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.

#autismpositive

It occurred to me that, with NT allies of autistic people getting together more and more, and with many parents starting to adopt the autism-positive approach to their autistic children, that it would be a good idea if there was a simple way for such people to find each other online. We autistics could also do with a simple way of identifying those who are our allies – and, sometimes, of finding each other, when we are new to the autistic community, especially online.

So I got the idea of the hashtag #autismpositive. It’s a simple thing that people can add to their blog or forum description or subject line, their Facebook group description or a pinned post in the group (probably best not in a regular post, as it will tend to get buried down the page in time). Or you could add it to the descriptive stuff on your own social media page perhaps. It seems to me that there are many ways it could be used, to identify other autism-positive types.

If you’re not sure what being autism-positive means, exactly, I defined it here in a recent blog post. It’s exactly what it says – someone who takes a positive and accepting approach to autism, rather than talking of curing, ‘defeating’ or ‘fighting’ autism, and other such negativity.

Anyway, hope you like the idea.

Autistics and Their Allies Getting Together

We on the spectrum are unfortunately all too familiar with the autism-negative parents and their groups. You know who I mean I’m sure - the ‘curebie’ crowd, the ‘hate autism’ ones, the ‘autism stole my child’ and ‘autism is an epidemic/brain damage/worse than cancer/I’m going to rid my kid of autism come hell or high water’ types. We all know and dread these people.

But a Facebook post not long ago, by the mother of an autistic child, who’d been ejected from an autism parents online group for taking a more positive approach to autism, and the response from some similar-minded parents, made me aware of something that’s been growing in me for a while. Namely, the feeling that there are far more ‘autism-positive’ parents out there than most of us are aware of. Some of these parents are on the spectrum too, but not all by any means.

I have encountered such parents now and again, over the last several years, but they always say things like “well, I’m a rare breed”, or “I’m in a tiny minority”. And given that most of the noise about autism is being made by those negative types above, or a misinformed and/or seemingly tame media, it’s understandable why they think that.

But I no longer believe they are. I think they exist in far greater numbers than either they, or we, suspect. They don’t usually seek the limelight, or go on ‘crusades’ about (against) autism, so it’s easy to overlook them. They accept their kids as they are, and don’t make a huge drama of their autism, to them, it simply is.

They may use various techniques, therapies or supports to help their kids grow and develop, but they don’t bombard them with the kind of harsh therapies we all deplore, or even too many of the not-so-harsh ones. They are simply quietly bringing them up in an autism-positive environment. And they are really, really refreshing to meet.

They’re open-minded and willing to listen to adult autistics, in fact it’s often their doing that which has helped them to become what they are, and to have the courage to shun the mainstream mindset on autism. Others seem to have come to it by themselves, with the words of autistic adults just confirming their ‘gut feeling’.

I believe it’s time for all these autism-positive parents to join together, to form groups both online and in real life, to share their different mindset and support each other, to liaise with adult autistics and advocate whenever they can for a more positive approach to autism and the elimination of such atrocities as bleach enemas.

To present, in other words, an alternative to the usual rubbish we see out there on autism, for the general public, the media, and other parents - who might be new to all this ‘autism stuff’, and really struggling, or who have been in it for a while, and are unhappy with it but don’t know of anything better.

In fact, it’s already started happening. As a result of the post I mentioned above, that mother decided to start her own group on Facebook. It’s called Autistic Allies, and it’s a place where autism-positive links and references to websites etc can be posted. There are also some other groups intended more for support, and parents actively working to see the whole bleach horror, for instance, made illegal. And whether these parents are NT or autistic themselves doesn’t seem to make much, if any, difference to their approach.

Let me be clear here – in promoting these groups, I’m not saying autism-positive parents should be thrown out of the ‘mixed’ groups that already exist on Facebook, where parents and autistics already meet and give each other advice and support. I see them as an adjunct to them, not a substitute.

So what do these groups look like?

They of course have to be careful not to be taken over by the ‘other’ sort of autism parent, so their ground rules have to be ultra-clear from the beginning.

THOSE WHO AREN’T WELCOME IN SUCH GROUPS

- anyone supporting Certain Autism Organisations (you know the ones I mean!). Initial ignorance of their true agenda might be accepted, but if they continue to support them AFTER being informed, out they must go.

- anyone espousing a ‘cure’ for autism, or posting links that lead to pages or organisations promoting it, especially those involving bleach and the like.

