This past June, the European Union and dozens of pharmaceutical companies—including AstraZeneca (which sells Movantik constipation tablets), Glaxosmithkline, and Pfizer—announced they’ve been awarded a $131 million research grant aimed at studying neurodevelopmental conditions. The aim of the grant is to “increase our understanding of autism and help to develop new therapies to improve health outcomes and quality of life for autistic people.”

But the research program has been heavily criticized by many of those in the autistic community, who describe the Autism Innovative Medical Studies-2-Trials as not only offensive—many neurodivergent people feel their differences should be celebrated, not “fixed”—but as potentially serving as an argument to stop autistic people being born altogether.

Panda Mery is a university researcher in London and a former journalist, lecturer, and software engineer. He’s also autistic, and when he found out that a huge U.S.-based charity called Autism Speaks was involved in the AIMS-2 project, he grew highly suspicious of what “solutions” this research was seeking out.

“[Autism Speaks] are basically a hate speech organization,” he told me in an interview. “They treat autism like a cancer. You want to get rid of the cancer. You want to get rid of the autism. But autism is part of your identity. It’s like, how can you get rid of the Britishness of someone? How can you get rid of the Jewishness of someone? How can you get rid of the autism of someone?”

Autism Speaks is also held in low esteem by the two other autistic people I interviewed. Dr. Damian Milton, a social scientist at England’s University of Kent, said the organization has a “very dubious reputation with the autistic community.” Cos Michael, an autism consultant, added, “They used to have a prize every year called the ‘curing autism’ hero. They hate autism.”

When these comments were put to Autism Speaks senior director of media strategy Aurelia Grayson, she replied:

“These comments completely mischaracterize Autism Speaks, which is dedicated to increasing understanding and acceptance of people with autism. Our national board and staff include adults with autism and parents of children on the spectrum, guiding every aspect of our mission–from research to family services and advocacy.

Research funded by Autism Speaks shows that autism affects each person differently. As you know, some people can live independently; others need assistance with certain aspects of their lives, such as education or employment; and others have significant medical and behavioral challenges requiring 24/7 care. Through research, we are gaining a better understanding of the many forms of autism, which will make it possible to tailor treatments, resources and supports to individual needs.”

With alarm bells ringing, Mery requested a copy of the AIMS-2 grant agreement under EU transparency rules. On receiving the 664-page document, the alarm bells’ decibels became deafening. One section in particular troubled him:

“Currently, there are no effective medical treatments for the core symptoms of Autism Spectrum Disorder. Our overall goal is to address these shortcomings by adopting a precision-medicine approach to better target treatments to patients through the use of validated stratification biomarkers and by testing novel or repurposed drugs.”

For Mery, targeting the symptoms of autism sounds a lot like “curing autism”—but autism is not a disease, it does not need curing. Cos Michael also objects to this language of “core symptoms”:

“What are they? Are they good things? Bad things? Who decides? Because they keep changing. Through history, the ‘core symptoms’ of autism have changed. It’s about what other [non-autistic] people call them. And ‘targeting them’? Why? Because we want to take them out? It’s so full of…well, hate, frankly.”

While nobody I spoke to wanted to overstate the comparison, there are similarities with how homophobia views homosexuality—as something to be cured. The American Psychiatric Association viewed homosexuality as a mental disorder until 1987 and still views autism as such. Panda hopes one day that will change.

AIMS-2 is poised as a threat to the very survival of the autistic community. The trials aim to identify “biomarkers”—genes which are linked to autism. There’s nothing inherently wrong with research like this, just like there was nothing wrong with Ernest Rutherford’s research into splitting the atom. Gaining knowledge is rarely a bad thing, but how that knowledge is subsequently used is another story altogether.

Targeting the symptoms of autism sounds a lot like curing autism—but autism is not a disease, it does not need curing.
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Rutherford’s research, of course, was ultimately used to create the nuclear bomb; autism biomarkers could be used to inform pregnant mothers that their babies are likely to be autistic. Given the social stigma of autism, the misconceptions around it, and the reality that raising autistic children can be difficult, this could potentially lead to mass abortion and a declining autistic population.

This might sound like dystopian fiction but, as both Michael and Mery pointed out, in Iceland this is already a reality for people with Down’s Syndrome. Icelandic doctors are required by law to tell pregnant women that there is a screening test available which can indicate (among other things) the presence of Down’s Syndrome in their fetus. According to CBS, nearly all the women whose tests indicate Down’s Syndrome, terminate the pregnancy.

“If you get the biomarker research that they’re aiming for, you’ll be able to eliminate a group of people based on the fact that you just don’t want that group of people around,” warned Michael. “It’s designer baby time. It’s eugenics.”

Dr. Milton agrees that the search for autistic biomarkers is “a bit eugenicist,” but he thinks the search will fail. “It’s a genuine concern, but it’s like the U2 song, they’re not going to find what they’re looking for,” he joked. “Autism is an umbrella term describing a way of being, a way of acting in the world which is part of the diversity of people. It’s a category which is social in nature. Trying to find a biomarker for autism is not going to happen as such. Even sub-types of autism is a bit of a lost cause.”

His concern is that millions of euros will be spent on developing drugs that don’t work and may have side effects, and that parents will be told inaccurately that their children have an increased likelihood of autism. All this will improve pharmaceutical company profits, but increase the stigma of autism.

With all this money wasted, what the autistic community itself actually wants to be researched remains largely ignored by AIMS-2. When autistic people were asked what they wanted researching, they answered with things like, “how to reduce anxiety” and “how to improve mental health, adult social care, and adult autism diagnoses.” But, as the answer to most of these problems are unlikely to be “new drugs,” pharmaceutical companies are not interested.

On one point however, the interests of big pharma and autistic people are, at least partly, aligned. Epilepsy is common in autistic people, and Mery, Michael, and Damian all said they would welcome research into drugs to treat it. Research into epilepsy is mentioned in the AIMS-2 grant agreement, but is not as core to the program as many would like it to be.

With all this money wasted, what the autistic community itself actually wants to be researched remains largely ignored by AIMS-2.
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And while the power may seem to be with the EU and the multi-billion dollar corporations, ordinary autistic people do have some leverage in fact. The tests will need what Michael calls “lab rats,” autistic volunteers. “It doesn’t matter how much money they can throw at it,” she said, “If they can’t get autistic people involved, then how can they carry out their trials?”

(One of the companies involved is the world’s second biggest pharmaceutical company—Roche. When contacted for this article, the company denied it was researching a cure for autism and claimed that AIMS-2 was transparent and was consulting with autistic people. Their answers did not satisfy the autistic people I spoke to.)

Unsplash/ Win Pauwels

“give your daughters difficult names.
give your daughters names that command the full use of tongue.
my name makes you want to tell me the truth.
my name doesn’t allow me to trust anyone that cannot pronounce it right.”
― Warsan Shire

This week, we learned the world is a lot more like an episode of ‘Black Mirror’ than an episode of ‘Black Mirror’ could be. As we come to terms with the deep technological betrayal of privacy and trust, and have long discussions over whether to delete our Facebook accounts, consider that in so many parts of the world, using Facebook is not a luxury, it’s a lifeline. It’s a necessary connection to information, to jobs, to access.

Hitting “deactivate account” is a privilege we get to have: We don’t even have to bother engaging in the fight for privacy. Will you fight anyway, or will you walk away?

Speaking of Facebook, when I posted about a challenge far too many people of color face — that of carrying the undue burden of correcting people about the proper pronunciation of our names—a white person insisted my views were incorrect. “For the record, white people deal with it too when they have names like Dominique,” she argued on my timeline.

Sometimes, the conversation is not about you. You can, for example, be a man who hears a woman saying “me too,” without quickly crying out “not all men!” You could hear a woman say “me too,” without saying it back. You can even listen to another person’s oppression, without jumping in to tell your own stories of oppression.

Sometimes, we don’t want to hear “me too.” Sometimes, “I’m sorry you’re going through that,” is fine. And sometimes, words will never be enough.

With love + solidarity,
Ruchika Tulshyan
Founding Editor

Can It Be Healing For A Sexual Assault Survivor To Communicate With A Harasser?

By Andrea Hannah

The #MeToo movement has illuminated what it takes to truly heal: connection, sisterhood, and the willingness to look at pain head-on.

I know that I alone can’t heal the kind of soul-sucking void Greg has written about, and I reject the individual responsibility of even trying. But because of the courage of so many survivors bringing their pain to light,

I’m strong enough to have these conversations with him. I’m willing enough to witness his own acceptance of his void, and I’m attempting to answer the call of my own questions:

What can I do about this to change the course of the future?

How can I be brave enough to speak up, especially when I fear for the safety of other women?

How can I make sure my daughter and others never have to scream #MeToo?

The Legislation That Would Harm Sex Workers — In The Name Of Their Own Protection
By Alex MK

Whether they utilize Facebook groups, other online forums, or even text group chats, sex workers’ ability to communicate with one another and screen potential clients is one of the only security mechanisms available to them .

It’s one that will be further compromised, with assuredly fatal consequences, if the supposed anti-trafficking bill, FOSTA, passes the Senate this week.

FOSTA will make our lives exponentially more dangerous under the pretense of protecting us.

When You’re Autistic, Abuse Is Considered Love

By Aaron Kappel

We need to be able to speak for ourselves, but instead, #ActuallyAutistic voices are too often shunned and silenced, while the voices of allistic (non-autistic) parents raising autistic children are lifted up and praised.

A common retort to the autistic adults who condemn this genre of writing and alleged advocacy is that our viewpoint is inconsequential because we aren’t autistic enough.

Our needs don’t compare to the mountain of needs their children require because we are able to raise our voices and organize, and by doing so, we are making things harder for autistic people — like their children — who require more care.

Treat yourself to an ESTABLISHMENT membership!

Tips On Filling Out Your March Madness Bracket For Whose Time Is Up Next

By Kristin Nalivaika

Filling out brackets can be daunting. Especially when, in industries varying from entertainment to journalism to government, so many people brought their A game to disgusting, inappropriate behavior in 2017!

Some of these individuals have experienced the spotlight of accusation in prior seasons, but the lack of results have kept on disappointing us year after year. Other entrants are fresh faces appearing in the tournament for the first time.

There are a million different combinations for the 68 individuals in the bracket who have not yet suffered appropriate consequences for their despicable actions. If you want any chance of winning your office pool, here are some tips on picking the Final Four creeps.

In the excerpt from her forthcoming book, Autism Uncensored, that was recently published in The Washington Post, Whitney Ellenby tells us about the time she physically restrained and dragged her 5-year-old autistic son to see Elmo perform at a “Sesame Street Live!” show. She describes fighting off his fists, pinning him down, and inching — her son shrieking and flailing, trapped between her legs — toward the auditorium’s entrance, an effort, she claims, “to save him from a life entrapped by autistic phobias.”

While some parents of autistic children have celebrated the article for showing them that they are not alone, the response from autistic adults to the violent actions in the piece and her book more broadly, has been, deservedly, negative. As Eb, an autistic writer, tweeted, “Meltdowns like the one described in this article aren’t ‘problems to solve.’ They’re communication.” Through his, Ellenby’s son was communicating something important to his mother — and her response was to push him, literally, into doing something he didn’t want to do, completely disregarding his autonomy.

