So, you want to Autism Level UP!? …Game on!11 min read

Autism Awareness?

Autism Acceptance?

Autism Appreciation?

None of them work perfectly. It is true that Autism Appreciation and Acceptance seem far better than Autism Awareness, but it is also true that a large percentage of the population still lacks awareness of the realities of autism and neurodiversity.

Certainly, without being aware of autism, autistics, and what that all really means, someone cannot truly understand, accept, appreciate, or be an ally to autistic people. Awareness — real awareness — is needed, and acceptance and appreciation are progress, but being accepting and having an appreciation are all rather low bars to set– particularly for autistic stakeholders, family members, researchers, funding organizations, and policy makers.

One April, we were discussing the problem of labeling April 2nd as Autism Awareness, Acceptance, or Appreciation Day. As we pondered the dilemma, I (Dr. Amy Laurent) agreed with Dr. JÂcqûelyn Fede’s thinking outlined above. There had to be something better than appreciation…right? In the midst of that discussion, JÂcqûelyn offered that if we were to have a day or week or month focused on autism, that it needed to be about leveling up.

In other words, it needed to be about meeting people where they were and encouraging them to take the next step to support autistic people. Progress and change were needed, not static goals! This really was an “A(u) ‑Ha” moment.  We both knew it instantly.  We quickly sketched a graphic that could represent this idea and the name of our partnership was born… Autism Level UP!

I often say, unabashedly and to anyone who will listen, the work that JÂcqûelyn and I do collaboratively is some of “my” very best.  As a neurotypical occupational therapist, special educator, and developmental psychologist who has devoted the better part of her career to supporting autistic individuals, our partnership has been nothing short of revolutionary.

I have always strived to be a conscientious practitioner who attempts to understand, respect, and work within neurodevelopmental differences characteristic of autistic individuals.  However, like pretty much every practicing professional, I was also trained in the context of deficit and disorder. Therefore, despite my thoughtful and reflective practice frameworks… those concepts were omnipresent and influenced my perceptions.

I definitely had (and have) room to grow and working day in and day out with JÂcqûelyn constantly helps me Level UP!  Her candor often level sets me. Yes, as a professional I have much to offer and we agree the “power is in the partnership,” but her lived experiences (as well as professional knowledge) are critical in guiding the nature of our work and ensuring it is aligned with autistic priorities.

I could go on (and on), but I would prefer you have the opportunity to learn from her. As such, I pass the keyboard to her…You are in for a real treat!

Level: Awareness

 Awareness: If you’re thinking about Rainman and Sheldon Cooper when you think about autism, and that is your entire knowledge base, you’re probably at this level. If everything you know about autism is based upon a single individual (e.g., maybe your cousin’s kid; that one kid you remember from high school; your neighbor’s sister’s daughter’s college roommate… etc.), you’re also probably at this level.

You may also be someone who is aware that you don’t know much about autism at all, or someone who has had some college courses that focused on psychology, education, special education, and the like.

Newsflash and not-so-fun fact: in most cases that I have seen, the authors of those chapters and editors and publishers of those textbooks are still at the awareness level.

Rainman

So how do you Level UP! from here? The very best thing you can do is to learn from the autistic community! Go straight to the source.  There are a tremendous number of blogs, infographics, articles, videos, artistic pieces, and more that have been created by autistic people about their own experience, and these resources are available online. This is definitely where you should start.

Everything else you read, learn, and take in about autism should then be assessed critically and realistically based on what you know from the autistic community (you know…the people who live it).

Of course, you should also read about autism in terms of research and diagnostic criteria if you want, but prioritize learning about it from those who live it and ensure that you think critically about research and educational practice based on what you learn from autistic people!

One great resource is the social media hashtag #AskingAutistics. Here, you can pose questions to autistic people, or simply read the variety of things that are asked and the range of answers given by community members. This is a great way to learn about the kinds of things the general population wonders about autism and the kinds of challenges with which they seek help to support autistic people in their lives.

Most importantly to see how the autistic community responds and how diverse the perspectives of autistic people can be.  This will give you great awareness of the true nature of the “spectrum” and is an important step towards leveling up!

Level: Acceptance

Acceptance: Acceptance can be wide ranging, indeed. Maybe you have been seeing and reading content from the autistic community, and it doesn’t mesh with what you thought autism was at all.

Maybe you learned about autism in a psychology or education course or in medical school, and you’re having a hard time reconciling what that one chapter in your textbook said with what you are learning from reading autistic accounts of their daily life.

Maybe you are a parent who has been directed only by professionals up to this point and are just beginning to find autistic voices online or in your community. Maybe you’ve dedicated your entire career to supporting autistics and listening to and wrestling with the autistic perspective has been an absolute game changer. Maybe you thought you were extremely aware and that you totally understood the “autistic experience,” and this step is that you need to accept that you really cannot understand.

Acceptance is truly just letting real awareness win out over any preconceived notions you had. This is much easier said (or typed, in this case) than done. Cognitively, humans have a preference to seek out, attend to, and remember information that is consistent with their prior beliefs and to ignore, disregard, and forget information that is inconsistent with what they thought they knew.

It is hard to change your entire blueprint or schema for a concept, even if it is logical to do so. For example, obviously, an autistic person would know more about their own experience than a researcher who has potentially interacted only very superficially with autistic people, but making this happen in your brain will take time and effort.

It may be helpful to tackle simple, more concrete things first. For example, you may have learned from autistic people that a vast majority of the community prefers identity-first language (i.e., autistic person) over person-first language (i.e., person with/having autism). 

