We asked autistics what they would like people to know about being autistic. These were their responses:
“I would like people to know that autism doesn’t have a “face”, a “profile” or the same characteristics, that’s why it’s a spectrum. Just because they don’t see someone as autistic doesn’t mean that they’re not, or that they aren’t struggling to mask while keeping it together in a chaotic, overstimulating environment.”
“I want people to understand that telling someone “you don’t look autistic” isn’t a compliment! In fact, this stereotypical viewpoint “autistic people have a certain look” plays a major role in women and people of color getting diagnosed later in life, if ever. It causes us to miss out of years/decades of receiving the support and accommodations we need to thrive in all areas of life. It also leads to mental health concerns like depression, PTSD and anxiety as the result of forced masking, trauma and burnout!”
“I’d like the world to know that autism has survived evolution for a reason. We perceive and process data differently. We enjoy thinking thoroughly. We are often trying to find the sequences and algorithms that are the most effective, most efficient and have the least negative impacts to everything and everyone.”
“I am only disabled when I must travel a world that refuses to even contemplate change and accept my difference – so for most of my life I hid my differences – with catastrophic consequences for me. Autistic people die on average 16 years earlier than a member of the general population – and we die earlier for all causes of death – functioning in your world kills us. Stop killing us. Embrace difference, embrace change, give us back those 16 years.”
“I really wish people would believe me when I say I like being on my own, I am not unhappy or lonely, and I definitely don’t want to be felt sorry for! (And I mean not having many friends/not going out/not seeing anyone except clients and my other half, not being on my own relationship wise). And that I really mean it when I don’t want to do anything for my birthday! It doesn’t mean come round anyway! Which then I think ‘should’ also release me from their birthday celebrations/obligations! And, when I’m having a perfectly pleasant WhatsApp chat with someone, that it my idea of socializing, so don’t be surprised that I go quiet when they say ‘we should meet up for a proper catch up soon’ – huh?! That’s what I thought we were doing now?!”
“I wish people would understand that I shouldn’t have to make excuses for not socializing to the extent and in the ways that neurotypicals do.”
“I love the way my brain works. Certain environments make it harder. I have a big heart and a big brain. Knowing I am autistic is the greatest wellbeing tool. I am deeply comfortable accepting myself. My only wish is that others accepted my difference too.”
“I mean what I say and I say what I mean. I’m not trying to play games. There are no ulterior motives. There is no hidden agenda. I wish people understood that and responded accordingly instead of trying to find ‘hidden meaning’ behind what I have said and complicate things.”
“We didn’t become more autistic while unmasking. We’re letting go of an act we’ve been putting on since we were bullied into it as children.”
“We need more openness and acceptance about diagnosis, unmasking and adapting to life thereon. While most of it will always remain a battle, not belittling anyone who relates to a disorder and not negating and marginalising their suffering is important. We wade through enough waves of self-doubt and imposter syndrome issues without the world adding on to it.”
“I would love for everyone to listen, ask questions, and be open to hearing about our lived experiences that might contradict what the non-autistic world says is the ‘truth’.”
“I don’t want the world to know anything, I want respect. Knowledge requires people wanting to know, and if they don’t want I’m okay, as long as they respect us.”
“Support and understanding would be appreciated. And if you don’t understand me you can still support me.”
“I would like my family to know that taking care for myself looks different to how they take care for themselves, that being mentally healthy as an autistic looks different from being mentally healthy for them. And that it is okay.”
“Every autistic person is different. Just because I don’t fit into your stereotypical notions of what an autistic person should be like doesn’t mean that I’m not autistic.”
“I am the same person I was before my autism diagnosis. Nothing about me has changed towards you. I only understand myself in a more authentic way now.”
“I may act ‘weird’ but I am still your son. Don’t exclude me because I don’t fit into your ideals of how you live your life.”
“I wish my family and friends understood that my struggles are genuine, not faked. If there is anything I fake, it’s being okay.”
“When I say I need something or I feel a certain way, I mean it. I am not being ‘dramatic’.”
“I may not express my emotions in the same way as you but I still feel them.”
“I want my family and friends to know that I want to bond with them, I just don’t know how to go about it.”
“My special interests are very important to me and talking about them is my way of connecting with you. Please don’t dismiss them or make fun of them.”
“I place a high value on honesty and authenticity.”
“Please give me space when I ask for it. I need it to manage my emotions and sensory overload to prevent a meltdown.”
“I say what I mean. There is no need to read between the lines or draw conclusions based on my tone.”
“I have many characteristics that you will probably not see in non-autistic people. This does not mean that you can look at me as any lesser than non-autistic people.”
