How to be an ally to an autistic person (part 1)
Autism is a neurological difference. It’s a lifelong developmental disability that is different for each autistic individual. It is estimated that about one in 160 people is autistic, though numbers differ highly as not every autistic individual has an official diagnosis.
Support for our differences consists of listening to our voices, accepting that our ways of functioning are just really different than the default, and make tiny steps in changing the ableist discourse in society by being aware of what you say. Words have a lot of power, and each person holds a small piece of this power: nobody is an ableist person, but we all carry a responsibility to unlearn interiorized ableism.
First of all, it is important to listen to autistic voices, learn more about autism, and accept and support the autistic people around you. Try not to be fooled by stereotypical beliefs about autism (or any other developmental disability) and try to be open-minded towards other braintypes and ways of being.
Secondly, language is important. Language constructs realities. Language can make the difference between exclusion and inclusion. Unknowingly you might insult or hurt someone heavily through language. Unwillingly you might deconstruct someone’s self-worth through language.
Maybe you’ve already been learning more about racist and sexist micro-aggressions (or experienced them), but did you know there are also ableist micro-aggressions?
What is ableism?
Ableism is putting a certain norm of functioning as ‘the norm’. “Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability. Like racism and sexism, ableism classifies entire groups of people as ‘less than,’ and includes harmful stereotypes, misconceptions, and generalizations of people with disabilities.” 
Ableism can be severe, minor or micro. Same counts for sexism and racism, with other examples. All these -isms work very similarly.
Severe ableism are things like segregating disabled people in separate institutions, assuming that people with disabilities want or need to be ‘fixed’, refusing to provide reasonable accommodations, not incorporating full accessibility into design plans of infrastructures and so forth.
Minor ableism is framing disability as either inspirational or tragic, talking to a person with a disability like they are a child, assuming an invisible disability is not an ‘actual disability’, asking invasive questions about the medical history of the person, choosing an inaccessible venue for a meeting or event and so forth.
Ableist micro-aggressions are everyday verbal or behavioural expressions that communicate an insult in relation to someone’s disability. Ableist micro-aggressions are comments using a disability like an adjective (eg. “I cleaned my room as an OCD person today”, “she was acting so bipolar last weekend”), neglecting a person’s disability (eg. “I don’t even see it”, “I didn’t even notice”, “but you don’t look autistic”), gaslighting a disabled person’s problems (“it’s not that bad”, “don’t be so dramatic about it”), and many more cases.
Phrases like this imply that a disability makes a person less valued, and that disability is bad, negative, a problem to be fixed, rather than a normal, inevitable part of the human experience. Many people don’t mean to be insulting or hurtful, and they often have good intentions, but even well-meant comments and actions can take a serious toll on their recipients, so it is your responsibility to inform yourself on ableism, sexism, and racism – and all the other -isms.
Basic terminology toolkit for allistic  people
- Practise letting go of using the abbreviation ASD, because it stands for autism spectrum disorder. We have had enough of feeling like a problem, a disorder, a fault in society. Instead of saying “my ASD kid”, which translates as ‘my autism spectrum disorder kid”, say my kid or my autistic kid.
Sometimes, we get into the habit of just using terminology and language without too much thought, but this one is important to a lot of autistic people. Instead of ASD, it’s totally okay to say “autistic”. I’m not a disorder, nor are my neurokin. We’re just autistic. Autism is a neurological difference we are born with; it is not a disease.
We know it is officially called ASD, but please don’t use it that way. Though some autistic people might be ok with the abbreviation, so you can always ask the person.
- So, autism is not a disease, but is it a disability? Yes. I would say autism is a disability because more than 99% of the people are non-autistic and consequently the societal infrastructures are not inclusive towards autistic people. The lack of societal inclusion of autistic people makes it a disability. A disability says more about who society is excluding than about you.
Disabled means not abled as most people are. Our societal structures are built to conform to the needs and ways of functioning of most people. As most people can see, blind people experience their blindness as a disability not because of the blindness but because the societal infrastructure is not built for blind people. Same for any other type of disability.
Not all autistic people like to define their autism as a disability, so you can always ask the person. Some autistic people don’t define themselves as disabled, others do.
For me, as the author of this post, I do see it as a handicap because it prevents me from functioning like the 99% other people and all of work, study and social life is barely accessible for autistic body-minds.
- Is there such a thing as Aspergers? Yes, it used to be a diagnosis and still is in many countries. Many people and online Autism Advocates still use the term. I prefer not to, and I don’t know anyone who knows about the history of Hans Asperger (a nazi doctor) and is still comfortable calling themselves ‘Aspies’. I tell more about this history below.
