“…I would like to be able to recognize anything I may be unconsciously doing that is harmful, that I have no idea about, because I wasn’t even aware of the issue in the first place.” –What someone recently wrote to me after saying she was inspired to learn more about autism

 

After reading this wonderful comment, I was shocked. Surprised. Amazed, even. Then, grateful: She was the first person, in three years of me talking about autism, who had asked me for more information.

I am still processing that.

A few days later, another person said she wanted to be an ally and asked what she could do to help. 

I felt more shock. And more gratitude.  

 

Why am I mentioning this? 

…Because it was profoundly meaningful and touching that the two individuals mentioned above wanted to learn more about autism.

I felt cared for, acknowledged. I felt accepted. Important.

I felt this extended to the wonderful autism community and I knew they would feel gratitude, too.

 

Why does this matter so much?

Well, because it’s clearly pretty rare that people actually ask us autistics for information about autism so they can better understand. It’s even more rare that we experience “neurotypicals” stating they want to be allies.

And that’s rather sad.

Many of us advocates spend time trying to share our voices within what seems like a vacuum.

It sometimes feels like we’re either “preaching to the choir,” getting virtual high-fives and happy flaps from our fellow autists (more on this term below), or we’re inundated with messages from others telling us we’re wrong, that autism is a tragedy, that asking for acceptance is equivalent to not acknowledging challenges.

We’re often told that our personal experiences of being autistic are invalid because they don’t match what all the medical experts say or what some of the parents feel (often a sense of victimhood: I believe this is a systemic issue; more below) raising their autistic child. 

We’re even told we don’t have a right to speak about autism if we appear a certain way — like so called “higher functioning” — which is a term we ask you to avoid, as it is inaccurate, not part of the medial diagnosis, and is ableist (I share about “functioning labels” below, too!). 

I’ve had people I’ve known for over 20 years tell me:

• Autism “sucks”
• We should do everything we can to prevent, cure, and treat it
• There is something “wrong” with me for being autistic
• Stop using autism as an “excuse” — that when things are hard, it has “nothing to do with autism” 
• I need to be stronger and I’m acting like autism is making me weak
• Since my diagnosis, I act like I can’t do anything and that I’m “worse” than I was before (no, it’s just that I am “out,” open, and honest about my autism now, so don’t spend excessive energy masking challenges, and instead take loving care of myself and organize my life so that I don’t struggle as much; which means I create boundaries) 
• I have a “problem” — and so does my daughter
• I’m ridiculous to ask for acceptance AND support: I have to choose one or the other; not both
• I’m acting like I’m a victim (I don’t believe I’m a victim at all; I’m proud of my autism! That doesn’t mean I will not acknowledge my challenges AND challenge our society) 
• Autism is just a fad, everyone gets a diagnosis now — it’s too much and all watered down, so meaningless
• I want to “coddled” and so do all the other autistic people 
• Everyone’s a little autistic 
• I am wrong when I say some language, terms, philosophies, and organizations harm my community 
• My autism is a different “kind” of autism from those who are non-speaking, so don’t have any room to speak about autism when others are referring to “severe” autism (there aren’t different “kinds” of autism; there are varying degrees of support needed. There are many autistics who have co-occurring conditions. Some of these co-occurring conditions require significant support.)
• That I don’t “look” autistic, so there’s no way I could be (I have a professional diagnosis that required rigorous testing)

 

What I have experienced is rather minute in comparison to many advocates who have been doing this work much longer than me. I’m a newbie.

Yet, we advocates talk to one another and share distressing stories about not being heard, validated, respected. 

We beg to be listened to, to be included in discussions, in diagnosis tools and methodologies, in research. We ask that when we feel harmed by certain “treatments” or philosophies, that others care about our voices. 

We ask that therapists, families, communities, educators, and doctors listen to us … since we’re the autistic people. The real “experts.” But … many don’t.

It’s really strange and infuriating. I simply don’t understand why an entire group of people are actively ignored. It doesn’t make any sense to me.

And I know this doesn’t happen only in my autistic community, but with BIPOC, other disabled communities, and many other marginalized groups.

Why we, as humanity, don’t take our cues from and listen to communities of people who actually live with a certain experience, is beyond me. It defies any logic.