Sadly, this is merely the most recent high-profile example of an allistic (non-autistic) parent, disrespecting and dehumanizing their autistic child then exploiting them by publishing very private, personal details about their life. Judith Newman, author of To Siri with Love — a collection of supposedly humorous stories about her then-13-year-old autistic son — received similar backlash from actually autistic adults last year. Among her various repugnant views, she asserts that her son is unfit to become a parent because he is autistic, detailing her desire to have him sterilized. “I am still deeply worried about the idea that he could get someone pregnant and yet could never be a real father — which is why I will insist on having medical power of attorney, so that I will be able to make the decision about a vasectomy for him after he turns 18.”

As may already be clear, while these types of books and articles may be about autistic people (mostly children who cannot consent), they are not for them. Instead, they are authored by and for parents and other allistic adults — at the expense of the vulnerable and marginalized community they claim to be advocating for.

And this trend keeps repeating. On smaller scales, as with Jill Escher, president of Autism Society San Francisco Bay Area, who wrote a cringe-worthy account of the financial and superficial costs her autistic son is causing her. Or larger ones like, Amy Lutz, author and outspoken critic of the neurodiversity movement who said that writing about her autistic son without his permission isn’t exploitation because he’s incapable of providing consent. There are “very few costs” to publicly writing about his life because he “will never go to college, seek competitive employment, or get married.”

Autistic writer Sarah Kurchak refers to this subgenre of writing as the “Autism Parent memoir,” which often overlaps with the realm of Autism Warrior Parents (AWPs) — a term that it is both embraced and rejected by parents of autistic children. AWPs, as Shannon Rosa wrote, “insist on supporting their autistic kids either by trying to cure them, or by imposing non-autistic-oriented goals on them — rather than by trying to understand how their kids are wired, and how that wiring affects their life experience.”

If that sounds like an exaggeration, take Marcia Hinds, whose author biostates that she and “her family survived their war against autism.” According to a review of her book, I Know You’re In There: Winning Our War Against Autism, “She openly writes what we have all felt at one time or another. We love our children, but we do not love the autism.”

Rather than unconditionally accepting her son and seeking to better understand his needs, Hinds believed an autism diagnosis meant “there was no hope” and, diving headfirst into the realm of pseudo-science and conspiracy theories, that “by treating hidden viruses and infection,” autism can be cured. For her, in order for there to be hope for her family and her autistic son, his autism needed to be destroyed.

How ‘Autism Warrior Parents’ Harm Autistic Kids
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Terrifyingly, this is far from an obscure movement. Celebrities like Jenny McCarthy have helped bring these harmful conspiracies into the mainstream.

The cumulative result is that many, many autistic children grow up in environments rife with physical confrontations like the one that occurred in Ellenby’s article, or in homes that reject basic, peer-reviewed medical science, or with parents who demonstrate a complete and utter disregard for their autistic children’s autonomy — and all of it is framed as love.

But it is not love; it is abuse.

When I read Whitney Ellenby’s piece, the parallels between her and my psychologically abusive mother were too great to ignore. Just as Ellenby misinterpreted her son’s reluctance, disinterest, and outright refusal to engage in an activity as some sort of phobia to be overcome, my mother forced me into conquering my so-called fears — “for my own good.” She saw the way I interacted with the world as different from other children, and deemed that difference the enemy.

It has taken years to unravel and untie the clutter of psychological knots and trauma she left me with — and there are, no doubt, more waiting in the wings — but I can say with absolute certainty there’s a stark difference between a professed love and real, unconditional love. Failing to accept and trying to change or attempting to “fix” someone who is not broken — no matter the intent — is not the same as loving them. As writer and disability rights advocate Lydia Brown wrote to Judith Newman, “You may believe you love your son. But we, autistic people, hear what you have actually said, which is that you hate him. You love a version of him that does not exist.”

While I’ve not published a single piece of writing in almost a year due to hyper-empathy and burnout, I have been discovering and healing, coming to terms with the fact that I am autistic, and, contrary to the dangerous message AWPs continually insinuate, that it is nothing that should bring me shame or fear.

Memory and trauma are a mindfuck, but scenes flash before my mind’s eye — having my hands restrained at my desk in grade school, or instead having inside-out gym socks taped to my hands so I couldn’t fidget or distract others, but could still hold a pencil to do schoolwork. And now I’m angry, again, at my mother and all of her enablers for shaming and punishing me for things I couldn’t control or understand. I’m livid at her and my teachers for forcing me to put gross tasting things in my mouth whenever I did something that society deemed weird and unacceptable. I’m angry as fuck for crying and crying while telling the damn truth about not understanding something, not being able to stop doing something, or not being able to adequately articulate why I did something… And then being disciplined for my “rebellious attitude,” for disobedience, or for not trusting God enough because that asshole doesn’t give you any more than you can handle.

And I believed the lies, I believed it was my fault, I believed I was unworthy and failing God and my family every day — so I punished myself and stopped trusting those who professed their love for me and worked diligently to change myself.

It doesn’t have to be this way.

In the wake of Ellenby’s piece, Sarah Kurchak interviewed her allistic mother, Jane, to get her take on this spate of high-profile Autism Parent memoirs. The interview highlights a wholly different model of autism and parental love. Where Ellenby described her exploitative book as “one woman’s story, my truth and my love letter to my beloved son,” Jane focuses on her daughter’s well-being in a world that too often punishes neurodivergent people for being who they are, advocating that she not read Ellenby’s work: “I see you try to function in a pull-up-your-bootstraps neurotypical world. And I know if you read this book, it will crush you. … So it’s a selfish motive because I don’t want you to hurt.”

Later Jane says to her daughter, “I have always said to you, to anybody that will listen to me, I have learned more about life in the world from you than from anyone or anything else… Watch your child and learn from them. Take your cues from your child.” For her, the relationship she has with her daughter goes both ways. “Just because I’m your parent doesn’t make me right… My reality is that my life is a better life because of you. And I just want you to know that I’m proud.”

Reading Jane and Sarah’s conversation brought me to tears and offered up a glimmer of much-needed hope. Without ever saying the words “I love you,” Jane demonstrated how very much she respects, accepts, and loves her daughter merely in the way she talks about her — and how they’ve navigated their life together, as a team.

By contrast, the only “uncensored truth” Ellenby reveals in her writing is that she sincerely believes her abusive actions are loving ones. But how do things change if the abusers, their apologists, and the exploitive industry that profits off of them, refuse to stop — let alone acknowledge that they are harming others?

We need to be able to speak for ourselves, but instead, #ActuallyAutisticvoices are too often shunned and silenced, while the voices of allistic parents raising autistic children are lifted up and praised. A common retort to the autistic adults who condemn this genre of writing and alleged advocacy is that our viewpoint is inconsequential because we aren’t autistic enough. Our needs don’t compare to the mountain of needs their children require because we are able to raise our voices and organize, and by doing so, we are making things harder for autistic people — like their children — who require more care.

Ellenby herself made this argument in response to the backlash her article caused, writing, “You adults with Autism who are reaching out to me in brilliantly worded protest, you who are capable of self-advocating, organizing, who have children of your own — you in no way resemble Zack.”

This is not a new argument. Amy Lutz wrote in 2013, “So what happens to neurodiversity if its lower-functioning supporters are discredited? The movement is exposed for what it is: a group of high-functioning individuals opposed to medical research that, as Singer puts it ‘they don’t need, but my daughter does. If she were able to function at their level, I would consider her cured.’”

When Allies Say Tragedy Is The Only ‘True’ Representation Of Autism
theestablishment.co

Dr. Jennifer Sarrett, Lecturer at Emory University’s Center for the Study of Human Health, carelessly pontificated that broadening the definition of autism, “could divert attention and resources from the people who need it the most — the significantly disabled.” But this mindset only makes it harder forall autistic people, and further stigmatizes many of us as being not “autistic enough,” while doing nothing to counter the ableism we confront every day.

Whether we were diagnosed early and our guardians taught us how to hideour autistic traits (or force them out of us) through harmful applied behavioral analysis techniques, or we learned the concept of masking or practiced self-degradation on our own as a way to “appear normal” to everyone else — existing as an autistic person in a world that hates us is physically and emotionally debilitating.

And this is why the themes apparent within the ever-rising tide of Autism Memoirs are so infuriating. Autistic children are given little to no autonomy. Instead of being treated as living, breathing, beautiful, and complex human beings — they’re reduced to a plot device, a mechanism for their parents to exploit and profit from. And even worse, such memoirs frame autism as the thing that needs to be battled — rather than the unjust, ableist world we live in. These narratives center the parents, attempt to sever an important component of their child’s identity, and, instead of making the world a better place for them, force their children to change for the world.

It doesn’t have to be this way.

Existing as an autistic person in a world that hates us is physically and emotionally debilitating.
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I believe that these allistic parents do love their children, just as I believe my parents loved me. But despite what they say, their actions are not those of love, which, by definition, requires respect and acknowledgment of another’s autonomy. I was told that I was loved every day, and yet I sincerely believed there were parts of me that I needed to destroy in order to be worthy of that love — and so I tried, and failed, and grew up traumatized, without ever understanding what healthy love looks like.

Now I’m almost 35 years-old and still recovering and unlearning the destructive messages I grew up with, as the effects of trauma don’t just disappear when you leave the traumatic environment. Those of us who have survived and are voicing our anger to these parents and their enablers aren’t “internet bullies.” We are survivors who don’t want autistic children of any age to be abused. Listen to us. Believe us. Your child does not need to be cured, they need to be respected, listened to, and above all, loved — truly loved.

In the excerpt from her forthcoming book, Autism Uncensored, that was recently published in The Washington Post, Whitney Ellenby tells us about the time she physically restrained and dragged her 5-year-old autistic son to see Elmo perform at a “Sesame Street Live!” show. She describes fighting off his fists, pinning him down, and inching — her son shrieking and flailing, trapped between her legs — toward the auditorium’s entrance, an effort, she claims, “to save him from a life entrapped by autistic phobias.”

While some parents of autistic children have celebrated the article for showing them that they are not alone, the response from autistic adults to the violent actions in the piece and her book more broadly, has been, deservedly, negative. As Eb, an autistic writer, tweeted, “Meltdowns like the one described in this article aren’t ‘problems to solve.’ They’re communication.” Through his, Ellenby’s son was communicating something important to his mother — and her response was to push him, literally, into doing something he didn’t want to do, completely disregarding his autonomy.

Sadly, this is merely the most recent high-profile example of an allistic (non-autistic) parent, disrespecting and dehumanizing their autistic child then exploiting them by publishing very private, personal details about their life. Judith Newman, author of To Siri with Love — a collection of supposedly humorous stories about her then-13-year-old autistic son — received similar backlash from actually autistic adults last year. Among her various repugnant views, she asserts that her son is unfit to become a parent because he is autistic, detailing her desire to have him sterilized. “I am still deeply worried about the idea that he could get someone pregnant and yet could never be a real father — which is why I will insist on having medical power of attorney, so that I will be able to make the decision about a vasectomy for him after he turns 18.”

As may already be clear, while these types of books and articles may be about autistic people (mostly children who cannot consent), they are not for them. Instead, they are authored by and for parents and other allistic adults — at the expense of the vulnerable and marginalized community they claim to be advocating for.

