Tuesday, October 11, 2016

Why It's Still Okay to Hate People with Disabilities

I want you to read this.

I want you to read these words and see what living in this world is like not for individuals with disabilities, but for everyone else. I want you to see how your world shapes you over time, in subtle and overt ways, to see us.

The comments above were found on a post of a customer service stories website, in response to a story about a grocery store bagger with Down's syndrome. What shocked me wasn't that someone would so openly admit to hating and fearing individuals with disabilities, but that there was another comment below it echoing similar sentiments (not pictured). Had these commenters said that they hate black people, or gay people, and believe they should be wiped out, there would have been tremendous outrage. But threats to the lives of disabled people are met with barely a shrug.

It is comments like these that enable people to feel this way: One person voices their thoughts, and it empowers the many who are silent to speak up in agreement. Initial hesitation disappears in the face of validation, and soon these voices grow louder, bolder, united in their common fear of anyone who is not like them. Their voices become a roar, eyes large and furious, teeth gnashing, forcing their way into the minds and hearts of those who live with disabilities.

As a young autistic girl, the only thing that made life more difficult than thinking my peers hated me was how I hated myself. No one had to tell me that all disabled people should be wiped out; I came to believe it myself, with thoughts of suicide beginning when I was in the fourth grade. For years, I eschewed the label of "autism" and clung desperately to Asperger's Syndrome, believing it somehow made me better than those who were more affected, more "obvious." I didn't want to be perceived the way I knew they were: As being stupid, retarded, deficient.


I know now that my feelings were borne not out of hatred, but from incredible self-loathing. I have confronted the prejudices that I never intended to have and overcome them. Obvious or not, "high functioning" or not, we are all the same in the eyes of those who feel as these commenters do. They make assertions about who we are, what we love, how we live, the very core of our souls based on the category they place us into: "Acceptably" (not visibly) and "unacceptably" (visibly) disabled.

I want you to read these words.

I want you to decide if they sound like something you've ever thought, or said when you thought no one who would care was around. I want you to think about disabled children and adults who have suffered and continue to suffer because these attitudes are held by people in positions of power. I want you to understand that our pain is not the price for your comfort.

You can ignore your prejudices and the damage they cause, or you can face them and try to make a change for the better, both for yourself, and for individuals with disabilities all over the world.

Which do you choose?

Wednesday, May 25, 2016

SPARK Plug: Thought on Participating in Autism Research

I was recently asked to take part in the SPARK (Simons Foundation Powering Autism Research for Knowledge) online research partnership, and was both excited and apprehensive to hear about the study’s purpose and intended goals.

One of the things I began to wonder was what this study could this mean for our understanding of autism—where it comes from, why the incidence rate has seemingly “increased” in the last few years, and how or if it travels through families. The autism narrative is often challenging to navigate, and it is my hope that a study like SPARK could be a map to help us find our way.

When we talk about autism, there often seems to be a great divide. On one side, there are personal anecdotes, stories from individuals and families of their own personal journeys on the spectrum. On the other side, there are scientists and researchers working endlessly to collect data and compile information about autism as it relates to a greater epidemiological picture.

Both sides have been and continue to be invested in finding the cause of autism, of whether environmental factors or heredity or something else hold the key to deciphering autism. The SPARK study has the potential to answer that question, to take the tiniest of saliva samples from our mouths to someone’s ears who can then say, “This is what causes autism.”

Along with illuminating causes, there is the possibility of this research being used to develop treatments for autism. While it is important to find ways of reducing or preventing self-injurious and other physically harmful behaviors sometimes associated with autism, we must also remember that autism is part of who a person is, and treatments should be administered with the person, not just the disorder, in mind.

Autism research has continued to expand over the last few years, and as we study the spectrum in a laboratory setting, it is imperative that autistic individuals be included in that research process—not only as subjects, but as co-investigators. Our triumphs and heartbreaks, our potential futures, our very lives are being put under the microscope, and it is we who have the greatest stake in this research.

One day, we will learn the results of the SPARK study, though it will take time for the full impact of those results to unfold. I am hopeful that the picture these results paint will show that autism is not a puzzle to be solved, but a story to be told. I want to see the answers and knowledge that we glean open a discussion on how we can improve the quality of life not just for future generations, but for individuals on the spectrum living in the world right now.

Most of all, I want those of us who have felt out of place in the world, in our communities, and in our families to learn through SPARK that what lives in our DNA is not something that was done to us, but part of what makes us who we are. 

Tuesday, April 5, 2016

Vexed by Vaxxed: Autism, Vaccines, and the Epidemic of Ignorance

It's only a few days into 2016's Autism Awareness/Autism Acceptance Month, and despite how much progress has been made over the past year, I have already come face-to-face with evidence of how much work still needs to be done.

