So you think we're 'too high-functioning'?

Too often, when we autistic adults try to challenge the treatment given to autistics, we get a set of stock responses from some parents of autistic kids. They’re all variations on ‘you’re too high functioning to understand these people/the low functioning’, or ‘you’re not really autistic, because you can write/talk/live independently/have a job/blah blah blah’, or even ‘you’re not autistic at all, because you’re not like my kid’. Just about every autistic who challenges the treatment of autistics gets handed one of these dismissals sooner or later.

But, quite apart from the whole issue of functioning levels being nonsense anyway, there’s an entirely false bunch of assumptions wrapped up in this. So I have some questions for all those so quick to dismiss us and what we have to say as ‘not relevant’.

1) You’re sure we’re so ‘high functioning’? 

You see our writings, and jump to conclusions. But you can’t see behind the computer screen. You can’t see if we’re oral speakers or not, whether we need help to write or not, whether we use AAC or not. You can’t see how, even if we can talk, we may struggle to do it, or get ‘lost’ trying to talk to people because of auditory processing issues, or how stupid, alone or ashamed it makes us feel. You can’t see how we may need aides, or a lot of family support, just to get through each day. You don’t even know if we’re toilet-trained, or only partly so, or still struggle with knowing when we need to ‘go’.

Even if we do live ‘independently’ (or what looks like it), you can’t see behind us, to our executive dysfunction - the unwashed dishes or unvacuumed floors, the piles of stuff we don’t know how to sort, the struggles with getting to school or work on time, the jobs lost or the courses dropped out of – or the absolute rigidity we sometimes force on ourselves to prevent all this.

And even if we seem to ‘have our lives in order’, you can’t see if we struggle with anxiety or depression or other mental health issues. You can’t see if we have withdrawn from attempting to ‘do’ relationships, or hold down jobs, or do many other ‘normal’ things, because they’re just too overwhelming and difficult. You can’t see the times we retreat from public places because of sensory overload or too many social challenges. You can’t see the late-night crying jags, the pacing or frantic stimming or self-harming, the banging-the-wall meltdowns, the self-hatred or suicide attempts.

Or maybe you think if we have a job, or a relationship, or are attending regular school, then we ‘obviously don’t have any problems’? You can’t see the sheer lack of understanding from others that constantly fouls up our lives. You can’t see our co-workers or bosses ridicule, snub, manipulate, bully or simply fire us. You can’t see other students and even sometimes teachers reject, pick on or bully us at school. Or how we’re sometimes beaten up in the street, or abused by a partner, or by our supposed caregivers. You can’t see how often this ill-treatment happens, simply for being autistic. You can’t see how we lack the social skills or knowledge to prevent these things, or get out of them.

In short, you can’t see anything of our lives, or how well we may or may not ‘function’ in any given area of our lives. You don’t know us, you don’t know what struggles we’ve had or continue to have, so don’t judge us, or jump to conclusions.

2) You’re sure your kids will never be like us?

A mistake many parents of autistic kids make is assuming that because their kid can’t do ‘x’ by a certain age, that they’ll never do it. Or that they’ll never be independent, or have a life of any value if they aren’t ‘normal’. 

But this is simply not true. Not only is every child on their own developmental journey, regardless of their neurology (would you expect an NT three-year-old to live independently?), but we are often slower to mature than our neurotypical counterparts, which is no indication of our intelligence levels. We may not start talking till we’re twelve – and then go on to do public speaking about our journey. We may never speak, but learn to communicate in other ways – if those around us are listening. We may not get to higher education till we’re 25 – and then do very well at it. We may not live independently till we’re 30, or need to live in a group home, or be able to work with the right supports. Maybe we’ll even get married, have kids, a career, but just a little later or slower than others. Or maybe we’ll only do some of these things - but have lives worth living anyway. You can’t predict. So stop assuming they will never be like us.

3) You think we were never like your kids?

Even if we’re (apparently) ‘high functioning’ now, you don’t know what any of us were like when we were younger. You don’t know if we were non-oral-speaking till a late age, or slow to talk ‘properly’, or had a ton of speech therapy. You don’t know if we were late being toilet-trained, or had frequent huge meltdowns where we damaged things or hurt others, or whether we struggled with school or attended some form of special education, or didn’t even try to connect with other kids till we were teenagers, and so on. Unless you have or had some personal acquaintance with us as kids or teens, or we’ve told you stuff, you can’t tell. And even then, you won’t know the stuff we didn’t tell you. 

You just don’t know – what we were like as kids, or what your kids might be like, as adults. So stop dismissing us as ‘nothing like your child’.  

3) You think that only the most ‘severely’ autistic are ‘really’ autistic?

Even amongst professionals, that understanding has long been superseded and discarded. And we autistics don’t accept it either, because it means both our struggles and our strengths are denied or ignored, and because it attempts to divide our community. Even most of us who seem ‘high functioning’ (and I stress ‘seem’) don’t separate ourselves from our supposed ‘low functioning’ brothers and sisters, or our younger counterparts for that matter, because we see a continuum between ‘what they are’ and ‘what we are’. Any differences that do exist are those of degree, or stage of development, not type. We’re all autistic together.

This is why we oppose ABA. Some of us have already been through it, or something similar, and still bear the scars, and those of us who didn’t empathise with those who did, or who still are. We know how damaging it is, how those doing it to us fail to even begin to understand what autism really is. It’s also why we oppose a lot of other autism ‘treatments’ (e.g. bleach enemas), because we know them to be both a useless waste of money and actually harmful to us, not to mention all of them being based on the assumption that autism is a Big Bad Thing To Be.

And it’s also why we promote autism acceptance, not because we don’t have problems, but because even with all those problems, we can still take pride in being autistic, because, you know, it’s what we are, and why should we be ashamed of it?

So don’t jump to conclusions, don’t write us off as ‘not relevant’ or ‘not autistic enough’, or ‘too high functioning’ to be of any use to you in understanding and helping your child. We want to help, we come to you to offer our advice, and we hope that someday, you’ll be open to listening to us.

Because one day, your kids will be us.

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.