These books are authored by and for parents and other allistic adults — at the expense of the vulnerable and marginalized community they claim to be advocating for.
Click To Tweet

And this trend keeps repeating. On smaller scales, as with Jill Escher, president of Autism Society San Francisco Bay Area, who wrote a cringe-worthy account of the financial and superficial costs her autistic son is causing her. Or larger ones like, Amy Lutz, author and outspoken critic of the neurodiversity movement who said that writing about her autistic son without his permission isn’t exploitation because he’s incapable of providing consent. There are “very few costs” to publicly writing about his life because he “will never go to college, seek competitive employment, or get married.”

Autistic writer Sarah Kurchak refers to this subgenre of writing as the “Autism Parent memoir,” which often overlaps with the realm of Autism Warrior Parents (AWPs) — a term that it is both embraced and rejected by parents of autistic children. AWPs, as Shannon Rosa wrote, “insist on supporting their autistic kids either by trying to cure them, or by imposing non-autistic-oriented goals on them — rather than by trying to understand how their kids are wired, and how that wiring affects their life experience.”

If that sounds like an exaggeration, take Marcia Hinds, whose author bio states that she and “her family survived their war against autism.” According to a review of her book, I Know You’re In There: Winning Our War Against Autism, “She openly writes what we have all felt at one time or another. We love our children, but we do not love the autism.”

Rather than unconditionally accepting her son and seeking to better understand his needs, Hinds believed an autism diagnosis meant “there was no hope” and, diving headfirst into the realm of pseudo-science and conspiracy theories, that “by treating hidden viruses and infection,” autism can be cured. For her, in order for there to be hope for her family and her autistic son, his autism needed to be destroyed.

How ‘Autism Warrior Parents’ Harm Autistic Kids

And Hinds isn’t the only parent latching onto harmful medically disproven theories linking vaccines to autism. Mary Cavanaugh, author and parent of an autistic child, states on her website, “I now know all three of my children have been vaccine injured.” She is a member of The Thinking Moms’ Revolution, an online community and book, where mothers share tales of fighting to rescue their children from autism. “Suspecting that some of the main causes may be overused medicines, vaccinations, environmental toxins, and processed foods,” the book’s synopsis states, “they began a mission to help reverse the effects.”

Terrifyingly, this is far from an obscure movement. Celebrities like Jenny McCarthy have helped bring these harmful conspiracies into the mainstream.

The cumulative result is that many, many autistic children grow up in environments rife with physical confrontations like the one that occurred in Ellenby’s article, or in homes that reject basic, peer-reviewed medical science, or with parents who demonstrate a complete and utter disregard for their autistic children’s autonomy — and all of it is framed as love.

But it is not love; it is abuse.

When I read Whitney Ellenby’s piece, the parallels between her and my psychologically abusive mother were too great to ignore. Just as Ellenby misinterpreted her son’s reluctance, disinterest, and outright refusal to engage in an activity as some sort of phobia to be overcome, my mother forced me into conquering my so-called fears — “for my own good.” She saw the way I interacted with the world as different from other children, and deemed that difference the enemy.

It has taken years to unravel and untie the clutter of psychological knots and trauma she left me with — and there are, no doubt, more waiting in the wings — but I can say with absolute certainty there’s a stark difference between a professed love and real, unconditional love. Failing to accept and trying to change or attempting to “fix” someone who is not broken — no matter the intent — is not the same as loving them. As writer and disability rights advocate Lydia Brown wrote to Judith Newman, “You may believe you love your son. But we, autistic people, hear what you have actually said, which is that you hate him. You love a version of him that does not exist.”

While I’ve not published a single piece of writing in almost a year due to hyper-empathy and burnout, I have been discovering and healing, coming to terms with the fact that I am autistic, and, contrary to the dangerous message AWPs continually insinuate, that it is nothing that should bring me shame or fear.

Memory and trauma are a mindfuck, but scenes flash before my mind’s eye — having my hands restrained at my desk in grade school, or instead having inside-out gym socks taped to my hands so I couldn’t fidget or distract others, but could still hold a pencil to do schoolwork. And now I’m angry, again, at my mother and all of her enablers for shaming and punishing me for things I couldn’t control or understand. I’m livid at her and my teachers for forcing me to put gross tasting things in my mouth whenever I did something that society deemed weird and unacceptable. I’m angry as fuck for crying and crying while telling the damn truth about not understanding something, not being able to stop doing something, or not being able to adequately articulate why I did something… And then being disciplined for my “rebellious attitude,” for disobedience, or for not trusting God enough because that asshole doesn’t give you any more than you can handle.

And I believed the lies, I believed it was my fault, I believed I was unworthy and failing God and my family every day — so I punished myself and stopped trusting those who professed their love for me and worked diligently to change myself.

It doesn’t have to be this way.

In the wake of Ellenby’s piece, Sarah Kurchak interviewed her allistic mother, Jane, to get her take on this spate of high-profile Autism Parent memoirs. The interview highlights a wholly different model of autism and parental love. Where Ellenby described her exploitative book as “one woman’s story, my truth and my love letter to my beloved son,” Jane focuses on her daughter’s well-being in a world that too often punishes neurodivergent people for being who they are, advocating that she not read Ellenby’s work: “I see you try to function in a pull-up-your-bootstraps neurotypical world. And I know if you read this book, it will crush you. … So it’s a selfish motive because I don’t want you to hurt.”

Later Jane says to her daughter, “I have always said to you, to anybody that will listen to me, I have learned more about life in the world from you than from anyone or anything else… Watch your child and learn from them. Take your cues from your child.” For her, the relationship she has with her daughter goes both ways. “Just because I’m your parent doesn’t make me right… My reality is that my life is a better life because of you. And I just want you to know that I’m proud.”

Reading Jane and Sarah’s conversation brought me to tears and offered up a glimmer of much-needed hope. Without ever saying the words “I love you,” Jane demonstrated how very much she respects, accepts, and loves her daughter merely in the way she talks about her — and how they’ve navigated their life together, as a team.

By contrast, the only “uncensored truth” Ellenby reveals in her writing is that she sincerely believes her abusive actions are loving ones. But how do things change if the abusers, their apologists, and the exploitive industry that profits off of them, refuse to stop — let alone acknowledge that they are harming others?

We need to be able to speak for ourselves, but instead, #ActuallyAutistic voices are too often shunned and silenced, while the voices of allistic parents raising autistic children are lifted up and praised. A common retort to the autistic adults who condemn this genre of writing and alleged advocacy is that our viewpoint is inconsequential because we aren’t autistic enough. Our needs don’t compare to the mountain of needs their children require because we are able to raise our voices and organize, and by doing so, we are making things harder for autistic people — like their children — who require more care.

Ellenby herself made this argument in response to the backlash her article caused, writing, “You adults with Autism who are reaching out to me in brilliantly worded protest, you who are capable of self-advocating, organizing, who have children of your own — you in no way resemble Zack.”

This is not a new argument. Amy Lutz wrote in 2013, “So what happens to neurodiversity if its lower-functioning supporters are discredited? The movement is exposed for what it is: a group of high-functioning individuals opposed to medical research that, as Singer puts it ‘they don’t need, but my daughter does. If she were able to function at their level, I would consider her cured.’”

When Allies Say Tragedy Is The Only ‘True’ Representation Of Autism

Dr. Jennifer Sarrett, Lecturer at Emory University’s Center for the Study of Human Health, carelessly pontificated that broadening the definition of autism, “could divert attention and resources from the people who need it the most — the significantly disabled.” But this mindset only makes it harder for all autistic people, and further stigmatizes many of us as being not “autistic enough,” while doing nothing to counter the ableism we confront every day.

Whether we were diagnosed early and our guardians taught us how to hide our autistic traits (or force them out of us) through harmful applied behavioral analysis techniques, or we learned the concept of masking or practiced self-degradation on our own as a way to “appear normal” to everyone else — existing as an autistic person in a world that hates us is physically and emotionally debilitating.

And this is why the themes apparent within the ever-rising tide of Autism Memoirs are so infuriating. Autistic children are given little to no autonomy. Instead of being treated as living, breathing, beautiful, and complex human beings — they’re reduced to a plot device, a mechanism for their parents to exploit and profit from. And even worse, such memoirs frame autism as the thing that needs to be battled — rather than the unjust, ableist world we live in. These narratives center the parents, attempt to sever an important component of their child’s identity, and, instead of making the world a better place for them, force their children to change for the world.

It doesn’t have to be this way.

Existing as an autistic person in a world that hates us is physically and emotionally debilitating.
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I believe that these allistic parents do love their children, just as I believe my parents loved me. But despite what they say, their actions are not those of love, which, by definition, requires respect and acknowledgment of another’s autonomy. I was told that I was loved every day, and yet I sincerely believed there were parts of me that I needed to destroy in order to be worthy of that love — and so I tried, and failed, and grew up traumatized, without ever understanding what healthy love looks like.

Now I’m almost 35 years-old and still recovering and unlearning the destructive messages I grew up with, as the effects of trauma don’t just disappear when you leave the traumatic environment. Those of us who have survived and are voicing our anger to these parents and their enablers aren’t “internet bullies.” We are survivors who don’t want autistic children of any age to be abused. Listen to us. Believe us. Your child does not need to be cured, they need to be respected, listened to, and above all, loved — truly loved.

By Reese Piper

Rushing off the subway platform, I race through the crowded streets to try to make lunch with my friend. I’ve canceled on her twice this week, something she isn’t exactly thrilled about. As I cross an intersection, my foot catches the curb and I tumble to the ground, my phone smashing into the busy street. Grabbing it quickly, my daily reminders flash through the cracked screen — wash dishes, clean room, buy tampons, email manager.

I groan, remembering that I was supposed to do all of these things before lunch. How could I forget, again?

The tasks would take my friend less than an hour to finish, but errands require an entire morning for me to complete. I start to panic, contemplating how I will squeeze them into my schedule now. Overwhelmed by the thought of having to sit down and socialize while feeling on edge, I call my friend to cancel. She digs into me for being inconsiderate. I head home, filled with shame, but instead of beginning my tasks, I push the clothes on my bed aside, turn off my phone, and crawl under the covers.

I don’t resurface until the next day.

My inability to properly plan ahead and complete daily tasks has dwarfed my personal growth and well-being since I moved away from home seven years ago. I live in a constant state of disorder, expressed through missed appointments, forgotten text messages, and errands and assignments that take twice as long than my peers to complete. Even tidying the garbage littered across my apartment feels too overwhelming. My poor organizational and cleaning skills have fractured my relationships, prevented me from thriving in jobs, and in the process, destroyed my self-worth.

I tried various planners and organizational apps. Nothing worked. Frustrated, I reached out for help multiple times, relaying to various therapists my struggles with organization and cleanliness and other ailments — such as insomnia, a tendency to get lost in obsessive thoughts, and an inability to switch between tasks. Not one specialist connected the dots. They viewed disorganization and forgetfulness as easily amendable, and never searched for the source of my struggles.

I live in a constant state of disorder.

