After the success of the first “5 Things Autistic People Want You to Know” article on this site which I wrote for the beginning of Autism Awareness Month, I figured I should close April with a sequel.
Autism is a complex condition which affects everybody differently. But with 1 in 68 people having some kind of autism spectrum disorder, it’s more essential than ever before that neurotypical people are aware of how we live our lives, are accepting of it and understand our worth and how to make our lives easier.
This list is by no means exhaustive. But here are five more things autistic people would like you to know about our condition and our lives.
1. Meltdowns are not Tantrums
Autistic meltdowns and tantrums may look similar to the untrained eye: the individual may cry, scream, shake, lash out at others or hurt themselves. However, the key difference is in intent: tantrums are intentional displays of challenging behaviour in order to achieve an objective such as a parent purchasing a favourite snack; meltdowns are uncontrollable intense responses to situations which overwhelm the autistic brain and have significant overlap with panic attacks.
I wrote about autistic meltdowns in an article for The Guardian in 2019:
This is what it’s like. To be autistic is to live in a world where everything is too loud, too smelly and too bright, populated by people who say one thing and get angry when you fail to realise that they really meant something different. At the same time, your brain is struggling to keep track of and process the stimuli constantly bombarding it. Your brain and body then shut down and go into overdrive at the same time. Adrenaline courses through your veins. You are swallowed in a cloud of panic and cannot help but scream and sometimes lash out at others or even yourself.Charlie Hancock – Like Greta Thunberg, I am on the autism spectrum. She gives me hope
Some autistic people may be able to identify sensations which trigger meltdowns and take measures to avoid them. Some may be able to recognise that feeling when you are about to have a meltdown – racing thoughts, a twisting feeling in your gut, rising anxiety, heightened senses – and express that they need help. However, many autistic people find their ability to communicate impaired in this state, or may not be able to recognise how they are feeling – a condition called alexithymia.
If an autistic person has a meltdown and you are able to help, the most important thing to do is to make the environment as safe and calm as possible. If you can, try and reduce the intensity of the sensory input in the area by calmly asking people to be quiet, move away or turn down the lights. This is easier if you know the autistic person and what their triggers could be. If the autistic person reacts physically, try and reduce the risk of them hurting themselves or others (which they cannot control and may not be aware of). Never scold someone having a meltdown.
Meltdowns are exhausting, so it’s vital that the autistic person is able to recover in a calm environment which is free of intrusive sensory stimuli. A single meltdown could take days to recover from. Crucially, autistic people should never be shamed for their meltdowns, which are uncontrollable responses to a world hostile to our brains.
2. Don’t Share Videos of Meltdowns
When BBC One broadcast a clip of an autistic boy called Sam having a meltdown on their Big Night In fundraiser telethon on April 23, many people may not have thought anything of it. After all, the segment was about how the public’s donations helped Sam get a service dog in order to help him manage his anxieties and cope with daily life.
Whatever your intention, to film an autistic person having a meltdown (without their permission) and then share it is to take advantage of them in their most vulnerable moment. As I observed in my article in The Guardian, autistic people feel intense shame around their meltdowns, even though it is not something we can control. If an autistic person wants to share a video of themselves having a meltdown in order to raise awareness, that is their prerogative. If a neurotypical person does the same thing, whatever the intention, it is exploitative.
Sharing videos of autistic meltdowns is a particularly damaging form of parental oversharing. Imagine sharing a video of your autistic child having a meltdown, and then people at their school find that video and make that child’s school life hell. Imagine that child then grew up and a potential employer saw that video of them screaming and banging their head. The same goes for sharing any details about your autistic relative’s challenging behavior. One day they may read a blog post where their parent expressed how their child’s behavior made them miserable or even wish they didn’t exist. Venting online may be cathartic, but imagine the shame that autistic person may feel if they not only found out their parent was broadcasting intimate details the autistic person may be ashamed of for anybody to read, and then expressing that their behavior made their parent’s life miserable. Imagine the self-loathing which that would cause. Autistic people are already at increased risk of suicide. Please don’t do anything which could add to those terrifying statistics.
Autism can be difficult to live with, and families of autistic people need support as well as autistic people themselves. But it is perfectly possible to raise awareness of autism without violating the privacy and dignity of autistic people. It is even possible to address meltdowns in a respectful way. This video from The Guardian is an excellent example on how to address meltdowns sensitively. Its first-person perspective goes a step further by illustrating what can trigger an autistic meltdown and, more importantly, what it feels like to go through these traumatic experiences and recuperate afterwards.
3. We Need More Time to Process Things
Imagine you are trying to complete a cryptic crossword on a packed subway train carriage: you can barely hear yourself think over the clatter of the tracks and loud chatter of people around you; the person to your right is eating a greasy pasty which smells so bad your eyes are watering; the person to your left has the music in their earbuds turned up too loud and keeps knocking you with their elbows; the lights are so bright you should be wearing sunglasses but you don’t have any and if you don’t finish this crossword you will be shamed publicly.
