April marks Autism Awareness Month. You might expect this to be a time autistic people look forward to, with lots of people talking about our needs and open discussions about how our lives can be made better. However, it often proves to be an emotionally exhausting time, with harmful myths about autistic people being spread, anti-vaxxers out in full force, and autistic voices being shut down because we don’t conform to peoples preconceived ideas about our condition.
Here are five things that the autistic community want to neurotypical people (people who are not autistic) to learn about us and bear in mind for the course of Autism Awareness Month, and carry into the future.
1. Autistic Adults Exist
Much of the “awareness” being raised on Autism Awareness Day (AAD) is focused on autistic children. Even the World Health Organisation made this mistake on AAD:
It’s true, autism begins in childhood. But autistic children become autistic adults. The WHO’s tweet seems to imply that autism is a childhood condition which may or may not persist into adulthood, as if it’s something you can just grow out of.
This is a dangerous misconception. While some autistic people become better at managing their condition as they get older, that does not mean that they stop being autistic. That also does not mean that they won’t require support, which is often much harder for them to get because they are deemed to be less of a priority and less in need.
The WHO did not tweet anything about helping autistic adults on AAD (2 April), only about supporting autistic children. While improving services and care for autistic children is very important, employers and the wider community need guidance of how to support their autistic employees and peers.
2. The Spectrum isn’t What You Think it is
You’ll have heard the phrase “autism spectrum” and will probably have pictured something like this:
Many people think that the “autism spectrum” is a linear one, with “severe autism” at one end and “not at all autistic” on the other. However, there are a lot of unfortunate consequences
The first is that someone can be “a little bit autistic” because they may be socially awkward or obsessed with a niche subject. This doesn’t make sense. If your stomach and feet are swollen and you feel nauseous every morning but your uterus is unoccupied, you’re not “a little bit pregnant”. You can have some autistic tendencies without them affecting your life enough to get a diagnosis.
The second is that a linear spectrum implies that an autistic person further down the spectrum will experience every symptom to a lesser extent than somebody higher up the spectrum.
When autism is described as a “spectrum disorder”, that means that no two autistic people present with the same symptoms at the same magnitude.
Instead of thinking of autism as a linear spectrum with a single axis, picture it as multiple axes – each one representing a symptom.
These graphics do not represent every symptom an autistic person can present, for the sake of simplicity. These polygons are far more effective at visualising the diversity of the autism spectrum than a conventional linear scale. The closer the vertex of the yellow polygon along the axis away from the centre of the blue polygon, the greater the degree of impairment that symptom would cause an autistic person.
This autistic person has greater sensory sensitivity to the world around them, but is better at abstract and imaginative thinking and has fewer restrictive or repetitive behaviours. They might wear headphones or sunglasses to shield themselves from overwhelming sensory input.
This autistic person does not have the same degree of sensory sensitivity (or insensitivity) as the person above and has similar levels of communication. But their difficulties in abstract thought, restricted behaviour and executive disfunction may mean they require more support than the above person.
Both these people are autistic. Neither is more autistic than the other. But they’re both different and their contributions to the conversation around their conditions are equally as valuable.
3. Listen to Autistic Voices
A mantra of the disabled community is “nothing about us without us”. Unfortunately, it often feels like we’re shut out of our own conversation.
For years, parents of autistic children have been invited onto morning show sofas to talk about their autistic children who may not be able to express themselves traditionally. While this in itself is not necessarily a problem, an autistic person will always be better to articulate what autism feels like than somebody who has observed it in another person.
The sidelining of autistic voices in favour of the voices of those who know autistic people is thankfully decreasing, but it has left a pernicious legacy. Social media has provided many autistic people with a platform with which to talk about their experiences and campaign for better understanding and empathy towards autistic people. However, all too often we are met with hostility from people who accuse us of “not being autistic enough” to understand what it is like or taking attention away from people who need intensive support throughout their lives.
