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double empathy problem (Milton 2012). He recognized that when you put two autistic people together, autistic people no longer experience the same cognitive empathy difficulties.
While the medical model of disability focuses on fixing and curing people, the social model of disability focuses more on accommodations and accessibility.
My mind thinks of the neurodiversity paradigm as another model, but in reality it’s more like an expansion of the social model. Along with accommodations and services, this paradigm focuses on respect for all people, regardless of neurotype. It argues that there is no perfect brain.
autism. The neurodiversity movement values autistic people as they are, without trying to fix them. All people are valuable and should be included. They need support, access to services, and equitable opportunities.
People labeled as “high functioning” are those who can contribute to capitalism. They can usually speak, can conform to our society’s acceptable standards, and are allowed to achieve limited power. Those labeled as “low functioning” do not contribute to capitalism and are deprived of power and autonomy.
The Access is Love project (DIS 2021), led by Alice Wong, Mia Mingus, and Sandy Ho, describes access as a collective responsibility. Access and inclusion are a commitment to disabled people, not a checklist.
Interventions would be based on helping the child find balance within their physical, emotional, intellectual, and spiritual well-being. Each area of need would be supported, with consideration for the whole child, to ensure they aren’t sacrificing one aspect of health for another. The child would be centered and consulted.
Consider an analogy to a traffic intersection, coming and going in all four directions. Discrimination, like traffic through an intersection, may flow in one direction, and it may flow in another. If an accident happens in an intersection, it can be caused by cars traveling from
any number of directions and, sometimes, from all of them. (Crenshaw 1989)
Equity combats the idea that we all have the same values and priorities, and demands that we each have access to services that we have determined are important to us. Equity means considering the value systems and needs of the people being served while planning services and systems. Equity means we stop pushing mainstream priorities on everyone, disregarding self-determination.
Predominant culture demands we strive to be “as independent as possible,” whereas many of us view “self-determination, with support” as the goal. We live in an interdependent society, and it’s okay for disabled people to need support in order to live their best, and most integrated, lives.
I’ve found that when they are able to make decisions for themselves, with support and guidance, they are happiest and most successful. I’m a different parent for each of my children. We each have different relationships, and those relationships have changed as my children have grown. They need different things from me, and I take seriously my responsibility to become the parent they need, while recognizing I haven’t always been the parent they needed. I feel so much gratitude that I get to be their parent, and so much regret for all of the times I got it wrong.
For those labelled high functioning, it can be incredibly difficult to get external support once diagnosed… High functioning is not how an autistic person experiences being autistic. It’s how society experiences the autistic person… While ‘high functioning’ is used to presume competence, ‘low functioning’ is often used to deny autonomy… Autistic people in this cohort are often exposed to abusive therapies, such as Applied Behavioural Analysis (ABA), to try to ‘normalise’ their behaviours. (Williams 2019)
All autistic life has value. Our value is based on our humanity, not what we contribute to capitalism. Learn our language and support our work to dismantle this ableism known as Aspie supremacy.
What people recognize as severe autism is typically an autistic person who has co-occurring conditions, such as apraxia or movement differences.
Specifically, they want a cure for severe or low-functioning autism, and they want those they deem to be high functioning to just stop pretending they’re disabled. And that’s why divide and conquer can’t work. Every autistic person, no matter their co-occurring conditions, deserves to be accommodated, deserves to be supported, deserves to be valued. Period.
I’m disabled. And I need that language in order to access support, services, and disability accommodations.
As I mentioned in Chapter Five, autism is not a behavioral diagnosis. It’s a neurodevelopmental diagnosis, which means it stems from within a person’s nervous system. Autism isn’t “a thing” that is separate from the person, like a freckle. It’s all-encompassing. It’s a way of being. Our children think autistically, feel autistically, live autistically.
When children are in less pain they’re able to focus more on their native strengths. They may stim less and communicate more, just like any other person who’s in less pain (Agony Autie 2018).
I’ve noticed that my own children show progress in big leaps as opposed to small steps. It seems like they process everything in their head before they decide to give it a try. I’ve learned that this type of development is common with neurodivergent kids.
This type of restriction—prohibiting parents from being paid as caregivers—is rooted in colonial-capitalism, and is a prime example of how systems aren’t designed to support disabled people and their families.
If it takes a village to raise a child, it takes an intentionally inclusive village to raise a disabled child.
How many times have you heard or said “Make better choices” to a child? What if they couldn’t make a better choice? What if they were doing the best they could at the time and in those particular circumstances?
Behaviorism can be effective in shaping outward behavior, and we use it every day. For instance, we ignore people when they do things we don’t like. But remember, autism is not a behavioral disability. It’s a neurodevelopmental diagnosis that is determined based on observable behaviors. The presence or absence of those observable behaviors at any given time do not define whether or not a person is or isn’t autistic. Autism is an integral part of our entire being.
Behavior is communication.
Behaviorism actually stifles communication because, for nonspeaking autistic children, the only communication that child has is behavior.
This puts autistics at a greater risk of physical, emotional, and sexual abuse throughout their lives. Many autistic people second-guess everything they say and do, because they have been taught their entire lives that the natural way they engage with the people and world around them is wrong.
Real inclusion takes work. It takes intent. It takes investment. Making schools accessible to all children requires teacher training, more staff, restructuring school environments. As Jules says, parents have privilege, and we can use that privilege to make school environments more supportive for our children. Only when our schools are truly inclusive will we see that same type of inclusion in our communities.
These practices need to end, and the people responsible for our care need to ensure that they are meeting our underlying needs, rather than punishing us for having unmet needs.
What are your passions? What are your strengths? What do you not like to do or talk about? Flow charts and bubble maps can be helpful in working out which topics are worth spending energy on, and which aren’t as pertinent.
Self-care isn’t only bubble baths and facial masks. Self-care is also recognizing when your emotional health, physical health, and overall wellness needs attention. Self-care can include therapy and finding balance in your life. Self-care is loving yourself enough to protect yourself from harmful situations. Self-care is walking away from things that are bringing you more pain than joy. Self-care is learning about sensory and emotional regulation. Self-care is working on addressing your own trauma to develop healthy coping mechanisms.
Setting and enforcing boundaries is an important part of self-preservation. It sets limits to interpersonal relationships. It is a means to exert self-control, defining what we will and won’t engage in, and communicating those decisions with others. Boundaries are often misunderstood. Sometimes, people misuse the word “boundaries” when they are trying to control the actions of others:
Sometimes, autism advocacy is a form of self-harm. Walk away, take leave, unfollow, take care of you until you’re ready to re-engage.
By expecting them to smile, I was inadvertently encouraging them to mask for me. Masking is suppressing your natural way of being and acting in a way that someone else expects.
The disability justice perspective is the idea that we fight for the most marginalized in our community led by the
most marginalized in our community. The concept is not that different from triage in a medical setting—we help the most injured first to avoid the worst possible outcome.
