high support needs – Autism: Explorations

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In addition to being ableist and grading against a neurotypical standard (which is its own, major issue), functioning levels attempt to reduce all the complex information about a persons abilities and needs over time and across a variety of contexts down to one dimension. That’s always going to be inappropriate dimensionality reduction, simplifying what we know to the point that it’s useless. Talking about low, medium, or high support needs isn’t going to fix this problem. Neither will talking about low vs. high masking as if either of those means a single thing. Those still use a single dimension, and you can’t shove enough information about what those support needs actually are, or what the specific effects of masking are into a single dimension for it to ever work.

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For many of us, engaging with an amorphous diagnostic group-think entity is the first step towards getting a solid conceptual foothold in who we are […] It’s also a first step towards securing a place in society. Especially societies which have low tolerance for divergence […]

It’s a slippery slope, isn’t it? […] You want it, pursue it, and then can be used against you. But if you don’t have it, you run the risk of getting stamped on. […]

Ultimately, it’s really up to each of us, how we engage with our identities, how we understand ourselves. How we navigate our social worlds.

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It would be great if labels like autism weren’t necessary.

It would be great if ableism didn’t exist, but that’s one hell of a hypothetical.

Ableism is an extreme and far-reaching problem that can’t be solved without labeling the specific disabilities of the people being harmed.

In a world where most people speak with their mouths and assume everyone else does too, I need the autism label to explain why typing is better. In a world of sensory assault, where “I don’t want to” is not a sufficient excuse, I need the autism label to justify my self-protection.

Acceptance

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Major concept: Neurodiversity

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Kindness without respect is worthless

Erin Human

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Just like you shouldn’t force people to be proud of their autism, you shouldn’t force people to be ashamed of it either.

2Pacula_Was_Taken

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Now if we could only get the rest of the world to calm down and not stereotype [my son], we might get some serious quality of life improvements and more stress-free community inclusion going forward.

Mrs. Kerima Çevik

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Acceptance is not
giving up […]
doing nothing […]
what happens after you’ve fixed someone to your liking
[or] throwing away all rules, manners, education, skills and coping strategies.

Cynthia Kim

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Neurodiversity isn’t about pretending that autism, other developmental disabilities and psychiatric disabilities are all sunshine and rainbows. It’s about believing that we should be able to live our lives on our own terms and that our community should continue to exist, and doing whatever we can to make sure that happens.

Shain M. Neumeier

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Most parents are scared, insecure, unsupported and exhausted. […]
As autistic adults, we say that we are the real experts on autism by virtue of our lived experience. By the same logic, you can’t claim to be an expert on parenting if you’re not a parent. […]
Parents, in turn, don’t always listen to autistic adults as much as they should and thereby miss out on some very valuable insights.

Maura Campbell

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Growing up autistic in a world made for non-autistic minds is difficult. Then again, so is growing up lefty in a world made for righties.
It’s not better or worse – just different. Families with lefties, women, people of color, LGBQT, and kids with disabilities love each other exactly as they are and wouldn’t trade them for a child who has an easier path ahead. Raising a child on the autism spectrum has its challenges, but so does raising any child. All of us will have our obstacles.

Ashia Ray

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I come down, on the whole, firmly on the side of the self-advocates; I think it is critical to listen carefully to what any marginalized community says about their own experiences.
At the same time, I think they sometimes forget that many parents do not have the tools or the ability to build a fully autism-friendly life for their children, and that some compromises simply have to be made (as much as I hate them) at this point, in order for an autistic child to be integrated into our terribly narrow-minded society. […]

Restless Hands

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When parents like me talk about our kids with disabilities and intense support needs, we have to be thoughtful. We need to make it quite clear that our kids are much-loved and very awesome human beings. We should never, ever state or imply that any challenges we face as a parent are our children’s fault. We need to handle their privacy with delicacy. And we shouldn’t accidentally enable disrespect towards children who are already too-frequent magnets for morbid fascination, and pity.
But we do need to talk, because our parenting gig is not like other parenting gigs. It just isn’t. We, our kids, and our families need different supports than families whose kids don’t have disabilities, and we often need a lot of them. Sometimes we’re not always sure where to find those supports, or even aware of available supports; sometimes we’re ashamed to pursue the supports we and our kids need. And not having the supports we need for the best quality of life possible can lead to unnecessary hardship for everyone involved.
So, let’s talk about what parents like us need, and especially how to get what we need. But first, I need to be forthright on one matter: In no way does lack of services excuse harming our children. Ever. […]

Shannon Des Roches Rosa

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You are right; we cannot make your autistic loved one non-disabled. But we can help make a future that has room for people like your child in it, complete with the rights, the access, and the supports they need to live their fullest life. We think that that is doable. We think that that is right.
Yes, autistic lives are different. Yes, they are often hard. No, they will not look like the lives of non-disabled people.
We just don’t think that that makes disabled lives wrong.

Emily Paige Ballou

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For seven years, we’ve been drowning. And since autism is synonymous with all things good, acceptable, and neurodiverse in this world, and since all kids with autism are simply wired differently, and since doctors who say otherwise are quacks, and since parents who think otherwise are in denial or worse, we’ve been forced to remain silent about our pain and our reality.
For seven years, the autism label slapped on my son’s medical condition has given doctors a reason to dismiss his suffering, friends a reason to be angered by our failure to show up at important events, and family members a reason to question our sanity and criticize our parenting skills.
My son’s autism label gave us a reason to just shut up. Even in our darkest moments, we reported our family was ‘fine, thanks.’ We trudged forward, shamed into silence. To say we did not accept our son’s assignment to autism as his destiny, that we were searching for a Get Out of Autism Jail Free card, would have been perceived in the same manner as if we were to say we did not love our son. That he was intrinsically bad, and wrong, and not what we had hoped for.

Ashlyn Washington

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