My last therapist suggested a new productivity app that had promising results. When I told her it didn’t help, she dismissed my organizational concerns altogether, with a dismissive, “Don’t worry, you’ll get more organized when you’re older.” I laughed bitterly. I had been in therapy for three years and my chaotic schedule had not improved with time. Her words were crushingly easy to translate: Don’t be lazy, work harder.

But the thing is, I was grown up — and her words stung deeper than she realized because I’ve heard similar statements from my friends and family before, many of whom view my disarray as a sign of laziness, unintelligence, and selfishness. And after each attempt to bring structure to my life failed, it became hard not to see myself that way too.

Defeated, I lamented my woes to a friend one afternoon. When I mentioned that I obsessively ruminate — something I rarely admit to anyone — a light flashed. “Has anyone ever suggested Autism?” she asked.

Autism Spectrum Disorder (ASD) is a developmental condition that’s thought to be primarily expressed through differences in socializing, communicating, and repetitive behavior. Lesser known are its effects on executive functioning (EF) — which can be defined as a transit map in our brains that tell us how to plan and organize, keep track of time, and remember information in the moment.

Slow EF can bubble into missed appointments, lack of planning ahead, or getting so fervently drawn into the matter at hand that remembering to do basic tasks like washing the dishes fall by the wayside. Yet even though a strong connection between EF and autism has been documented since the ’90s, it’s absent on CDC’s list of symptoms, and is not widely known to the public. Teachers and therapists don’t equate difficulty accomplishing daily living tasks with ASD. Continually showing up late doesn’t raise a flag like, say, lack of eye-contact readily does.

New research, however, is shedding more light on how EF affects autistic people, especially those socialized as girls. It’s presumed that autistic girls adapt better in life since many display stronger social skills. But a five-year study published this year in Autism Research unveiled a different layer — autistic girls are struggling in their ability to function in daily life, perhaps even more than their male counterparts. “Our results indicate relative weaknesses for females compared to males diagnosed with ASD on executive function and daily living skills,” the report noted.

In other words, autistic girls might seem better at communicating, but that’s not bleeding into their ability to function at home.

My therapist was stunned when I broached autism. She hesitantly said, “But you don’t seem atypical.” Like so many people, she believes autism manifests through missed social cues or lack of eye contact, neither of which I possess. ASD is the boy from Atypical and Parenthood, obsessed with routine and order. The person who seems “different” in conversation. My disarray doesn’t fit this mold, and so was never seen as a neurodiverse trait.

The study looked at children and adolescents, which left me wondering — what about adult women? Are there women who pass socially but have difficulties navigating the pressures of daily life? I posted the question online, and a flood of responses came in within minutes.

Sue is a social butterfly and works four different jobs providing support and mentorship for people with developmental disabilities and mental illnesses. The 34-year-old is successful, but struggles to remember appointments, manage money, and clean her room. She was a strong student in school, but her executive-function difficulties followed her through life. “I get overwhelmed and don’t know where to start.”

She first learned of autism at 22, but didn’t give it a second thought. Gregarious and emphatic, she didn’t see herself as autistic. But as she learned more about the different ways it can affect women, she realized that ASD fit her perfectly. She was diagnosed a decade later. She now lives at home and is grateful for the support her family lends, providing gentle reminders to complete tasks every now and then. “I am in no rush to leave home,” she says.

What It Means To Be Highly Empathetic, And Autistic

Sue’s hesitation to see herself as autistic is not unique for people with executive differences. Corina Becker, vice president of the Autism Women’s Network, says, “The stereotype with autism, women including, is that they are really neat and tidy, and while some of that is true, for many people executive abilities don’t work.”

Melissa, a 32-year-old working mother, struggled to keep on top of daily tasks when she lived alone in her twenties. Trash and dirty clothes piled up in her apartment. More than once, her family came over and threw out all her belongings.

She leans on her husband, who does the cooking and cleaning and checks that her clothes are on correctly before work. She has a master’s degree and a successful career, yet despite her accomplishments, she struggles with poor self-worth as a consequence of her differences in organization. “Most people see me as lazy and gross. I’ve never liked myself much,” she says.

‘The stereotype with autism, women including, is that they are really neat and tidy.’

Different executive abilities particularly hurt those socialized as women or who identify as such. “Women are expected to just pick up daily skills naturally. You’re tainted as a moral failure if you can’t get organized,” says Becker.

Bre from Oklahoma echoes this: “I compare myself a lot to other women. I am frequently disorganized and forget stuff — it’s been a lifelong struggle.”

Melissa was misdiagnosed twice growing up, and it wasn’t until four years ago that a psychiatrist finally recognized ASD in her. Since discovering she’s autistic, she’s started to accept herself — but it has understandably been a long road. It’s easy for un-diagnosed people to compare themselves to allistic (non-autistic) people, and it’s easy for allistic people to judge differences harshly if they don’t recognize a disability. Lauren Kenworthy, PhD, one of the study’s authors and director of the Center Of Autism Spectrum Disorders, notes, “If you’re seen as a lazy and stubborn, people punish you for not getting your act together.”

Why I Wish I’d Been Diagnosed With Autism As A Child

Kenworthy explains that support after a diagnosis can help an autistic person learn how to accommodate their differences. Recognizing areas of strain — that maybe those wont’s are indeed cant’s — they can try different methods, such as finding a routine that works. They may also learn to accept, for instance, that maybe both cleaning and cooking are not possible in one day, as each depletes so much energy.

For too many, though, that crucial diagnosis may never come. People who struggle with executive abilities tend to get ignored. The spectrum is labeled through the ability to communicate and socialize; adapting to daily life is not often factored into the diagnostic process. Difficulty with EF is treated as a byproduct of autism, not a defining feature.

All of which explains why, even though the signs were clearly there, I walked through life unnoticed for so long.

Julia Bascom, the executive director of the Autistic Self Advocacy Network and a co-author of the study in Autism Research, explains:

“There’s a long history of research ignoring people’s experiences and voices and focusing on the parts of autism that are most visible to neurotypical researchers. While autistic people tend to describe things like executive functioning, sensory processing, and movement as core parts of our disability, the scientific community unfortunately hasn’t gotten up to speed with us yet.”

I saw myself in every woman I talked to. With each interview, I felt less alone, although I mourned for our shared invisible struggle.

At 25, I finally received my overdue diagnosis. It hasn’t waved a magic wand over my messy room but, at least now, I understand why I struggle with organization, cleanliness, and short-term memory.

Still, while my diagnosis has helped me understand and accept myself, it hasn’t improved my relationships. When my differences surface — when I accidentally wear my shirt backwards, or bleed through my tampon, or tell my friends to meet at the wrong bar, or fall flat on my face in the middle of Union Square — my friends display an eye-roll, a sigh of exasperation, an embarrassed look away, a patronizing laugh, or pure anger.

My best friend that I cancelled lunch with that afternoon laughed when I told her about autism. “You’re not neat and organized. Look at your room, there’s no way you’re autistic. You’re just looking for excuses to not clean!” I recoiled in silence, knowing no amount of explanation would break her stereotypes of autism.

I am happy that, today, I have a better sense of who I am. But every time I look at my messy room, I am reminded of this disheartening fact: So long as my friends, family, and therapists recognize me as allistic, my executive differences will always be interpreted as a personal failure.

Author’s note: To promote acceptance, I refer to myself as an autistic person instead of a person with autism because it is a central part of my identity. The people I featured identify as autistic as well. Additionally, some autistic people do not see their executive differences as a disability — and that is valid. My goal with this article is not to confirm or oppose that, but show how difficult it is to live in a world that doesn’t recognize EF differences.

By Lola Phoenix

Content warning: sexual abuse

Last year, Safe Kids, Thriving Families—a child abuse protection charity—introduced a campaign encouraging parents to not force their children to kiss or hug adults in their lives. The charity posted on Facebook:

“Just to be clear to everyone — WE LOVE HUGS AND KISSES. However, we are VERY MUCH against FORCING kids to kiss and hug. We are a child abuse protection charity who work in our community with victims and families and it is well established in this field that ONE of the ways to protect our children is to change our cultural attitudes towards consent and body autonomy.”

As silly as it may initially sound, I wonder if we could have a similar campaign by adults, for adults. As someone on the autistic spectrum, my life is constantly punctuated by moments where my consent is not prioritized and my personal boundaries are considered too obscure. The irony is that I am the one described as stubborn and unyielding — all while I organize my entire life around meeting the rigid societal norms created by allistic (non-autistic) people. Every day I walk on eggshells to avoid offending others. I make eye contact; I shake hands; I make awkward small talk — all done solely to make allistic people feel better. Meanwhile, my boundaries are considered both too unimportant and too “weird” to be accommodated.

How are autistic people meant to negotiate boundaries and provide consent when they spend the vast majority of their lives having their own boundaries ignored, trampled, or ridiculed?

From an early age, I took things very literally and never enjoyed breaking the rules. The mounting anxiety and the crushing guilt I felt afterwards never seemed to outweigh whatever rewards were promised; I liked doing what I was told. And, especially as a kid on the autistic spectrum, there were some basic rules I understood about life. One of them was that adults were always right and should always be listened to.

I make eye contact; I shake hands; I make awkward small talk —all done solely to make allistic people feel better.

In hindsight, I can’t tell you if being so willing to follow rules made it easier for my babysitter to sexually abuse me, or if being sexually abused — multiple times between the ages of 3 and 9 — made me invest even more in the rules. Maybe I believed that one day the right combination of rules would keep me safe from the sexual aggressors that I, even as a child — as someone society reads as female — held responsibility for defending myself from.

On top of the sexual abuse I experienced, growing up as a disabled child often further underscored that what happened to my body was not something I had control over; doctors and medical professionals had near-complete access to it. And while the intent of my doctors in removing my clothing was very different from those who sexually abused me, the message of both of these experiences congealed: From a very early age, my body just didn’t feel like my own.

Moreover, I was always afraid of the consequences of saying “no,” as there have been myriad situations in my life where saying “no” was simply not safe — or it just never mattered.

What It Means To Be Highly Empathetic, And Autistic

Being blind in one eye, my three half siblings relished doing anything to target my “good” eye, whether it be shining lights into it or throwing things at it. Saying “no” never stopped them; it only seemed to delight and encourage them. I also grew up in the south, where a child saying “no” to a parent is not only unheard of, but could be met with swift punishment. Beyond those cultural norms, though, my family was also textbook abusive. If the wind slammed my door shut accidentally, I used to immediately open it again and apologize profusely. Displays of contradiction were not only unwelcome, but, with the most severe punishment in my childhood home being a belt whipping, extremely unsafe.

In short, whether the retribution was physical, emotional, mental, or all three, there have been many times when “no” was not an option — be it in terms of eye contact, shaking hands, or hugging people. Not doing these things either makes others feel awkward or causes me to stick out, which intensifies my anxiety.

This is the case even in spaces where consent is supposedly “valued” — where people are encouraged to ask before touching. You would think that in such spaces people would be less likely to assume or pressure your consent. But I’ve found that if people are encouraged to ask before touching you, they will then ask way more to hug and touch you, with the presumption you’ll agree due to this wonderful “safe space” exercise — more so than they ever would in a space without these rules.