Wouldn’t you find this situation overwhelming? Could you finish your cryptic crossword with all this going on around you?
Autistic people are often extremely aware of everything going on in their surroundings: every sound and smell and texture. If an autistic person is asked a question in a classroom, office or other environment they have to sift through all that sensory bombardment in order to focus on that question and then think of the answer. On top of that, anxiety and worry about how they will be perceived can make it even harder for them to process a question. Equally, some autistic people are under-sensitive to their environment any may not realise they are being asked a question.
Autistic people are also unable to instinctively understand how tones of voice and implicit meanings can change the meaning of words, which can lead to misunderstandings which can be humorous but are often embarrassing. In some cases, an autistic person may gain an intellectual understanding of double-entendre and implication but will still be less fluent in it than a neurotypical person. Picking apart a conversation like poetry in an English literature class is exhausting and one of the reasons why autistic people find social interaction exhausting. We’re still
4. Functioning Labels Are Not Helpful
In the previous article in this series, I discussed how the autism spectrum is not linear along a single axis, but more like several axis arranged into a radar chart. But in that case, how do you describe an autistic person and their needs.
Some people divide autistic people into “high functioning” and “low functioning” in order to describe how autistic people are affected by our condition. “High functioning” autistic people are generally agreed to be almost able to pass as “normal”, live independently and have average to above-average IQs, while “low functioning” autistic people may be non-verbal and require more support. Neither of these labels are helpful.
While some autistic people who would be considered “high functioning” are able to communicate verbally, attend main-stream education and perhaps even hold down a job. Characters like Sheldon Cooper from The Big Bang Theory or Abed Nadir from Community (neither of whom have had an autism diagnosis confirmed but are heavily coded as such) fit this description, helping to create the perception that some autistic people are barely affected by their condition and are just a bit socially awkward and struggle with sarcasm. In reality, “high functioning” autistics are only considered such at the expense of huge amounts of energy and effort to shift through all the bombardments of sensory stimulation and mimic the neurotypical (non-autistic) people around them. This “masking” is thought to be one of the reasons why fewer women are diagnosed as autistic than men.
But what happens when masking becomes too difficult? In the short term, meltdowns. In the long term, this puts autistic people at increased risk of anxiety and depression and eventually autistic burnout. This is the state of no longer being able to mask one’s autistic symptoms, and stressors which an autistic person may have been able to handle become too difficult to deal with. Burnout is debilitating, and can result in a significant loss of ability to communicate and even contribute to depressive and suicidal behaviour. While not all autistic people may experience burnout for a significant period of time, an autistic person who could pass as neurotypical one day may be unable to speak and flinch at the slightest sound the next. The “high functioning” label ignores that some autistic people are affected by their disability at different intensities throughout their lives and are still in need of support.
Functioning labels don’t help “low functioning” autistic either. Not only is it stigmatising, but it does nothing to describe the specific needs of the individual. Non-verbal autistics often have the “low functioning” label slapped on them, whereas they may in fact be able to express themselves and their needs using communication aids and require less support beyond that in their daily lives than their verbal counterparts.
While it is important to distinguish between the different needs of autistic individuals, dividing us into binary functional groups helps nobody. It sidelines autistics who may be able to lead independent lives as not needing support, and condemns autistic people who need more support as a burden who are somehow lower than their counterparts. If you are going to talk about an experience of autism in more detail, talk about it in terms of what a person can do and their specific needs.
5. Autism is Not Caused By Vaccines
This dangerous misconception has been disproved again and again but has still stuck around with deadly consequences. The WHO included “vaccine hesitancy” as one of its ten threats to global health in 2019, a year when over 140,000 people died from measles.
At time of writing, the world is going through the most serious pandemic in living memory. When a vaccine is developed, which could be 18 months away, it is essential that as many people take it as possible in order for society to begin to reopen.
It should also be noted that the Lancet paper which claimed a link between the combined MMR vaccine and autism was not only deeply flawed but fraudulent. Andrew Wakefield, the disgraced former gastroenterologist who compiled the 1998 study attributed with starting the scare, had a financial interest in reducing uptake of the combined MMR vaccine since he had filed a patent for a “single antigen” vaccine. Moreover, the initial study was not even looking for a link between the combined MMR vaccine, but with gastrointestinal disease. British journalist Brian Deer has written extensively about the ethical and practical issues with this study, which was retracted by the Lancet in 2010.
Recognising that vaccines do not cause autism is not only essential from a public health standpoint, but it is a vital step in accepting us for who we are and accommodating our needs. The idea that a “perfect” child can be given an injection which gives them a disability perpetuates the dangerous belief that autistic people are broken, that we could have lived a normal life but that opportunity was taken away from us.
Autistic people are not broken. We are not lesser beings who will never lead a fulfilling life, since what constitutes a fulfilling life is different for each person. What is important is that we are treated as different in the sense that our needs are accommodated, but not as lesser beings who will never understand the human experience. No two neurotypical people will have the same experience of humanity and living on this planet.
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.