Communication is a Human Right

Readers of this blog know that Cheeks spells his communication. He does have some speech, but it’s unreliable; his purposeful interactions and access to education come from his use of a letter board. This has been the single most effective support we have found for his autism, and having it has improved the quality of life for our entire family, not just for him.

But, you may also have seen me mention that not everyone accepts the methodology of spelled communication that Cheeks uses. Some in the autism community insist that it’s not “real,” and that the things communicated using these methods are merely a result of influence on the part of the communication partner. That dismissal of Cheeks’ abilities is insulting. Stephen Hawking initially spelled to communicate, but the authenticity was never questioned. What’s the difference? The presumption of his intellect, that’s what.

My child is entitled to, and capablScreen Shot 2018-07-17 at 5.18.39 PMe of, the same interaction and education that yours is. But he is not provided with it the way that yours is — based purely on an outdated, pejorative assumption that he doesn’t have the competence.

We’ve (mostly) adapted to that reality by homeschooling, and by advocating for and with Cheeks whenever we can. He is receiving an education, participating in his own health care decisions, and gaining a sense of agency for himself at an age-appropriate level.

But all of that is at risk of taking a huge step backward.

Recently, the American Speech-Language-Hearing Association (ASHA) issued two proposed position statements about spelled communication which expressly reject its legitimacy, and state, “…information obtained through the use of [these methods] should not be considered as the voice of the person with a disability.”

ASHA is a credentialing and standard-setting organization. If these position statements are adopted, what little access to letter boards currently in place will be removed. Acquiring an education, or even gathering research about best practices, will become non-existent. Thousands of voices will be silenced.

That is not acceptable.

Read more here:  Quick Facts About Communication Choice

Cheeks Speaks, Vol. 2

Screen Shot 2018-03-16 at 3.20.54 PM

Today, Cheeks answers more reader-submitted questions. The words in capital letters were spelled by him, using a letter board to point to each letter. It is a low-tech form of augmentative and alternative communication (AAC), that allows for us to access his cognitive abilities while accommodating his motor planning challenges.


“How would you like people to approach you and talk to you/how do you think people should approach and talk to anyone nonverbal?”*

YOU SHOULD MAKE MORE OF AN EFFORT TO SPEAK TO US HOW YOU SPEAK TO MOST PEOPLE. BECAUSE MOST OF MY NICE FRIENDS WITH AUTISM REALLY DO KNOW WORDS EVEN THOUGH WE DON’T SPEAK.

“What do you love most about yourself?”

I LOVE MY SENSE OF SEEING MORE STORIES IN EVERYTHING.

I also followed up with this, which was my own question to him and not submitted by a reader: “Lots of people are seeing these posts on the blog. Do you have anything you want to say to them?”

MY MIND IS CHANGING THE WAY THE WORLD SEES NONSPEAKING PEOPLE. THANK YOU FOR LISTENING.


Have a question you’d like Cheeks to answer? Please feel free to post in the comments below, or via the “Contact” link at the top of this page. You can also ask follow-up questions to anything previously answered.

* The commonly used terminology used to describe a nonspeaking individual is “nonverbal.” We prefer the term nonspeaking, for reasons explained here.

 

 

Cheeks Speaks, Vol. 1

IMG_9587
The author with his letter board.

As promised, I’m handing over the soapbox to Cheeks from time to time. We have a list of questions posed here and on Facebook, and he chooses which one we will tackle from a question jar. I read the question(s) and he spells his response.

A few notes to understand about this methodology:

All text written in capital letters is Cheeks’ originally written material, because he spells on a laminated board that has all capital letters. At some point in the future if he begins working on a keyboard, that text will appear exactly as he enters it.

Communication partners (in this case, me) never edit or correct a speller’s words. He has spent his whole life not being able to share those words, and so I honor his original thoughts by leaving them exactly as he spells them.

Finally, his answers may be short but they represent a lot of work. It takes enormous mental energy for him to execute purposeful movement, such as point to the right letters with accuracy. I am sure that readers of this blog will see his answers become lengthier with practice.