It’s almost as if the rule of asking before touching is a green signal for people who want to touch. Instead of keeping their distance, people seem to push more for touch, which can make even those spaces unsafe for people in my position. Sure, I can physically say “no” to someone and within those spaces; it’s unlikely they will kick up a fuss. But “no” is more than just a simple word that’s a complete sentence — it’s a sentiment and right I am unused to having and exercising without penalty. It’s a negotiation I don’t always have the energy to have, and don’t need as much in spaces where people are less likely to ask me for hugs.

The reality is — despite self-care-inspired calls to set boundaries — if I were to truly utilize the power of “no” in my life, things would not change positively. I would likely not have very successful relationships at work. I might, as I did in school, be assumed stuck up and rude, and therefore find simple social interchanges more difficult because people would be hostile towards me. Moreover, my anxiety would increase tenfold.

I find understanding what “no” means for me even more difficult as I navigate the murky waters of sexual consent, especially as someone on the asexual spectrum who’s survived sexual abuse. My reasons for wanting to have sex are never as simple as a biological drive or need. Based on what people tell me it is to feel “horny,” I could count the times I have genuinely felt that way on one hand. Most of my desires for physical affection have little to do with the actual, physical reality of those things; it’s much more about what they represent.

My reasons for wanting to have sex are never as simple as a biological drive or need.

Because my brain processes my senses so strongly, physical contact can often come with a lot of anxiety and discomfort. Touching can quickly go from enjoyable to overwhelming, and the prospect of explaining that to a stranger can be daunting. As a childhood sexual abuse survivor and someone who didn’t grow up being touched affectionately — aside from maybe one person — I never really understood the value of touch. As a result, I learned early to do without it. So touch almost always represents something symbolic before I can relax into the physical aspects of it.

This is definitely also the case with kissing. I find the actual physical act bizarre — so much so that I often end up laughing in the middle of making out with someone. It’s the representation of what kissing means that is more enjoyable to me — and the same goes for sex. But there are times when the physical tedium of sexual acts is not something I necessarily look forward to. Included in that tedium can sometimes be consent negotiation.

How do I give enthusiastic consent in such cases? As an asexual person, I appreciate the value sex can add to my relationships — as both a physical act and as a way to bond with someone. But I don’t necessarily feel enthusiastic about it. For me, feeling enthusiastic about sex and being expected to be enthusiastic about it every time is sort of like someone expecting you to be excited every single time you make pancakes. Pancakes are great, aren’t they? (Unless you’re allergic to them for whatever reason.) But you’re not necessarily going to be enthusiastic about making them every single time.

My Inability To Make Eye Contact Does Not Need To Be ‘Fixed’

I feel capable enough with people I know and trust that if I consent to something that I later feel I don’t want to do, I can say “no” without fear. But that trust has to be built with them — and it doesn’t come easy because “no” in my life has never been a complete sentence. And a respected “no” continues to be a power I can never wield in my day-to-day.

Every day I have to negotiate the boundaries of consent with the world as a person on the autistic spectrum, and every day the idea that my “no” is worthless is reinforced. My “no” means nothing next to social conventions that demand I physically act out specific behaviors for the comfort of allistic people — so why would this dynamic not extend to sexual behaviors too? How can I trust that in sexual situations I am not just agreeing to things for the sake of avoiding the awkwardness and tension that comes with vulnerability? Especially when being vulnerable in life has usually come with someone taking advantage of that vulnerability?

Negotiating this every day with myself and the world is tiring. It might be why social situations leave me feeling exhausted, especially with strangers. I can’t let my guard down. I have to continue to perform. On a fundamental level, my desire to be myself is not permitted without an undue amount of stress in my life. I have to sacrifice part of myself for the betterment of the whole in everyday situations. And I am scared that this inner part of me that desires the “peace” of adhering to rules and orders will keep me from saying “no,” even when I should.

Why I Wish I’d Been Diagnosed With Autism As A Child

There are days when I wish sex didn’t exist. Not only as a sexual abuse survivor, but also as an asexual person.

There are days when I wonder if being allistic might mean I could go to more parties and social gatherings, if I might have more friends, if I might feel differently and somehow that might change the frequency of my attraction.

There are days when I wonder if sexuality had been introduced to me in the precocious stumbling method of self-exploration and fun, if a sexual tinge would fill me with desire rather than dread.

Within a discussion of consent there is always a “no” — and even as I’m far away from the storm cloud that shadowed over my world for so long, I am still afraid of the lightning.

On a fundamental level, my desire to be myself is not permitted without an undue amount of stress in my life.

The point of sharing all of this is to encourage a more dynamic understanding of enthusiastic consent. It’s to make people think about what touch and consent mean for disabled people who don’t have the option to consent, or who feel like their boundaries and accommodations are regularly ignored or discounted, who have to sacrifice their bodily autonomy for their own health and survival.

I also want people to think about how living with this dynamic can impact so many other things in people’s lives. When those of us who have felt a backlash to our “nos” say yes to appease others, the ripples of that extend to every area of our lives.

When I checked Facebook this morning, I was greeted with a bunch of balloons and confetti surrounding a giant banner bearing the thumbs-up symbol. “Sarah, your friends have liked your posts 36,000 times!” the text underneath it read. “We’re glad that you’re sharing your life with the people you care about on Facebook. Here’s a look at some photos that your friends have liked.” Then there was a photo of me standing beneath a large, fairly anatomically correct dinosaur statue at a mini-golf course, proudly thrusting my putter skyward in order to draw attention to the plaster dino genitals hovering above my head.

This completely meaningless and arbitrary milestone in my social media career comes at a weird time for me. Not because I think there’s anything particularly hollow or condemning about my eight-figure “like” tally. Most of those likes came out of pretty genuine and earnest interactions on my part and I don’t think they’re indicative of any great ill in my personality or in society. But I’ve found myself increasingly tired by any human interaction online or in person lately, and when I saw that banner my first reaction was “Well, it’s no wonder I’m so tired.”

As someone who spent her formative years as an undiagnosed autistic misfit in a city of 48,000 people who had little to no interest in me or any of the things I enjoyed, I’ve always considered the internet a godsend. Thanks to chat rooms, message boards, and fan sites, I went from being a loner isolated by her atypical interests to being able to form intense, mutually beneficial relationships. While the online universe is often portrayed as a place of artifice where people can manufacture or at least idealize their personas, I found that it was the first place that I could actually be myself — and get something other than disinterest or disdain in return.

While the online universe is often portrayed as a place of artifice, I found that it was the first place that I could actually be myself.
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I don’t think my experience is unusual, either. For every article and condescending cartoon I’ve seen about the supposed fakeness of online life, I can think of multiple examples of people who have made genuine connections — and genuine change — through the internet. Sure, there are people who only present their best moments, and people who use the relative anonymity as an excuse to be abusive. But it’s not like the offline world doesn’t have its share of posers and jerks. As someone who’s spent a lot of time observing human interaction from the outskirts (like many autistics, I study people and then try to reproduce their behavior in an effort to gain acceptance in social situations), I can’t say that I’ve come across any significant differences in the way that we socialize in the real world versus the virtual one. And I suspect that for anyone who does notice a marked difference, that says more about how sheltered and homogeneous their pre-internet lives were than about the nature of the net.

I like Facebook — and occasionally tolerate Twitter — because I use them as an extension of my “real” life. Social media is enjoyable when I’m feeling well, and useful when I’m not. It’s helped me find people who share my somewhat obscure interests (after two decades of obsessing in solitude over the ’60s spy show The Man From U.N.C.L.E., for example, it only took a couple of tweets to find some fellow weirdos to share it with). The internet has been a way to keep in touch with friends and family and stay up to date on their lives during periods when I’ve had neither the resources nor the energy to properly maintain my relationships with them in the flesh. Some people might think that a “like” is a hollow gesture, or an empty rush that can’t compare with in-person communion, but those simple gestures have been a way for me to let other people know I care or am paying attention when I’m not up to the task of an e-mail or a dreaded phone call. As someone who works from home, it’s sometimes the only source of socialization I get in a day.

Friendship In The Age Of Unfriending

Where social media does differ from the meatspace, though, is in terms of volume and speed, and that’s what’s been throwing me off lately. With everything that’s happening in the world, my almost instant access to it — and to the reactions of so many other people — means that I’m constantly taking in more than my head and my heart can process at any given time, and I’m struggling to express myself in any meaningful way in return. My social media presence is relatively sheltered; I ruthlessly maintain a small number of friends on Facebook and have a small number of Twitter followers, and I’m also a white woman which means that I’m generally subject to less harassment than women of color. But it’s still beyond my current capacity as a person and a writer.

I don’t think social media is the cause of my current troubles. It’s just cranked them to 11. If the virtual world is, as I believe, just the real world coming at you faster and more thoroughly, then my issues with it are simply my day-to-day issues amplified. I like to observe people to get a better idea of how to belong with them, so I obsessively read every tweet and post and comment and link that comes across my feeds in a misguided attempt to understand everyone. I want to be a good person, but I’m so hard on myself that I often end up overwhelming myself with information and external and internal criticism and freezing. I struggle with hyper-empathy, and end up taking in everyone’s emotions in a way that makes me feel like a permeable membrane — or like Star Trek: The Next Generation’s regularly embattled Deanna Troi during a particularly harrowing episode. I’m often too overwhelmed to post anything thoughtful or meaningful in the wake of a tragedy, but I also don’t want to give people the impression that I don’t care about these things. And the “why isn’t everyone posting about ____” posts always seem to hit before I’ve had the chance to process. Social media was, in theory, supposed to be a respite from all of that. But being myself on there also means there’s no escaping myself on there.

I’m pretty sure the solution isn’t just to delete my profiles. The world doesn’t need another writer exploring that old chestnut for material. Besides, I don’t want to cut myself off from all of the brilliant people and valuable opinions that social media has helped expose me to. And it’s not like my problems would vanish if I did that. I’d still be a vicious perfectionist whose all-encompassing desire to do better too often leaves me doing nothing instead; I’d just be a vicious perfectionist who is also bored, lonely, and has no one to share my collection of suggestive Man From U.N.C.L.E. gifs with.

So if my problem is that my online life is just my real life on performance-enhancing drugs, perhaps the steps I need to take to make it more manageable are the same ones I’m already doing (or at least attempting) in the rest of my existence. I don’t stop and talk to every single person I encounter on the street, so why do I force myself to catch up on every single tweet, thread, and comment that I encounter? I’ve reached the point where I feel no shame in telling my friends that I’m not up to going out, so why am I so reluctant to give myself time and space away from the internet? I would never encourage my friends to call me in the middle of the night unless it was an emergency, so why the hell do I think to check my phone when I’m awake at 4 a.m., suddenly concerned that I’ll let someone down if I don’t respond right away?

Social media was supposed to be a respite. But being myself on there also means there’s no escaping myself on there.
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So I’ll be trying to put my social media use on some semblance of a schedule and limiting the ways in which I can access it. I have an iPad filled with books and videos that I keep free of any apps that involve active participation on my part, because I think it’s helpful for my particular brain to have a device that encourages the consumption of ideas without demanding any output on my part. I’ll try to find other outlets for my procrastination. (I won’t say that I’ll try to curtail my procrastination, because I’m thinking of realistic solutions and that’s not going to happen in this lifetime.) I’ll put even more effort into resisting the incredibly perverse urge to read Facebook comments, because that’s just common sense.