- Don’t use people-first terminology. It’s hurtful and wrong. We are not ‘persons with autism’. We are autistics. I don’t ‘have autism’ – I am autistic.
This means use diagnosis-first terminology. Think about it. We don’t have things that define us. Do you say, ‘person with parenthood’ or ‘parent’? Do you say, ‘person with blindness’ or ‘blind person’? Do you say, ‘person with homosexual relationships’ or a ‘gay person’?
If you say it as something we have, the language construct appears to make it as something we can lose, something we can cure from, like cancer or the flu. ‘He has cancer, he had the flu’. Autism is not an illness, it’s not curable and we don’t need a cure from being ourselves. Again, it’s simply a neurological difference.
- There’s no ‘mild autism’ or ‘severe autism’. No high or low. Yes, there are differences between us, but there are no shades in autism, it’s not a linear thing. Do you say, ‘I have mild neurotypicality’ or ‘I’m just a mild neurotypical’? No, I suppose not. (note: neurotypical is the opposite of neurodiverse, meaning the ‘neurological norm’ of society – a.k.a. ‘normal’).
Autism is a different neurological operating system, not an illness. You have it, or you don’t. The differences in our rainbow are not to be put on a linear scale from 0 to 100. We differ from each other because we are humans and we have different backgrounds, different personalities, and families, we are all different.
Some meme (note: memes can be so educational) suggested seeing it as a cupcake. Some have sprinkles, some have cream, some have chocolate chips; but they are all the same cupcake. Autism cupcakes.
- Don’t use autistic as an adjective for non-autistic people expressing stereotypical autistic behaviours.
For example, when someone is organizing their pencils, do not joke at them for ‘acting autistic’, do not say of yourself that you are a ‘bit autistic today’. Same for all other disabilities and mental illnesses.
If you would tell me that ‘I’m acting a bit autistic’ for whatever I’m doing, I’ll be very offended. I am autistic, at every moment of my life, and it should not be used as an insult.
- Never invalidate the experiences of an autistic person. Whether they are self-diagnosed or officially diagnosed, rather invisibly or quite visibly impaired by their autism, when they tell you they are autistic and struggle with a certain aspect of life: believe, accept, acknowledge, be aware and support.
COMING OUT AS AUTISTIC
Avoid these ableist micro-aggressions when someone tells you they’re autistic.
- “you must be (very) high functioning”.
There is now high and low in autism. This is one of the most harmful, upsetting things to say. I always feel a big urge of slapping someone when they talk about high-and-low functioning autism. It’s a very ableist and discriminating thing to separate autistic people between the ones who appear to be ‘functioning better’ than the other ones who ‘fail to function as neurotypicals’.
What you are really saying is: “your autism doesn’t affect ME that much, so you must not have that much of a problem as ‘real’ autistic people” – and you are ignoring completely my intense struggles with performing everyday life and masking my disability, and at the same time you are putting your own way of functioning as the norm we all should be able to achieve.
There are differences between autistic individuals because we are human, and all humans are different. Some have more intelligence than others, just like all humans. Some have more privileges in support than others, just like all humans. All the differences in intelligence, family support, economical and racial background of the family and so forth influence how the autism expresses itself in the individual.
I am not high functioning, neither low – well, that just depends on the day. The more exhausted and burned out I am, the more I perform rather as a low-functioning individual. Everyone has low and high days, but to call a person a ‘low-functioning person’ is incredibly rude and wrong.
If you would call me high functioning because I’m good at masking my pain and loneliness, well I’d say it’s rather ‘slow but decisive suicide’ as the masking sets the path for the extreme loneliness and derealisation that leads to suicide. High functioning you said?
Lastly, the divide between high-and-low functioning has a rather grim history related to a nazi doctor called Hans Asperger. Disabled people got murdered, but this Hans Asperger found that some autistic people were actually still useful for the system, so they were called ‘Aspergers’. The ‘low-functioning’ individuals were murdered.
That’s also the reason I don’t talk about Aspergers, and I would never call myself an ‘Aspie’. It’s striking how little people know about this history, because I don’t think anyone would still use the term knowing where it comes from.
- “so you have just a mild form of autism”
Autism is not a linear scale that goes from less autistic to more autistic. The autism spectrum means that everyone has a different set of strengths and challenges.
It is not because I put so much work in appearing normal (trying to fit in) that my autism is ‘mild’. Autism is autism, there is no linear progression from mild to severe. We all display our traits differently, and often women/non-binary persons with autism do not display their traits so much in public (due to masking).
