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!