5 Guidelines to keep in mind during Autism Acceptance Month

In a little over a week, Autism Acceptance Month begins. For some of us, the words, symbols and campaigns we see during this time remind us about the common myths people believe and mistakes people make when writing about autistic people. Here are five guidelines to consider.
 
Number 1

Many of us dislike people-first language.  

One of the first things many professionals learn about disability is that when talking about disability, you should always put the person first. However, many disabled people disagree. This is especially true (though not universal) in the autistic community. Many of us simply see autism as another part of who we are. If someone has to look past it to see us as a person, we have to wonder if they really see who we are at all. After all, women and Americans can both be people without being “people with femaleness,” and “people with United States citizenship.” So why must we be “people with autism?” 
 
Of course, if you’re talking to a particular person, it’s always best to ask them their preference. Some people with autism really do prefer person-first language. For that reason, I often alternate terms when I write. Another phrase that can sometimes work as a compromise is “on the autism spectrum.”
 
Number 2

We’re weary (and wary) of awareness campaigns. 

Every April, parent- and professional-led autism charities ask their supporters to spread awareness by lighting buildings and monuments up blue, wearing blue clothing, and pinning puzzle piece lapels to their shirts.
 
This does nothing to address the very real practical issues that we face. Instead, the substance of these campaigns more often spreads fear and promotes harmful stereotypes. Autism Speaks, the organization responsible for the Light It Up Blue campaign, describes the current generation of autistic children, adolescents, and young adults as a public health crisis and burden on families and governments. Over the long history of the puzzle ribbon, it has often been associated with a belief that autistic people are missing pieces, which must be found so we can be made whole. With this context, many of us see puzzle ribbon bumper stickers and blue lights on our city’s landmarks as signs of hate, not support.
 
Number 3

Nothing about us without us.

It is not uncommon to see human interest stories about autism where parents, teachers, speech therapists, and even the school janitor all share their insights on an autistic person and what autism means for him or her. It often seems that the only person who doesn’t get a word in is the subject of the article! The problem here is that nobody is a mind-reader. I’m sure everyone reading this has experienced your parents making mistakes about your thoughts or opinions. Autism doesn’t change that. 
 
Not every person with autism will be able to respond to interview questions. However, many who could are simply not asked. Others can speak or write, but struggle to answer questions in real time. For these people, simple accommodations like providing written interview questions ahead of time can make a huge difference!
 
Another common error is to assume that no autistic person will ever read an article about autism. Writers may say we are “unlike you and me,” or “just like you and me,” but only rarely are we included as part of the “us” that makes up the readership. The truth is, there is nowhere where you can safely assume that none of us are present. Autism is an extremely variable condition, where many different combinations of traits can all lead to the same diagnosis. Whatever your audience is, chances are at least a few of us are already in it.
 
Number 4

We want to live well, not become normal. 

Many autism interventions focus on making autistic people look more like non-autistic people. Common therapy goals include increasing eye contact and reducing unusual movements.
 
These aren’t priorities typically selected by autistic people ourselves. More common priorities include reducing the impact of some of the downsides associated with autism, such as anxiety and sensory hypersensitivity; learning skills needed to succeed in education and find employment; and accessing supports and accommodations to assist with daily living.
 
There may be intolerable costs associated with a focus on achieving an appearance of normality. Eye contact may feel painfully intense and intrusive, or it may be impossible to simultaneously make eye contact with someone and understand their spoken words. Staying still may require a vast amount of attention, leaving little left for learning. Hand-flapping may be an expression of joy, or a way to regain a sense of where one’s body is in space.
 
Those of us who have either made ourselves look more normal or achieved some of our goals are often told we have “overcome” autism. This is misleading. We have often had to confront and overcome prejudices, or put much more work into learning a skill that comes more easily to others. We may struggle in areas of our lives that you don’t see. This can be a good enough story on its own, with no need to resort to tired cliches about battling and overcoming autism.
 
Number 5

Functioning labels are uninformative and harmful.

When you’re short on words, quick phrases like low- and high-functioning can be tempting. However, these phrases mean so many different things to different people that they’re not very informative. Someone may seem high-functioning to one person because they can speak in full sentences, and low-functioning to another because they aren’t included in general education classes. Someone else may be unable to cook, drive, or navigate public transit independently, but have graduated from college with honors. Where do they fit? 
 
Too often, the answer is that functioning labels are used to write off everyone. As Laura Tisoncik said, “The difference between high-functioning autism and low-functioning is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored.”
 
