‘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.

Why I Reject Autism “Awareness”

Each year, the month of April has been designated as National Autism Awareness Month, and the date of April 2nd is World Autism Awareness Day. These events have been brought into being by various autism support organizations, such as the Autism Society of America; and they aim to promote awareness, inclusion, and self-determination for autistic people.

I’m preparing now for my social media feeds to fill up with messages exclaiming support by wearing ribbons, installing blue light bulbs, and telling feel-good stories about instances where a neurotypical person or group found a way to include someone with autism in their world.

I appreciate the inteScreen Shot 2016-03-29 at 12.44.12 PMntion these people have when they declare their appreciation. I know they mean well. But each year I grow increasingly uncomfortable with the disconnect between these messages and the true understanding of what it means to have autism in one’s life, whether that is yourself or someone you love.

First, the whole “Light it Up Blue” campaign by Autism Speaks is a branding campaign aimed at serving that organization, and not a cooperative effort at true understanding. Autism Speaks has spent multimillions of dollars to identify the needs of the autism community such as the lack of inclusion, the financial impact, and safety issues. But they spend nothing on direct support to the community. The say offensive things about autism (For example, “These families are not living. Merely existing.” – Suzanne Wright, co-founder of Autism Speaks). I appreciate their legislative advocacy work and the role they play in funding research; they also have some good tools on their website for identifying resources and understanding the diagnosis. But many autistic individuals have trouble identifying with Autism Speaks’ mission because of their funding choices and their focus on neurological “deficits”, “cures”, and the “global health crisis” that is autism, suggesting a lack of acceptance on their part of the community of autism.  Out of respect to those with autism who feel that Autism Speaks does not speak for them, I choose not to “Light It Up Blue”.

Next, let’s discuss the feel-good stories. You know the ones… maybe the popular high school girl invites her autistic classmate to the prom (here’s one of those stories, and here’s another, and this one from a few years ago; and here’s one about homecoming, it’s evidently pretty trendy to do this). I also see stories about autistic teens being allowed to play in their first organized sport—usually the last game of the season, or the last few minutes of a game when the outcome is already clear—and to everyone’s surprise or as a result of their collusion, they score (read some of these stories here or here). These tales, while enjoyable to read, are also patronizing. They are only news because of the assumed inability for autistic individuals to access their world fully without neurotypical peers making exceptions to their usual choices.

Here’s the reality of autism. In the last year alone, my experiences parenting a child with autism have included the following:  Sitting on the floor in Target for almost an hour while Cheeks screamed, punched, and banged his head out of frustration and anxiety; and only one person in that time asked me if I needed help (it was not a staff member), although probably a dozen people entered the aisle and walked away in avoidance. Spending thousands of uninsured dollars on therapy, tutoring, and legal support to provide Cheeks with the same opportunities as his peer group. Studying special education law and individualized education plans for hours upon hours in order to provide Cheeks with the “Free Appropriate Public Education” (FAPE) guaranteed to him under Federal law, but which is not easily obtained without constant vigilance. And in recent weeks, I am investigating why Cheeks has not been invited to participate in field trips and other educational school activities offered to the rest of his grade level, which is leading to increasing isolation and self-containment in his school environment.

Awareness should have been established by now, so let’s agree that it’s not the right word for April at all. Acceptance and appreciation are the true goal. My wish for those goals is that we stop marginalizing our autistic students, peers, and community members. Stop seeing them as incapable or cognitively impaired. Realize that communication comes in many ways other than verbal, and seek to understand in those ways. Offer empathy rather than sympathy. Realize that their needs may be different from yours, but that a level playing field can be offered. Fair is not when everyone gets the same thing, but when everyone gets what they need.

If you agree with my goals, start by asking an autistic person or their caregiver something about their experiences so that you can begin your journey toward true undersScreen Shot 2016-03-29 at 12.11.40 PMtanding and appreciation. Ask me here, I’ll answer or I’ll ask Cheeks to answer. I promise you that autistic people and their allies are some of the most amazing individuals you will ever meet, because they face an intolerant world on a daily basis and usually keep their humor, hope, and joy of life anyway. A lot could be learned by most people from that, wouldn’t you agree? We welcome all of you into our community in the same way we want to be welcome anywhere. Come join us, we’ll leave the porch light on for you. But it won’t be blue.