And so, without further ado:


This question was posed on Facebook, by Kristi E., who asked: “What is something you want to be doing by, or in, the year 2020?”

I WOULD SAY MY AUTISM DOESN’T STOP ME VERY MUCH REALLY.  MOST QUIET BOYS WANT THE SAME THINGS AS OTHER BOYS. TWO YEARS FROM NOW I WANT TO STILL BE LEARNING NEW THINGS.

Our friend Kurt R. (the creator of Cheeks’ pseudonym) asked, “Do you like being called Cheeks McGee?”

IT’S NOT SO BAD.

And lastly, Brandie S. asked about her favorite number. She is aware of Cheeks’ synesthesia and wanted to know,  “What color is 47?”

FOUR IS WHITE. SEVEN IS DARK BLUE. I SEE DIGITS AS SEPARATE COLORS.


He loved being able to do this and I’m sure he will want to do more going forward. We have several questions in the jar already, but we’re always looking for more. Feel free to post comments here or via the “contact” link above.

 

 

Handing Over the Reins

It’s been a while since I’ve posted. Cheeks and I have been working hard to get better at our spelling to communicate, which is how his (and our) world has opened up. That has taken priority over my musings about autism parenting.

I’ve always been clear that what I write here is my story, not his. I don’t presume to know what it’s like to be autistic, and it was not my goal to represent that here. I also believe that nothing about him should be discussed without him, so everything I did write about Cheeks was always with his knowledge and permission.

With that in mind, Cheeks has indicated to me that he wants to use this platform to start teaching the world about autism and the related misconceptions many carry about what it means to be autistic. So, in the coming weeks I will be handing the reins of this blog over to his words, answering questions you have asked.

This may be sporadic. As his communication and regulation partner, it’s my job to protect his clear thinking by not pressing too hard on the emotionally difficult things. But there are also moments when he’s in the zone with his spelling energy and I know that when that happens, he would like to take the opportunity to offer his first-hand experience with autism to the world.

We’ve already begun gathering questions from friends and family, and we now open it to all readers here. What do you want to ask my wise young man about autism (or about anything else)? Use the comments section on this post, or send a private message via the “Contact” link above.

We look forward to hearing from our community!

The Single Hardest Thing About Homeschooling

As you can probably imagine, there are many things that are hard about homeschooling. But they haven’t been the things I expected them to be before I started.

At first, I thought the hardest part would be making the decision to do it. That is so often the hardest part about anything, isn’t it? But once the decision is made, the rest seems to fall into place, as if the very idea of change was what was providing resistance in the first place. But, it was not a terribly hard decision. Cheeks was deeply unhappy in public school and growing more so every day, so naturally we had to choose to change that.

Then, I thought the hard part would be figuring out what to teach him. I guess that was a little hard, because I had to choose from a lot of options. There are literally hundreds of homeschool curriculum packages, and too many good books and other tools to count. I certainly wasn’t left trying to figure it out for myself. Once I realized that anything he learned would be more than he was learning while in school, it became much easier. I could pretty much start anywhere and allow ourselves to follow his curiosity. And the benefit would be better than just learning, it would be giving him the chance to love learning.

 

IMG_7717

Cheeks getting “socialization” at the school bus stop he used for six years. You can probably see why I’m not too concerned about finding a homeschool substitute for this.

One of the hardest parts has definitely been the reactions I get from others. All of a sudden, everyone seems to be fixated on his socialization. It’s all I hear about from strangers and acquaintances when they first hear that we homeschool. I suspect these people who are so concerned have likely never bothered to reach out to a disabled person to be their friend, or gone into a self-contained classroom to see how much socialization disabled students in the public school setting are getting there (read more about that here). You would think that after all these years as an autism parent, I would have grown a thicker skin to the advice and judgments of strangers, but that’s only true to a degree. Long ago, I stopped being invested in their stares and comments, but you never get over it all the way. Nobody wants to be the odd one out. (Note to all: Please do not ask a homeschooling family about how their child is getting socialization. Just don’t. The question is inherently condescending. Thankfully, this question doesn’t come from my friends, but from casual onlookers.)

