I have been putting off blogging about this because I really wanted to see whether Aspect would delete the comment that I blogged about yesterday, but they haven’t as yet. I had hoped that they would, but apparently that comment isn’t deemed to be disrespectful under their house rules.
Interestingly, the thread that is the subject of this blog post has been deleted. That kind of shows an uneven, or uninformed, manner of moderating their social media presence, but whatever.
So, this is how it goes: I posed a question to Aspect.
I have a question:
Who do Aspect consider to be their *primary* clients? From this letter, it would appear that it’s families first; autistic people maybe every so often.
If families are intended to be the primary clients, then that’s fine. No one would disagree that families do require some support; however, if that’s the case, then it’s misleading to pretend that autistic people are the primary clients.
On the other hand, if autistic people (including autistic children because they’re people too) are the primary clients, then family experiences should not be prioritised over the experiences of autistic people.
I thought it was clear that I was specifically looking for an answer from Aspect rather than an answer from one of the rabble of parent supporters of Aspect, but I guess it wasn’t all that clear because a parent replied:
Let me tell you luv that when a child is diagnosed at age 2 on the spectrum, the family is the key because without the family living, breathing and understanding autism inside out there is no way they can help that child.
There is so much nope in that statement. Firstly, the use of the word “luv” is kinda condescending. The assumptions that I’m questioning Aspect because I’m not a parent myself is also just a little bit of BS, and most importantly “living, breathing and understanding autism inside out”???? Just, no. So, I replied to her:
Please don’t condescendingly refer to me as “luv” especially when you do not know my circumstances.
As an autistic parent of an autistic child, I very clearly stated that no one is denying that families require some support.
What I asked was who were the primary clients. Supporting families is great and valuable, but if the primary client is intended to be the autistic person, then the focus can’t be mostly on the family.
Finally, if you are not autistic yourself, you are not living autism. Don’t co-opt the lived experience of others. Your experience, if you are not autistic, is living with an autistic person. It’s not the same thing.
Did she leave it at that? Noooo – of course not because it’s completely ok to co-opt our identities. This doesn’t seem to happen nearly as often with any other disability. She replied to insist that she did live autism. I replied to restate that she didn’t unless she was also autistic, and that’s when this humdinger of a statement was made by her:
Actually I disagree because in order to assist my son I have had to become a little autistic myself so I can know how his brain functions.
They left her comment dangling there until other Autistic people commented in support of me (for which I am truly grateful), and then, of course, they deleted the entire thread because we can’t have Autistic people defending themselves on a Facebook page of an organisation that is intended to support Autistic people. Of course, we can’t have that now.
Parents: You don’t live autism if you are not autistic yourself.
You live with someone who lives autism. There is a difference in the lived experience.
Hopefully, during your experience of living with an Autistic person, you practice empathy and you accommodate the Autistic person in your life by listening to them (in whatever form of communication they choose to use) in order to develop an understanding of their needs. Using that information, you can adjust the way that you communicate and change the way you do things so that you can accommodate their needs. This does not give you autism though, and it does not give you lived experience of being autistic.
Please stop claiming that you know what it’s like. You don’t, and you can’t unless you actually experience the world in the way our brains enable us to experience the world. Of course, it is entirely possible that you may be Autistic and be a parent, but unless you are, you don’t live it.
I have written a follow up post to explain how this post is not as divisive as many people seem to have concluded that it is. You can read that here.