So … it’s a big deal when two people, in one week no less, after three years, ask you about autism.

It’s a big deal that you’re here. Reading this.

It shouldn’t be, but it is.

It’s a really, really big deal. So, thank you.

 

I must say…

My beloved partner is an amazing ally; he already knew some information about autism before he met me because of work he does with youth. He listens to me, daily, talk about autism and he reads what I write. He’s done some research. He’s that guy. I’m grateful.

(And I wouldn’t be with anyone who wasn’t this way!)

 

So … this brings me to today’s little guide

If you’re still reading this you must be somewhat intrigued by autism. Maybe you just don’t know where to start. Maybe you have learned about autism because you’re an educator … but realize you haven’t actually listened to what autism is from autistic adults. 

Below is your step-by-step beginner’s guide. 

All the information shared comes from a strength-based, neurodiversity model of autism … this includes the social model of disability and neurodiversity as a paradigm and philosophy. 

In the guide, I suggest you learn about neurodiversity; but until you get to that section, just know that a strength-based neurodiversity model of autism means:

no fear, no shame, no message that says we need to be afraid of autism epidemics or that autism is ruining people’s lives.

It means we honor our strengths and culture as autistic people, knowing that we simply have a different neurology that shapes the way we see, perceive, and experience the world.

Autism is an identity that is interwoven into the very being and essence of who we are; we are not separate from our autism.  

 

STEP-BY-STEP GUIDE TO LEARNING ABOUT AUTISM

 

STEP 1: Autistic Self Advocacy Network (ASAN) and Autistic Women & Non-Binary Network (AWN)

These organizations are autistic led and operated, which is very important. It means they are listening to and elevating autistic voices … something that many larger nonprofits and research agencies do not do. It’s also something that the education, medical, and diagnosing systems seem to ignore. 

This is why many, many autistics ask that you do not support Autism Speaks.

ASAN’s position statement:

https://autisticadvocacy.org/about-asan/position-statements/

Explanation of autism:

https://autisticadvocacy.org/about-asan/about-autism/

Visual comic that explains “The Spectrum” by Rebecca Burgess and published on The Art of Autism 

 

STEP 2: Agony Autie (Sara Harvey)

She is a powerful, well-known self-advocate who shares a lot of information and education about autism to non-autistics and autistics alike.

Her amazing YouTube channel:

https://m.youtube.com/channel/UCN9fwImPnx16e8-eThlKCWQ

This particular video is a great one to start with:

https://m.youtube.com/watch?v=ZeQxSdEpi7Y

This is one of her videos about female autism:

https://m.youtube.com/watch?v=sW3lbehEH_Y

 

STEP 3: The Thinking Person’s Guide to Autism

Their massive list of resources:

http://www.thinkingautismguide.com/p/resources.html?m=1

This is one of their great articles about Autism Awareness Month (April):

http://www.thinkingautismguide.com/…/autism-acceptance…

 

STEP 4: Follow #actuallyautistic, #askanautistic, #doilookautisticyet, and #neurodivergent hashtags

(do not use these hashtags unless you’re autistic)

 

STEP 5: Identity-first language

A big thing to understand is that many autistics are powerfully linked to their autism identity. You don’t “have” autism. You’re autistic.

Some auties/autists (these are terms we use to describe ourselves as autistics) may use other language to identify themselves; honor their choice, even if it’s different from what I’m mentioning above. Basically: respect what autistic people have to say. 

And, it’s important to note that many of us aligned with the neurodiversity movement and autism advocates, prefer being called — and identify as — autistic. This is because we believe this is not separate from who we are, but beautifully entwined with our entire being. You cannot separate our autism from us as individuals.

We do not believe autism is only a “part” of us.  We do not believe that autism only shows up sometimes, in certain circumstances or only when we’re stressed. We believe that autism shapes how we experience the entire world, thus ALL of our experiences.

To go one step further, we recognize that we are a culture … so our autistic identity is part of our healing and our sense of belonging with other autists and in the world. Here’s the thing: We find ourselves in other autistics.

We see we are not alone or that different after all … there are others who have experienced life similar to us and move in it in a similar way. We compare our strengths and challenges.

We share tools and strategies with one another. We lift eachother up.