None of these are particularly exciting or groundbreaking suggestions. Setting boundaries and giving yourself time to relax and recover are pretty obvious ideas, even if most of us tend to ignore them far more than we should. I’m starting to realize, though, that I’m going to have to be more serious about them if I want a more rewarding — or, at the very least — more survivable life in all of its forms. Having a platform where I can share a photo of myself posing with a fake dinosaur cloaca and having friends all over the world who will appreciate this ridiculous moment in my life is something worth fighting for. It’s just not something worth breaking myself for.

When I was a child, my favorite fairy tale was The Snow Queen. I used to imagine that like Kay, the boy in the story, I had been frozen by a splinter in my heart. The splinter is what changed Kay, what prevented him from caring for his childhood friend, Gerda. I always felt like I couldn’t connect with other children, either.

I’ve never understood exactly what it is that allows people to grow so close they almost merge together — to get to a place where they are relaxed and open with one another, talking easily and making jokes without pre-planning it. I’ve always had tremendous difficulty forming and maintaining close friendships and relationships. In primary school, I spent lunchtime standing in a corner of the playground by myself, unconsciously flicking my hands to help me concentrate as I made up fantasy worlds in my head. I preferred this to any physical activities, such as crafts or sports, at which I often struggled — as if my body was blocking me instead of working with me.

At the age of 7, I was referred for an assessment for dyspraxia. According to medical records I only managed to access as an adult, I was given a dyspraxia diagnosis, but my parents were never told about it and the occupational therapy I received was haphazard at best. The Asperger’s assessment I received the following year was even worse. The doctor noted that I was socially awkward, with a “schoolmarmish” demeanor, but I had some social skills and a strong imagination. I told him some things I can now recognize as outright lies: that a girl I barely spoke to was my best friend; that I “loved” Brownies, when in fact I found each meeting exhausting and overwhelming. Even at that young age I had learned to say these things, because they made adults happier than the truth did.

When the first doctor left his job midway through my assessment, I was transferred to another pediatrician. My mother did not allow her to make her own assessment, saying she was worried it would upset me. In a letter written shortly before my ninth birthday, based on the first doctor’s assessment and observations of me at school, the second doctor wrote: “Even though she has a lot which would put her within the Asperger’s Syndrome I feel at this stage it would be more important to be pragmatic and review her following some intervention.”

Her decision not to diagnose me made its full impact known only after I started at Pate’s Grammar School at the age of 11.

Autism has a history of being viewed as a male condition. As Steve Silberman recounts in Neurotribes, Hans Asperger, who was the first to research the condition in pre-war Vienna, said he had never seen a girl with autism (Silberman notes the lack of girls observed by Asperger could have been due to the fact that many of his referrals came from the juvenile courts). Simon Baron-Cohen, one of the most prominent current autism researchers, has called it an “extreme male brain.” Scientists originally thought the ratio of autistic boys to girls was 10:1, but a recent study suggests the relative odds could be as low as 1.65. Personally, I wouldn’t be surprised if it was even 1:1.

The qualities most laypeople associate with autism — social awkwardness, difficulties understanding or being interested in emotions and relationships, obsessive focus on technical topics — are qualities we associate more with males. These traits also find more widespread acceptance when they appear in boys and men. Awkwardness or obsessiveness in men might be understood, smoothed over, even celebrated — think of the popularity of the BBC’s Sherlock, for example. But girls and women do not get the same benefit. We are expected to be “nice,” to keep others happy, to not stand out, to be sociable, to smile even if it makes us uncomfortable.

Recently, both Spectrum News and Scientific American published long features about the challenges facing autistic girls. In these articles, it is suggested that there are differences between autistic girls and autistic boys — for instance, one theory is that the brain of a girl with autism is more like that of a neurotypical boy than a boy with autism — and both articles note it is significantly harder for autistic girls to be identified or receive a childhood diagnosis. Many autistic girls diverge from the common stereotype of autism, something that holds true in my personal experience: I do desperately want meaningful emotional relationships in my life, even if I’m not sure how to get or maintain them, and my interests are in “creative” areas — literature, film, and television — not science. But many autistic girls also experience problems similar to autistic boys, while lacking the understanding, support, and diagnosis that could help them.

We need much more research in order to better understand the experiences and needs of autistic girls and women. We can guess that huge numbers of autistic girls are going undiagnosed, because medical professionals work from a list of symptoms largely based on observing and studying boys. The psychological strain of entering adulthood with no explanation for what is wrong with you, without even being able to admit something is wrong, without access to any support, and with a mask forever fixed on your face cannot be underestimated. The research we do have shows that autistic women experience higher rates of anxiety, depression, and eating disorders.

The gates of Pate’s Grammar School were painted dark green, and dark green is still the color I see when I have to fight down a particularly strong sense of fear. Entire weeks would pass during which I didn’t speak to anyone unless I answered a question in class. I don’t entirely blame my former classmates for excluding me; people have a right to draw boundaries when choosing with whom to socialize. But you can’t spend the formative years of your life in a confined space with hundreds of people who literally act like you don’t exist without it corroding your self-esteem.

My developing sexuality added another layer of complexity and pain — although I felt attracted to girls as well as boys, I suppressed the notion that I could be bisexual. My entire life was based on copying other people in an attempt to be “normal,” and there was nothing in my school, my family, my church, or the books I read that suggested being LGBTQ was acceptable or even possible.

I was one of the estimated one-fifth of British schoolgirls who experienced sexual harassment at school. As a conspicuous “oddball” with no female friends to stick up for me, boys constantly targeted me for both sexual comments and unwanted touching. Once, a whole group of them threatened to anally rape me — within earshot of a male teacher who did nothing to stop them. To survive constantly feeling lonely, unwanted, and scared for my safety — not to mention the crushing pressure to pass all my exams with straight As — I would tell myself, each morning, that I was a robot on a factory line. That it was just my body in the classroom, and my soul was separate from it. That I couldn’t feel anything. But trying to repress my emotions didn’t work, and I engaged in self-harm regularly from the age of 14 on, believing I deserved it for being unable to fit in the way others could.

Soon after I left school, I was sexually assaulted. Trying to pinpoint exactly what makes one a target for assault is a painful, pointless mental exercise, but I was traveling with a group of young women and the attacker specifically targeted and isolated me. I believe he did so because, after years of trying to be the person other people wanted me to be, I was conspicuously meek and passive. I arrived at university still numb from the trauma of the assault, and found other students, yet again, forming friendship groups while I was unable to break down the barriers. I spent most of the first year in my room, surfing the internet, barely able to go to class; that year I made a suicide plan, but did not go through with it.

While suicidal ideation certainly shouldn’t be seen as a blessing, for me hitting my lowest point came as a strange relief. I decided (like Dorothy Parker) that since I couldn’t find the “right” method of killing myself, I “might as well live.” I slowly pulled myself out of the hole I was in, forcing myself to engage more in my courses and extra-curricular activities. I rediscovered what I loved about studying English. I moved from a residential hall into a house with other girls, where I felt more at home.

I also finally came out to myself, and began attending meetings of the university LGBQT group. It was one of the most uncomfortable, cliquey environments I’d ever been in. Just as our understanding of autism needs to evolve to include women, the LGBTQIA community must become more knowledgeable about and open to neurodivergent people. But while I often felt like an outsider in my LGBTQ campus group, I also made one of the first real friendships of my life with a woman I met there. She was autistic, and said she thought she recognized some of the same traits in me.

With new determination, I decided to seek an evaluation and diagnosis. At the assessments that followed, I presented essentially the same personality I had as a child, but this time I was finally diagnosed as autistic. I had not changed. The goal posts had.

When I made a formal complaint to NHS Trust about my misdiagnosis as a child, they arranged a meeting with the second pediatrician. She apologized to me for the harm she had caused due to an honest desire to help me — and the apology is to her credit. But I’m still filled with regret that I did not receive a diagnosis sooner, before I lost my entire childhood to fighting problems no one would admit existed.

Finally getting an autism diagnosis was bittersweet for me. I had long thought that one day I would have a life-changing revelation and understand exactly what it was that separated me from others; I used to believe that if I just worked hard enough, I would learn what I had to say and do to make friends. On one hand, my autism diagnosis has finally provided an explanation for my differences, and helped me understand that my problems with social skills are real — and not a personal failing. I did nothing to cause them; they’re written in my DNA, an inherent part of my identity. But on the other hand, I’ve had to accept that I will never reach the long-imagined goal of being “normal.”

Since being diagnosed, I’ve tried to embrace the social model of disability — that a disability is a “problem” because it is defined as such by society, not because it is inherently negative. I’ve also embraced the idea of neurodivergence, which holds that autism and similar conditions are part of the spectrum of human nature and not problems or anomalies to be solved. I’ve built relationships with other people on terms I personally find manageable and satisfying, and no longer try to match what I think everyone else is doing. I have a few close friendships and limited, discrete social contact instead of forcing myself into nonstop interactions. I try to celebrate the good traits autism and my life experiences have given me, the things that make me unique: perseverance; an eye for detail; the ability to engage with subjects deeply and thoroughly; an excellent memory; a keen sense of fairness and tolerance; an awareness of injustice. While I’ve faced some dark moments, including a second suicide attempt, my diagnosis did mark the beginning of slow progress for me — a process of becoming more comfortable with myself.

Representations of autism in the media tend to center the parent’s viewpoint, focusing on the difficulties and worries of raising an autistic child. Although the tide is beginning to turn, thanks to the excellent writing and committed activism of many autistic adults, many parents still view diagnosis as a death-knell for their hopes and dreams for their child. Undiagnosed adults, especially women, still face multiple psychological and practical barriers to accessing the support and help they need.

To my fellow autistic women, to parents with daughters who show signs of autism: An autism diagnosis is not something to be feared. I understand the trepidation about the condition, especially as it is currently misunderstood and misrepresented in our culture, but I would still urge people to seek out a diagnosis if their practical and psychological resources allow.

For me, with my inherent logic and fact-focused brain, naming myself was what allowed me to begin accepting myself. If we are to save future generations of autistic girls and women from facing many of the same problems I did, we must teach them that they deserve to be seen and valued for who they are — not for who others might wish them to be.

A ll my life I’ve had a sense of magic that I can feel in a place or thing. Likewise, serendipity has always been present for me. Akin to what Robert Moss calls synchronicity, “when the universe gets personal.” It happens when coincidence has resonance, a golden thread to be followed into something greater. So, when I discovered just last month after 50 years of “shot nerves” not only what the autism spectrum was, but that I was on it, what followed did not surprise me. Suddenly it was everywhere: a new book on the history of autism being discussed on C-Span, a rare lunch with a friend during which the topic of the spectrum came up, a news story about Microsoft adjusting hiring practices for autism, The Establishment looking for essays about being on the spectrum.

There are plenty of reasons to tell one’s story. For one, it adds to the well of human knowledge and what disability means — but I want to talk about its greater meaning; what each of us holds within and why that makes understanding disabilities like the autism spectrum all the more important.

