What if I'm not REALLY autistic?
What if I'm just f***ed up, a failure, and I'm claiming the title "autistic" so that I can avoid facing that??
What if people only believe I'm autistic because I'm convincing them that I am???
These questions have been some of the hardest I've faced, and they're questions that are common among late-diagnosed and/or self-diagnosed autistics. People who are late-diagnosed with autism often express challenges feeling like a part of the autism community, which can cause quite a lot of distress. Often, the root of that anxiety is wondering whether we really are autistic.
This worry can come from many sources, but some are particularly common:
Family members and friends often question or dismiss the diagnosis.
Autism is still largely misunderstood, and shrouded in stigma. Sometimes, family members and friends respond in a way that they think is reassuring, but which is instead deeply invalidating. "You don't look autistic." "I don't know, that just doesn't sound like you..." "Everyone feels that way sometimes." When the people that we trust to know us best can't accept our diagnosis, how can we? What they rarely realize is, however negative "autistic" may sound to most people, for us it is the best possible outcome: the alternative to our being autistic is us being complete failures in most facets of our lives, seemingly incapable of that which is easiest to everyone around us. If we're not autistic, then there's no explanation for our challenges, and there is no place we belong. It's hard to imagine anything worse.
Family members and friends of other autistics often question us, too.
If you've ever read comments by parents of autistic children, you've probably encountered the arguments that "people with mild autism" are harming their children's access to resources, poisoning the researchers against helping their children, causing teachers to expect unreasonable things from "really autistic" students, and denying them empathy for their challenges as a parent of an autistic child. And on some level, I get it: I'm able to maintain a job and live independently, no matter how bad my meltdown I'm not at risk of serious self injury, police don't try to question me because my stims or lack of eye contact make me look "suspicious," and my parents don't have to wonder whether I'll have access to food and shelter when they're gone -- and that's the least nuanced of the differences. It's an entirely different experience. And while if you say "they're both humans," no one expects carbon copies, it is true that some people think that a shared diagnosis means identical challenges and equivalent capabilities.
You may be familiar with the saying, If you've met one person with autism, you've met one person with autism. I am sincerely sorry any teacher assumes that because they know one autistic adult who has a job, every autistic child can get by without accommodations; I truly regret that anyone draws any conclusions about any individual's needs based on the abilities of someone else. That doesn't mean that anything will be fixed by stripping the diagnosis away from people who need it in a different way than your image of autism supports. Just as every autistic child's needs are valid, so are those of autistics whose autism is less outwardly visible.
"But everyone is a little autistic; that doesn't mean everyone needs an autism diagnosis."
Autism is a diagnosis made up of traits that exist on a continuum; that means you can have a little of the trait, a lot of the trait, or something in between. That doesn't mean that everyone is "a little autistic," just like everyone feeling nervous sometimes doesn't mean everyone has generalized anxiety disorder. Yes, it is possible for a neurotypical individual to be socially awkward; it is possible for a neurotypical to be sensitive to stimuli like light or sound; it is possible for a neurotypical to experience intense interests. What distinguishes autism is the combination, the severity, and the consistency of these and other characteristics of autism.
Now, do some people on the spectrum experience characteristics of autism to greater extremes than I do? Sure, I don't doubt it. But I experience not one, but many, of these characteristics, consistently, and to a degree that affects my daily functioning. Their experience does not mean I'm neurotypical. To compare a consistent experience that has shaped my identity to the experience of a neurotypical is like comparing a marathoner to someone who digs a pair of sneakers out of the back of their closet once every new years day. Some people may run ultramarathons instead of marathons, just like some people may experience their autism in a more consuming and distressing way; but in this analogy, I'm more similar to the ultra-marathoner than I am to the once-a-year jogger.
Myth: claiming you're autistic when you're not is damaging.
Uhm, how?? Who is harmed if someone's diagnosis helps them, but is a misdiagnosis? This mentality always reminds me of people who harass anyone wearing their favorite band's t-shirt, to make sure only "true fans" enjoy the privilege of giving the band free advertising.
What actually does do damage is making people feel guilty for expressing their needs.
