April is Autism Acceptance Month.
Autism Speaks is a major national non-profit which says April is Autism Awareness Month. This is a major fundraising effort for them. They talk about “lighting it up blue” to raise awareness of autism, but you’ll note that their website about the event is focused on raising funds for them. [It’s worth noting how they spend that money: 16% of their budget goes to fundraising, their executive pay is >500K per year (source), 22% of their budget goes to research.] Many autistics voice concerns that Autism Speaks has used ableist, pathology-based descriptions of autism, invoking pity as a fundraising strategy and that their research has a focus on preventing or “curing” autism. (source)
What’s the problem with pushing for a cure to autism?
“Many autistic people don’t actually want a cure…
It is true that a lot of autistic people suffer. But what they suffer from is not so much being autistic as living in a society that is not friendly to autistic people.
A society that frowns upon people wearing sunglasses and earplugs indoors despite their sensory differences. A society where someone flapping their hands will be stared at and pitied, or told “quiet hands!” rather than be seen for the joy they’re exhibiting… The people who enforce these beliefs are not only telling autistic people that their very existence is wrong, but they are participating in oppression.
Moreover, the idea of curing autism isn’t as simple as it seems from the outside… Autism is a neurological difference that inherently shapes an autistic person’s identity, perspectives, dreams, and desires. As my sister put it: ‘Whenever you tell an autistic person they should be cured, you’re telling them that they shouldn’t be them.’ ” (Source)
So, instead of “lighting it up blue”, let’s instead talk about this as Autism Acceptance Month. Here’s how the Autism Self-Advocacy Network describes that.
“During Autism Acceptance Month, we focus on sharing positive, respectful, and accurate information about autism and autistic people.
Autism Acceptance Month promotes acceptance and celebration of autistic people as family members, friends, classmates, co-workers, and community members making valuable contributions to our world. Autism is a natural variation of the human experience, and we can all create a world which values, includes, and celebrates all kinds of minds.
In a nutshell, Autism Acceptance Month is about treating autistic people with respect, listening to what we have to say about ourselves, and making us welcome in the world.”
Autism acceptance shouldn’t imply that being autistic is easy, or that we celebrate the very real challenges. However, it does imply we should see the strengths of autism as well, and see how simple accommodations could make a huge difference.
“I do not celebrate my inability to consistently feed myself. But I do celebrate my unusual capacity for focusing on small details – a trait which makes me a good musician, a good student, and a good gift-giver. I do not celebrate my self-injurious stims. But I do celebrate my innocuous ones – I like making the pterodactyl screech, even though people stare. I do not celebrate the fact that I can’t make eye contact well enough to succeed in a job interview. But I do celebrate the fact that I can make conversation without needing to stare at someone’s eyeballs. I do not celebrate the fact that I was viciously bullied throughout elementary, middle, and high school. But I do celebrate the fact that I’m infinitely more gentle, compassionate, and interesting than any of my bullies will ever be. I do not celebrate my deficits in auditory processing that make taking notes in class nearly impossible. But I do celebrate that my experiences as a special needs student motivate me to teach special needs kids today the self-advocacy skills that I so sorely lacked when I was their age.
Try, for a minute, to look at autism through the lens of the social model of disability. Consider that, perhaps, it’s not our style of communication and interaction that disables us, but it’s the society in which our way of being is perceived as abhorrent. Perhaps what we need is a more accessible society, one in which autistic people – including those who require high levels of support for daily living – are accepted and accommodated.” (Source)
Learn from Autistics
A common slogan of autistic advocates is “Nothing About Us Without Us“. Often autism awareness activities are designed by people who are not autistic. They may staff panels with professionals in the field or parents of autistic people, but not include a single autistic person. “While it has become standard practice to have conversations about autism and Autistic people without Autistic people, this is a practice that must change.” (From Lydia X. Z. Brown) (Also learn more about including autistic people in research into the experiences of autistics.)
