People often talk about the importance of raising awareness about autism. While yes, it is important that people know what autism is and have a vague idea of what it looks like, understanding autism is far more important. Through understanding, we can be accepted more fully by neurotypical (non-autistic people) and have our needs better accommodated.
In order to help with that, here is another list of five things autistic people would like you to know.
We’re Autistic People, Not “People With Autism”
While it may seem like a trivial matter of semantics to you, this is an issue which a lot of autistic people feel very strongly about.
A lot of professionals who work in child psychology or special education have been taught to describe us as “people with autism”. The reason often given is that it is supposedly more respectful to “put the person first” before their disability, hence the term “person-first language”. Although this sentiment is superficially noble and well-intentioned, upon closer inspection it quickly becomes problematic.
We don’t need person-first language to remind ourselves that we are more than our autism, just like a person doesn’t need person-first language to remind themselves that being British, left-handed, blonde or Christian doesn’t limit who they are. If you need to “put the person first” to remind yourself that autistic people are people too, then you need to look at why you need reminding of our humanity.
Numerous polls and surveys have shown that autistic people overwhelmingly prefer “identity-first language” i.e. being described as “autistic” rather than “having autism”. This is perceived as more positive and empowering, and recognises that a person’s autism as integral to who they are. There are of course some individuals who would prefer to be addressed as “people with autism”; nobody can tell them how they can identify and their preference is valid. However, the fact that the majority of autistic person prefer to be referred to with identity-first language should be reason enough for organisations and agencies discussing us to call us “autistic people”, as some have started to do.
However this does not stop people from correcting autistic people when we use identity-first language. Often, this is what they have been taught to say. But telling someone how they should think of themselves is disrespectful, no matter how altruistic your intentions. Some people even say that we shouldn’t say “autistic person” because we don’t say “cancerous people”, but “people with cancer”. This comparison is extremely misguided, since it perpetuates the damaging perception that autism is inherently so bad that it is comparable to a deadly illness.
If you want to truly empower autistic people, respecting our wishes about how we should be referred to is a great place to start.
We Often Mask Our Autism
Autism is a “spectrum disorder”, meaning that somebody with a diagnosis can exhibit a wide variety of symptoms and behaviours. Unfortunately, when autism is depicted in popular culture it tends to play towards extremes, as if writers have a list of symptoms they are checking off.
Intense interest in specific subjects? They only ever talk about trains or comics and their bedroom is covered in relevant memorabilia.
Loves routine and has heightened senses? They wear the same clothes every day.
Difficulties understanding implications and non-verbal cues? They speak rudely to everyone and have no friends.
Although autistic people can certainly have these traits, many have far subtler symptoms which may not be so immediately obvious. This is because some autistic people are able to copy the behaviour of neurotypical people, “masking” their symptoms so they can better fit in with neurotypical society. They might look at someone’s forehead if they struggle with making eye-contact, or resist the temptation to show repetitive self-soothing behaviours which might make neurotypical people feel uncomfortable. These individuals are often seen as “high functioning”, a term whose negative connotations are explained in another article in this series.
“Masking” has significant consequences for autistic people. While it may allow them to “fit in” better to neurotypical society, it can make it harder for them to get the diagnosis which allows them to get the support they need. This could be why fewer women are diagnosed as autistic than men, since there is some evidence that autistic women mask more frequently than their male counterparts.
Masking requires a great deal of energy, both physical and emotional. Autistic children may not show any behavioural difficulties at school, but release all their pent up stress they have built up throughout the day at home. Autistic adults may also find themselves suddenly unable to mask if they run out of energy or something happens which exceeds their capacity to manage. In this case, they may start to behave in a more stereotypically “autistic” way: engaging in self-regulatory stimming, and struggling to communicate. If the autistic person cannot find a less chaotic environment, this could lead to a meltdown or even autism burnout – where they may not be able to mask or function to their normal level for an extended period of time.