I don't mean that everyone who is on the spectrum should go around telling the world that autism is always exactly what it is for them, but have you ever seen someone actually do that??? I'd be willing to bet not. Because we all know how different we are from one another. I have yet to meet someone with autism who experiences every single trait that could ever be related to autism (light sensitivity, sound sensitivity, social deficits, executive function deficits, comorbid ADHD, alexithymia, comorbid digestive conditions, hyper interests, savantism, selective mutism or complete lack of speaking, love of math, comorbid OCD, tactile sensitivity, verbal stims, motor stims, overeating, food neophobia, food avoidance... and so much more). If any one of us thought that autism always looked the way it looks in us, we'd immediately be challenged by the parts of that list that we lack.
So what's this hypothetical harm? If we're not going to tell people that all of their understanding of autism should come from looking at us; and we don't get access to accommodations without an official diagnosis; and our identifying as autistic doesn't deny someone else a diagnosis; then what is the harm? For some reason, we're made to think that we should feel guilty if we claim any association with autism. This is wrong.
There is no value in letting someone who is underinformed about autism decide whether you are autistic -- even if their validation would be valued.
Plenty of people know what autism can look like in children. They've heard about the stereotypical obsession with trains, seen non-speaking autistics on television shows, encountered activism for autism awareness, and maybe went to school with an openly-autistic child. Most people don't realize, however, how many autistic people they've met who simply didn't disclose their diagnosis. Even clinical psychologists often don't have a background in recognizing autism, especially in adults; I've had psychologists repeat myths about autistics not caring about people, not wanting friends, being incapable of healthy relationships, having savant-like memory for numbers, and countless other misrepresentations and stereotypes. I've heard professors of psychology repeat this misinformation, or fail to correct students who do. If a person with a PhD in psychology can ask me, "But doesn't ABA cure autism?" (spoiler alert: the answer is no), then is it really surprising if your family member, friend, or acquaintance doesn't know how to recognize autism?
As for parents of autistic children (whom we hope would know more about autism), let's consider their perspective for a moment: parents of autistic children have often been taught to believe that if their child experiences more troubles than other autistic children, it's because the other child's parents did something better or loved their child more. Mothers of autistic children used to be told that their child's autism was caused by too little physical affection during infancy; parents of autistic children are constantly told to put their child on this diet, or that medication, or who-knows-what other "cure." Even under-informed psychologists tell them that ABA would "cure" their child, that it's child abuse or neglect not to explore those harmful options. Basically, parents of autistic children are constantly being told that their child's autism is a negative, and that it's their fault. And, sadly, sometimes people whose autism is less outwardly visible are used as proof: "I knew an autistic kid in elementary school, but his mom cured him with a gluten-free sugar-free diet! Why didn't you do that for your child, don't you want him to be happy??"
I can't imagine what it is like to be treated the way that society treats parents of autistic children; I can forgive those who misdirect their resulting emotional turmoil in inappropriate ways, no matter how wrong I know they are. I mourn the harm they're doing to the public understanding of autism, and I want to be a part of educating both them and the rest of the world, but I can recognize that their experiences and emotional biases may be driving their ignorance. What I'm trying to say is, I know it's not personal or malicious. And, I believe that a big part of why so many parents of autistic children portray themselves as victims of their child's autism is that they ARE victims, but not of their child's autism; they are victims of an abusive society that insists that autism is bad, that a parent can stop their child from having autism, and that a parent who fails to cure their child is neglectful and abusive. Faced with those judgments, it must be hard not to feel some anger towards the so-called "proof" that's been used against you, even if that proof is a person with autism whose needs are more societally-acceptable.
Anyone else's opinion's aside, know that there are two reasons for diagnoses to exist: one is to ensure accommodations, and the other is to help people to understand their experiences and needs. If identifying as autistic helps you to understand your experiences, anticipate your needs, and address your challenges, then the diagnosis is doing exactly what it is meant to do. Whether other people can see it, and even whether the diagnosis is strictly accurate, isn't particularly relevant so long as it helps you. And if your family members and friends pause to consider your best interests instead of their comfort level, they should be able to be supportive.