For this post, I tried to primarily read the voices of #ActuallyAutistic authors. I will quote from autistic authors, because it is important that their voices be heard as speaking their own experience. (Check out the #actuallyautistic hashtag on Twitter, this list of Actually Autistic Blogs, GoodReads’ list of Books by Actually Autistic Authors)
I refer to autistics or autistic people, not people with autism. I say someone is autistic, rather than has autism. This is because many autistic advocates request this “identity-first language” vs. “person first language.”
“Person first language is often used to describe something negative — a deficit or disease (for example, person with cancer).
For Autistic people, autism is seen as just like any other identity marker—similar to gender, race, ethnicity, hair color, or any number of other value-neutral characteristics. We are not “people with tallness,” “people with maleness,” “people with Jewishness,” “people with gayness,” or “people with autism.”
We are Autistic people.” – Autistic Self-Advocacy Network
“The theory behind person-first language is that it puts the person before the disability or the condition, and emphasizes the value and worth of the individual by recognizing them as a person instead of a condition. But let’s think about what we are doing… When we say ‘person with autism’, we say that it is unfortunate… we affirm that the person has value … [and that] autism is detrimental to that value…
When we say ‘Autistic person’, we recognize, affirm and validate… the value and worth of that individual as as Autistic person.” – Lydia X. Z. Brown
I speak of neurodiversity when speaking of the benefits that autistic perspectives can bring to a conversation. Neurodiverse can also be used to incorporate people with other differences in learning styles, such as ADHD.
I may refer to people without autism as neurotypical or as allistic. Allistic is a new word to me, but it was coined by Zefram in 2003, who says:
Allism is the condition of not being autistic. They are alternative brain structures, both valid, with a continuum of intermediate possibilities, just like heterosexuality and homosexuality… [there are] no connotations of normality or abnormality; they should be treated as descriptive terms on a par with “male” and “female”.
The advantage to allistic is that it’s completely value neutral. Neurotypical could be seen as meaning “normal” which would mean that neurodiverse people are “abnormal.” It is “othering” language. But I know autistics who take pride in being neurodiverse vs. “those [boring] neurotypicals”, so for now, I’ll continue using that term as well as allistic.
Autism is short for the official diagnosis: autism spectrum disorder. (Note: “many autistic people feel that the term “disorder” unnecessarily pathologizes our neurology” – source)
People often ask about an autistic person “where on the spectrum are they?” as if some sort of quantitative ranking would sum up what they need to know. In trying to describe an individual’s capabilities or challenges, in the past, you may have heard them labelled as high-functioning and low-functioning. “Be aware that many autistic people may be uncomfortable with functioning labels … The short reason is that [they are] often used to deny those deemed high-functioning from necessary services and accommodations and used to strip those deemed low-functioning of their rights.” (Source)
This comic by Rebecca Burgess offers a helpful perspective on the spectrum. She says people often think the spectrum looks like this:
But Burgess describes how this doesn’t really describe the actual experience of autism. And it can also lead to misunderstandings of a person’s skills and accommodation needs. If someone is verbal and able to conform to most of the demands of a school or work setting, they get labeled as “not that autistic”, but then if they have too many demands thrown at them and have a meltdown, then suddenly they decide you’re on the high end of the spectrum and must not be capable of anything at all.
She thinks this would be a better way to illustrate a spectrum for a particular individual.
This spectrum illustration better shows where that person’s strengths lie and what things might be more challenging for them.
Someone who is skilled in most of these areas, but has some challenges may be able to “pass” as neurotypical – able to blend successfully into a school or academic setting – though they may be perceived as “odd ducks.” In the past, they may have been called high-functioning, or diagnosed with Asperger’s Syndrome. Some people have limited skills in most of these areas, and have very high support needs, such as needing help with toileting or engaging in self-harming behaviors. They were once described as low-functioning. And some people have very low skills in some areas and VERY high skills in others. They were called savants or “rain man”. They are all autistic people. With different spectrum plots, and different support needs.
