Let’s talk about what inclusion is, & what it isn’t—from my perspective as the parent of an exuberant, high-support, much-loved autistic young adult who takes up a lot of space wherever he goes—& so has few real-world participation opportunities. A thread!
#neurodiversity 1/
#neurodiversity 1/
Inclusion is a real and basic human right, and simply means my autistic son has the right to be out and about in the world, as opposed to being segregated from or hidden away, as used to be the default for the generations of high-support autistic people before him. 2/
Inclusion does NOT mean forcing autistic and disabled people to be in places they don't want to be, which aren't set up for or accessible to them, or in which they aren't welcome. 3/
But even when we embrace inclusion as the baseline for autism and disability rights, my son still doesn't get to do all the things—but that's because of accessibility barriers, not because inclusion itself is a flawed concept. (More on accessibility:
ianology.wordpress.com/2013/09/06/dee…) 4/
ianology.wordpress.com/2013/09/06/dee…) 4/
Even though The Americans with Disabilities Act (ADA) installed accessibility as the law of our land in 1990, in practice enforcement is slippery (and imperiled, so please call your members of Congress, @autselfadvocacy has a script: …dvocacy-network.dm.networkforgood.com/emails/asan-di…) 5/
That gap between ADA law and universal implementation means angry disabled people and their loved ones are within our rights to be pissed about how few public facilities like pools are legitimately accessible: the situation really is completely f***ing frustrating and unfair. 6/
And so the battle must continue, on all accessibility fronts, so that autistic and disabled people like my son—who is now an adult, and no longer a cute kid who gets cut a little bit of slack—get to have All The Opportunities they deserve. 7/
All these barriers to accessibility and accommodations mean it's not reasonable, at this time, to expect my high-support autistic son to be able to go everywhere, even places that openly want to include him. 8/
Even though my own son has so worked so hard on his coping skills and boundaries, and even before the current pandemic, I still didn't take him to places that I know are too taxing for him, like loud restaurants, crowded public festivals, or quiet concerts or ceremonies. 9/
Sometimes accommodating my autistic son means missing important family events (I talk about that here: squidalicious.com/2017/06/someti…).
And while those situations can be bittersweet, they are also part of understanding what reasonable accommodations for our dude look like. 10/
And while those situations can be bittersweet, they are also part of understanding what reasonable accommodations for our dude look like. 10/
Not everybody understands our autistic son's reality, which means we are constantly having to educate the people in our lives, and hope they will at least try to understand that our openly, obviously disabled dude is usually doing the very best he can. 11/
We can help by sharing information such as why autistic meltdowns happen; why autistic "behaviors" usually have reasonable causes; why stimming can be joyful and therapeutic and not a behavior to suppress (as @JoyChaos shows: ) 12/
We can also talk about why grabbing food is never OK, but sometimes impulse control is a thing despite knowing better—so our friends, family, and social media network will have realistic and reasonable expectations about what autistic people can and cannot tolerate. 13/
Inclusion isn't going to get any easier if we let other people demand that our autistic people only behave like non-autistic people.
14/
14/
The more we're out and about as a family with an autistic member, the more we're visible and cheerfully unapologetic about it, the more we show the world what inclusion looks like on my son's terms, the more other people will get what inclusion actually means. 15/
Advocating for true inclusion includes (for me, at least) minimal patience with people who are uncool about my son being in places he has every right to be, when our dude is not violating anyone else's space nor causing a disturbance. *cough* #FuckAbleism *cough*
16/
16/
It's also OK, on tough days, to retreat inside a circle of comfort while we figure out how to do better by my guy next time. For me, these comfort circles mean hanging with people and going places that both want and understand how to accommodate my son. 17/
His safety and comfort circles may not always be as big as I wish they were, but that's fine as long as they contain people who stick by us even when it's not easy. Who understand that my son is the greatest dude ever, but also that some scenarios don't work for him. 18/
I am grateful for our small local grocery store with the cashier who has witnessed my son and I need to leave suddenly on more than one occasion, yet who still teases our dude about his impressive beard. 19/
I am grateful when (in pre-pandemic days) visiting friends don't mind that Leo considers our guest room bathroom HIS bathroom. I am grateful when they understand that when we accompany them to local tourist destinations, My son and I might cleave off a little bit. Or a lot. 20/
What helps me when I get frustrated about the smallness of my son's circles is to remember that his generation has so many more (pre-pandemic) opportunities than autistic people just one generation older: sensory friendly movie showings, museum times, and adaptive surfing. 21/
While I adore so many of my fellow parents of autistic kids—and have learned so much from them, I have learned so much more from autistic and disabled adults about how to help my son find his way in the world, including what reasonable inclusion looks like for him. 22/
And if we’re doing to do inclusion for real (not the slippery faux-inclusion imposed by disability outsiders), We need to think about inclusion the same way we think about feminism, or fighting racism: as centering basic human rights, and as the default right thing to do. 23/23