- anyone who advocates ABA or similar therapies.

- anyone who is into ‘pity parties’ or the ‘poor me’ thing, for having an autistic child.

- anyone who insists on normalisation or ‘being indistinguishable from their peers’ as the only worthwhile goal for their autistic child/ren.

- anyone who is negative about autism in any way, eg referring to it as a disease.

THE POSSIBLE OBJECTIVES OF SUCH GROUPS

- supporting each other in their autism-positivity.

- working on ways to get the autism-positive message out to the general public.

- working on ways to enable their autistic children to be the best damn autistics they can be, ie the ‘maximisation’ approach.

- whenever possible, reaching out to ‘new-to-autism’ parents who may be confused as to what is the best way to help their autistic child/ren.

And of course, last but certainly not least -

- listening to autistics, both adult and if possible teens and children on the spectrum, with an open mind, and liaising with them wherever possible.

Up till now autistic advocates, even collectively, have felt like a lone wolf crying in the wilderness, while the autism-positive parents have largely kept their heads down, perhaps not wanting to attract negative attention from the ‘other’ type of parents, or just getting on with their lives.

But autism-positive parents and adult autistic advocates are natural allies, and I feel it’s time to more and more actively work together, in order to change the public ‘conversation’ about autism, to change government approaches to autism, to change EVERYTHING about how autism is talked about, thought of, approached, ‘handled’ and dealt with, in every sphere of life.

Do these groups represent a turning of the tide on autism? I believe so. I hope so. I believe we can do this, and we will do this. Together, we can change the world!

The Role of Non-Autistic Allies

Recently I’ve been reading a very interesting book, called ‘Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum’[1]. Edited by Stephen Shore, it’s a collection of essays on advocacy by autistic writers like Stephen himself, Roger Meyer and Lianne Holliday Willey. It’s well worth a read, if you can get hold of it. However it was one essay in particular, entitled ‘Building Alliances: Community Identity and the Role of Allies in Autistic Self-Advocacy’, by Phil Schwarz, which really got me thinking. Most especially, one sentence towards the end, where he says –

           

“There is one thing that is really important about being an effective [non-autistic] ally… That is the essential and critical quality of a true ally that an ally does not serve as an effective ally by implementing his or her own agenda or ideas about what people on the spectrum need. Rather, a true ally implements the agenda of the people to whom they are an ally.” (his emphasis)

Let me repeat that – a true ally implements the agenda of the people to whom they are an ally. This means that any non-autistic individual, or autism group or organisation who tries to impose their agenda on us, is not a true ally. Any group or individual or organisation which purports to ‘represent’ or ‘care’ for us, but which does not listen to us or consult us, which (literally or metaphorically) pats us on the head and says (directly or indirectly) “we don’t need your input, we know what is best for you”, is not a true ally. Any autism organisation which will not allow us a voice or membership on their boards or committees or panels, or which lets us in but then tokenises or sidelines us, or in any other way renders us impotent or silent, is not our true ally. Any individual who smiles patronisingly while we speak and then goes on talking as if we hadn’t spoken at all, is not our true ally.

I’m sure we can all think of prime examples of all of these. The question then becomes, what do we do about it? The above essay gives some really good ideas about how to build relationships with those who are our true allies, and it’s well worth a read. My concern right now though is, what do we do about the organisations who have already proved they are not our true allies?

It seems to me there are several options. We can ignore them, and/or work with other organisations who are more amenable to the autistic point of view. We can try to ‘take them over’, and convert them into true allies. We can pressure them into changing, from both inside and outside. We can build our own organisations, which will work to ultimately change public opinion so that the worst of these organisations (the ones we are unlikely ever to win over) will become impotent and sidelined themselves.

Which path we choose, will depend on each autistic individual or group, their abilities and inclinations, the situation from country to country (because this is a world-wide phenomenon), and even region to region, or year to year. (Changes in leadership may render an organisation more approachable, for instance.) We all have the right to choose which path we think is most likely to work for us as individuals and as a group. I would ideally like to see all of these tactics taken by different autistics and/or autistic groups, as a multiple approach/attack is likely to succeed better than a single one. We can and must all work in our different ways, to achieve what is really a single aim – that of the implementation of OUR agenda, and the full realisation of our human rights. We still have a very, very long way to go before that is achieved, and whatever path we take, it has to lead to the same place in the end.

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[1] Stephen Shore (ed). (2004) Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum. Kansas, USA: Autism Asperger Publishing Co.