When we talk about autism acceptance, we can’t just focus on one “end” of the spectrum and ignore the challenges faced by people on the other “end” of the spectrum and by their caregivers. It is essential that all people with autism and their caregivers get the supports they need based on their own individual situations.
But all autistic people, regardless of their “level of functioning” will benefit from respectful treatment which sees their strengths rather than pathologizing them as inherently flawed due to an autism diagnosis.
Read this passage from an allistic mother of an autistic son:
I have a real beef with the notion of celebrating autism when 22% of children with autism develop epilepsy and 70% experience gastrointestinal problems. In a recent study in the Lancet, two-thirds of adults with Asperger Syndrome, now part of the autism spectrum, reported considering suicide. 35% had made specific plans or an attempt. Another study showed children with autism were three times more likely than their typically developing siblings to be bullied. Children with developmental disabilities have a substantially increased risk of becoming victims of sexual abuse.
The issues she is describing here are co-morbidities and social issues, not autism itself.
Co-morbidities are physical and mental illnesses that are much more common in autistic people than they are in the general population. Yes, these include epilepsy, gastrointestinal problems, ADHD, anxiety, bipolar disorder, schizophrenia. These are all illnesses that need medical attention, and having both autism and one of these conditions can make it more challenging to treat these, but these illnesses are not autism.
The fact that people with autism are more likely to be abused, more likely to be bullied, less likely to be successful in school, less likely and (perhaps as a direct result of these challenges) more likely to be suicidal are social issues. They are not due to autism, but to societal attitudes about autism.
“While it’s certainly not fun to be hated, discriminated against, and abused, as too many autistic kids and adults are, I hardly think it’s fair to blame autistics’ neurology for the ableism, ignorance, and lack of compassion showed by the neurotypicals who surround them.
…Autism doesn’t cause suicidal thoughts. Mass abuse of autistic people, on the other hand, just might. That’s why, instead of fearmongering about autism, instead of amplifying the already loud voices out there that talk about how hard it is to be autistic, and how hard it is to have an autistic child, I choose to advocate for a world in which we treat autistic people better, in which accessibility and acceptance, not compliance training and abusive ‘cures’, are the priority.” (source)
“Cures” vs. Acceptance and Accommodations
In my writing, I will not describe the increased prevalence of autism diagnoses as an “epidemic” or a “crisis”. I will not talk about “curing” autism or about a “person afflicted with autism” or “person suffering from autism.”
I will not talk about vaccines causing autism. They don’t. But, even if they did, I worry about the societal messages that lead parents to choose not to vaccinate because of their terror of having a child with autism. As one autistic, Sarah Kurchak, put it:
Someone who refuses to vaccinate their children because they’re afraid of autism has made the decision that people like me are the worst possible thing that can happen to their family, and they’re putting everyone at risk because of it.
It’s time to accept that autism is a common variation on the human experience. By current definitions, 1 in 63 people are autistic. It’s time to start thinking about how we accept this and how we help create accommodations that support autistic people with meeting their own goals.
Some autistic people may choose therapies that help them learn to look and act more like an allistic person. But not all will choose that.
“Many autism interventions focus on making autistic people look more like non-autistic people. Common therapy goals include increasing eye contact and reducing unusual movements. These aren’t priorities typically selected by autistic people ourselves. More common priorities include reducing the impact of some of the downsides associated with autism, such as anxiety and sensory hypersensitivity; learning skills needed to succeed in education and find employment; and accessing supports and accommodations to assist with daily living. There may be intolerable costs associated with a focus on achieving an appearance of normality. Eye contact may feel painfully intense and intrusive, or it may be impossible to simultaneously make eye contact with someone and understand their spoken words. Staying still may require a vast amount of attention, leaving little left for learning. Hand-flapping may be an expression of joy, or a way to regain a sense of where one’s body is in space. Those of us who have either made ourselves look more normal or achieved some of our goals are often told we have “overcome” autism. This is misleading. We have often had to confront and overcome prejudices, or put much more work into learning a skill that comes more easily to others.” (source)
So, can we relax a little bit about whether or not someone makes eye contact when they talk? Can we not worry about whether someone feels more comfortable wearing headphones in loud environments? Can we chill a little about stimming behaviors such as rocking and hand-flapping? Can we understand that “restricted interests” isn’t evil in and of itself? (Read “The Obsessive Joy of Autism” for insights into the experience of autism.)