But the single hardest thing is the only one that surprised me. If you’ve read this far, maybe you see the common thread in the examples above: it all comes down to what the school system wouldn’t or couldn’t do to teach him. I am a lifelong fan of public schools and the teachers in them. My mother was a teacher, and I received an excellent education in public schools. But this homeschooling experience and Cheeks’ spelling to communicate has really broken my faith in the public school system for all but the most mainstream, typical learners.

As a taxpayer, I agree that the school system shouldn’t immediately embrace every new methodology that a parent has decided to try. They are already a system of infinite need and limited means, and there isn’t money or space for every unproven idea. But as a parent, I was shocked that the administration wouldn’t even observe a session. That tells me that they are more interested in adhering to their system, regardless of whether it might be failing him. And the only way to tell themselves that they weren’t failing him was to put the burden on him and assume the problem was because he couldn’t learn.  These people, who at one time I truly believed wanted the best for him, didn’t want to even see what he could do if it didn’t already fit their expectations. Cheeks’ classroom teacher was even told he was not allowed to hold on to a book I had loaned him, and was told to turn it over to a supervisor until I asked for it back. The school district banned a teacher from having a book about education. Let’s just sit with that one for a moment, shall we?

 

Screen Shot 2017-09-11 at 12.59.03 PMThe implications of this revelation have been enormous for me. I’m sad that Cheeks’ good teachers — of which there were several — have been denied seeing the daily “lightbulb” moments he has. Witnessing those moments are why many teachers enter the profession! I’m offended that anyone is able to dismiss Cheeks as unworthy of a true education; or who dangerously assumed him to have a cognitive disability (which is not part of any autism diagnosis) based on his inability to speak or maintain motor control. Because make no mistake, that is exactly what they were doing when they refused to make room for possibilities. And I’m now also questioning the advice I get for Cheeks’ older, neurotypical brother, because I’ve seen how the system can be so far off the mark. And to think, this entire system exists to teach our kids new things. The level of contradiction between their words and their actions is stunning.

It’s hard to change everything you once believed to be true. I’ve been faced with it more than once, so I empathize with the challenge I’m placing before the school system. Where I draw the line is their refusing to try. They wouldn’t even open their mind to the possibility that Cheeks could do what he was doing, and while my head can understand the challenge they faced, my heart can’t accept the result.

Mark my words: ten years from now, the people and systems that refused to presume competence in their students will be on the wrong side of history. When that happens, I will not be sympathetic toward the ones that had opportunities to do better but refused them.

 

 

 

 

A Word on Words

The words we choose create understanding, and in turn they build connections and lead to community. They are most people’s primary means of interacting with others in the world.

I’m a word nerd. I love language and the ways that different words can be used to convey precise meanings. I try to choose my words carefully and to remember that they represent me, my character, and my intellect.

For those reasons, I am changing some of the terminology I will use to describe Cheeks, his autism, and other autistics like him. It doesn’t come from a need to be politically correct, it’s about being both accurate and respectful in the way I use my words.

I will not say that Cheeks has “special needs.” Instead, I will say he is disabled. His needs are no different than anyone else’s needs. He has a need to be loved, educated, and understood. Nothing about that is special, it makes him exactly like everyone else. Describing him as having special needs is suggesting that his needs are outside the norm. He does however, have a communication, sensory and motor planning disability that requires support in order for him to fully access the world around him.

Perhaps just as importantly, having “special needs” does not provide him with any of the legal protections he may require in his lifetime. Being “disabled” does.

I will not say he, or any other autistic, is “nonverbal.” Instead, I will say he is unreliably speaking, while others may be nonspeaking or minimally speaking. The word “nonverbal” means to be without words. If Cheeks or anyone else is described as nonverbal, that means he has no capability of understanding language. Let’s say you had laryngitis and suddenly couldn’t speak. Does that mean you no longer understand when someone talks to you? Of course it doesn’t.

