriate, to those you’re communicating with – which type of awareness you’re aiming for.
Oh, and choosing “parenthood awareness” is not a free pass to talk disrespectfully about autism. The compassion and dignity rules still apply. In a world where a parenting book (the infamous “To Siri With Love”) can become a New York Times bestseller – despite its author not seeking her 13-year-old’s permission to write it (whilst having no problem asking his non-autistic brother’s permission), writing extensively about sensitive topics such as his toileting issues, writing about how she pictures his future sexual experiences with the Benny Hill theme in the background, and casually mentioning how she wants to sterilise him when he becomes an adult because she predicts he could never make a good father – be the kind of parent advocate who talks about parenthood while building up the child, not breaking them down.
And finally – I’m aware that most parents reading this will already know this – but it has to be said. Publicly sharing videos of an autistic child (or adult) having a meltdown is literally abuse.
As an educational professional, I have a duty to be responsible with my words – especially if they carry a lot of emotional weight. And that is exactly why I have used the word “abuse”. I do mean it, in the literal sense.
A quick point before going into detail: I’ve known parents who have recorded their child’s meltdowns in order to record evidence for a professional (e.g. a diagnostician who asks for evidence of their child meeting the criteria for a diagnosis, or a headteacher who needs to know how the school run feels for them in the morning). This is acceptable if it’s for the sole purpose of helping a child gain the accommodations they need, if the video is shown to the bare minimum number of required people, and if the professionals involved adhere to their confidentiality guidelines.
Sadly, I have also seen parents just film their children in their most terrified and vulnerable moments, upload the video publicly to Facebook/Instagram/etc, and encourage people to share it in the glorious name of “autism awareness”. One recent example:
This, right here, is why I consider the practice to be abuse: as a special needs tutor and former primary school teacher, I have grave concerns about it from a safeguarding perspective. And this goes far beyond “the whole internet can see it”. The internet seeing the autistic person’s face is bad enough, but there’s more.
I never got the chance to tell this person that, by going directly against their child’s expressed wishes, they are teaching him that he may have the physical ability to say “no” when an adult makes him uncomfortable – but this will only be seen as a request, and the adult has the right to overrule it for whatever reasons they see fit.
I won’t go into further details – I wrote extensively about respecting children’s right to say no in my article about The Stop Rule, but you can imagine how catastrophic this attitude will be for the child in the long term. The next adult who makes him uncomfortable and ignores his cries of “stop” probably won’t be doing so for the sake of ‘autism awareness’.
If you want to share what a meltdown looks like, why not write about it? Why not blog anonymously? Or why not ask the child while they’re not having a meltdown how much exposure they would be comfortable with, and respect their answer? (And if they’re unable to communicate their wishes, assume the most reserved option. When someone’s dignity is at stake, it’s better to play it safe than be wrong.)
Like I said, I hope I’m preaching to the choir here and most parents reading this would never do such a thing. But if you see one of your friends sharing one of these videos to “raise awareness” – unaware that they’re fuelling the demand for this child to be made even more vulnerable – please let them know about these safeguarding concerns.
If your students or clients are autistic…
Of course, if you’re a teacher, psychologist, therapist, au pair or anyone else who works with autistic clients, a serious level of professionalism is required. You have to be especially wary of talking about a client’s autism negatively from a professional standpoint – not only are you not the person themselves, you’re not a member of their family unit either.
In many of these jobs, you can avoid being problematically negative about autism simply by sticking to your profession’s code of conduct: the most obvious example being don’t discuss your clients online. (Even if my students didn’t know about the existence of this website – which they do – I still wouldn’t discuss their issues on the internet for everyone to see. It’s both unprofessional and morally wrong.)
It’s no secret, however, that these jobs can be emotionally difficult. The more you care about your students/clients, the more difficult the job is to cope with. The best special needs teachers are the ones who drive home after an incident-filled day worrying about whether their students will be ok, not the teachers who just block it all out in the name of “professionalism”. I don’t care what anyone says – personal compassion towards your students is everything, even if it means the job becomes more emotionally difficult as a result.
So how do you express negative feelings appropriately and healthily? By talking about the right things to the right people in the right way.
The right things: The issue with the student, or how it’s making you feel. Although those topics are closely linked in our minds, remember that there’s a distinction between the two. A student who trashes a classroom and swears at you, for example, has their own set of needs and circumstances that will have led them to their actions. Your feelings are important to discuss, but they are also entirely separate to the student’s needs. Discuss both but remember the distinction.
The right people: Your colleagues if appropriate – the closer they are to the student/client, the better – or your supervisor if you work in therapy. And never, ever talk about an autistic student/client in front of them as if they’re not in the room. Regardless of their level of disability, I promise they can hear and understand you. (Yes, even those who don’t look at you or talk to you. Their ears work separately to the rest of their face.)
The right way: Honestly, with care and compassion. Simple as that. The student who trashes the classroom mid-meltdown may make you feel deeply hurt, but the appropriate response is always sympathy. (Besides, if you don’t feel sympathetic towards an autistic child who has an enormous meltdown and does something they later deeply regret, maybe working in autism circles isn’t for you.)
And whoever you are…
Ok, I said there were three sections. But here’s a fourth section for free.
When discussing this article with my Patreon supporters, several of them offered their perspectives and ideas. One mentioned something important that had slipped my mind: the importance of strategic negativity.
When applying for services for yourself, school placements for your child or further professional support for your clients, you have to talk about the negatives. It’s all well and good saying “my child struggles horribly at her school but she is so brave and I know she’ll grow up to be amazing”, but sadly that’s unlikely to get you the result your child needs. If the authorities are being asked to spend money on you, your child or your client, they will naturally look for reasons to say no. Unfortunately, you need to make things sound as bad as they are at their worst, in order to get the services that will help the person at their worst.
Of course, if your child or client is in any position where they may read the report for themselves (including later in life – I read the reports written about me as a child at the age of 29), make sure you explain to them why these things are being written so negatively, and explain the art of ‘playing the game’. However you express it, make sure they understand that the contents of the report do not reflect your opinions of their strengths or their worth as a person.
And finally, remember what it is you’re being negative about. Please please please don’t be like the person in the “hating autism” article who said “I f***ing hate autism!” in response to being unfairly discharged by a professional… when it wasn’t actually their autistic child’s fault.
- Be negative about services for autistic people, not autistic people themselves.
- Be negative about judgement of autistic people, not autistic people themselves.
- Be negative about stereotyping autistic people, not autistic people themselves.
- Be negative about the unemployment rate for autistic people, not autistic people themselves.
Talking about the negatives associated with autism is no bad thing: I would even say it’s necessary and even healthy. It does, however, have the potential to become problematic and harmful, even with the best intentions. But if the difficulties are talked about respectfully, sympathetically and with appropriate degrees of confidentiality, open discussion of the difficulties can do a lot of good for those who endure them.
So let’s go forth and talk about the difficulties – but entirely with a view to making the world better for autistic people.
That’s it from me: as always, feel free to join Autistic Not Weird’s Facebook community.
And for those who feel my work is worth supporting, writing for Autistic Not Weird is literally my job now, in addition to my special needs tuition. Here’s a link to my Patreon page for those who want to help me keep doing this for a living, in exchange for various rewards.
Chris Bonnello / Captain Quirk-
Underdogs, a near-future dystopia novel where the heroes are teenagers with special needs, is soon to be released through Unbound Publishing. A character-driven war story which pitches twelve people against an army of millions, it balances intense action with a deeply developed neurodiverse cast.
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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