As most folks probably know by now, the controversial documentary Vaxxed! was slated to be screened at the Tribeca Film Festival later this month, at the behest of the festival's founder, Robert De Niro, who is a parent of a teenage son on the autism spectrum. Shortly after defending his decision to screen the film, De Niro announced that Vaxxed! would not be shown at the festival after all, saying that he had reviewed it with experts in the medical community and that "[...]we do not believe it contributes to or furthers the discussion I had hoped for."

The film, which was directed by discredited researcher and anti-vaccine progenitor Andrew Wakefield, has provoked an incredible backlash--first from the scientific and autism community when it was going to be shown at Tribeca, and then backlash from the anti-vaccine movement when it wasn't. Yet the comments and attitudes of those who are anti-vaccine have proven for me to be some of the most disturbing and misinformed that I have witnessed.

This culminated in my seeing a Facebook post from Vaxxed! producer Del Bigtree (how is that even a real name?) and a response to a comment on that post, which I have screencapped below:

(Source: Del Bigtree Facebook post)
When you create a narrative of autism that centers almost entirely around young children, this is the result.

When you promote an agenda that says autism is caused by vaccines, that ignores the presence of autism throughout history, insisting it is something new that didn't exist twenty, thirty, forty years ago so therefore only affects children, this is the result.

Adults with autism are right where we've always been: Here, among you, living our lives to the best of our ability, trying to survive in a world that neither understands nor accepts us.

We are here now as much as we were in times past; the only difference is that twenty, thirty, forty years ago, you didn't see us. You couldn't, because we lived in institutions, placed there by our families who were told to lock us away, forget about us, and move on with their lives. Autism was "childhood schizophrenia," mental retardation, "manic depression,"...every diagnosis but what autism actually is, because for so many years, it was neither understood nor widely recognized.

So we suffered in silence. Alone. But we were there.

Today, knowledge of autism is greater than ever before. It has entered and become affixed to the popular global consciousness, and specialists and providers trained in the assessment and treatment of autism spectrum disorders are in overwhelming demand.

But autistic children do not exist in a vacuum. They will grow up, age out, have different needs and challenges as they get older, for which society remains woefully unprepared. Yet the single greatest resource for helping these children is still the most untapped one:

Autistic adults. We who offer both caution and hope, because we know firsthand what it means to navigate the perils and pitfalls of being autistic in a neurotypical world.

It often seems that becoming an adult with autism is never presented as an option to children of anti-vaccine parents, and it is these children for whom I feel the greatest sympathy. Children who hear themselves described as "vaccine-injured" or "vaccine-damaged."  Children who hear these sentiments over and over again, and who start to see themselves as exactly that:

Broken. Less. A toy in need of a factory reset.

But individuals with autism are not objects; we are human beings with personalities, passions, strengths, and challenges that are both tied to and so much more than our neurology.

It is this viewpoint that I would like to see represented at events like the Tribeca Film Festival and other Autism Awareness/Acceptance month celebrations. We must recognize and prioritize common sense and rational thought, rather than fear-mongering and hysteria-based rhetoric.

I want anti-vax parents to stop searching for the 'normal' child they think is missing and start looking at the autistic child that is right in front of them.

It begins with education. It begins with denying a platform to those whose words and ideas would promote ignorance and ultimately cause harm individuals with autism and their loved ones. It begins with raising the voices of those who are working to affect positive change, those with stories to tell and wisdom to dispense.

Change your own perceptions of autism, of what it means to be autistic, of what the possibilities for autistic children are, and of what we can do to ensure a better quality of life for all individuals with autism.

It begins with you. It begins today.

Tuesday, March 8, 2016

When Nice Girls Get Mad: Thoughts on Women, Autism, and Anger

{This post was originally published on the blog of Autism Speaks, as part of their "In Our Own Words" series. The original post can be viewed here.}

Not too long ago, I found myself caught in an exchange with someone. I say “caught” because in that moment I felt much like a fish—swimming happily at first; then baited, lured away, and ensnared in the trap that was deliberately laid down for me.


Having interacted with this person previously, I knew what was in store if it happened again. Yet despite the thicker skin I’ve grown over the years, I still found myself caught off guard by what ended up happening. But there was a marked difference this time in the emotional response that this interaction provoked in me. I did not feel sad or hurt. I did not cry.

I got angry.

It was a new kind of anger: Righteous. Justified. Certain. The sort of anger that I knew I had every right to feel, and that I was sure others would understand as well.

I was wrong.

The moment that I chose to vent my anger, something changed. Suddenly, I was chided for the negative tone in my words. I was told, “Amy, you’re so nice and sweet. Why would you be so mean?

It was as if my brief, hyperbole-filled, frustration-fueled tirade had completely negated the person I was up until then. It seemed that, because I had not been able to hold in my emotions—even for just one moment—I could no longer be categorized as “nice and sweet.”

