Last month I ran an autism survey, inviting anyone associated with autism to fill out: whether they were autistic, cared for someone with autism, or cared about someone with autism.
It unexpectedly got 477 responses.
I’m still going through the data, and it’s both arduous and eye-opening. But by far the most interesting part was the final question, identical to the title of this article.
373 people gave an answer to this question. When I saw the sheer variety and insight that these answers had, I realised that one article would not be enough for the whole survey. It wouldn’t be right to take ten or fifteen good answers and tack them on the end of a much larger project. Not when there were so many voices worth hearing.
So I’ve given these answers an article of their own.
I’ve included these comments exactly as I received them, with zero editing. Of course, including all 373 answers would be too much (although plenty of answers are duplicates), so I’ve had to select the ones that particularly struck me. There’s just under eighty here.
I’m not sure I need to make any further comments about these, except those below in square brackets. I think these voices say enough by themselves.
So here we go: read the following and take whichever lessons you want. There’s plenty of them to take.
If you could teach people one thing about autism, what would it be?
Our survey said…
- “Every person with autism is different.” [I could barely count the number of times this one came up.]
- “Hollywood does not paint an accurate description of autism.”
- “We do crave deep friendships but don’t always know how to build them”
- “That we’re not a burden on society”
- “That people with autism know that they are different and are usually insecure about it”
- “It is nobody’s fault.”
- “if someone with autism says something untactful or hurtful they often genuinely don’t realise the pain they may cause”
- “It doesn’t look like you think it does”
- “Just being “tougher” on my son will NOT help him cope with the things he struggles with.”
- “We have feelings too”
- “That accommodations for ASD are as valid as those we make for people with physical disabilities.”
- “we’re normal, the rest of you are weird” [I use this line during every talk I give!]
- “When you have met 1 person with Autism, you have ONLY met 1 person. Not all are the same. And not all like Rainman either.”
- “They are not naughty!”
- “We are different, not less” [several people used this phrase from Temple Grandin.]
- “That it’s hard for even high-functioning individuals to live “typical” lives”
- “To give people with austism a chance to explain themselves then try to really listen and understand what they are saying”
- “It’s nothing to fear, embrace it’s wonderfulness :)”
- “We aren’t robots. We have empathy, loads of it. We just don’t express our empathy in the same ways. (The ‘lack of empathy’ phrasing a lot of articles use is something that annoys me; it gives the wrong impression. I’d prefer something more like, ‘difficulty expressing empathy’ instead.)”
- “Be patient and allow us “room to breathe” socially.”
- “You can be perfectly happy being yourself and be autistic at the same time.”
- “They are trying 100 times harder than others to do the right thing, so please be kind.”
- “if people have difficulty learning, try a different approach.”
- “To see things from the often literal perspective of the person with autism.”
- “That they feel deeply and care deeply despite the reputation!”
- “Autism is a neurological difference, not a defect to be “fixed” or a disease to be “cured.””
- “Look past their tricky moments and see the awesome person they are!”
- “All people deserve respect and love. All people.”
- “That my son’s are not weird or stupid, just different to a standard imposed by society”
- “Don’t use it as an excuse for violence or lazyness”
- “It manifests quite differently in females”
- “Don’t think of the problems,think of the possibilities.”
- “we are awesome” [yep, this person’s got it right!]
- “To listen to them. Really listen, not just pretend they are. They would be surprised at how wonderful the world can look through the eyes of someone who sees it so vividly. My son teaches me something new every day.”
- “Even though it isn’t always visible, it doesn’t make it any ‘milder’”
- “to say what you mean and mean what you say”
- “Our behaviour can be difficult to intepret.”
- “Not related to vaccines”
- “Having autism doesn’t make you less of a person.”
- “Autistics are beautiful!”
- “They’re not weird, just wired differently”
- “That people with autism just want to be accepted for who they are.”
- “You need to change for their world not try to make them fit into our world” [Again, several people made this point.]
- “That ‘normal’ doesn’t exist”
- “To embrace it and see it as a super power not a deficit”
- “Don’t be frightened of what you don’t understand”
- “It’s a spectrum condition that’s neurological. We think differently and thus, perceive the world differently. There’s nothing “wrong” with me, I don’t want to be “cured”nor do I want to be patronised by people with far lower IQ scores :p”
- “if you know one person with autism….you ONLY know one person with autism!”
- “Outbursts and anger are often due to anxiety”
- “When given time and their own space, people with autism can be very insightful and creative because they see, hear and feel things the rest of us often overlook.”
- “That it is not something we need to try to fix about people but instead adapt to their needs”
- “I am friendly, and even if I can’t show it or communicate it properly, I just want to be loved”
- “To give the autistic person the benefit of the doubt, they may not mean to be coming across as rude or insolent.”
- “It doesn’t define the person”
- “You can’t catch it!”
- “See ability not disability”
- “Have patience and listen to the person. They are smarter than you think.”
- “stop going on about the importance of eye contact”
- “It’s called a spectrum for a reason. No two cases are the same.”
- “They really are like everyone else. Only better.” [I’ll admit, this one made me laugh!]
- “We’re not being difficult or cocky, stating facts”
- “It’s a condition not an excuse, you can achieve just as much”
- “to embrace the person not just the difference”
- “How important it is to screen young kids for it do they can get EI services as early as possible”
- “They are still the same person they were before the label”
- “that it’s not because of bad parenting”
- “About how very differently we can see the world. It’s like comparing radio to television or a movie. It might tell the same story, but not in the same way or with anywhere near the same detail.” [I’ve never heard this analogy before. I love it.]
- “Like anyone else, we have talents that need help being unlocked”
- “the strengths of autistic people need to better understood and utilised by the world.”
- “I don’t think nearly enough is known about sensory issues”
- “I like myself because of my autism,, not in spite of it. Many others feel the same.”
- “We are not insensitive and cold, but rather TOO sensitive to everything around us.”
- “Everyone is unique and autism just happens to be the thing that makes my son unique”
- “If you help with their anxiety issues, you’ll find some of the odder/ disruptive spectrum issues are much easier to work with”
- “We are still people” [At least six people said this. Quite revealing.]
- “To see the person, not just the autism.”
- “It’s okay <3”
Of course, feel free to add your own in the comments.
I am aware that most of my readers already have some sort of connection to autism. But I get the feeling that these messages need to be read by those who autism does not affect. Not just the people who stare in the streets, the “you don’t look autistic” brigade and so on, but those who genuinely want to learn more about autism and how it affects autistic people.
If you know any such people, feel free to send them this way. The world can learn a lot from talking to the scores of people who contributed to this article.