My Autistic Acceptance Day post - On Allies - Again!

Lately I’ve been thinking again about allies. By rights, adult autistics and the parents of autistic children should be natural allies, as these parents are raising the next generation of us. We should be working together. But alas all too often we’re distinctly not. I think the reasons for this are many.

On the one hand, parents have been fed the message that autism is a Terrible Thing, an epidemic or disease, that it’s caused by vaccines, mercury, the ‘wrong’ gut bacteria, too many antibiotics in pregnancy, or whatever the cause de jour is this week. They’re frequently told, right from diagnosis, that their child needs forty plus hours a week of intensive ‘therapy’ from a very young age to ‘get rid’ of the autism, or their kid is doomed. They’re told that their child will have no future, their marriage will break up, their other children and indeed their whole family will suffer if they don’t.

Terrified, overwhelmed, having no understanding of what it really means to be autistic, they succumb to all this, and some take years to work their way out of it. Many, alas, never do, and become vociferous advocates of the therapies, or rabid anti-vaxxers. They are sadly not open to hearing from adults on the spectrum at all, and can even be hostile. Others simply ignore us, believing that we’re ‘too high-functioning’ to ‘really understand’ their kids.

Adult autistics, on the other hand, have had some pretty negative experiences at the hands of various NTs - sometimes, sadly, including our own parents. We’ve been ridiculed, yelled at, condemned, beaten up, put down, manipulated or abused in various ways. We’ve been rejected by our families, thrown out of home, denied access to services, ended up homeless, incarcerated in mental institutions, misdiagnosed, fed drugs or given electric shocks. We’ve been arrested, imprisoned, and some of us have even been murdered. Many younger adults have gone through all that ‘therapy’, and are suffering PTSD as a result.

Those of us who manage to endure, or evade the worst, know our own survival is always risky. We live with the knowledge of What Can Happen. We’ve been injured beyond belief, and it often shows. To expect the most traumatised of us to be friendly to NTs is like going up to a wounded tiger and patting it on the head, and expecting it to purr.

Add in a compliant and unquestioning media, the highly efficient publicity machines of big anti-autism groups, a largely still-ignorant or pathologising medical and psychiatric profession, the routine exclusion of autistics from organisations, groups and government processes that affect us, and it’s no wonder we so often don’t interact.

And yet. Amazingly, some parents do make it through all the garbage they’re fed. And some autistics are willing to engage in dialogue with parents, to make the effort, to try to reach them. And when that happens, it’s something special and incredible.

For those of you who don’t know, I am one of the admins of a Facebook group called ‘Autistic Allies’. We are a mixed group of autistics and parents of autistic children, both on the spectrum and not. It was originally started by the mother of an autistic child, who wanted something different from the usual autism parent groups, with their pity parties, ABA promotion, anti-vaccine talk, and insistence on normalising their kids. She’d even been thrown out of some of those groups, for disagreeing with all the negativity.

Soon, other like-minded parents joined her, along with some of us autistics who were interested in working with these more open-minded parents. The group has evolved along the way, and its primary purpose now is to educate people, so that we are all empowered to go out there and change the public dialogue around autism. We are thoroughly autism-positive in our approach, allowing no promotion of ABA or anti-vax or anything else that is negative about autism. 

I feel that we are doing important work. Not all will agree, I know. But to turn the public discussion of autism around, to eliminate the negative stereotypes, first of all we need to educate and prepare each other for the storm. To build our ally base. Only then can we go out there and fight the good fight, educate others in turn, and change the public perception, and hence treatment of, autism and autistics. There is *SO* much ignorance out there. We’re very much about fighting it, in our own way.

And I think it’s a unique group. We work hard to keep it free of the various types of drama that plague just about all autism parent and autistic groups, being pretty strict on trolls, baiters and general trouble-makers of any neurology. We boot those who break the rules, and let them back in only if they promise to behave. We wield the Big Stick quite often – and you know what? We just get more and more popular! People love it! So much so, we’re now over 2000 members and still growing, and we’ve had to set up a sister support group.

A big reason for our success is that we insist that the dialogue between the two groups must be, and remain, respectful at all times. Parents must come in prepared to listen and truly take in what autistic adults are telling them. Any parent who says stuff like “that’s just your autism talking”, or “you’re too high functioning to understand my kid”, or “you don’t know ABA like I do”, will find it hard in our group!

Autistics, on the other hand, have to refrain from the kind of abuse hurling, angry outbursts and factional disputes that are sadly all too common in some of our autie groups. We know all too well that it’s not a job for everyone - many autistics have been hurt too badly to willingly engage with any NT, parent or otherwise. But those who can do it, do, and it works.

Although as far as I can tell we’re the only group like this, that doesn’t mean no-one else can do the kind of thing we’re doing. I see positive stuff happening elsewhere, sometimes, but it’s patchy, and in many cases diluted by a lot of other stuff happening that’s not so positive. 

It needs a conscious effort to choose the autism-positive approach, and engage in dialogue. But it can be done. We’re doing it, and it’s time more started doing it. Time more parents truly listened to us. Truly understood that we’re not saying what we do just to make their lives harder. Truly understood that we do know what their kid is going through, that we’ve been there, done that, and are in fact trying to help them. If only they’d listen. It’s time for them to do so.

Because when I look around at all the ‘Autism Awareness’ stuff that’s happening RIGHT NOW, even as I write, when you understand the roots of it all, and that autism ‘awareness’ all too often means autism ‘bewareness’ – ie that the message is overwhelmingly negative – you realise just how important it is to offer an alternative.