That’s because the part of the brain that controls speech production (Broca’s area) and the part of the brain that allows us to comprehend speech (Wernicke’s area) are separate, and represent two completely different neural functions. They aren’t even the same type of function, one is motor and the other is cognitive. Calling someone “nonverbal” because they can’t speak is both incorrect and derogatory. Remember when we called people who could neither hear nor speak “deaf and dumb?” That’s similar to saying nonverbal.

I will not say his autism is low- or high-functioning, or describe his autism with words such as severe, aggressive, or disruptive. Instead, I will discuss him only as the complex, multifaceted individual that he is, and I will use respectful language.

I’ve written more about high- and low-functioning here. It reduces a complex individual to a summation of how well they meet an arbitrary standard of normalcy. Even being placed at the perceived high end of that yardstick still means you are being publicly offered up for the world to assign a label to your capabilities.

There is also nothing about the adjectives above that someone would want used to describe their personality. Better to use the terms significant, complex, notable, compelling, meaningful, etc. The word used should be one that doesn’t insult him.

I will not call him “a person with autism”, I will say he is autistic. (For now.) This is another one I have discussed before, you can read that here. Some segments of the disability community do prefer person-first language, while others prefer identity-first. Mostly, the autism community leans toward identity-first, or “autistic person.” But any community is comprised of individuals with differing opinions, and so it’s not a universal preference. Ask, if you can, what someone prefers. One day, when Cheeks has more open communication, I will explain the difference to him and ask what he prefers.

And lastly, I will not condemn those who use the words that I won’t (mostly). It’s not my goal to tell anyone they are wrong with the words they choose. I’ve used all of these terms at one time or another, some recently. My goal is and has always been to educate, and to represent Cheeks in the world as accurately as possible. I say “mostly”, because Mama Bear sometimes shows up when Baby Bear is being inadvertently disparaged.

Language paints a picture, and it’s important to me that his picture is true and authentic. For now, I am both his advocate and his voice; so I have to get it right even more for his sake than for my own. And I believe that as the accepted language changes, so will the world’s perception of our autistic friends and family members.

 

 

 

Sh*t People Say, Homeschool Edition

Want to see an awkward moment? Tell someone you’re homeschooling. Usually the response is a polite smile and nod, sometimes with wide eyes or a raised eyebrow. When questions do come up, this is what they have been:

“Why?”

It was never something I wanted to do, but the gap between Cheeks’ abilities and the education he was getting at school had become too wide. I advocated within the system for years to correct that, knowing that he was surrounded by people who wanted to see him succeed. But there was no getting around the fact that the system measured his success by teaching him to behave and learn the way other students do. I don’t think that will ever happen. And even if it did, at best we were looking at a lot of time, effort and emotion to get there. The likely result would be him aging out of school before getting the chance to learn all that his peer group did.

“How has it been going?”

For me, it’s like having a newborn baby again. I’m isolated, overwhelmed, exhausted and confused. But I’m also discovering a whole new relationship, I’m giving him something only I can give him, and there are many moments of immense gratitude. Cheeks is happier than he has ever been, and focused on learning instead of compliance.

“How do you know what to teach?”

There are many curriculum packages available to the general public, and numerous web-based educational resources. But for now, I’m not using a curriculum guide. I want Cheeks to enjoy the process of learning again, so I’m temporarily allowing his curiosity to take the lead. All I have to do (for now) is offer a variety of topics and see what captures his interest. I have confidence that anything he learns during this adjustment period is more than he would have in school. I’m researching curriculum packages and plan to start using one at the end of summer.

I’m not under the illusion that it’s easy to acquire the skills of a trained educator, but I also don’t have to learn how to teach all kids – I only have to learn how to teach mine.

“Did something happen that made you take him out mid-year?”

Yes, but it wasn’t a one big thing. It was several small things.

First, I tried to show Cheeks’ IEP team what he can do when provided with the right academic tools. I brought them videos, books and news articles regarding his method of spelling to communicate. There was some interest in learning more, but not much. The district-based administrator on his team wouldn’t even take a copy of one of the articles I brought, much less read it.

