What is Self-Advocacy as an Autistic Adult?

Self-advocacy is key to being a successful adult, regardless of your neurology.  There are many names for it: confidence, assertiveness, interpersonal effectiveness, plain old standing up for yourself, and lots more.  And it’s not just about work or legal rights.  Autistic adults who haven’t learned self-advocacy or who have limited self-advocacy skills suffer in more ways than you probably think about.

Yes, There’s the Autistic Part…

Most people think of autistic adults’ self-advocacy as being able to demand your legal accommodations at a job.  That’s absolutely a necessary skill!  If you don’t know how to advocate for yourself, you’re more likely to just take whatever an employer tells you instead of standing up for your rights.

Being able to advocate for yourself also helps autistic adults know when to go to HR regarding violations or workplace bullying (which is rampant, by the way – so many people never seem to grow out of the middle school urge to shun and humiliate those who are different).  These skills can help an autistic person confidently use their accommodations and stims to do the best job they can at work.

All of that is very important, but work is only a small fraction of an autistic adult’s life.

Dealing with Healthcare

Do you realize that it takes self-advocacy skills to raise your hand to let your dentist know that you’re feeling pain?  Someone who doesn’t know how to stand up for themselves or who has been taught to comply regardless of how they feel may not be able to lift that hand.  They may just lie there in the chair, feeling every moment of the drilling, praying for it to end, and never say a word. 

Because nobody ever taught them that it was ok to say something when they’re uncomfortable, or how to do so.

Healthcare is an especially rough environment for self-advocacy because doctors, dentists, therapists, etc. are seen as authority figures, people you aren’t supposed to argue with because they’re supposed to know better than you.

It takes confidence to tell a doctor that the medication they prescribed you isn’t working well, or that you’re getting unpleasant side effects and need to stop that med, particularly if your doctor is at all intimidating or doesn’t make you feel comfortable.  And if you’re not happy with the care you get and you want to find a new provider – do you tell your new doctor or dentist why you left?  What if they think you’re the problem?  Would you ever receive good care again?  Is it even worth all the trouble of finding a new provider who might be just as bad when you at least already know this one?

Simply making doctor or dentist appointments is a form of self-advocacy – either you’re seeking help because something isn’t right, or you’re keeping on top of your long-term health.  Those are both good things!  But if your healthcare provider tends to lecture you or someone once gave you the idea that needing to see a dentist or doctor meant that you had done something wrong, it’s going to involve shame and fear instead of confidence.

Strong self-advocacy skills make sure that you don’t let these “experts” walk all over you.  They give you the power to ask questions like “can you recommend a toothpaste that isn’t minty so brushing my teeth won’t be so unpleasant?” or “I’m not ready to consider surgery, what are my other options?” or “I’m not comfortable taking that medication, what other choices do we have?” which help you take control of your healthcare and your life.

…And a Million Little Everyday Things

What else is self-advocacy as an adult?

Sending back a badly cooked meal instead of eating something gross or just going hungry.  (I still haven’t mastered this.)

Being able to say NO to a high-pressure sales pitch, whether that’s buying a car, leasing an apartment, choosing furniture, new electronics, or even just clothes.  Saying “no” when you mean it in all situations, really.

Knowing your rights as a renter so you don’t get screwed over by a landlord.

Disputing credit card charges, lowering cable or other utility bills.  These activities require a certain amount of entitlement: an idea that, at bare minimum, you don’t deserve to pay for things you didn’t buy or keep paying for services you don’t want.

Telling a tattoo artist that you need a touch up or telling a hairstylist that they’ve got your color wrong or you don’t like the cut, as opposed to just going home and crying for days!

Returning things you bought that don’t work or don’t fit, and not taking things you didn’t want in the first place.

How many little everyday interactions depend on your ability to put your own good first instead of doing your best to not make waves and not cause anyone any trouble?  Without that ability, you’re nothing but a doormat.

Compliance Training Destroys Self-Advocacy

When you’ve been trained into compliance, whether by ABA or overbearing family or abuse, you don’t know how to do these things.  Compliance training, intended or not, teaches an individual to be small, be quiet, never talk back, never argue, never get in the way, never cause trouble, never do anything to get noticed.  As my mother always told me, “the nail that sticks up will get hammered down”. 

Autistic adults often carry scars from childhoods spent being punished for speaking up or for being ourselves, whether we went through ABA or not.  The playground is not kind to the weird kids, and few parents have the patience of saints that’s required to never, ever snap at an autistic child.  Many of us were abused as well.  The world becomes a whole new landscape when we learn that we not only have the right to be ourselves, but we have the right to not catch hell for it.  It can take years of therapy to learn self-advocacy skills and when we begin to claim our right to exist in comfort, we may surprise or even frighten ourselves.

The solution, of course, is to teach autistic kids self-advocacy from the very beginning.  The sooner they learn that they have a right to say no, they have a right to speak up when something makes them uncomfortable, and they will be believed, the stronger they will be and the less vulnerable they will be to abusers, car salesmen, and others who prey on those who were taught to say yes, no matter what.

Two pairs of hands on a desk with paperwork. One person is signing a paper. White and blue text on a purple background reads "What is Self-Advocacy as an Autistic Adult?"

What parts of self-advocacy do you struggle with most?  Do you always give in about what to watch or where to eat?  What boundaries are easiest – or most important – for you to hold?  Share your best tips for learning self-advocacy in any setting!

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  1. Bee

    April 10, 2021 at 8:04 pm

    Self advocacy can be exhausting. Humans in general want far too much drama. One of the quandaries of self advocacy is the question of knowing when to pick battles. How to learn self advocacy as an adult? How to know when and what sorts of standing up are enough?

    1. Grace

      April 11, 2021 at 10:33 am

      These are definitely questions I struggle with! Due to the way I grew up, I never know whether I’m standing up for my self to a reasonable degree or being selfish. I’ve been trying to implement a “reasonable person” test, much like they use in court – would a reasonable person who isn’t me think this situation was ok or would they say something about it? – and sometimes that helps. Not everything is worth fighting, but each person has to choose their own priorities.

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