Thankfully, we are now spoiled for choice with varied autistic voices who are willing to articulate their experiences. Naturalist Chris Packham and Climate Campaigner Greta Thunberg have both spoken about how autism affects their lives. On Twitter, Autistic teacher Pete Wharmby has developed a following for his concisely articulated threads which provide relatable – and often humorous – insights into the autistic experience. When she was seventeen, Sienna Castellon published a book to help autistic girls navigate the labyrinth of adolescence, and founded Neurodiversity Celebration Week to promote awareness and acceptance of people with special educational needs, along with the Quantum Leap mentoring scheme for other neurodiverse young people. Japanese writer Naoki Higashida gained international attention for his book “Fall Down Seven Times, Get Up Eight” where he demolishes the myth that non-verbal (or largely non-verbal) autistic people are incapable of complex thought and communication.
With so many excellent autistic advocates out there, there is no excuse to do anything about us without us.
4. Please Don’t Light it Up Blue
Autism Speaks is one of the the most prominent autism-related organisations internationally, but it is also hugely controversial. A full analysis of why so many autistic people feel Autism Speaks does not represent nor speak for them and has actually harmed the community deserves an article of its own. But in short, Autism Speaks has a history of using sweeping, dehumanising language about autism and autistic people, comparing autism to “paediatric aids, cancer and diabetes” and portraying it as a malicious force hell-bent on destroying marriages, ruining lives and something to be afraid of. While some people do struggle to take care of autistic relationships and deserve all the support in the world, this apocalyptic language helps nobody and certainly doesn’t help carers cope.
Autism Speaks encourages people to “light it up blue” to raise awareness about autism by wearing blue clothing, putting blue filters and banners on their social media profiles, and illuminating famous landmarks in blue.
In her excellent video on the subject, Autistic YouTuber Samantha Stein explains some of the problems with Autism Speaks, the “Light it Up Blue” campaign and the fact that most “awareness raising” actually does nothing to help autistic people. How does lighting up a national monument actually help autistic people?
That said, if would would like to change your social media profile to raise awareness and promote acceptance of autism, please consider going #RedInstead of blue. This colour has been adopted by many in the community as a counter-protest to the dehumanising and exclusionary rhetoric promoted by groups such as Autism Speaks. By doing so, you will show autistic people that our voices are being listened to, and that you are not just aware of autism but ready to accept our differences and help us thrive. That is what neurodiversity is all about.
5. We’re All Individuals
So you’ve met an autistic person? Great! You’ve met one autistic person. That does not make you an expert on autism, in the same way that knowing neurotypical people does not make an autistic person an expert on neurotypicalism.
The classic portrayal of autism in the media is of a young white man who is either a once in a generation savant or requires intensive support 24/7, with few nuances in between. This has real-world consequences in influencing the public perception of autism, and even that of professionals. Women are less likely to be diagnosed as autistic than men, largely because they can be better at masking their symptoms and don’t present with most people’s expectations of autistic behaviour. People of colour and from working class backgrounds are also less likely to receive diagnoses. This does not mean they are less likely to be autistic, but means they and their families are less likely to receive the support they need because they do not fit the mould of what people think autism looks like.
When it comes to learning about autism, do so with an open mind. Don’t make sweeping statements about autism and then double down when an autistic person comes to explain how it’s more nuanced than you thought. Don’t disregard the experiences of one autistic person just because it doesn’t match what you have experienced from another autistic people. You wouldn’t like it if an autistic person assumed all neurotypical people were
Some people prefer calling “Autism Awareness” events “Autism Acceptance” instead. While simply being aware of autism is not enough for neurotypical people to make the lives of autistic people better, it provides an important foundation on which to build understanding. It is only through that understanding that autistic people can be fully accepted and accommodating in society. We still have a way to go.
What would you like to know about autism? Or, what you as an autistic person like people to know about autism? Leave a comment below and follow The Spyglass Magazine for more autism self advocacy like this, and more.