In A Soul’s Code, James Hillman wrote that:

“Each of us has a daimon, or part of soul, that is the acorn of our true nature. Fate is not sealed, but signified: our daimon infuses particular events with emotional importance. Events have intention. To look at events of childhood through the lens of purpose changes ‘negative’ behavior into expressions of the necessities of the soul. Time only slows and holds back realization. For the daimon, time can’t cause anything that is not already present in the whole image.”

This was strikingly true for me and how I grew up. The grit and chaos of 1970s New York was a backdrop to extreme personal and family dysfunction. An artist dad coming out of the closet; a mentally ill mom experimenting with sex, drugs, and music. Any chance at a normal existence was negated, and yet this very fact eventually afforded me an opportunity to live amid magic and serendipity, to find the deep knowledge underpinning the world we live in — because I was so exposed to trauma.

Again, we find Hillman understanding that as we grow up as humans, our souls must grow down into the world, a requirement of deepening, as he says, though the soul is reluctant. Who can blame it? My earliest memories are feelings of homesickness so deep and wounding they scarred. That feeling has never left me; it is, as Jung called it, a problematic theme, something one cannot change about oneself.

Stephen Buhner points out Hillman’s take on childhood is particularly poignant when it comes to children with ADHD, how:

“Exterior oriented terms should rather be indicators of a child’s interior: distraction becomes boredom, impulsiveness self-generated explorative behavior, disorganization a failure to follow rigid regimes. . .”

Noga Arikha, in her book Passions and Tempers: A History Of The Humours, understands that emotions in their raw state are cognitive tools. How we feel the world is is who we are, and the Western world has made feeling anything outside what is considered normal a sin.

If my mother had not been so far outside the system herself, I would likely have ended up pinned down in some type of institutional setting. Instead, because I could not function in the world, I was left outside it. Where others became entwined in the minutiae of family and job, I was left with books and nature as my only companions, able then to perceive bigger patterns, to delve into the depths of the natural world, of human history, the history of science and spirit, of consciousness itself. This is my daimon’s gift! Despite pain (or maybe because of it), when given a chance, our soul will react to the world with magic and serendipity. But one must be open to it, and more importantly, one must let others be open. Our daimon will call us out. The truth then is that labels are only true for those who apply them, and reasons only matter for those who reason with them.

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Emotions in their raw state are cognitive tools.
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Jill Lepore, in Book of Ages, wrote about Benjamin Franklin’s sister, Jane. Little known in historical accounts, she was one of the closest people in his life, and though she was not allowed an education and had a very difficult life, losing many of her family members early, she did on occasion send her brother suggestions of books he should read. One of these was by the Welsh philosopher Richard Price. He wanted to show, as Lepore comments, that nothing happens without a good reason. That the great waste in the natural world had purpose. That it may take “three hundred thousand seeds to make an elm, six hundred eggs to make a spider” for want of a favorable situation.

And what is true for elms and spiders is also true for the human species; how many brilliant minds have been lost for lack of opportunity, though as Price says, even these minds are capable of endless future progress, so there is no wasted humanity. There is only a “seeming waste.” “The seeming waste may, for ought we know, answer important ends.” Price felt that no one dies for naught. Though the majority of humanity has lacked opportunity to shine, the mere fact of their being lays the groundwork for those whose brilliance does change the world.

This simple, yet elegant understanding of how nature works is an example of foundational knowledge — something that is fundamental to who and what we are, and what gives our lives meaning. We come to understand that we owe those who have struggled, and continue to struggle, our gratitude. That everyone matters, the poor and disabled as much if not more than the rich and able, for without every single person there would be no us. No one lives their life alone. When we treat others with disrespect and box them into corners without a voice, we are only really hurting ourselves, for we are all of this one world.

Yes, we are all different, but we are also made of the same stardust. The same starlight energizes us, the same moonlight shines on all our hopes and dreams. Looking back over the thousands of years of suffering people have endured, it hasn’t been for naught, but part of the greater tide of life on earth. Part of a greater whole from which we cannot be divided, a whole whose journey is open-ended and ever unfolding. Which means every voice, each person, has meaning, every story part of the tapestry that is us, and when we deny others dignity, we tarnish something priceless.

And so, being outside the realm of normal, I will with gratitude continue to believe in magic and serendipity and to be thankful for who and what I am.

“Some people on the spectrum may not want a cure and may choose to advocate for themselves. Others who live with the serious medical conditions and other challenges that often accompany autism rely on Autism Speaks to advocate for them. A vital part of our mission is to speak about and address the needs of the broad community and to provide support to those who are seeking our help.”

APL classroom (Credit: Academy for Precision Learning)

To read Autism Acceptance Month stories by #ActuallyAutistic writers, check out “My Inability To Make Eye Contact Does Not Need To Be Fixed,” “How Autism Awareness Goes Wrong,” and “No, I’m Not ‘Glamorizing’ My Autism,” and stay tuned for more stories throughout the month and beyond.

The combined third/fourth grade classroom at Seattle’s Academy for Precision Learning (APL) is humming with activity. An inclusion-based private school created in 2007 to meet the needs of autistic children in grades K-12, APL boasts classrooms that accommodate a spectrum of behaviors and learning styles. Most children are seated at desks; one small group of students is working together around a table, while another child with noise-canceling headphones is sitting at the back of the room with an aide beside her. The teacher is giving a lecture about the Battle of the Alamo; children are wiggling and talking quietly to themselves. One child occasionally shouts out random words, but only a handful of the classroom’s mix of autistic and neurotypical students seem to notice.

As the teacher explains the Texans’ strategy during the battle, one little boy takes his paper and pencil up to the whiteboard behind her. “I can take better notes up here,” he says, placing his paper on the whiteboard. The teacher acknowledges him and continues her lecture while he meticulously copies down everything she writes on the whiteboard on his own paper. After a few minutes, he returns to his desk, and the teacher continues without pause, as if nothing out of the ordinary has occurred.

Indeed, at APL, none of this is out of the ordinary — it is the typical student experience.

APL’s variety of learning environments is rare. Most schools focus on providing supports to help autistic children access mainstream classrooms instead of changing how teachers educate all children to better support those who are autistic. This common emphasis on mainstreaming autistic children reflects the divide between those who seek to treat autistics with the goal of “normalizing” them, versus autistics who argue that it is society’s expectations, not their autism, that disable them.

The rift between these competing ideologies extends far beyond education alone; its ripples can be felt in every aspect of autistics’ lives, including the scope and focus of research funding, treatment approaches, and public policy strategies. The largest and best-known autism advocacy organization, Autism Speaks, has shaped autism awareness as we know it, fueling the dominant — and problematic — narrative that autism is a malady to be cured.

Autism Speaks’ awareness efforts have succeeded in raising awareness, that much is certain. What’s less certain is whether their particular brand of “awareness” accurately reflects the needs of the population they profess to serve. From autism treatments and therapies to medical research and funding, Autism Speaks’ messaging dominates the conversation around autism. What’s less often heard are the voices of autistic adults who say their autism is central to who they are — and they have no interest in a cure.

Learning While Autistic

Autism is described in medical literature as a developmental disorder defined by impaired social interaction and communication, and marked by restricted or repetitive interests or behaviors. It is considered a “spectrum” condition, with impacts ranging from mild to more severe and debilitating.

Receiving an autism diagnosis can be a lengthy process, and it generally doesn’t occur in a single appointment. Autism is diagnosed by a physician using the criteria established in the Diagnostic and Statistical Manual, Fifth Edition (DSM-5), which is based on family and individual history, clinical observation, and the existence of symptoms in early childhood.

After a child is diagnosed with autism, most families are left to figure out the next steps on their own. Most of these families rely on the public school system to provide appropriate supports and services, but many of the students at APL came to the school after their parents became frustrated by traditional educational approaches. For these parents, the school has been a godsend.

Unlike traditional public and private schools, which generally only offer a self-contained special education classroom or inclusion programs that focus on integrating autistic children into a mainstream environment, APL creates space for autistic children to be and act autistic while also integrating behavioral therapy into the classroom. APL’s goal is to have classrooms that are comprised of equal numbers of neurotypical and autistic students. For now, there is about a 1:3 ratio of neurotypical students, most of whom are siblings of autistic students.

Standing in the hallway watching APL’s students participate in their lessons, I see how the program could be beneficial. If autistic children can receive behavioral therapy and academic instruction in an inclusive environment, it seems like the best of every possible world. Before I leave, I ask for tuition information and find myself wondering how I could swing the school’s tuition for my own autistic daughter. APL’s tuition is based on four levels of services, ranging from students who require no supports (neurotypical children) to students who require a dedicated 1:1 aide for all or most of the day: It begins at $11,000 and goes up to $43,250 for elementary school. I start to consider whether selling a kidney to afford third grade tuition is a viable option.

I met Xolie Morra Cogley at APL. Cogley is an autistic adult who is in the process of creating a music therapy program for the school. She discovered APL last year and has been an evangelist ever since. “This is the kind of school I wish I could’ve gone to,” Cogley says.

A few days later, I give Julia Bascom a call to see what she thinks of the program; she’s the deputy executive director of the Autism Self-Advocacy Network (ASAN), a grassroots nonprofit organization dedicated to advancing the civil rights of autistic individuals. Like the majority of ASAN’s executives and leaders, Bascom is autistic.

When I explain APL’s concept to Bascom, she isn’t as enthusiastic as I expected. “A 50:50 ratio isn’t inclusion,” she says. “Creating an autistic school and then filling it with neurotypical students to meet an inclusion goal is reverse inclusion.”

Autistics comprise between 1 and 2% of the population in the United States. Based on that prevalence rate, a typical elementary school classroom of 25 children would have only about one-quarter to one-half of an autistic child (for safety’s sake, we’ll round that up to one). Bascom describes an inclusive educational environment very differently from APL’s focus on ratios. “A truly inclusive classroom is where students with and without disabilities are learning the same content at the same time, with the supports all students need to be successful,” she says.

What that could look like in practice is simple. Imagine another fourth grade class learning about the Alamo in a public school general education setting. Most children are reading books about the Alamo that were selected to coincide with their individual reading levels, but one child with Down syndrome who can’t read yet is listening to the book on tape. The teacher is working with a small group of students on a project, and most children speak their comments and questions; however, one non-verbal child is using an iPad to type their responses, while another child who isn’t able to speak or use an iPad points to the correct answer instead. In Bascom’s example of inclusion, there is no need for a specific autism-based program, because the school system itself has become supportive of all students and their individual needs.

Bascom’s dream is to slowly but surely overhaul the education system so inclusivity becomes the norm, not an anomaly. While implementing this newfound level of altered infrastructure seems daunting, she argues this paradigm is not necessarily more resource heavy — in funding or staff — as existing special education programs could be revamped to provide this support-based service model directly to students in general education classrooms.

My autistic daughter attends a Seattle public school and is enrolled in Access, an autism-focused inclusion program that allows children to integrate into general education classrooms (often with instructional aide support). My daughter relies heavily on her aide for emotional support, emotional regulation, fostering self-advocacy, and social-skills building. While my daughter’s experience in a mainstream setting in no way translates to Bascom’s vision, her inclusion in a general education classroom has already altered the classroom experience for all children in a positive way.