I repeat – adult autistics and parents of autistic kids need to work together. Separately, we can end up lost, alone and isolated, powerless and knowing that the world doesn’t understand us. But together, we can move mountains, and change the world.

Autism Acceptance Day

On this day, Autism Acceptance Day, let’s make a commitment to changing the way autism is approached or talked about. For too long, we’ve had to put up with all kinds of negative talk about autism, been forced to listen as it (or autistic people) are referred to as a tragedy, a monster, a thief of ‘good’ children, an epidemic or disease, a breaker of marriages, a trial and a burden, on and on, there seems no end to the insulting terms they heap on us. (Why, anyone would think we had no feelings!) (Yes, folks, that’s sarcasm.) All of these come from a viewpoint of seeing autistics as ‘wrong’ or ‘deficient’, simply because we are not behaving like NTs. Any way in which we differ from ‘normals’ is seen as a bad thing, we know this all too well by now. Comparisons are never in our favour.

But it goes deeper than that. NTs are supposed to have greater empathy and understanding of others, and the ability to ‘put themselves in another’s place’ – yet all those abilities just fly out the window when it comes to us. Most seem incapable of even beginning to ‘get’ us. I believe this is due to them completely not understanding that autism is NOT a set of behaviours (though that’s how it’s usually diagnosed), but rather a completely different neurological mode, one which is in-built, and which causes us to perceive, sense, think about, view and approach the world differently. Until NTs understand that, they will never understand anything about us - and will continue to assume that our behaviour is a matter of lack of self-control or ‘over-indulgent’ parents or an ‘anti-social’ disposition, or simply arrogance, selfishness, rudeness, etc.

But what if they approached us with this new understanding of our neurology? Imagine if parents, for instance, instead of just assuming their child’s meltdown is a random, inexplicable thing or a temper tantrum, realised their child’s extreme sensory sensitivity, and looked at everyday things from their perspective. A bee is buzzing in the window, a dog is barking somewhere, the neighbour’s mowing their lawn right outside, the radio is jangling tunes from the kitchen, the TV is blaring, their siblings are quarrelling, a car is honking… And that’s just the noises. If smells, textures, sights and movement are factored in, the parent might suddenly see that their child’s meltdowns don’t really ‘come out of nowhere’, but have an entire environmental history behind them.

Or what if instead of getting exasperated when their child rips off their clothes every chance they get, assuming the child does it out of ‘defiance’, or that it’s ‘just part of the inexplicability’ of autism, the parents stopped and asked themselves - what is it about the clothes that so bothers them? Is the label scratchy, or the fabric irritating? Is their skin hyper-sensitive – or are they the opposite, hypo-sensitive to cold, the clothes seeming to them an unnecessary restriction? Once a parent begins to approach the issue from this perspective, it will seem less insurmountable.

Or imagine if someone took the time to ask themselves why an autistic child – or adult – likes to spend so many hours flicking their hand in front of their eyes, or spinning wheels on toy cars, or staring at an object. Imagine if they grasped that the autistic may in fact be trying to make sense of something, or confirm that some things always stay the same, or always move in the same way, even in a world that to us is highly confusing, constantly changing and swirling – that they may, in fact, be something of a ‘natural scientist’!

And what if, instead of dismissing a non-verbal child or adult on the spectrum as ‘not all there’, and believing that there’s ‘no point’ in trying to communicate with them, people applied the principle of ‘presumption of intelligence’, and did everything they could to facilitate communication, by whichever means works best for that autistic person – even if it’s not speech, even if it’s slow, even if the person has bad days when they aren’t capable of communication at all, or seem to have forgotten all they previously learnt, or have to resort to assisting devices some of the time, but are able to speak at others. Imagine if it was understood that our verbal abilities are fluid rather than fixed. Then further imagine if the non-verbal were treated with respect and kindness, instead of being segregated into ‘dummy classes’ or institutions or other kinds of ‘holding pens’, or abused by their caregivers – or even murdered by them.

Imagine too a world where any autistic child was allowed to stim, to tap and spin and jiggle and rock and hum, to hop or skip instead of walking if they felt like it, to sit how they feel most comfortable, to crack jokes that others don’t understand or do the same things in the same way, day after day. Imagine if their ‘obsessions’ were reframed as ‘special interests’, and incorporated into their daily activities whenever possible – as a matter of course. Imagine if their individuality was respected, acknowledged and validated, their ‘quirkiness’ seen not as ‘bad behaviour’ but as evidence of a totally unique perspective on the world, offering new insights on it. Imagine if that was also the case for adults on the spectrum.

Imagine if NTs, instead of assuming rudeness etc in their autistic workmate, classmate, family member, neighbour, etc, were able to stop and realise that the person wasn’t intending anything negative, but is rather simply straightforward and honest, perhaps lacking a few social graces, but also lacking the ability to indulge in the ‘games-playing’, manipulations, or subtle sabotages that are the hallmark of so many NT interactions. Imagine if they could come to appreciate us instead of just reacting negatively.

This list of ‘imagine ifs’ could be much, much longer. But my point is that all of this is possible – if only we could move the ‘dialogue’ about autism (which isn’t currently really a dialogue at all, since that implies an equality of voices, but rather a rubbishing) into a reframing of autism in the public mind as not something negative or scary, but rather a different way of being human, as authentic as the NT way, and just as worthy of respect. Imagine what that would be like.

Imagine it – and then let’s go out and make this ‘Autism Acceptance Day’ the day – and then the month, the year, the decade - we start to make it come true. Because every day should be Autism Acceptance Day.