A year ago I did a crash landing into the world of bloggers, all of whom were Autistic. I had been looking for them for years, but suddenly, or so it seemed to me, I found not one, not two, but dozens and dozens of blogs written by Autistic men and women in their 20’s, 30’s, 40’s and 50’s. It was surreal because these people were writing about their lives, giving glimpses into what it is like to grow up and live in a world and society that does not “see” you, yet talks about you and perpetuates misinformation about you with little interest in verifying whether their interpretation is in fact correct.
Pretty quickly after my crash landing I found this ‘post‘ from the blog Radical Neurodivergence Speaking about attending an Autism conference where the keynote speaker said, “When one family member has autism, the whole family has autism”. The blogger writes, “My autism is not about my parents or my siblings or my non autistic friends and extended family. It is my neurology. It is not theirs. No matter how much they listen to me, how much they try to understand, it is not about them. It’s a lot easier to protect the martyr mentality when you insist it’s about you, but that’s just not how it is. As long as it’s considered to be our parents’ thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that’s not right. It isn’t even wrong. It’s so backwards there is not yet an adjective for it.”
Now remember, I was at the very beginning of finding actual people who were talking about their own neurology as opposed to ‘experts’ talking about their interpretation or ideas about a neurology they did not have. I had to reread that paragraph before I could go on. “As long as it’s considered to be our parents’ thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that’s not right. It isn’t even wrong. It’s so backwards there is not yet an adjective for it.”
I had to get up and walk around because this concept, this simple, and now it was dawning on me, pretty obvious idea was not something I’d really considered before. I had to sit down and think about this. “As long as it’s considered to be our parents’ thing, though, the system will continue to be broken.” And then I realized something. I didn’t like what I realized, but I couldn’t tamp it down. It kept springing back up into the forefront of my mind. I realized by making autism and my daughter’s neurology about me, I would continue to feel sad and victimized by “it”. “It” was this terrible thing that had happened to us. “It” being the operative word. “It” wasn’t my daughter. “It” was what we fought against. And by then adding a judgment to my daughter’s neurology (it’s bad) I was limiting it even more and adding a layer of horror to it. Without meaning to I was making things much, much worse for all of us. Without knowing it, I was doing the opposite of accommodating “it” I was co-opting it and making it all about ME.
Now before people start saying things like – wait a second, autism DOES affect the whole family, or, but the siblings DO feel x,y and z – I need to state the obvious – of course an autism diagnosis affects the whole family, but affecting the family is different from saying, “When one family member has autism, the whole family has autism.” That simply is not true. The whole family does not “have” autism. This is not FACT. Insisting that it is fact when it is not, does not serve any of us, but mostly it is a massive disservice to my daughter and all who are Autistic.
When my father had his horseback riding accident I was nine years old. It completely affected my outlook on life. At the age of nine I considered death, hospitals, doctors, what it means to be physically disabled, in a way that my same age peers were probably not contemplating. Yet I was not suddenly “disabled” because of his accident. None would have suggested that. I might have been helped had I seen a therapist to work through some of my fears and later phobias that resulted from his accident, but that is very different from co-opting his experience. When my father was in a wheel chair, the entire family did not suddenly lose the use of their legs. My father needed accommodation, ramps needed to be built inside our house where there were stairs, he needed assistance getting into and out of the swimming pool, but the rest of us continued to walk around, ride our bikes, play with our friends and live our lives. Did my father’s accident affect me, well of course it did, but never would anyone have suggested that because of my father’s disability the entire family was therefore disabled.
“We keep having to fight for ownership of our own experiences, and that’s not right.”
Ownership.
We all need and want to be heard. Parents want their experiences to be heard and acknowledged. Siblings want their experiences heard and acknowledged. But that should not be at the cost of our Autistic children. ALL people deserve to have the accommodations they need. Just as my father required ramps built in our house, my daughter needs support to communicate without the added pressure or guilt that she is causing the rest of us hardship. We need to reframe the conversation.
