Tuesday, April 11, 2017

Guest post by Allison Prinsen: How to Be a Good Ally During Autism Awareness Month (and Year-Round)

Today I am very proud to have my daughter, Allison Prinsen, as my guest here on the blog, writing about Autism Awareness Month. I asked Allison to share her thoughts on this subject, knowing she'd have something insightful to offer -- and she certainly did. I hope you find this post as informative and helpful as I do.


How to Be a Good Ally during Autism Awareness Month (and year-round)

It’s Autism Awareness Month. Companies all over the world will be “lighting it up blue” and collecting donations for autism foundations. 

But before you don a puzzle-piece shirt or drop a coin into a donation box, here are a few tips on how to support autistic people in the best way possible. 

Promote autism acceptance, not just autism awareness.

There’s nothing inherently bad about autism awareness campaigns. But the thing is, people already know autism exists. And too often these campaigns are fear-mongering and paint autism as a terrible crisis and something in need of a cure. Many—perhaps most—autistic people don’t see it this way. We see our autism as part of who we are, as something that gives us strengths as well as challenges. Many of us take the position that we are not disabled specifically by our autism, but by a society that is too often unaccepting and unaccommodating of us. So promote autism acceptance—an attitude that seeks to respect autistic people, accept our differences, and celebrate our strengths.

In addition, before you donate to an autism charity, find out more about it. Is it seeking to do research for a cure, or is it seeking to help and support autistic people? Many autism charities are disliked by the autistic community. Which brings me to my next point:

Don't rely on Autism Speaks for your autism expertise.

Autism Speaks is an organization that is hated by the majority of the autistic community. Some of the reasons why:

- they have very few autistic people on their board of directors

- only 3% of their money goes to helping families and autistic people

- they have often used fear-mongering language in talking about autism, such as in the “Autism Every Day” video, where autism was portrayed as a monster coming to steal your child

- they once made a video in which a woman talked about wanting to kill her autistic child


Instead, support autism organizations actually run by autistic people, and that prioritize autistic voices, such as Autism Self-Advocacy Network and Autism Women’s Network. As a corollary, you may want to avoid “Lighting it up Blue”, as this is an initiative started by Autism Speaks. The autistic community has created a hashtag, #RedInstead, that serves as an alternative.

Listen to Autistic people.

This is the most important tip. Autistic people will always be the foremost experts on autism. Listen to us when we tell you what we have trouble with and what we can and can’t do. Don’t force us to do things we are uncomfortable with, but don’t underestimate our capabilities, either. Even if our struggles don’t show on the inside, or we are able to pass as neurotypical most of the time, that doesn’t mean we aren’t struggling. 

You may ask, “Well, what about low-functioning autistics? They can’t speak, so how can we listen to them?” First of all, functioning labels are widely inaccurate, since not every autistic person fits so neatly into one category or another. It is possible to be highly intelligent but nonverbal, or verbal but intellectually disabled. Second of all, there are blogs by so-called “low-functioning” people who are able to tell their stories and share valuable insights on autism. Check out Non-Speaking Autistics Speaking, Ballastexistenz, or Carly Fleischmann.

In conclusion, should you support autistic people this month and all year? Absolutely! But make sure you’re going about it the right way.  Most autistic people don’t want to be cured or treated like there is something wrong with us. We want to be listened to, respected, and accepted for who we are.


From Jeannie: Comments are very welcome below, but note that Allison may not reply since she may not be checking back.


  1. Allison, this is the most insightful and informative post I've ever read on autism. Thanks for opening up yourself and for guiding us all.

  2. Allison,
    I appreciate your insight and wisdom. Also , it was very well written.
    Thank you.

  3. Very well written and informative. Thank you Allison!

  4. Well said! I thank you on behalf of my son and families like ours. We may have only one actual diagnosis in our family, but it affects us all in different ways. Autism is a condition to be managed, and a label that it is useful to have to explain certain things and access certain support, but that is all. As my son once said, in a moment of frustrated yet profound insight, "Mummy, I am not autism!"

    May God bless you, Allison, and your family. Your mum must be very proud to have such a thoughtful and intelligent daughter. This is an excellent piece of writing.

  5. My eight year old daughter has autism. Thank you for this post. All the fear actually immobilized me for awhile. Thank you.

  6. Allison, Thank you for giving a first person perspective of autism. It is helpful to know how to best support you as well as others.

  7. Thank you for sharing this information and insight. It certainly helps me to have a better perspective on Autism Awareness vs Autism Acceptance!


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