In finding community with other autistic people, we find ourselves.

We become liberated and free to be who we truly are. We stop spending so much time and energy masking our experiences and begin honoring ourselves, our boundaries, and learn strategies of radical self-care and love.

We begin to feel we belong and are worthy of being here. 

This is extremely important because many autistic people have a very deep wound of feeling separate, of not belonging, of being misunderstood.

This contributes to our extraordinarily high suicide rate. Our life expectancy is 39 years of age. Suicide is our second leading cause of death.

So … when I say that cultivating autistic pride matters, understanding that we are interwoven with our autism and there are gifts and challenges with this — and when I ask you to accept this, see this, honor this, celebrate this — you are helping my community, quite literally, LIVE.

The Significance of Semantics: Person-First Language: Why It Matters by Lydia Brown 

Here’s a list of definitions we use in advocacy work by Lydia Brown 

 

 

STEP 6: Research the neurodiversity paradigm and movement; this is very different from the medical model of autism which uses fear and pathologizes autism.

Pathologize means to treat someone as abnormal, unhealthy, ill. Looking at us from this point of view hurts us … and it’s where the ideas of cures and treatment for autism comes from. 

Here are some to start learning about neurodiversity:

https://autisticuk.org/neurodiversity/

FB Live about the Neurodiversity Movement from Kristy Forbes — Autism and Neurodiversity Support Specialist (she’s an amazing advocate and teacher) 

What the Neurodiversity Movement Does and Doesn’t Offer — by Emily Paige Ballou in the Thinking Person’s Guide to Autism article 

Why I Don’t Hate Autism — by Shona Davison in the Thinking Person’s Guide to Autism 

Neurodiversity: A Person, A Perspective, A Movement?– by Debr Muzikar in The Art of Autism

https://en.wikipedia.org/wiki/Neurodiversity

https://www.disabled-world.com/disability/awareness/neurodiversity/

10 ways neurodivergence is shamed—by Gillian Giles in The Body is Not an Apology

Neurodiversity: Some Basic Terms & Definitions–by Nick Walker

Six Common Myths About Neurodiversity by The Autistinquisitor, Rishav Banerjee 

 

 

STEP 7: Avoid functioning labels (high and low functioning as these are ableist)

More Problems With Functioning Labels–by Amy Sequenzia in Ollibean

The Problems With Functioning Labels— by Finn Gardiner in Thinking Person’s Guide to Autism

What’s the Difference Between High Functioning and Low Functioning Autism?–by Romana Tate in AWN

You Don’t Speak for Low-Functioning Autistics–by Lysik’an

 

STEP 8: Learn about ableism and how it is systemic … meaning we’re all ableist and unpacking this

Here are some places to start:

What is Ableism?— Stop Ableism

Casual Ableist Language—YouTube, Annie Elainey

6 Forms of Ableism We Need to Retire–by Julie Zeilinger 

Center for Disability Rights

The Toxicity of “Autism Parent” Memoirs—by Shannon Rosa in Thinking Person’s Guide to Autism

15 Common Phrases That are Way More Ableist Than You May Realize—by Creigh Farinas and Caley Farinas in The Body is Not an Apology

9 Thing That Might Not Seem Ableist But Actually Are—by Wendy Lu in Bustle

Ableism: Why Autism Moms Need to Stop Doing This—A Day in Our Shoes

 

Let me know if you find these resources useful.

In the future, I will post:

• my favorite autistic advocates (advocates who are #actuallyautistic)
• a list of diverse autistics you should know (no … autistics are not just white men!)
• a flow of discovery for female-identifying individuals who are curious if they might be autistic, too
• books and additional resources — by autistics or supported by autistics 

Once again, thank you for being here … especially if you’re neurotypical or have a loved one who is autistic. If you’re a parent of an autistic person, I especially commend you. You went out of your way to learn about the neurodiverse model of autism … which is not what most parents are told about when their child receives a diagnosis.

Your willingness to learn about autism in this way could change your perspective on your loved one’s neurology, how they move in the world, and see them as someone who is simply different. Not less. Or wrong. Or in need of fixing.

And THAT can change the course of your loved one’s life so they feel whole, enough, and as though they belong. 

Sending love your way.