The struggles I experience are real and not mild. Invalidating my disability based on how I look or perform in the moment you see me is a blind and disruptive kind of ableism.
- “oh, but you don’t look autistic at all”.
Autism does not have a look. It is a neurological condition, not a clothing style. Autistic people can be of any age, any skin colour, any body type, any gender, any type of personality. We are not all the same, but we share a way of thinking that’s different from most people.
Also, no one should have to feel like they almost must prove their disability to anyone. If someone tells you they are autistic, and your response is ‘oh you don’t look like that’, you are refusing to believe them, which is very wrong and uncomfortable.
The problem of not appearing ‘obviously disabled’ is that people make expectations of us that we are simply not able to achieve, which makes us feel anxious and failed. (note: There are reasons why autism is very much related to anxiety disorders and depression, and the societal gas-lighting is definitely a big reason.)
This is also related to the verbal-performative intelligence gap that is very common amongst neurodiverse people. This means that a person can combine a very high IQ verbally with a rather moderate or low IQ on performative skills. It is rather difficult than for others to understand why someone can be doing a PhD but struggle to get dressed and make breakfast. Though this is completely normal for an autistic individual.
Another reason that you do not see it, is because we try very hard to keep everything inside until we’re alone or with close people to let everything out. It is called masking, it’s very harmful as it leads to burn out and depression, and it’s something especially autistic women/non-binary folks do a lot.
- “but you are a girl?”
People wrongly assume autism to be a ‘boys thing’, just like what happens with ADHD. The gender gap happens primarily because autism and ADHD research has always focused on boys (and men), creating a mainstream image of autism based on how autism is expressed in boys/men. Whereas autism in girls/women/ non-binary folks expressed differently and is thus often missed until much later in life, contributing to a lot of trauma and struggles for these women that could’ve been avoided.
Autism is not directly gender related. An autistic individual can be of any gender.
Though there is a firm correlation between gender diversity and autism. “Some experts estimate that 6 to 25.5 percent of gender-diverse people are autistic.” 
Autistic people are much more likely to be gender diverse (trans and non-binary) than non-autistic people. “Gender identity and sexuality are more varied among autistic people than in the general population, and autism is more common among people who do not identify as their assigned sex than it is in the population at large — three to six times as common.” 
- “you’re too sociable to be autistic”.
Read on a meme somewhere: “Gee, thanks, that means my crazy work to appear normal is worth the meltdown the days after you saw me.” Very true.
This is the most common one in the category as described below: you are too + positive adjective + to be autistic. Next in row is ‘too pretty’ and on the third place definitely ‘too empathic’.
Girls on the spectrum are known to be more in need for (social) contact than boys. I would say in general, because I don’t like the gender division in there, though it seems to be true that autism just displays very differently in boys or girls. Though what about trans and non-binary autistics? Question for another post.
We can be social, though it depends on how you define social of course. But it is rather the rejection on who we are, and the following devastating masking, that makes us often hate socializing. Though in general, we also just need a lot of down-time to recharge.
For most of us, social situations require a lot of energy due to empathy and sensory overload, and struggles to maintain conversations, know how to act and interact, and overthinking. Thus we carefully select the moments we can be social and the people we really want to be social with. For most this means a small circle of three to five people in their lives, and we don’t need more.
- “you’re too pretty/too smart/too nice/too normal/too empathic… to be autistic”.
So … All these phrases that start with ‘you are too’, continue with a positive adjective like pretty or smart and end with ‘to be autistic’ are an ableist insult. Why didn’t you expect a disabled person to be pretty or smart or nice?
A similar one is ‘you can’t have autism because …’. Because you have a partner, because you have a degree, because you make eye contact … All of them are ableist insults.
These insults are harmful in many more ways than the direct insult. They are rooted in stereotypical thinking about autism which also prevents many women from getting their diagnosis earlier in life.
On the topic of autism and empathy, I wrote this column ‘unlimited uncontrollable empathy’.
- “Everyone is a bit autistic” or “Everyone struggles with that”.
This is basically not true at all, and I struggle with a lot of anger when people say this. (Of course the anger part is my issue).
It’s societal gaslighting  of autistic people. Autism is a specific neurological condition that is in our genes. It’s the whole set of traits that makes a person autistic. You are or you are not autistic, there is no in between.
Autistic traits are human traits, so it is quite obvious that you can relate to some of these traits. An autism diagnosis is about a specific set of traits, and especially the intensity of them. There are also parts that overlap with other neurological differences (like ADHD) or mental illnesses (PTSD or other anxiety disorders). We are all human and have different brains, but not everyone is autistic, or has ADHD, or a mental illness. No!