Now, I’m not saying it’s not helpful for autistic kids to learn how to use neurotypical social skills. This will make their lives easier as it will help them to fit in better to school and work environments that are primarily geared for neurotypical people. But we describe it that way… we don’t describe it as teaching them how to be normal so they’re not such a problem at school and work.
And all the work shouldn’t be on autistic people. Allistic people should also think about meeting them halfway. What are things we can do to make those school and work environments more flexible and more accommodating for all people, both allistic and autistic?
A puzzle piece is often used as a symbol for autism.
Back in 1963, the National Autistic Society chose a puzzle piece as a logo because autism was “puzzling.” Many people (often allistic people) still think this symbol makes sense, because autism is often puzzling to them. Some autistic people think it’s fine because neurotypical people puzzle them. Some (often allistic parents of autistic children) feel the puzzle piece is a good symbol because finding all the right supports and accommodations to help an autistic thrive is like putting together a puzzle.
But the full logo in 1963 was a puzzle piece with a crying child on it. That implied that only children have autism, and that it is a condition that they will suffer from. A lone puzzle piece can also seem isolated.
Some autistics are also troubled by the puzzle piece symbol because “The jigsaw piece also signifies that something is missing. That autistic people are not whole.” (source) “It implied that we are something to be solved or fixed… We don’t need to be fixed, or solved there’s nothing wrong with us, and most attempts to fix us… are actively harmful.” (source)
“Some autistics dislike the symbol of a colorful puzzle piece because it appears childish. The bright primary colors and image of a “toy” most commonly associate with children identify autism as a childhood disorder.” (Source)
Here are some alternatives:
In 1999, the Autism Society adopted the puzzle piece ribbon for autism awareness.
It’s definitely an improvement – it includes many colors of puzzle pieces, interconnected with others.
The Autism Self-Advocacy Network has chosen a spiraling rainbow heptagon as their symbol.
Their symbol for autism acceptance month seen at the top of this post is a seven pointed star woven from all the colors of the rainbow.
Many autism rights advocates recommend the rainbow infinity symbol, which can also be used to represent neurodiversity, to include all the colors on the spectrum. This has been called the “autistic pride” symbol.
(Read more thoughts on symbols from autistic writers: Autistic and Unapologetic, Learn from Autistics, Ollibean, Autistic Alex, and Art of Autism – which is written by an allistic person, but quotes autistics)
Blue or Red?
Autism Speaks’ logo is a blue puzzle piece, and they encourage people to “light it up blue”.
“It’s a nice symbol of solidarity, really, it is, but here’s the thing: it’s blue because they operate on the outdated assumption that it’s mostly boys who are autistic. On the one hand, let’s overlook the old science, and the gender stereotype of “blue is for boys,” because the large majority of people and organizations lighting it up blue are simply trying to be supportive of the autism community.” (source)
Many autistics advocate for #redinstead in April.
Learning More about Autism Acceptance
ASAN has a website for Autism Acceptance Month with great resources for autistic people, parents, educators, employers, and allies.
Thinking Person’s Guide to Autism has a great page which includes: criteria for evaluating whether autism articles and efforts benefit, rather than harm, autistic people, where to look for good information, where to donate money if you want to support autistic people, recommended books to buy or give, and how to help boost autism acceptance materials.
This Wikihow article on How to Observe Autism Acceptance in April includes ideas like: research an organization before participating in their events, notice the way that organization talks about autistic people, share articles written by autistic people, share information about respecting autistic people, donate to autistic run organizations (here’s how to evaluate campaigns), and support autistic run businesses.
Disability in Kid Lit publishes articles / reviews on the portrayal of disability in middle grade and young adult books. They have recommendations for books featuring autism.