More terrific posts from Radical Neurodivergence Speaking:
Autism and child abuse: Both for April. Oh IRONY.
Emma's Hope Book 
This is so apt it made me chuckle with the mirth/amusement that can only come from really good points made with right-on analogies. You go girl.
(((Ib))) Thanks for nudging me along so I might come to these kinds of realizations.
Hh
Just great!!! This is how far you’ve come… I can’t wait to see how much I grow in 3 years time! ((hugs))
(((Renee))) I think you’ve started out already quite a few steps ahead of me… 🙂
Some of the things that are said about autism…the absurdity of the double standards and uncalled-for alarmism become apparent when you substitute any other disability, condition, or identity into the sentence.
“When one family member has homosexuality, the whole family has homosexuality.”
Like, it’s totally obvious how that doesn’t work.
*nods* ((((Chavisory))))
❤
(((Savannah)))
Did you find the reason you co-opted your daughter’s diagnosis is because that’s what everyone surrounding you (when you first got the diagnosis) was telling you was the thing to do? That is what my experience was. I feel, the best thing a parent of a newly diagnosed child could have is a 1 on 1 conversation with an autistic adult because that will give them the real and useful information and they wouldn’t have so much wasted time in those early years following the experts that don’t really know. Every autistic child should have an autistic adult mentor. I’m sure there are enough out there who would be willing, the problem isn’t with the autistic adults not wanting to help, it’s the establishment not allowing them to because the establishment believes it has all the autism answers, which is just completely ludicrous.Of course, this is just my opinion, but parents need to know there is life, vibrant, full and happy life, after diagnosis.
No! Or at least I don’t think that was why, though now I’m thinking about it and maybe there’s more overlap than I thought. Looking back when we were told we were terrified. I mean the kind of fear you feel during a horrible nightmare when you’re trying to scream, but no noise comes out of your mouth and then you wake up and you’re just so relieved it wasn’t real, only we knew it wasn’t a dream. It was that kind of terror. And most of the people we spoke seemed so convinced that ABA was the one and only way to “help” so when it so clearly wasn’t helping and in fact made all of our lives considerably worse, I began to feel seriously depressed and with that depression came a feeling of victimization. I think it also played into many other feelings, but this is the reader’s digest version…
As far as our kids having older Autistic role models, I couldn’t agree more and I would only add that I really needed an Autistic “mentor”/ friend as well to help me help my daughter better. I’ve been really fortunate in that I have a number of people, a whole group actually, who I’m close to and feel I can reach out to when I feel confused or conflicted. All of us should have that.
yes & no.
while that might be great for the parents, it’s not so great for us. we’re people, not self narrating zoo exhibits and we should not be available on prescription.
also, there probably aren’t enough. diagnostic rates are much higher now so most Autistic adults wouldn’t even know that they were Autistic, we might not all feel comfortable talking to parents, and many parents won’t be ready to hear us at first anyway.
that being said, I just got an application form for the NAS befriending scheme, so I guess I’ll be doing something like that soon.
Ah Jude. Yes. This is such a good point and I really appreciate you bringing it up. The only way this idea could work would be if it was voluntary and self appointed. Also there has to be, like any relationship, a mutual interest in such an arrangement. This cannot ever be something that is expected of another. No one should feel they must or even should help another person. And certainly the past has made many not want to have anything to do with parents who felt they could ask personal questions and treated the other person as though they existed for the sole purpose of “helping” them help their child.
You have articulated so well the thoughts I’ve been having recently but been unable to express yet. I am just so grateful for the input these amazing new friends are having into my life, even though from afar. I so wish I could meet them in person, and that my kids could meet them, but the internet and some great blogs will have to suffice! I love the quote of K’s you’ve included. And I love the honesty you’ve shown in including your initial reaction. It’s really confronting at times realising how much better I could be doing things, then I remind myself that I am always going to be learning on this journey. Thanks for sharing this post Ariane.
Michelle
Aw… Michelle, it’s been so nice getting to know you! Thanks for this. I feel the same. Just incredibly grateful. ❤
Beautifully explained.