This may be in contrast to what you thought or learned from a text book (you know, that we put the person first). Language is powerful – which is why autistic people care so much about this debate – so start there! Pay attention to the language you use.

You can also pay attention to the symbols you use. You may have also learned that a very large percentage of autistic people do not support the blue puzzle piece; in fact, many do not support the color blue and the puzzle piece generally when used to represent autism.

This one is easy! Don’t buy things about autism that represent it with the puzzle piece! Don’t “light it up BLUE!” Don’t wear or put out things you have purchased in the past that represent autism this way.

Remember – acceptance is all about letting the new-and-improved information you have learned win out over the old and outdated stuff you had hanging around in your brain. It is an active process, and it is HARD, but there are some simple, concrete steps you can take up front– like attending to the language and symbolism you use around autism. There is also no shame in going back to step one to gather more information before you can accept – we cannot stress this enough. This journey is not a race!

Level: Appreciation

Appreciation:  You cannot truly appreciate that which you do not authentically understand.  

It is only once you have accepted the realities of autism that it can truly be appreciated. Here, we must emphasize that appreciation is not all about warm and fuzzy feels of goodness around autism. In fact, it really is not that at all.

Yes, of course it is wonderful to appreciate autistic people and to appreciate all that they have to offer to society, because we do indeed have so much to offer! However, it is also about recognizing and affirming real challenges autistic people face on a daily basis. It is appreciating the differences, strengths, challenges, needs, and context in which autistic people exist. Even the dictionary agrees (see below)!

There is an aspect of enjoying the good qualities – valuing, respecting, treasuring… even admiration! But appreciation is also a FULL understanding of a situation – awareness and realization. A full understanding is not just the rainbows and butterflies and unicorns (yeah… we’ve got unicorns; and nah…we aren’t going to share those), but also the fires, storms, darkness and disabling mismatches between who we are and what society expects.

Appreciate our REALITY.

One other important point about appreciation is that true appreciation should result in an understanding that what is different is not necessarily a deficit or problem. Your appreciation of autism should not follow with some kind of frenetic moral obligation to help us fit into society or be just like you.

If you appreciate art, for example, would you EVER consider changing it, even if it is not how you, yourself, would have portrayed the same scene??

No.

And if you tried, security would have you out of that museum SO FAST. We don’t have personal people buffers (damnit), so appreciate HOW we are different, how it meshes or not with society, and what that means for us.

Do not attempt to reprogram how we operate. A great step to Level UP! within the context of appreciation is turning those yearnings for change towards society… not towards “helping” us.

appreciation dictionary entry

Level: Empowerment

Empowerment:  The one-sided, warm-fuzzy, gooey-gushy form of “APPRECIATION” tends to lead more to things like inspiration porn – stories of usually well-intending humans who “go above and beyond” to invite an autistic person to prom or meet an autistic person’s needs in public.

First of all, these stories perpetuate the idea that treating autistic people with respect and decency is newsworthy and deserving of some sort of superhero status. That’s not good. Second of all, it does nothing to empower autistic people who are often portrayed in these stories as some poor, helpless, but very sweet soul reliant on the selflessness of the kindhearted few to allow them into your normie nonsense (like prom… just for example). 

This is not at all empowering. The people who engage in this, perpetuate it, make news stories out of it, and promote it– and all the people who comment on such stories with 5,000 smiling/crying face and heart emojis– probably all need to see step one (awareness) ASAP.

Empowerment is supporting and following, and letting autistic people lead you. Empowerment is teaching autistic children about themselves and their needs and teaching their peers as well. And teaching autistic students and their peers that it is not just okay for an autistic person to make their needs known, but that it is encouraged!

Empowerment is arming autistic people with the knowledge, tools, and strategies to navigate the world as they are…it is certainly NOT letting them play along in your glorified night of dress up and dance. But, if you are truly at this point, then the idea of instilling knowledge, implementing support where needed, fostering autonomy, and validating autistic people as they are should be quite clear to you.

This is the step in the process where you start to become a true ally of autistic people. Being an ally is impossible without understanding the need to and how to follow and join in with the autistic community. You may come to this step and realize there is still so much for you to learn, and that is characteristic of understanding that you can’t ever truly know the autistic experience.

You may find that you have a new, insatiable need to read more and more and more and to listen to or read as many autistic experiences as possible.

You may also find yourself disheartened. For all you have learned and as far as you have come, you probably realize how far society has to come and how flawed so much of what is taken as “real data,” “best practice,” or “evidence-based” really is. Remember, empowering autistic people is critical, but you can also empower neurotypical individuals to learn.

Please — keep going! We need you.

Level: Advocacy

Advocacy:  Take action! Once you have REAL AWARENESS of autism that you have ACCEPTED as true and valid, and you APPRECIATE the reality of the autistic experience in the context of society without believing you can “totally understand it,” or “know what it is to be autistic,” and you are capable of EMPOWERING autistic people by facilitating access to knowledge about their needs and rights and effective tools and strategies to navigate the world as they are and/or by following the lead of autistic people on issues about them, you are in a prime position to be an amazing ADVOCATE and ally to the community.

In fact, we hope you do just that once you level up to this point. Sharing your journey – inclusive of what you did right and what you had wrong – is also incredibly powerful to help start spreading real awareness for others.

Of course, there is no end point in advocacy and there are many battles to be fought within this realm. Advocacy is simply the ultimate launching pad to truly make change for autistic people.

Game on.

5 Comments

  1. Being a good man/person is what makes one truly Super.

  2. AMAZING article and I love the graphic. Can it be used?

    1. Several good graphics, Dana.

      I liked the “Not a puzzle piece” one and the “Wherever you are” one.



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