I have been reading some blogs of late, as I mentioned in my last post. Two I read today have stood out… they are:
The first I think has a lot of points that are simply incorrect (the author speaks a lot of intersectionality without actually using the term, plus s/he gets it wrong. There are also assumptions that only the privileged who do not know it would argue, hence really proving the point of privilege while trying to disprove it) – the second I believe is spot on. In case you are interested in my opinion on that. I think people should read both blogs – they offer valuable insights into both sides of the debate.
I think that non-Autistic parents may be getting the wrong idea here, given what I read in that first article…
So I would like to clarify a few things.
* Autistics are not trying to tell parents not to talk about parenting. They are not trying to tell non-Autistic parents to not talk about what it is like to parent a child with Autism. They are asking that non-Autistics do not talk about what it is like to have Autism.
* Autistics are not trying to tell non-Autistic parents not to discuss policy in relation to parenting a child with Autism. They are stating that non-Autistics should not have the final (let alone only) word on policy when it comes to Autism. They are stating that they want at least an equal seat at the table when it comes to policy in relation to Autism.
Parenting a child with Autism is one thing. Having Autism is a whole different thing.
I think parents have a right to speak about how Autism affects their child, from an external point of view (or internal point of view if they are acting as interpreter for their child). I do not believe parents have a right to speak about how Autism affects people with Autism.
There seems to be an extreme view that Autistics want non-Autistic parents to shut up altogether. This is NOT TRUE!
On a personal level, I love talking to non-Autistic parents. I have Autism. I have kids with Autism. I need to try and help them navigate a world that I myself do not understand. I need help to do that, and who better than someone who is non-Autistic and knows how to navigate that world, while also a parent of a child with Autism? Who else is going to be best suited to understand my particular challenges and do so without judgement?
I also think that any parent of a child with Autism has a right to say what they want about parenting a child with Autism. They are, after all, parenting a child with Autism.
When it comes to what is best for people with Autism however, I think people with Autism should be having all the air time on that one.
One example of why this matters… There are a lot of therapies out there for Autism and most of them do more harm than good. People who are not Autistic are not always going to know this however.
Take the discipline approach. Many parents believe that their child just needs discipline, however they choose to administer it. Time out, smacking, reward charts, etc. So when their child starts flapping their hands, the parents may decide this isn’t appropriate, and develop a system whereby they force the behaviour to stop. And eventually, the behaviour does stop. Success!!!
In the beginning, only someone with Autism is going to be able to point out that this may not be success at all. In fact, it can be incredibly damaging to the child. It can take years for an adult to process what happened to them in childhood. Years. If your only link to Autism is a three year old, then I’m sorry, but that’s not much of a link. A three year old can not process what is going on in their life like an adult can, nor can they communicate about it effectively. Hell, even adults can have a lot of trouble with it, and need help. I certainly have needed help, and I am very fortunate to have found the perfect person to do just that (my psychologist). Not everyone is so lucky.
After the beginning, as more non-Autistic parents listen to people with Autism, and start to understand our view, then they too will be able to speak with us. With us. Not for us.
I honestly believe that if there is respect for all, by all, then these sorts of tiffs will not exist. All minority groups have their fringe extremists. I belong to quite a few minority groups and the guy who sacrificed a goat doesn’t speak for all Wiccan’s any more than the KKK speaks for all Christianity. It is ludicrous to think that a Christian can speak FOR Wiccans, just as it ludicrous to think that someone who is non-Autistic can speak for all those who are. They can speak “with”, not “for”. There is a big difference. And respect I think, for one’s position, is at the heart of it all.
I respect non-Autistic parents. I respect them a whole hell of a lot. They have certainly been the driving force behind a lot of advocacy for Autism. And I appreciate that. However, now I think it’s starting to become time for some of those on the fringes to step back a bit, and allow those of us with Autism to use our own voices. Afford us that respect. And in return, I will happily bitch slap any Autistic who thinks that they own the journey of parenting a child with Autism, even if they are not a parent 🙂 And if you notice me stuffing it up, please feel free to point it out – I’m not infallible either, and tend to get ranty at times 🙂
Respect. For position, experience and knowledge.