I also offered a demonstration of how Cheeks spells; provided by Cheeks’ and his therapist, and done at our expense. I was flatly denied, and told that such demonstrations are considered training and therefore are not allowed. Privately, I offered his teacher to come see it unofficially and on our own time. That was months ago and the invitation has not yet been accepted.

The last straw came from a behavior therapist on the IEP team. I had often reminded the group to interact with Cheeks in an age appropriate manner, and presume his competence to understand. When we got to the part of our meeting where we would discuss how to reinforce his preferred behavior, one of the team members described a suggested example of what that might look like. She said in a sing-song voice, “Yay! You had quiet hands, buddy! Good job! High five!” Once again, I kindly reminded her that he is on the back half of 11 years old. Did she think maybe he knows her expectations of him are low when she speaks to him like that? She replied, “I talk to all the kids in his classroom that way.” The fact that I didn’t face palm right then and there is a testament to my self-control.

Regarding the middle of the school year, Cheeks’ educational programming is largely dependent on his IEP dates. Those occurred at least once annually, sometimes more often, but were not scheduled relative to a school year; rather, they were planned based on the elapsed time since the previous meeting. We had just finished his most recent IEP cycle when the decision was made. Being in the middle of the school year suggests that we take into consideration things such as grade-level curriculum, field trips, project-based learning, standardized testing, etc. When you have a student who is not included in these elements of a typical school year, then “mid year” becomes an arbitrary guideline to follow.

In short: it was because when you finally figure out what you’re supposed to do, you want that to start right away.

“Will he get socialization opportunities?”

This question presumes that Cheeks was getting socialization at school in the first place.

He was in a self-contained autism classroom with two other students, who were also nonspeaking. The playground where he spent his recess was the fenced-in one reserved for special education and kindergarten classes, not the one where the other fifth graders were. He had an assigned table in the cafeteria at lunchtime, which he shared with only his nonspeaking classmates and two adults. If there was an assembly, he sat in a chair at the back with his teacher, not on the floor with other students, in case he made noise or movements that could disrupt others. He usually sat alone on the bus to and from school, and no one has ever invited him to a birthday party or play date. He did have some times during a typical week when he was included along with other classes, but it wasn’t much and it was not social time. So I’m not too concerned about taking all that away.

At home, he’ll get facilitated activities, outings with other homeschoolers, or even just trips to the community pool. That’s already more than he got in school.

“I could never do that.” 

I think when people say this, it’s code for a mixture of respect for my choice and an underlying suspicion that I’ve lost my marbles. I used to think the same thing about homeschooling. I didn’t want to have to do this. I never aspired to it, or believed myself called to it. In fact, I fought it as hard as I could. But if, like me, you were also faced with no other good choices… you would figure it out, too. I’m glad you don’t have to.

That about covers what I have heard so far. If you’re thinking something and I’ve left it out, feel free to ask. I promise not to make it awkward.

 

Keeping It Real

Something that has always been very important to me as I walk this path of parenting a child with autism is that I want to be authentic about what we experience. That means being willing to sometimes tell the hard stories, because the hard stories are still our stories, and there is no shame in them. Shedding light on the experience without embarrassment is part of acceptance. If I am going to ask for acceptance from others, I have to require it of myself.

But Cheeks’ communication difficulties means that he can’t always tell me what’s OK with him to share. I always tell him what I’m writing about, because I know he understands me. But we can’t have long, thoughtful conversations about what it means to have an internet presence, or whether he feels comfortable with people knowing some of his behavior. I can only assume that an 11 year old boy would want his mom to edit herself carefully about what she writes on a blog like this. Being respectful of him is one of the highest values I hold.

Unfortunately those two priorities are sometimes in direct opposition to one another. I want to share our difficulties, of which there are many, but I also want to protect my son’s privacy. In those moments, protecting my son wins. Every time.

Because of that, as you read this blog, you may sometimes be left with the impression that living with autism is easier than it is; filled with victories and discoveries, and peppered with amusingly awkward social situations. It can often be those things.

