Autism

How to not offend an autism advocate?

autism advocate autism mom blog terminology how to talk about autism autistic child

How to not offend an autism advocate?

Things you can’t say about autism

Talking about autism can be tricky. It seems there’s controversy hiding behind every word, phrase, and symbol.

You can’t say “high-functioning” because you’re dismissing the struggles of the autistic person. 

You can’t say “severe” or “low-functioning” because you’re ignoring their strengths. 

You can’t say “autism is hard” because it’s ableist.

You can’t say “person with autism” because it sounds like autism can be separated or detached from the person, like a disease. 

You can’t put your child in therapy because it’s ableist to try to make an autistic person less autistic “non-autistic”. 

You can’t call it a disability because some autistics see their own autism as a gift. 

You can’t say it’s a disorder because that, too, is ableist.

You can’t use the puzzle piece symbol because it’s used by Autism Speaks, which many autistics (wrongly) consider a hate group. And the same goes for the color blue. 

So, how to talk about autism without offending an autism advocate?

Many parents of children with autism come to social media to seek support and reassurance, a glimmer of hope that they are not alone in their struggles. They are looking for other people who “get it”. They want to talk about their child’s autism to educate the general public about a disability that is still not well-known and understood. They want to raise acceptance and show the world that their children are just as worthy of love as other children. Sadly, the constant policing of how to talk about autism on social media beats these people down and forces them to hide. 

The autism community can be cruel. It seems like the best way to not offend an autism advocate is to say nothing at all, and that is the last thing we should be doing. 

We need to use our voices. We need to talk about autism in all its shapes and forms. The spectrum is broad, and each autistic is only an expert on their own autism.

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7 Comments

  • Reply
    Paulm
    2020-07-11 at 1:32 PM

    It’s because some people are too apologetic to these selfish advocates.

    The more you give in to their language the more they take, you can’t appease these people.

    Stand up for your child he/she has a medical brain disorder they have the right to future treatments and drug research.

    Don’t apologize for wanting a cure for autism, don’t accept stupid spiteful accusations about changing them or not loving them.

    Your child is relying on you to fight for them, If you don’t they and you will be condemned to a dark painful future.

  • Reply
    Simon Bignell
    2020-07-11 at 10:56 PM

    Great blog, thanks. The best way, I have found, to talk about autism, is to talk about behaviour specifically. People are ‘people’ foremost, and if they are diagnosed with Autism Spectrum Disorder or not, or identify as autistic or not, is an individual circumstance of one person. Often the problem with many ‘advocates’ is that they can sometimes assume that things directly apply to their special status group, and most often themselves and fail to grasp that the message isn’t about them alone. They grant in-group access by their own approval and opinion. The internet tends to encourage polarised views, Black or White thinking or left or right politically, or ‘for or against’ us confrontations. There is a social model and a medical model divide that cuts through the conversation and can confuse the message. But, it’s more important to talk specifically about things, than it is to generalise about groups of people, most often. So, we can’t really please everyone all of the time. Surprise, surprise. 🙂

  • Reply
    Halcyon
    2020-07-18 at 11:18 PM

    It would be awful if someone without cancer claimed to know what it is like to have cancer, just because they have a family member with it. Please understand that the advocates are trying to raise awareness of what is going on inside their brain. If you can have the humility to listen without judgement, you may learn a great deal. I wrote this with the utmost respect for you, honestly x

  • Reply
    Halcyon
    2020-07-18 at 11:37 PM

    I will add this… The professionals removed Aspergers from the DSM- it was them that essentially removed the black and white differentiation, and because it is in line with the latest findings. is very challenging to express what is known, to others not experiencing the same. It may come across as minimising your child’s struggles, but that is truly not the intention. The spectrum is not In binary terms. One may be articulate but struggle to lead an independent life within the social model of disability. There are also compounding factors, such as learning difficulties that can be present in autistic and non autistic folk. No one can assume to know about an individuals circumstance from the outer expression, alone.

    I’m saying this, not in an attempt to be combative but to try and explain a different point of view.

    I do believe we all need to work together and your views are valid, but please take my first comment into account.

    If you look a little into the neuroscience, you’ll see why

    • Reply
      Halcyon
      2020-07-18 at 11:45 PM

      And I do apologise for not noticing that you are on the spectrum yourself. I wrote the above as I see both sides of the argument as an autistic and a professional. I cannot say that all advocates are reasonable but I do understand much of what they are trying to say. Best wishes

  • Reply
    flawedplan
    2020-08-23 at 8:41 AM

    And, incredibly, the hashtag #actuallyautistic was designed to warn off people who are not autistic from using it, ever. Oh, yes, that’ll work.

  • Reply
    Olivia
    2021-04-17 at 8:04 AM

    Hey Eileen! You said it well. I don’t come from the us and most of these big autism groups are over there, but it’s such harsh language! Here where I come from its rare to be called ableist or being shunned for saying “my daughter had autism”. But it’s coming more and more. This extremely woke way of talking. It’s like you can’t say anything right anymore and it’s very damaging for autistic/people with autism ( I never do this right)
    Imagine being from Norway where autism speaks and the puzzle piece is a sign of general knowledge and good things. I supported autism speaks for years before I even had a child myself with autism
    And the insane hate I got in a group for citing them? Oh boy was I shocked. I never saw them as a genuine hate group who only work to remove autism. I always saw them as very realistic and a good source of info but I was actually banned from a group because I liked their page on Facebook. Something I did maybe ten years ago.
    I think every organization and cause has something not great to them but for me autism has always been connecting the dots from everywhere. No source is 100%. Like in our case with regressiv autism we struggled a lot with losing a great language. I would love for it to come back, but I don’t want to pressure my girl with endless hours of therapy. So I try the middle road. My point is we all walk our own path and I wish advocates would see that the diversity they are advocating is actually something they work against. No two autistics persons are the same and therefore they don’t have the same “cure”. Never say cure of treatment infront of these. Then you’ll be charged with general treason for not loving autism. So exhausting

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