The ABCs of Autism Acceptance

by Sparrow Rose Jones

messages of despair are about me and people like me. I hear the terrible things that are said about autism and those of us who are Autistic and I have to wonder if the people saying those things believe we don’t have feelings. Or maybe they think we’re too far gone to ever hear what they’re saying about us. But they are wrong. We hear and understand and hurt. And not just Autistic adults, but children too. We hear what is said about us, and it is devastating. So I wanted to

presume competence, do not try to fix us for we are not broken, help us to live the fullest and most fulfilling lives we can, always remember to include us as the main stakeholders in the decisions that are made about us and our future.

nothing about us without us.

You will always be Autistic, and that is a wonderful thing. Embrace who you are and work to become the best you can be. The world needs your voice—whether it comes from your mouth, your hands, or someplace else entirely. The world needs your opinions and dreams. But also know that your value does not lie in how useful you are to the world. The world does need you, but that is not what makes you a worthwhile and precious human being. You have inherent value because you are you. There was never a person like you in this world before and there will never be another identical to you again. This is your time on this earth and I want you to always remember that you belong here and that you are a vital piece of the great mystery.

By now, most people are aware that there is “a thing called autism” but, in my experience, most people are not very aware of what “that autism thing” actually is. So I do, at least partially, agree with the people who say we still need more awareness.

Beneath autism, there is more autism—it’s autism all the way to the core. Autistic children do not “go into remission,” we

It is also important to remember that Autistic adults quite often do not resemble the Autistic children they once were—we grow and develop all our lives—but Autistic adults are still every bit as Autistic as when we were children, no matter how many coping skills are learned, no matter how “indistinguishable from our peers” we might seem to have become.

Autism Speaks is one of the few organizations that is widely hated by the population it was established to serve. As

John Elder Robison, said when he resigned, “No one says the Cancer Society does not speak for them. No one describes the Cystic Fibrosis Foundation as an evil organization. All that and more is said of Autism Speaks every day. I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.”

Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses to become the best people we can be, not trying to transform us into someone we are not. Autism acceptance is remembering always that Autistic people are listening, including those who might appear not to be, and choosing to speak of autism and Autistic people in ways that presume competence and communicate value.

“Autistic people are not viewed as able beings, this view makes us suffer.” – Emma Zurcher-Long, Autistic blogger at Emma’s Hope Book.

Even worse, if you suggest your child is bringing the bullying on themselves, don’t expect your child to feel safe continuing to tell you what is going on at school. If your child feels that you are blaming them, you have shut the door on communication between the two of you and that leaves your child even more vulnerable to being hurt by bullies.

Since I was not as subtle as my more mature classmates, I was always the one who got caught misbehaving. I was always the one blamed for bad behavior. Quite often, I got punished for defending myself while the bullies were treated as if they were the victims.

“Presume competence” means, as Dr. Douglas Biklen has explained,7 “approach each child as wanting to be fully included, wanting acceptance and appreciation, wanting to learn, wanting to be heard, wanting to contribute.” It doesn’t mean to assume that a person faces no barriers, and it is never an excuse for withholding supports and accommodations. “Presume competence” most definitely is not a call for blaming disabled people for struggling with those barriers.

Autistic people do have feelings, that we do have empathy, even if we don’t always express it in ways that non-autistic people are capable of understanding, that we do have value, and that we are full members of the human race, deserving of dignity and accommodation.

Autistic children and adults are at greater risk of ending up in the criminal justice system than the general population. Sixty percent of American prisoners are People of Color (twice the percentage of People of Color found in the general population).11 When you combine the higher risk of imprisonment of Autistic people with the higher risk of imprisonment of People of Color,

the British report from the National Autistic Society (NAS), “You Need to Know” cites a study that found that 71% of Autistic children had one mental health issue and 40% had two or more.15 One alarming study found Autistic children had 28 times as much suicidal ideation when compared to non-Autistic children.

Without acceptance and accommodation, becoming aware of someone’s autism just leaves bullies saying, “See? I knew there was something defective about you.”

“You don’t understand. You’re Autistic and having a meltdown. You don’t get social things, so you can’t possibly know what’s really going on here.” That is awareness without acceptance. That is autism being used as a bludgeon against the Autistic. That bully’s “autistic awareness” was even harder on me than if they had known nothing at all of autism. Being aware of my autism only gave them a convenient way to shut me up when I tried to stand up for someone else they were hurting.