It can also be indescribably stressful. One study done by the National Institutes of Health measured cortisol levels of autism mothers, and found it to be present in levels comparable to that of combat soldiers, holocaust survivors, and parents of kids diagnosed with cancer. (Cortisol is a hormone released in the brain during acutely stressful events.) At any given time, autism parents may be thinking about our child’s self-injurious behavior (estimated to occur in 50% of individuals with autism), elopement (~54% of people with autism), interaction with law enforcement, seizures (possibly as high as 38% of people with autism), inappropriate trust of strangers, lack of personal safety awareness, inability to verbally communicate a name or phone number if lost, bullying (3x more common against autistic kids than their neurotypical peers), and more. Don’t even get me started on the many ways we have to fight for our kids to simply be offered the same opportunities in schools and communities as their typical peers, and the judgmental stares and comments from strangers about what they observe in us.

Screen Shot 2017-06-03 at 3.09.00 PMI’m not complaining, because I love Cheeks more than anything, and autism is part of who he is. But I am explaining that what you see here is not the whole picture, and with good reason. When the day comes that Cheeks has a fluency level to communicate his own story, I will help him with that any way I can.

For now, think of us as an iceberg, and I’m only able to show you the part that sticks out above the water. I hope you understand why that is, and that you always know there is more to our story. For us, “keeping it real” doesn’t mean full disclosure, it means remaining true to our values.

Cheeks and I still welcome your questions about him, our family, or our experience with autism. Even if we choose not to be completely transparent in our answer, we’d rather you ask than wonder.

 

 

Let’s See Who You REALLY Are…

I have recently started homeschooling Cheeks. The main reason for this is that the public school system refused to accommodate Cheeks’ spelling to communicate, because it is not yet an evidence-based academic methodology. This created numerous disparities in what they believed to true about his cognitive ability; and in turn, how they taught him.

We know that Cheeks is intellectually competent to be just what he is, 11 years old and learning at a 5th grade level. In school, he was being taught at approximately the 1st or 2nd grade level based primarily on his inability to speak or write correct answers. His most recent work samples sent home last month had him writing the words hot-pot-robot; answering reading comprehension questions from a three sentence paragraph; and doing two-digit addition and subtraction.

In our lessons at home, we are jumping in at a 5th grade level in most subjects. Core subjects such as history, science, and language arts can all be taught starting with any topic; and presenting the lesson at a 5th grade level of complexity. As it turns out, Cheeks loves to spell long, challenging words: his recent vocabulary in home lessons has included “hieroglyphics”, “archaeologist”, “xylem”, and “anesthesia”, among others. (Note: I was a state-level spelling champion in sixth grade, but spell check had to correct two of those words for me as I typed this post. He got them right on the first try.)

The exception in terms of the difficulty level I present to him is math, because the concepts build on one another as you progress through the subject. If you’ve never had 3rd grade math, you can’t really jump in at 5th grade. So for that area alone, I was preparing to teach at a more basic level. I spent the last three weeks researching methods to teach math facts in a fun way: one that would allow him to learn what he needs to know but did not teach it in a way that would talk down to a 5th grader, who in ordinary circumstances would have learned them much earlier. I bought and borrowed books, read lesson plans, and studied everything I could find.

Screen Shot 2017-05-20 at 2.27.07 PM
Me, planning to teach Cheeks’ his multiplication facts.

Two nights ago at bedtime, on a whim, I decided to ask Cheeks if he already knows his times tables. He answered yes. I was surprised, but his speech can often be unreliable, and he says things that are not what he means to say. So I didn’t know if his answer was intentional. The next morning I still had all my books and lessons ready to go, and we sat down to start learning multiplication.

