about autism parents. How do you feel
about this section of the community? Do
you feel as if they speak over you? Do
you find the term ‘autism parent’ rude or offensive?
Another massive, complex topic, and one I'll explore in more depth when I have more time, with links to key articles by Amy Sequenzia and in The Establishment but I'll use today's prompt as an introduction.
I'm not sure what the autistic community (autistic, rather than autism, community) as a whole feels about whether "autism parent" is an offensive term or not; that's something I'll have to look into.
I think there's a difference between autism parents and Autism (Warrior) Parents/Martyr Parents (MPs). Note the use of capitalisation. I've mentioned Autism Warrior Parents (AWPs) in previous posts and they are the ones that cause a lot of upset, anger, frustration, hurt and other similar feelings among autistics. (Martyr Parents is another term for AWPs.)
We cannot exclude autism parents from the conversation or the autism community, because they do have valuable input and they can really help in fighting for acceptance, services, support, etc. What upsets and frustrates me is that authorities and service-providers seem to often pay more attention to the parents/carers than actual autistics, and that needs to change. The autism parents who listen to us, who accept us, are very welcome in the community and we value their support, assistance and input. I have a friend with an autistic 12-year-old daughter and she's a good autism parent - she's not able to care for her daughter herself but she's done her best to ensure her daughter has the support and care she needs, accepts her for who she is and meets her where she is (such as using Makaton and BSL), connects with her in a way that her daughter can understand and latch on to, fights for more support if it's needed, and so on.
The problem lies with the AWPs and they are the ones I vehemently dislike. They are self-righteous, superior, arrogant, aggressive, rude, self-obsessed martyrs. They vastly overstep the mark and make their child's autism all about them. Guess what? It's NOT ABOUT YOU. It's about YOUR CHILD. So far I've given them a bit of a wide berth because on the occasions I have encountered them they are truly horrific, and with fibro and ME/CFS I simply don't have the energy (or, it has to be said, the patience or temper!) to deal with them. They're the ones who scream that YOU MUST STOP SAYING "AUTISTIC"; YOU MUST SAY "CHILD WITH AUTISM" (that's a direct quote from one post about Sesame Street's Julia on Facebook, complete with their use of capitals; I got screamed at by multiple AWPs for daring to question this and point out that actual autistics prefer identity-first language). They're the ones who shut down and silence actual autistics. They're the ones who think they know better about the autistic experience than actual autistics. They're the ones who presume incompetence. They're the ones who post in-depth blogs and articles about their child's most intimate care needs, including photos and videos, without that child's consent (they say the child wouldn't understand and/or wouldn't care, but they can't truly be sure and anyway, that is NOT your call to make), all in the name of "realism" - which apparently demolishes the autistic child or person's right to privacy.
(They're also much more likely to push the vaccines-and/or-toxins-cause-autism rubbish, unproven "treatments", harmful "treatments" like MMS, etc.)
They're the ones that accuse us of not really being autistic just because we can type and blog and speak because we are "Not Like MY Child". They speak about us without us. they speak over us and attempt to invalidate our experiences. If we try to say anything that might possibly, potentially be construed as criticism or that doesn't fit into their AWP narrative, they silence us - they scream at us, they attack us, they shut us down, they bully us. They're the ones who talk about us (usually in a negative way, things like we're the reason they can't do XYZ, we make their life so hard, we're so difficult, etc) when we are there in front of them but don't have a problem with it, don't think we might be upset by it, because they assume we can't understand anyway. We are less than human to them.
They are the ones who proclaim "I accept you but not your autism" - sorry, doesn't work that way; you cannot accept one but not the other because our autism is intrinsic to who we are and how we are. Saying this sends a powerful message that you hate the way we are, which ultimately means that you hate us, however much you may claim otherwise. They are the ones who are the reason why, when a parent murders an autistic child, the world at large sympathises with the parent and becomes apologists for them, because according to AWPs, we are nothing but a burden, a tragedy, something to be despised and got rid of. They are the ones who spend all their time and resources "fighting" and "battling" autism, when that time and those resources would be infinitely better used in getting to know your child and meeting them as they are, working with, rather than against, them and improving their life.
You don't get to co-opt your child's identity for your own. You don't get to publish things, especially intimate things like personal care needs, about us without our permission. You don't get to shut us down, silence us or speak over us. You don't get to presume incompetence. You don't get to accuse us of faking our autism or of "not being autistic enough". You don't get to attack us. You don't get to blame us for all your difficulties. You don't get to use us to garner attention, publicity, sympathy or pity - that's exploitative and abusive. You don't get to separate us from our autism. You don't get to be the martyr or the victim. Your voice about the autistic experience does NOT get precedence over the voices of autistic people.
Be an Autism Accepting Parent, not an Autism Warrior Parent.