This single study has been cited again and again and extrapolated to all Autistic people, not just young children. The thing that is forgotten is that autism is a developmental disability but not an absence of development altogether. Just because 80% of the children tested by Baron-Cohen, Leslie, and Frith could not pass the Sally-Anne Test at that point in their development, it does not follow that they never will or that no other Autistic people will develop theory of mind at some point in their lives. Fewer Autistic teens fail the Sally-Anne Test. Almost all Autistic adults who have means of communication (which is to say, the majority of Autistic adults) are able to easily pass the Sally-Anne test. Theory of mind is not a simple on-off switch but rather a wide range of skills that are developed over time.

Anne Test, with the only motivation being getting the right answer, only 13% passed. But when the children were given the Dot-Midge Test with the motivation being to win a prize, 74% passed—choosing Midge to go first because the child knew that Midge had a false idea of where the toy would be. Neither of these percentages are in line with random chance—they are both far enough away from 50% to make it clear that something is inadequate about the Sally-Anne Test. (Some researchers speculate that the standard “reward” in the Sally-Anne Test, i.e. the social reward of being pleasing to the researchers, is not enough reward for the average Autistic child to be willing to work the problem through sufficiently.) It also becomes clear that there is a whole lot more theory of mind going on in the

check-in with others to explicitly ask what they are feeling. You will find that Autistic people have a tremendous amount of empathy when we understand the emotions around us! You cannot claim we have no empathy when there are no accommodations in place to help us understand the emotional content surrounding us.

cause.) Approximately 10% of the general population has alexithymia, but studies indicate that as many as 85% of Autistic people have some degree of alexithymia and an estimated 50% of us have severe alexithymia. This is why I so often stress helping Autistic children learn what their emotional states are. All children can benefit from emotional mentoring, but Autistic children are in extra need of this sort

assistance. “It looks like you didn’t like it when your sister took your toy away. I see your face is red and you are crying. Are you feeling angry? Are you feeling sad?” Conversations like these can help children learn to put names on their emotional states and can help them to recognize the physical symptoms of emotions.

Affective empathy—the ability to feel “with” someone—is strong in most of us. Henry and Kamila Markram have put forth a concept called the Intense World Theory.24 The idea is that the autistic brain is “supercharged” with many more neural connections than the non-autistic brain and, as a result, the world is too intense to bear. Sounds are too loud and painful, lights are too bright, smells are too strong, and feelings are too intense. The more intense the perception of the world, the more the Autistic person pulls away and builds a sort of “bubble” around themselves for protection. While most non-autistic people are able to “filter” the world so that it isn’t so overwhelmingly intense, Autistic people get a massive flow of all data simultaneously and need to “shut off” in order to cope with it all. Emotions coming from within

When we express empathy or sympathy by taking things to a cerebral level and doing research to try to help you with your struggles, we are not being “cold and clinical,” we are showing our love in a way that is healthy and safe for us. Do not expect us to harm ourselves in order for you to feel as if we care about you. Respect our ways of being, our ways of knowing, our ways of loving.

“The first question we wanted to ask was – why blue? What does the color blue have to do with the autism spectrum? The answer is that Autism Spectrum Disorders are almost 5 times more common among boys (1 in 54) than among girls (1 in 252). So, the color blue represents the boys diagnosed with autism.” – Rosco’s comments about being the official shade of blue for Autism Speaks.32

health. And, once again, it is hard to find useful information about autism and dental anesthesia because parent concerns—such as the fear that anesthesia will cause or worsen autism—drown out the actual needs of actually Autistic people. Education is the answer here. Health

recognize. Many of us can have overwhelming levels of panic or pain that medical professionals are unprepared to deal with. One way to help educate your individual health care providers (and, by extension, help them serve other Autistic people better as well) is to use the healthcare toolkit developed by AASPIRE (Academic Autistic Partnership in Research and Education).

One of the hallmarks of person-first language, as you may have noticed from the examples I used, is that it is a way to separate a person from something that is considered unworthy, unwanted, ugly, or undesirable.

us. This is why I will never work for autism awareness or disability awareness without acceptance automatically attached to it.

one. Disability acceptance in general and autism acceptance specifically are movements that strive to teach others to be kind and understanding when they encounter those who look, sound, move, communicate, and live in ways that are different.

them, but at the last minute, I knew that this was my word. I have been treated as a joke since childhood. No one should be treated as a joke! It is not okay to mock disabled people. Autism acceptance includes teaching people that

differences. Making fun of us for the ways we don’t fit in will not teach us to fit in (or shame us into fitting in). It will only make us feel sad or angry and excluded.

are. The world has enough pain and suffering in it already. Choose to bring light and happiness into the world. Choose to make others fee...