What if I'm just f***ed up, a failure, and I'm claiming the title "autistic" so that I can avoid facing that??
What if people only believe I'm autistic because I'm convincing them that I am???
These questions have been some of the hardest I've faced, and they're questions that are common among late-diagnosed and/or self-diagnosed autistics. People who are late-diagnosed with autism often express challenges feeling like a part of the autism community, which can cause quite a lot of distress. Often, the root of that anxiety is wondering whether we really are autistic.
This worry can come from many sources, but some are particularly common:
Family members and friends often question or dismiss the diagnosis.
Autism is still largely misunderstood, and shrouded in stigma. Sometimes, family members and friends respond in a way that they think is reassuring, but which is instead deeply invalidating. "You don't look autistic." "I don't know, that just doesn't sound like you..." "Everyone feels that way sometimes." When the people that we trust to know us best can't accept our diagnosis, how can we? What they rarely realize is, however negative "autistic" may sound to most people, for us it is the best possible outcome: the alternative to our being autistic is us being complete failures in most facets of our lives, seemingly incapable of that which is easiest to everyone around us. If we're not autistic, then there's no explanation for our challenges, and there is no place we belong. It's hard to imagine anything worse.
Family members and friends of other autistics often question us, too.
If you've ever read comments by parents of autistic children, you've probably encountered the arguments that "people with mild autism" are harming their children's access to resources, poisoning the researchers against helping their children, causing teachers to expect unreasonable things from "really autistic" students, and denying them empathy for their challenges as a parent of an autistic child. And on some level, I get it: I'm able to maintain a job and live independently, no matter how bad my meltdown I'm not at risk of serious self injury, police don't try to question me because my stims or lack of eye contact make me look "suspicious," and my parents don't have to wonder whether I'll have access to food and shelter when they're gone -- and that's the least nuanced of the differences. It's an entirely different experience. And while if you say "they're both humans," no one expects carbon copies, it is true that some people think that a shared diagnosis means identical challenges and equivalent capabilities.
You may be familiar with the saying, If you've met one person with autism, you've met one person with autism. I am sincerely sorry any teacher assumes that because they know one autistic adult who has a job, every autistic child can get by without accommodations; I truly regret that anyone draws any conclusions about any individual's needs based on the abilities of someone else. That doesn't mean that anything will be fixed by stripping the diagnosis away from people who need it in a different way than your image of autism supports. Just as every autistic child's needs are valid, so are those of autistics whose autism is less outwardly visible.
"But everyone is a little autistic; that doesn't mean everyone needs an autism diagnosis."
Autism is a diagnosis made up of traits that exist on a continuum; that means you can have a little of the trait, a lot of the trait, or something in between. That doesn't mean that everyone is "a little autistic," just like everyone feeling nervous sometimes doesn't mean everyone has generalized anxiety disorder. Yes, it is possible for a neurotypical individual to be socially awkward; it is possible for a neurotypical to be sensitive to stimuli like light or sound; it is possible for a neurotypical to experience intense interests. What distinguishes autism is the combination, the severity, and the consistency of these and other characteristics of autism.
Now, do some people on the spectrum experience characteristics of autism to greater extremes than I do? Sure, I don't doubt it. But I experience not one, but many, of these characteristics, consistently, and to a degree that affects my daily functioning. Their experience does not mean I'm neurotypical. To compare a consistent experience that has shaped my identity to the experience of a neurotypical is like comparing a marathoner to someone who digs a pair of sneakers out of the back of their closet once every new years day. Some people may run ultramarathons instead of marathons, just like some people may experience their autism in a more consuming and distressing way; but in this analogy, I'm more similar to the ultra-marathoner than I am to the once-a-year jogger.
Myth: claiming you're autistic when you're not is damaging.
Uhm, how?? Who is harmed if someone's diagnosis helps them, but is a misdiagnosis? This mentality always reminds me of people who harass anyone wearing their favorite band's t-shirt, to make sure only "true fans" enjoy the privilege of giving the band free advertising.
What actually does do damage is making people feel guilty for expressing their needs.