Neurotypical people can help autistic people by recognising that even if somebody appears neurotypical, that does not mean they don’t need support or can always work to the same standard.
We’re Not All Sauvants
If you see an autistic person on the news or in a movie, chances are they will have a prodigious talent in a specific field. Think of Raymond Babbit being able to judge the number of toothpicks on a table with a single glance, or a 11 year old child who may not be able to communicate verbally but can play Scriabin’s piano études with their eyes closed. It’s such a pervasive part of the public’s perception of autism that autistic people often joke about one of the first questions they are asked after revealing their diagnosis.
“What’s your special ability?”
Even positive stereotypes like these can be harmful, because they create an unrealistically high standard for autistic people to meet. While autistic people can become highly knowledgeable or talented, if their abilities do not meet the absurd standards set by society’s perception of autism then that can lead to feelings of inadequacy. This is particularly pernicious for autistic people who may have more problems fitting into a neurotypical world or communicating verbally: it creates the impression that if they cannot perform Puccini flawlessly on the violin or memorise a pack of cards in that they have less value. We should never judge the worth of a group of people according to the skills of a tiny portion of the population.
We’re More Likely to Be LGBTQ+
At the moment, it is not known why this is the case. Perhaps autistic people are less likely to be influenced by societal expectations about whom they should love and how they should identify. Whatever the cause is, it does not need to be remedied.
Because of a general perception that autistic people are less able to determine their own wants and needs, some autistic people may face opposition from friends and family when they reveal they identify with a minority gender or sexual identity. They may be dismissed as “going through a phase” or “looking for attention” by family, teachers and even healthcare professionals. Moreover, the twin challenges of being disabled and LGBTQ+ are difficult to navigate and can put a person at risk of abuse.
It is vital that autistic people are listened to with the same amount of empathy and sensitivity they would approach a neurotypical person with. That said, autistic people may still need support in terms of advice on how to explore their identities, form relationships and identify toxic behaviours which they may otherwise struggle to recognise. Autistic people can also benefit from talking with other LGBTQ+ autistic people – or at least other LGBTQ+ people – in order to learn that they are not alone and that other people can understand what they are going through. Thankfully, the internet makes that easier than ever.
Autism is not a Mental Illness
Although a persistent stigma remains, more and more people are having open and frank discussions about their mental health. However, autistic people face particular obstacles when it comes to protecting and discussing their own mental health.
Autism itself is not a mental illness; it is a “developmental disability” which is probably genetic. Developmental disorders and disabilities are present from birth, whereas mental illnesses develop later in life. Autism is not a learning disability, either, although around half of autistic people have a learning disability diagnosis on top of their autism (known as a “co-morbid diagnosis”).
However, autistic people are at increased risk of developing mental health issues including anxiety and depression. Compared to 15% of the general population, 40% of autistic people have symptoms of an anxiety disorder at any one time. This could be a consequence of autistic neurology, if the structures of autistic people’s brains leave them more vulnerable to stress and less able to manage stressors. But trauma is likely to play a large roll in this.
Autistic people have lived their lives with the constant threat of making a mistake which can have serious consequences. The ability to “fit in” is considered so fundamental in human society, that from a young age children who can be identified as “other” in some way are subjected to horrific abuse and bullying from their peers. Before they receive their diagnosis, this can be especially traumatising since they may not be able to identify why they keep being victimised. Even after being diagnosed, living in a world which is hostile to their neurology, isolating and frequently overwhelming can place autistic people at risk of depression and even shortened life expectancies.
Since autism affects communication, autistic people can find it difficult to articulate what they are struggling with and ask for help. Autistic people are also more likely to have alexithymia, a condition which affects their ability to identify and articulate their emotions. Organisations like Mind have specific advice for mental health practitioners who are counselling autistic patients.
What would you like to know about autism? Or, what you as an autistic person would like people to know about autism? Leave a comment below and follow The Spyglass Magazine for more autism self advocacy like this, and more.