The way that people talk over and through Autistic people is doubled when they are talking to an Autistic parent of an Autistic

Fear. Love is stronger than fear, but fear can hide love too well for the power of love to take effect. A

The reason I am writing about autism acceptance—the reason our whole community is making such a lot of noise about acceptance—is because awareness without acceptance is deadly. Literally deadly. Awareness without acceptance is fear.

We must do our best to support and understand them and their autism, and stop torturing them by trying to turn them into the non-autistic child they will never

sorry for me when they find out my kids are autistic is that they don’t know anything about autism except that it makes them hard to live with. They know this because the media tells them.

A strange thing about “No Means No” is that it only applies to adults. The more vulnerable members of our society—children—are rarely allowed to own their “no.’ And then somehow we expect them to morph overnight from people who have spent nearly two decades having their boundaries violated by people more powerful than them (adults) to people who are eager to respect other people’s boundaries, even the boundaries of those who are weaker than them (often women, thus the rape prevention connection of this slogan).

compliance that is so often expected from Autistic children. Too often, in the name of therapy or early intervention, Autistic children are subject to a systematic demolishing of their sense of autonomy and their right to say “no” and be heard. If non-autistic children were treated the way Autistic children

Where the touch nose sort of training goes horribly wrong is when we forget that No Means No. Autistic children don’t have as many resources for saying no, so they say it in ways that get labeled as “non-compliance.” They turn their head away. They get up from the table and walk away (or try to!) They cry. They scream. They hit. They bite. And then they get labeled: Violent and non-compliant.

62 A study published in the journal Child Abuse and Neglect found that nearly 1/5 of Autistic children had been abused sexually or physically.63 This is not a population that should be taught that their no doesn’t mean no. This is the population that most needs to be taught to own their no, defend their boundaries.

Respecting a child’s boundaries and limits may result in a child who reaches “developmental milestones” later than their age peers, but that child will arrive with intact boundaries and less likelihood of falling prey to predators and abusers.

their child “indistinguishable from his peers” or “school ready” at the “right” age. It is worthy to want to help your child. It is important to work to help your child achieve her full potential. But also, it is crucial to teach your child to say no—with whatever voice your child is able to use—and be heard. It is vital to respect your child’s autonomy and not sacrifice their safety for your learning goals. Children develop. Even children with developmental disabilities develop—just on our own schedules and in our own ways.

community. Forget “indistinguishable from peers” and focus on building a world of Triplett-friendly communities. Stop interpreting outbursts as “emotional manipulation” and start looking for the root causes. And teach your children—all your children—what boundaries are and how to say “no”

No means no. That is a basic truth of a respectful society. Do not teach your child that they are outsiders to that social contract. Thoreau taught it, Martin Luther King Jr. taught it, and you can teach it: when demands for compliance become unreasonable, it is a fundamental human right to say “no.”

But I was stubbornly trying to finish writing an essay and I tried to just “power through it.” This is a bad idea. And I know, partly, where it comes from. All my life, I’ve had people say, “it’s not that bad”, “just tough it out and you will get used to it,” “stop acting like such a baby!” I’ve internalized a lot of the shame and so when I should have just packed things up and gone home, I tried to power through the stress and suffering instead. I stayed until the coffee house closed and I got a lot of work done, despite the pain. But I wasn’t finished. I

I slept for days. I slept all of Saturday and most of Sunday. Monday afternoon, I woke up long enough to re-schedule an appointment to Tuesday. Tuesday I made the appointment but spent the rest of the day before and after sleeping. On Wednesday I slept twelve hours and awoke, finally feeling “right” enough to accomplish things again. Spending Friday evening fighting against excessive and overloading sensory input because I wanted to finish what I was doing cost me about four days of . . . . of life, really. Not just four days of work but four days of everything. This is why “just tough it out” is such a bad idea. If I had listened to my body and listened to the advice I am always giving to other people, I would have gone home (or noticed it was Friday and not gone out in the first place). I stubbornly wanted to get some work done but by trying to force my way through it, I lost several days of productivity.