The way we talk about autism is damaging – here’s why

Note: I am not a medical professional, I am an autistic adult. The things that I say in this article are not indicative of the thoughts and feelings of all autistic people – we are a diverse bunch and if you’ve met one autistic person, you’ve met one autistic person. This is an opinion piece based entirely on my own views and similar views of autistic people around me, although I also don’t speak for them; only myself.

Finding out you’re autistic as an adult is quite a whirlwind experience. Common perception of autism means that many adults’ first reaction is I’m not autistic, but after personal research they come to find that it is a perfect fit for their entire lives. This is what happened to me. However, I didn’t come to this conclusion without numerous encounters with a lot of misinformation, stigma and heavy ableism.

A majority of the conversation around autism is the bouncing back and forth between medical professionals and parents of autistic children, while there is little to no consultation with autistic people themselves. This has lead to a massive discrepancy between how people perceive autism and the actual autistic experience.

The first people who probably come to your mind when I suggest inviting autistic people to advocate for themselves in the mainstream conversation about autism are those who have severe difficulties in communicating. It is true that people who are at the end of the spectrum where communicating more than very basic needs is difficult if not impossible, may not be able to advocate for themselves as clearly as someone like me, who is fluent in language. I would like to point out that being mindful about the way we treat and speak about these people is especially important. Just because they can’t speak English, make ‘strange’ movements and rely on you for most of their care, doesn’t mean that they don’t want to be treated with dignity. It always makes me extremely uncomfortable when neurotypical (people without a neurological diversity like autism, ADHD, OCD or many others) parents upload videos to Youtube of their children having meltdowns and similar intimate experiences.

But back to the conversation. While there are autistic people who can’t exactly advocate for themselves, there are many who can. I am only one of a huge number. And it’s frustrating seeing so much focus put on families of people with autism, instead of autistic people. This product will help the families of people with autism. We want to support the parents of children with autism. Raise awareness for families that have a child with autism. What about us? It’s our neurological diagnosis. It’s our social difficulty, our sensory overloads, our meltdowns, our need for routine, our poor executive function. Don’t get me wrong – it is HARD to raise and grow up around autistic people sometimes, we know. Resources for families and parents are extremely important. I am in no way saying that we need to completely remove parents from the discussion – they are crucial and their experiences and struggles are completely valid and important. But my gripe is with the fact that almost all of the mainstream resources are for them. As an autistic adult, trying to find information and resources for me is extremely difficult – I need to dig really deep. It’s as though I’m invisible and it is absolutely heartbreaking.

Another issue with the fact that almost all resources are for parents is that all of the information and resources are for children. Again, we need that, but autistic children don’t just disappear off the face of the earth when they turn 18 and we certainly don’t ‘outgrow’ it. People who are lucky enough (and I say that only in this specific context because there are separate issues those people may run into that I’m not getting into here because the post would never end) to be diagnosed as small children and have appropriate supports in place at a young age may be better suited to dealing with negative autistic traits in adulthood and they may ‘pass’ better (not show obvious autistic traits), but they’re still autistic. There is an entire world of issues and difficulties autistic people run into as adults and finding help for that is a challenge – especially if you didn’t get diagnosed until adulthood and have nothing in place to go off of. This is difficult enough when it comes to finding information, but accessing services and accommodations I need can be a challenge when they’re all directed at parents of young children. This causes a lot of difficulty for us and again, is heartbreaking.

There is also the issue around how autistic people are perceived when we’re left out of the discussion. It’s seen similarly to a disease – a terrible thing that only causes harm and ruins lives. Autism Speaks, the biggest autism awareness organisation in the United States, says in regards to finding out your child is autistic, “It is painful to love so much, to want something so much, and not quite get it. You want your child to get better so much you may feel some of the stages commonly associated with grieving.” It’s as though the child has been diagnosed with cancer and is going to die. While autism can and usually does present unique and intense challenges to life for everyone involved, including the autistic person, I am not dying. Your child isn’t broken or sick. Your child is neurologically wired differently.

An all-too-common response that I get when I tell people I’m autistic is “I’m so sorry,” and while I understand that people mean well, you don’t have to apologise for the way that I am. In fact, I’d rather you didn’t. Considering the fact that it influences absolutely every aspect of my life, for better or worse, it’s part of my identity. And this is a sentiment that I hear reverberated around a huge portion of the autistic community. I learn to live with it, I learn to embrace it, and I’d rather not spend the rest of my life feeling sorry for myself when I can be living my life. While I struggle in many ways unique to autism, neurotypical people also struggle in many ways that I don’t. But that’s part of the unique lives we live, and I don’t see a need to apologise for their neurotypicality. I require extra accommodations because of my differences, but believe it or not, I also see accommodations made for neurotypical people that I don’t require – they just aren’t considered ‘accommodations’, they’re normal societal functioning, because the people who need them are the accepted majority.

Yes, I have meltdowns and shutdowns and burnout, I can’t go to the grocery store much more than once a month and keep an extremely messy space, I have poor hygiene, I am not only socially clueless but experience great distress around people. Beeping and babies and mouth noises make me break down in tears or have violent outbursts. It’s like someone turned the brightness and sound on life up to 100. My parents moved furniture around to paint and it caused such deep confusion and distressed and a sense of displacement that I burst into tears. I can’t use public transport and I can’t go to events I want to go to alone. I can’t tell if someone is lying to me and am easy to manipulate. My own beloved dogs and bird cause me indescribable agony when they bark or screech. But I also absorb information like a sponge – I’m a walking index on fun facts about animals and have an extensive vocabulary of words that I know how to use. I see patterns in everything and make connections that others overlook. When the world isn’t too loud and bright for me to handle, it’s filled with so many tiny, beautiful details that non-autistic people don’t ever seem to notice. I can smell if someone in my building used mayonnaise in the last hour and I am completely captivated by things that sparkle. I research things I’m interested in until I can tell you every single cause and result of every single detail of every single aspect of the subject. I’m relentlessly passionate and a brilliant performer due to a lifetime of masking and social mimicry. I’m blunt and honest and know what I believe in and what that means for my life.

This is a side of the autistic story that isn’t frequently told in the mainstream because we aren’t included in the conversation about us. I don’t want a cure, I want the ability to exist and thrive in the world as I am now. ‘Curing’ my autism would entail completely rewriting my entire personality, worldview and experiences. But even though I can’t cope with loud sounds and meltdown over change, I like who I am now. In a world where we’re always told to be ourselves, I don’t want to change. I shouldn’t have to change. But there are things that I need that I’m not getting. There are resources and accommodations that would make the struggles of autism significantly easier that I don’t have access to. There’s nothing to be ‘fixed’ about me, but if I were given a voice in the discussion about autism, I would request attitudes and the world around me to shift to allow me a comfortable place here in society. The solution isn’t forcing autistic people to act or seem more neurotypical, it’s accepting their differences and giving them what they need to live happily, too, just as they are.

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