Girls and women on the autism spectrum are often viewed as being meek. Quiet. Shy. If a male on the spectrum gets angry, it is expected. Understood. Men are given outlets in society for this anger, and are not socially reprimanded for expressing it.

But if a female on the spectrum gets angry, it is unanticipated. Frightening. Meetings are held, concerns are voiced, medications are dispensed. In our society, women are expected to inhabit the role of peacekeeper, trouble-soother, feather un-ruffler. Anger is considered “unladylike.” Anger makes women “ugly,” and we are permitted to be ugly no more than we are to be angry.

Men on the autism spectrum are not often asked why they are angry. Their anger is acknowledged, recognized, and it is allowed to simply be. There is no reason, then, why this should not be possible for women on the spectrum.

The anger of women on the spectrum is no less real than the anger felt by men. As with all emotions, it is natural, it is healthy, and it is human. It is worth noting that the personhood of men on the spectrum is not called into question simply because they show anger, and so the same should then also hold true for women.

It is difficult enough to find our anger unwelcome by society at large, and to face the same double-standards in the autism world makes things that much more challenging. Women on the spectrum must have access to outlets of our own—safe, individualized options that give us the ability to express our anger without fear of judgment or reprisal.

To deny or be denied any part of the emotional experience is nothing less than to deny women on the spectrum of a part of our humanity.

And that’s definitely something to get angry about.

Sunday, February 28, 2016

The One Thing We Shouldn't Tell Children with Autism

Last year, I was asked to be a guest speaker at a middle school in Brooklyn for their Peace & Diversity Conference day. I spoke there to a group of sixth graders, and then had lunch with a self-contained class of sixth graders with autism. I was asked to return again this year, and made the trek out to Brooklyn at the end of January, just hours ahead of a snowy winter storm.

I can still see him so clearly. The small one, with thick, black-rimmed glasses that were almost too big for his face, sitting there tugging nervously at the hem of his shirt. He wasn't as gregarious as some of the other children--not like the one I affectionately refer to as Mr. Mayor, because he probably will be one someday--but he made an impression that I won't soon forget.

It's not often that I have the opportunity to be around sixth graders, let alone ones who are as self-aware and bright as they were. One by one, they came over to sit at my table and began asking me questions in that combination of wide-eyed innocent and weathered that only 12-year-olds seem to do so well. They sometimes spoke over each other, and as their enthusiasm grew, the questions flew out almost before their brains had a chance to finish coming up with them.

Then it was the small boy’s turn. He cleared his throat and looked up at me shyly.

“What was it like when you had autism?”

 I pause.

“Well…I still have autism,” I said, the full weight and meaning of his question just starting to sink in.

It’s no secret that most of the media portrayals of autism predominantly feature young children. Autistic adults—who are not necessarily cute, small, or more easily managed—are given very little of the spotlight in comparison. But perhaps there is more to it than that.

Every day, many children with autism undergo various types of therapies—ABA, Floortime, social skills groups, and so on. Self-contained classrooms are cropping up in schools all across the country, accompanied by a veritable army of teachers, psychologists, speech therapists, aides, and other professionals.  All of this in the name of helping these kids to overcome challenges, to thrive, and to succeed.

But increasingly, “success” seems to be defined as “no longer having or appearing to have autism.”

Parents, teachers, people with the very best of intentions are doing a great disservice to children with autism by sending a loud and specific message: That this is only temporary, something you are getting help for now, so that you—and everyone else—won’t have to deal with it later.

In reality, nothing could be further from the truth.

As a child, I did not undergo early invention. My parents tried one thing after another to help me, a desperate if not futile effort in a world that had little (if any) awareness or understanding of autism. The challenges I faced were many, yet few were greater than the low expectations and doubt in my abilities that others had for me.

Today, I am an autism consultant, a professional public speaker, a writer, and an advocate. I’ve surpassed the beliefs of those who said I would not amount to anything, who told my parents I would not graduate high school, let alone attend college. I have a Masters degree, I have my own business, and I have a life that took me years of struggle to build. My story only started because I believed it was worth writing, and even now, it is still being written.

I have overcome tremendous obstacles because I have worked hard to do so, not because I no longer have autism.

The fear of children with autism facing certain challenges for the rest of their lives is overwhelming, and often is the driving force for parents and teachers to find help for these children. But because autism is an integral part of who we are, overcoming those challenges does not and will not suddenly make us neurotypical. It just means that we are going to grow up and have those challenges replaced by new ones.

Therapies and treatments have their place, and can be meaningful and effective tools for assisting autistic children and their families. But preparing your child to be an adult with autism is the best and most important thing that you can do to help them live in this world.

I hope I will get to see that little boy with the thick-rimmed glasses again. 

I hope he grows into his striped shirt, grows into the person that he’s going to become, a person who will give so much to this world. I hope he knows how special he is, and that he can be autistic and succeed, be loved, be a friend, and be just exactly who he is.

All of our children can.