Thread by @shannonrosa

My #Autistic Son Needs 24/7 Support. And That's OK.
We have a good life, because we stopped buying into mainstream notions about what happy families look like.

This is going to be a thread.

#neurodiversity #autism 1/

I’m the parent of a high-support autistic teenager, which means some people would say he “has severe autism.” By our own parameters, my family is a happy and well-adjusted crew. But before you make assumptions about me being a positivity unicorn… 2/

…or that my son must be only “mildly” #autistic, please know that my beloved dude is a mostly non-speaking ball of# autistic energy who requires 24/7 support. 3/

No matter how intensive your child’s disability is, if you focus on accepting them for who they are and understanding how they experience the world, you will all be happier. If you don’t believe me, well, research says so, too: journals.sagepub.com/doi/abs/10.117… 4/

Why aren’t more parents-to-be aware of what we should realistically expect when we’re expecting? I blame our aspirational culture, and the way it rarely bothers to address disability except as feel-good meme fodder, or as unfairly having a “perfect” life snatched away. 5/

I resent the way our kids and our families get viewed with voyeuristic pity. I have lost patience with the expectation of Instagram-ready family lives, since those are an exception, no matter what traits our kids have, & despite how friends’ lives are framed on social media. 6/

When we parents don’t have access to disability-informed resources and instead internalize unhelpful mainstream notions about autism/disability, then we end up like I did after my son’s autism diagnosis: in a rage that not only made me susceptible to anti-vax disinformation… 7/

…but had me viewing my little #autistic guy as some sort of changeling, even though his most prominent trait is having my husband’s sweet personality rather than my prickly one. (You can read more about my deprogramming from autism disinfo in the book #NeuroTribes, btw). 8/

I’m not proud about failing my son (& am also now a vaccine advocate), but I will say that reliable autism & disability information was even harder to find fifteen years ago.

That’s why I’m pleading with you to not let this kind of derailment happen to you, or to your child. 9/

Instead, I want parents to learn what disability advocates taught me, & what I wish I had known before my son’s diagnosis: that autistic & disabled people have always been & likely will always be part of our societies, & are valuable human beings who deserve unqualified love. /10

…and that our disabled kids also deserve acceptance, and access to supports. That instead of trying to make our kids blend in or minimize their differences, we should prioritize treating our kids with affection and compassion, and focus on what it means for them to be happy. 11/

I want other parents of autistic kids to recognize that their lives can be so much easier through understanding the importance of #neurodiversity: that people with brains that work differently have rights & a role in society, even when they need tremendous amounts of support. /12

I want other parents like me to understand that autism is mostly genetic, and that focusing on causation rather than ours kids’ needs is a waste of time and so much money. SO. MUCH. MONEY. /13

I want other parents to understand that even the most distressing self-injury or aggression usually has a traceable source, such as being frustrated, overwhelmed, or in pain but unable to convey that distress effectively because of age or disability: thinkingautismguide.com/2016/08/when-a… /14

I want parents to learn about autistic commonalities: that autistic people share recognizable traits, similar to genetically-related family members. That they may have complicated motor, & sensory & processing things going on, regardless of intellectual/communication ability. /15

That they should have a functional communication system as early as possible, whatever that looks like.

Once again: ALL AUTISTIC PEOPLE SHOULD HAVE A FUNCTIONAL COMMUNICATION SYSTEM AS EARLY AS POSSIBLE, WHATEVER THAT LOOKS LIKE.

#neurodiversity

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I want parents let their autistic kids like what they like as long as they’re not hurting anyone, and appreciate the joy of autistic passions, even if we parents don’t share or understand specific pursuits. /17

I want parents of autistic kids to respect their child's need to have a fidget on hand to self-sooth, and try to abide when their child is unable to get through a transition without a specific routine. /18

Ideally, all this disability-informed knowledge will lead to parents insisting on real inclusion at our schools. I don’t mean throwing all the kids together in an unregulated Thunderdome-style scenario… /19

But rather including all kids in the school community, and not segregating disabled students in a random satellite classroom.

(Here is an article on what real inclusion looks like for students with high support needs, from @think_inclusive: thinkingautismguide.com/2019/12/an-inc…) /20

I also want an end to the faux inclusivity of gold stars for treating disabled peers the way we are *supposed* to treat other humans. If kids have always interacted with fellow students as people, then getting rewarded for objectifying them should feel gross & inappropriate. /21

(And no, I don’t think true inclusion will solve all of our autistic and disabled children’s social difficulties since our youngest humans are unpredictable and slightly feral, but it will definitely help.) /22

Reshaping parental attitudes this way isn’t going to fix everything for our families, because the system really is stacked against us. Therapeutic, medical, respite & other supports services are patchy, hard to access, and underfunded in most areas, & non-existent in others. /23

…but disability and autistic advocates at organizations like The Autistic Self Advocacy Network @autselfadvocacy (autisticadvocacy.org) are working on changing these services and policies for the better, and I recommend supporting those efforts: autisticadvocacy.org/policy/ /24

@autselfadvocacy But where else can parents access disability-informed resources? Unfortunately, they aren’t easy to track down, because supporting the #autistic people who are already here is not a priority for most mainstream orgs, due to those sticky cultural biases I mentioned before. /25

@autselfadvocacy …so another thing we parents can do to change the world for us and our kids is to insist that disability and autism organizations hire autistic and disabled people for real positions of influence, and not merely as representation tokens or for PR feels. /26

@autselfadvocacy As for that biased culture, I’m seeing small shifts. Comedian @amyschumer (tinyurl.com/sk9r9st), and the CW series Jane The Virgin (tinyurl.com/vak8ocd) both recently took on the topic of parenting kids with disabilities—and both affirmed acceptance! /27

@autselfadvocacy @amyschumer And while I don’t agree with everything politician and autism parent @AndrewYang says, I appreciate his proclamation that disability is commonplace and “Atypical is the new normal.” There is hope.
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If nothing else, I want us to focus on what we can do NOW, as individuals, to make our #autistic & disabled kids’ lives (& ours!) easier on a day-to-day basis: treating them with acceptance and love, which is what all kids deserve.

Full article: buzzfeed.com/shannonrosa/my…

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