Small note here: if you do really relate to a lot you read about autism, you best consider an official diagnosis, or see a psychologist at least to figure out what’s going on.
By saying that everyone has difficulties with emotions, thoughts, and sensory input you neglect what we go through and you refuse to see our disability as real and valid. Saying to a partially sighted person that we all struggle with seeing clearly or sharing a story of when you had something that you think is like the experience of a person with a sight handicap, you would definitely consider as wrong; well, surprise surprise, same counts for invisible impairments. If you are not autistic, you do not know how it is. Not.
About less than one percent in the world is autistic. So no, not everyone is a bit autistic. You are most likely a neurotypical person who likes to organize their socks and find themselves therefore ‘a bit autistic’. Don’t say that, don’t use my neurological difference to be funny. It’s not funny.
You don’t have the same struggles as I have. You can go grocery shopping without being exhausted and drained for days afterwards, you can make phone calls easily, you don’t need at least five hours of complete dark silence before and after seeing friends or going places because of the sensory overload, you don’t overthink everything people (and you) said for years to come, you don’t get completely absorbed by one thing and forget all about your own existence, you don’t struggle your entire life with intense anxiety and depression disorders and a psychotic vulnerability … (and if you do struggle with some of these, you’d might have to consider an appointment with your psychiatrist).
- “It’s just a diagnosis, don’t let it define you”.
This one especially is used often to people who recently got diagnosed and it’s very hurtful.
It’s not just a diagnosis. It does define me, in many ways. Autism is not a label; it is who I am. I am autistic, autism defines who I am.
So much happens when you get your diagnosis. It’s an explanation for feeling so fundamentally different and lost. It’s a true and intense process to revise your life pre-diagnosis in the light of this new information.
For me when I got mine, it wasn’t positive or negative, but I felt a lot of pain that I got this diagnosis so late in life when people have been presuming I’d be autistic behind my back for such a long time. It could’ve helped me understand myself so much earlier in life and prevent so much trauma, depression and burn out (or at least, so I imagine, in the light of my overthinking every step of my life).
It’ll take time and lots of therapy to digest not only the trauma, but also the realization that most of it might could’ve been prevented with understanding and support from my family and surroundings, which is another layer of trauma.
- “They really give anyone a diagnosis/label these days”.
No, they don’t. Getting an official diagnosis takes a lot of time, a lot of money and a lot of effort. You have to see a lot of psychologists and psychiatrists, do a lot of testing and fill in hundreds of questionaries. They do not give anyone a diagnosis. And it’s not ‘an epidemic’. As there is more and more research and knowledge, there are more diagnoses which is a good thing!
Note: getting an official diagnosis is really important and helpful in so many ways, BUT not quite accessible for many. Help your friend or family member financially, emotionally, and management wise in this process; and let’s advocate for a change towards making this diagnostics not such an elite practice. It is just fundamentally wrong that if you need help as a disabled person, you need quite some money and available time/energy to begin with before you could get any support.
- “Oh, I’m so sorry!”
This is so sad. This response really hurt me personally a lot. It’s not ‘painful’ to be diagnosed with any type of neurodiversity, it is painful that I didn’t have my diagnosis earlier in life.
It’s striking that neurotypical people rather respond with these types of sayings, feeling sorry that we ‘no longer’ belong to ‘the normal part’. Whereas other autistic or ADHD persons will congratulate us, hurray, welcome to the mental margins of society!
This post is partly informative, partly activist and partly a personal essay. It’s a blogpost, a bit experimental and mostly with the goal of getting my words out into the world where they can be hopefully of any use to someone. It is not representative of UNDIVIDED, and I’m the only one responsible for my words.
If you have questions after reading this, don’t hesitate to contact me. In case you’d like to do more research, you can find a list of resources below.
Also, UNDIVIDED started recently with a new work group on neurodiversity and mental health. If you’d like to participate in our anti-ableist activism group; also send me a message. (Maysa Mariposa on Facebook).
Author: Maysa Mariposa
- Our Autistic Lives
- The Legacy of Autism and How to Think Smarter About People Who Think Differently
- Women and girls with Autism Spectrum Disorder
- The powers of Neurodiversity
- Hannah Gadsby: Nanette & Douglas (on Netflix) – this excerpt from her show Douglas on autism is a really good representation of living with an autistic mind in a non-autistic world
 Allistic people are allies to autistic people.
 Neurokin are fellow neurodiverse people.
 Gaslighting is a form of emotional abuse which means that a person is made to question their own thoughts, memories, experiences and sensations.