I don't mean that everyone who is on the spectrum should go around telling the world that autism is always exactly what it is for them, but have you ever seen someone actually do that??? I'd be willing to bet not. Because we all know how different we are from one another. I have yet to meet someone with autism who experiences every single trait that could ever be related to autism (light sensitivity, sound sensitivity, social deficits, executive function deficits, comorbid ADHD, alexithymia, comorbid digestive conditions, hyper interests, savantism, selective mutism or complete lack of speaking, love of math, comorbid OCD, tactile sensitivity, verbal stims, motor stims, overeating, food neophobia, food avoidance... and so much more). If any one of us thought that autism always looked the way it looks in us, we'd immediately be challenged by the parts of that list that we lack.
So what's this hypothetical harm? If we're not going to tell people that all of their understanding of autism should come from looking at us; and we don't get access to accommodations without an official diagnosis; and our identifying as autistic doesn't deny someone else a diagnosis; then what is the harm? For some reason, we're made to think that we should feel guilty if we claim any association with autism. This is wrong.
There is no value in letting someone who is underinformed about autism decide whether you are autistic -- even if their validation would be valued.
Plenty of people know what autism can look like in children. They've heard about the stereotypical obsession with trains, seen non-speaking autistics on television shows, encountered activism for autism awareness, and maybe went to school with an openly-autistic child. Most people don't realize, however, how many autistic people they've met who simply didn't disclose their diagnosis. Even clinical psychologists often don't have a background in recognizing autism, especially in adults; I've had psychologists repeat myths about autistics not caring about people, not wanting friends, being incapable of healthy relationships, having savant-like memory for numbers, and countless other misrepresentations and stereotypes. I've heard professors of psychology repeat this misinformation, or fail to correct students who do. If a person with a PhD in psychology can ask me, "But doesn't ABA cure autism?" (spoiler alert: the answer is no), then is it really surprising if your family member, friend, or acquaintance doesn't know how to recognize autism?
As for parents of autistic children (whom we hope would know more about autism), let's consider their perspective for a moment: parents of autistic children have often been taught to believe that if their child experiences more troubles than other autistic children, it's because the other child's parents did something better or loved their child more. Mothers of autistic children used to be told that their child's autism was caused by too little physical affection during infancy; parents of autistic children are constantly told to put their child on this diet, or that medication, or who-knows-what other "cure." Even under-informed psychologists tell them that ABA would "cure" their child, that it's child abuse or neglect not to explore those harmful options. Basically, parents of autistic children are constantly being told that their child's autism is a negative, and that it's their fault. And, sadly, sometimes people whose autism is less outwardly visible are used as proof: "I knew an autistic kid in elementary school, but his mom cured him with a gluten-free sugar-free diet! Why didn't you do that for your child, don't you want him to be happy??"
I can't imagine what it is like to be treated the way that society treats parents of autistic children; I can forgive those who misdirect their resulting emotional turmoil in inappropriate ways, no matter how wrong I know they are. I mourn the harm they're doing to the public understanding of autism, and I want to be a part of educating both them and the rest of the world, but I can recognize that their experiences and emotional biases may be driving their ignorance. What I'm trying to say is, I know it's not personal or malicious. And, I believe that a big part of why so many parents of autistic children portray themselves as victims of their child's autism is that they ARE victims, but not of their child's autism; they are victims of an abusive society that insists that autism is bad, that a parent can stop their child from having autism, and that a parent who fails to cure their child is neglectful and abusive. Faced with those judgments, it must be hard not to feel some anger towards the so-called "proof" that's been used against you, even if that proof is a person with autism whose needs are more societally-acceptable.
Anyone else's opinion's aside, know that there are two reasons for diagnoses to exist: one is to ensure accommodations, and the other is to help people to understand their experiences and needs. If identifying as autistic helps you to understand your experiences, anticipate your needs, and address your challenges, then the diagnosis is doing exactly what it is meant to do. Whether other people can see it, and even whether the diagnosis is strictly accurate, isn't particularly relevant so long as it helps you. And if your family members and friends pause to consider your best interests instead of their comfort level, they should be able to be supportive.
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