Parents: You don’t live autism

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.

What??? I asked Aspect to remove her comment based on the fact that is misleading to imply that autism is contagious. Did they do that? Nope. They invited both the parent and I to email them our perspectives so that they could understand them better. Why do I need to email them my perspective? My perspective was clearly articulated not once, but three times!

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.

2 thoughts on “Parents: You don’t live autism”

  1. Hello,

    I am a parent of an autistic child and an aunt to 3 autistic children. I am completely taken aback that a parent has posted such a uneducated reply to your very clear and reasonable question. I have read many books, articles, attended courses, listened to experiences and spoken to specialists about autism as I want to understand it as much as possible to support, enhance and enjoy life with my family but at no point would I ever feel that I had become autistic because of this learning and close proximity. Neither would I feel better able to speak about autism than somebody with it or speak for every autistic person’s perspective because of my own limited experiences. What a strange point of view. People are too quick to look for similarities in their personality to so-called autism traits and label them self as ‘on the spectrum’. Parents and carers who regularly throw themselves ‘pity parties’ drive me mad too.

    I feel Aspect have handled this situation very poorly and should have supported you better, shame on them.

    I’ve only found your blogs today and have really enjoyed reading them although it’s so disappointing to read that you are facing rejection and harsh treatment for being autistic. I long for the days of acceptance and celebration. Take care.

  2. Yeah, I always raise an eyebrow when people allocate the focus from their autistic children to themselves. Not saying it isn’t tough to raise an autistic child (or any child, for that matter), but it kind of gives me pause. I mean, you have to deal with the embarrassment of having your twelve-year-old freak out at the store, yeah, but ze has to deal with that embarrassment as well as shame and self-reproach, along with the searing lights and disorienting sounds and the building-up of desperation and panic. Not quite the same thing.

    Also, I admire you for being an autistic parent with an autistic child. I have autism and hope to be a parent one day, myself.

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