I warmed up his motor skills by giving him some of his beloved long words: “multiplication,” “accelerated addition,” and “mathematical.” I switch to the number board and this followed:

Me:  What’s 4×4?
Cheeks:  (body language reflecting total confidence)  [points to 1, then 6 on the board]
Me: (thinks to self “What the…? Must have been an easy one for him.”)  OK, what’s 7×5?
Cheeks: [points to 3, then 5]
Me:  (???????)  What’s 9×9?!
Cheeks: (looks at me as if I have three heads)  [points to 8, then 1]
Me:  ~laughs like a giddy little girl~
Cheeks: Can I be all done now?
Me: (still giggling)  Yes buddy, you can be all done. You’ve earned the day off. I’m sorry I didn’t understand when you said you already knew all this.

Screen Shot 2017-05-20 at 2.25.02 PM
Me, after realizing I didn’t have to teach him.

It felt a little like that moment in the Scooby Doo cartoons when the characters say, “Let’s see who you REALLY are” before pulling off the ghost’s mask to find Old Man Jenkins up to a nefarious scheme.

I have never been so happy about the massive waste of my time all that lesson planning turned out to be. And I shouldn’t have been surprised by this. I am being reminded every day of how much he does know, and after all, he told me he knew this too. I just thought since it had never been expressly taught to him, how could he know it? There should be a name for how a person feels when they are both surprised but not surprised. Maybe I will ask Cheeks what that word is, he’s clearly more likely to know it than I am.

In the meantime, I caution those reading this to assume that he’s extra-smart in math simply because he’s autistic. Maybe he is, or maybe he’s not. That assumption is based on stereotypes that have actually inhibited our understanding of him until now, so let’s reject those. Better to presume his competence, provide his tools, and then get out of his way while he shows us who he is.

Come to think of it, that’s pretty much what all parents and teachers should do for their kids, autism or not. Imagine that.

Screen Shot 2017-05-20 at 2.35.06 PM

‘Tis the Season

A story came across my timeline on Facebook this morning about Toys R Us stores in the United Kingdom* planning a “quiet hour” of shopping for individuals on the autism spectrum (see the original story here). I expect that we’ll see more stories like this each holiday season, beginning with the stories I have already seen about Halloween accommodations and continuing through the annual autism-friendly Santa visits. I am both thrilled and frustrated by the growth of these events.

You’re probably wondering why I would feel any frustration over what is obviously a well-meaning plan for inclusion, and part of me would agree with you. I believe that any effort which involves adapting to others’ differences and allowing them to have the same experiences as their neurotypical peers is a good thing. Every story like this raises awareness of the needs of some of our population. Notice however, that I am not saying it necessarily serves the needs of the autism population.

For some, it does; but not for all. It has been said that if you’ve met one person with autism, you’ve met one person with autism. Making the connection between sensory needs and autism, while understandable, is also reductive. For example, Cheeks is hypo sensory in some aspects and hyper in others (hypo sensory being under sensitive to stimuli and therefore one seeks sensory input, hyper sensory being overly sensitive and one avoids it). Creating an environment for him such as the one described in this article would be both a hit and a miss.

The larger issue, in my opinion, is making any assumptions about the needs of someone with autism. It’s true that there are diagnostic criteria for autism, and so a certain set of expectations about the needs of these individuals is fair enough. But it’s worth considering too, that there are many people with sensory needs who are not on the autism spectrum, who would be well served by this offering but don’t read further than the word autism in the title.

quotescover-jpg-30Much like not everyone with a physical disability needs a ramp, not everyone with autism needs low lighting and quiet. It’s incumbent on a host such as Toys R Us and others to make the offer, but then to allow the potential audience to self-identify whether it meets their need. Calling it an autism event sets it aside as different and separate, which is the opposite of inclusion.

True inclusion will come when we see the diversity of any population and address varying needs, rather than labeling it and by so doing, inadvertently demonstrating a limited understanding of the need. When those within the autism community create an event such as this, it’s called “sensory friendly”, not specifically for autism. Sensory friendly is created to address both hyper sensory and hypo sensory elements.

I truly applaud the people and organizations that show a heightened awareness of neurological diversity. I will also continue to advocate until this is the rule rather than the exception. Toys R Us and others are making great first steps.

* This event is currently only planned in the U.K., Toys R Us has not yet committed to doing anything similar in the United States or elsewhere.