A better option is often to simply be specific. Think about what you mean when you want to use one of those shorthand terms. If you mean that someone cannot speak, or needs assistance managing finances, or has frequent seizures, it may well be better to just say that.
 
~ Kit Albrecht
 
Kit is a member of the AssistiveWare Support Team, and an autistic adult. Her work is guided by the recognition that disability is a natural part of the human experience.

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Comments on
"5 Guidelines to keep in mind during Autism Acceptance Month"

Sarita María's picture

What a brilliant post! <3

Kit - AssistiveWare's picture

Thank you!

Jessica Yeatman's picture

Point 4 was interesting. As a Mum of an autistic and ADHD boy (who is gorgeous and amazing) I suppose I do try to teach him 'normal' behaviours, such as using people's names and saying hello etc. He is only 7 so stimming etc isn;t seen as that odd, and I've not yet though about trying to get him to make eye contact, but that would probably happen in time. However, your comments made me think about an ex-boyfriend, who was left-handed as a toddler, and made to switch to right-handedness at primary school (in the 60s). He has never been good at writing or literacy, and I have since read that this old-fashioned practice could cause people serious problems with their academic development - which he seemed to bear out. Yet nobody these days would ever dream of telling a child they shouldn't be left handed! Lefties are about 10% of the population - not dissimilar to people with ASD perhaps? - so let's hope the acceptance of ASD differences becomes equally as widespread very soon!

Kit - AssistiveWare's picture

Glad to hear I got you thinking about this!

I do see things like saying "hello" and using people's names as different, depending on the context. Both can be very useful for getting someone's attention before you start talking to them. (I have seen some times where it goes beyond what really makes sense, though, such as teaching a kid to say "Hi" to everyone they pass when that's not even typical behavior in their community.)

It also always depends on why it's difficult. There's a difference between teaching a new skill (very important!) and forcing someone to do something which will always be difficult and draining. Of course, that can be very hard to know!

I share your hope. We've got a long way to go, but I do think there's been progress.

Rachel Snyder's picture

I think one important thing to keep in mind is that there's a difference between instructing a person about certain behaviors and trying to force them on someone. I think it's perfectly acceptable to tell a child that a lot of people prefer you to make some eye contact with them, to let that child know that you're happy to help them work on it if they decide they want to, but also that it's completely fine if they don't. I'm a 34-year-old autistic woman, and there are plenty of adjustments I've chosen to make so that I appear more typical in public. And I feel empowered by making these adjustments because they were my choice. When I've had other people try to force behavioral changes on me, it left me feeling violated and alienated from that person.

Kit - AssistiveWare's picture

I totally agree. I wish people who taught social skills understood that better. Also, it can be worth teaching things like "When you apply for a job, interviewers will expect you to make eye contact. It can be useful to learn how to look like you're making eye contact." However, that needs to be done without implying that not making eye contact is fundamentally bad. I wonder if guides aimed at recent immigrants take a more productive approach here.

Celeste Esau's picture

Thanks for sharing! Many of my struggles, gripes and pet peeves.
Hope it helps :)
Praying for relief

Kit - AssistiveWare's picture

Thank you! I'm glad to hear this resonated with you. :)

Randa Habelrih's picture

YES, YES, YES!!! I thought I was the only one thinking what you just stated: "Every April, parent- and professional-led autism charities ask their supporters to spread awareness by lighting buildings and monuments up blue, wearing blue clothing, and pinning puzzle piece lapels to their shirts.
This does nothing to address the very real practical issues that we face."
I have just put up a petition on Change.org asking the UN to change the name of Autism Awareness Day to Autism INCLUSION Day. It may seem like mere semantics, but words are powerful!!! Please sign and share...The link to the petition is:
https://www.change.org/p/ban-ki-moon-the-secretary-general-of-the-united...

Lee Hiller-London's picture

Excellent Post! Thank You for sharing this important information.

Kit - AssistiveWare's picture

You're very welcome!

Mary McDonald's picture

ALL should read this. Remember these are human beings and they need our support and help. So do the families of autistic children, especially single parents that have no help!!!!!!!!!!-

Gill James's picture

thanking you

Tabitha Miller's picture

I always saw the puzzle pieces especially the multiple colored as representing the idea that all peices of verying shapes, sizes and colors fit together to form the complete picture. By leaving out those pieces in Autistic community society can never be complete. The message is that we need to include all the peices.

Thomas Sutcliffe's picture

Excellent post. All of your five guidelines are very important, but I personally (as an #actuallyautistic individual) award pride of place to number 3: "Nothing about us without us".

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