For example, when my daughter needed a quiet break spot to calm down, the teacher was surprised when many other students began to use the area, too. Likewise, my daughter needs noise-canceling headphones to occasionally block sensory input; soon the bin of headphones was being used by neurotypical kids who became overwhelmed as well. These adaptations were introduced to the classroom to benefit one autistic child, but they have quickly become a normal part of that classroom’s second grade experience.

Similar approaches to the Seattle Public Schools’ inclusion model are being implemented on a national level through the Schoolwide Integrated Framework for Integration (SWIFT) program, which is funded by a five-year grant from the U.S. Department of Education Office of Special Education Programs. The program emphasizes that 30 years of research indicates that all students benefit from inclusive education, including typically-developing children who develop increased empathy and improved social skills by sharing their classrooms with autistic children.

While the SWIFT program is promising, it’s in its early stages. For many families who are still struggling to get their children’s schools to follow an existing Individualized Education Plan (IEP), much less create an inclusive utopia, Bascom’s ideas seem like pure fantasy. Bascom acknowledges that parents often turn to schools like APL because they can’t get the supports their children need from their neighborhood schools, but these schools can end up hurting the populations they aim to serve.

“‘If you put all the autistic kids in schools that are designed for us from the start, then you’re not affecting the scale of change that you need to see in the rest of the world,” Bascom says. “Schools like that fill a need from a lot of perspectives because a lot of kids aren’t getting what they need, but when you do that for [physically] disabled people, historically things deteriorate very quickly.”

Further, when the quality of a student’s educational supports and their resulting progress is dependent on their parent’s income, the success of autistics can become inexorably linked with socio-economic status. The same thing is already true of autism treatments and therapies that are rarely covered by Medicaid, and even a child’s ability to access an initial autism evaluation and diagnosis.

As Bascom suggests, the only reason programs like Access exist in Seattle public schools is because parents forced the school district to implement the least restrictive environment that met their children’s needs through lawsuits — not by abandoning public schools for private schools. Public school education is guaranteed by law to all students, regardless of their abilities, and it’s free (unlike APL).

From a public policy perspective, providing better access to schools, treatments, and therapies that meet the needs of all autistics takes priority over serving the needs of a few more economically advantaged children.

The Autism Definition Divide

While the medical community considers autism a developmental disorder, the DSM-5 definition of autism bears little resemblance to many autistics’ descriptions of their autism.

At its heart, the difference between Autism Speaks’ and ASAN’s concepts of autism is that Autism Speaks sees autism as a set of symptoms and deficits, whereas ASAN and Cogley see their autism as an integral part of who they are. It is a distinct neurology and a specific way of being a person.

When I ask Cogley what’s good about being autistic, she says, “I’m an artist, I’m a musician, I’m an outside of the box thinker. I love in a different way and I have a different sense of what things are in life.” Cogley doesn’t deny that her autism also comes with legitimate challenges, but she says many of those challenges are symptoms that can be treated and cured without erasing her autism itself. “Those things aren’t the autism. The autism is the beautiful parts of who a person is. Autism makes me me.”

But for parents, whose children may be struggling more with autism’s associated challenges than Cogley does as an adult, that knowledge isn’t always enough. Rebecca Kerl is a Seattle mother with three children, all of whom are autistic. She says she believes their autism is an integral part of who they are, but that hasn’t always made parenting them easy. Her oldest son, for instance, flew into such a severe rage when he was entering puberty that she feared for his safety. “He was literally running through the house screaming. He seemed like he was trying to get out of his own skin. I remember him screaming, ‘Get me out of here! Get me out of here!’ and my heart just broke for him,” she recalls. Believing strongly in neurodiversity, as Kerl does, isn’t necessarily enough to equip parents for the daily physical and emotional challenges of parenting a child with autism.

Other parents of children on the autism spectrum struggle to accept the concept of neurodiversity at all. Instead, they look to therapies and treatments to help reduce or eliminate the challenges of autism. If offered a cure for autism, many of them say they would take it for their child in an instant.

Autism Speaks views autism similarly. All but one of the key players in the organization are parents of children with autism; none of them are autistic themselves, although Lisa Goring, the organization’s executive vice president of programs and services, notes there is more than one autistic adult on their national board. Their agenda is clearly shaped by their own experiences and is largely focused on supporting parents as they navigate a difficult diagnosis. These experiences are an often overwhelming whirlwind of therapies and treatments, insurance battles, endless paperwork, IEP meetings and arguments with schools, children who can’t use the bathroom or live independently, and meltdowns that can turn violent. When I ask Goring how Autism Speaks reacts to autistic adults who say autism is their identity, her tone sharpens. “We view autism as a disorder. It affects 1 in 68 children,” she says. “That’s their prerogative. If [autism] is their identity, that’s up to them.”

The organization is in a thorny position. There is no denying that having a family member with autism can be stressful; some studies have even found that mothers of autistic children show similar stress responses to combat soldiers and they are more likely to experience depression and Post-Traumatic Stress Syndrome (PTSD) than mothers of neurotypical children. But approaches that treat autism like a disease can be equally traumatic for the autistic person.

Autism may be an identity for some autistics, but it creates higher supports needs from parents, teachers, and even society at large. When I ask Goring how Autism Speaks straddles the tenuous line between supporting parents who want a cure and respecting autistics who view autism as their identity, she says: “‘It’s challenging at times and it needs to be a balanced scenario. Our goal is to try to help mitigate some of those challenges [autistics and their families face] to the best of our ability, but our goal is also to help highlight some of their strengths.”

Beyond ‘High And Low Functioning’

In the hallway of APL, as Cogley and I sit on long wooden benches — flanked by massive windows with students and staff talking and laughing as they walk by — it’s difficult for her to communicate. She experiences frequent tics that include repetitive throat clearing and stuttering, and her frustration and embarrassment are palpable.

Cogley was invited to speak and perform with her band, Xolie Morra and the Strange Kind, at a TEDx talk late last year after appearing on Jimmy Kimmel Live in 2014. Watching Cogley struggle to speak, I wonder how she was able to perform on a stage in front of thousands of people. I have stage fright myself, and I assume hers must be worse than mine, but she smiles and shakes her head when I ask her about it. There is a barrier between her and the crowd when she’s on stage, she explains, and that barrier allows her to perform without the type of stress that I feel when I go on stage. It’s actually easier for her to go on stage in front of hundreds of people than it is to speak to me in a busy hallway.

Cogley hasn’t always been able to perform. After suffering from severe health problems that eventually required surgery a few years ago, she suffered dramatic side effects from the common medications she was prescribed. Her stuttering and tics became so severe that at times she entirely lost the ability to speak. As she recounts the experience of having her thoughts race and her mouth unable to form words, she begins to cry. “I know what it’s like to be to the point where you can’t talk. I had to re-learn how to talk,” she says. “I know what it’s like to have all of these thoughts in my head, but not be able to get a word out.”

Cogley’s history makes it clear that the difficulty of living with autism in a neurotypical-optimized world may change over a lifetime — or even over the course of an hour. At the beginning of our interview, her tics are ever-present, making communication challenging for her. As we continue speaking and she begins to relax, they nearly vanish, only to resume when a new person joins our group.

What some people refer to as “low-functioning” autism, now categorized by the DSM-5 as severity level 3, is often equated with being non-verbal, whereas “high-functioning” autism, or severity level 1, is what people imagine when they think of Asperger’s syndrome — quirky, but socially awkward. If Cogley can be nonverbal or highly verbal, and everything in between, how does she fit into those neat diagnostic boxes?

The answer for Cogley and many other autistic adults is that they don’t. “The labels of high functioning and low functioning are actively unhelpful,” Bascom says. “They don’t give you the specific information you need to know about someone’s needs.” The types of information people need to know about autistics are rooted in their individual support needs, not an artificial functioning distinction. “It’s useful to know if the person can talk, live alone, or what their impairments are, but a functioning label doesn’t give you that,” she says. “[Speaking in terms of support needs] can take a little bit longer, but it gives you a more accurate description of what’s going on.”

Shifting the focus from levels of impairment to support needs is based on the idea that every autistic has their own spectrum of functioning that varies across skills and abilities: an idea that is central to ASAN’s mission. This perspective — which focuses on acceptance or the celebration of autism rather than searching for a “solution” — can be a startling one for a generation that has come of age in the Autism Speaks-inspired era of “Light It Up Blue,” which seeks to find a cure.

The “C” Word

There is no treatment or “cure” for autism today, but Autism Speaks is dedicated to finding one. The vast majority of the organization’s research funding supports the search for a cure, even though no one really knows what a cure might look like or whether autistics would want one if it became available.

The debate over the ethics of curing autism is by no means academic. New studies emerge on a weekly basis that support the idea of autism as a complicated, multi-factored disorder that can be triggered by a variety of genetic mutations or exposure to hormones or toxins while in utero. As this vast array of causes and contributory factors is identified, it’s not surprising that researchers want to find ways to treat, cure, or even prevent them.

Recently, scientists at MIT discovered that when they turned off a rare mutation in the shank3 gene that creates autism in mice (and a very small percentage of autistic humans), the mice’s brains regained almost entirely neurotypical function even when the mutation was reversed as adults. While scientists emphasize that this discovery is still light years away from providing a cure for autism in humans, there’s no denying the possibility may exist as science progresses. This could mean that someday children and adults with autism could undergo genetic modifications or treatments targeting specific genes to essentially “turn off” their autism.

From the get-go, using the word “cure” raises the hackles of autistics who view autism as their identity. “Autism is every aspect of autistics’ cognition or sense of self,” says Bascom, who is herself autistic. “When you talk about curing autism, you’re talking about fundamentally changing someone. It’s a very clear way to communicate that you’re not valuable in and of yourself, and that’s a really difficult thing to hear.”

Bascom says there are few autistics who are looking for a cure for their autism — although most would gladly accept a cure for commonly co-occurring conditions like epilepsy, anxiety, and depression.

Many parents of autistic children (and Autism Speaks) see it differently. These families want their children to experience fewer hardships and less pain. They view autism as a medical disorder their children have, not an integral part of their identity. Much like ADHD, anxiety, or depression, which can all create distinct changes to brain chemicals and neurological functioning, these families view autism as a medical disorder that can and should be treated and cured. “We don’t want people to struggle if they don’t have to,” Goring says. “We want to be able to really help people live lives that are meaningful to them.”

It was clear as I spoke to Goring that she didn’t want to talk about a cure. When I broached the subject, her press representative quickly cut short the interview. She offered to connect me with another person at Autism Speaks, and I sent her a couple of questions later that day. A few days later, I received a reply from CJ Volpe, chief of communications at Autism Speaks:

Volpe’s reply reinforces Autism Speaks’ conception of autistics who advocate for themselves as being less severely impacted by autism than others. I wonder how Volpe’s clear distinction between groups of autistics holds up in the face of the autistics I’ve met: Bascom serves as executive director of ASAN but can’t live independently, and Cogley is sometimes non-verbal but also gives TEDx talks in front of a crowd. If these “functional” distinctions begin to break down when I talk to two autistics, it’s hard to imagine their applicability to an organization representing autism as a whole.

Despite Volpe’s insistence that the organization respects autistics who do not want a cure, he goes on to say: “Looking toward the future, Autism Speaks has launched a genetic research project, MSSNG, which seeks to identify the many forms of autism. The goal of this research is to pave the way for the development of personalized medicines and treatments.” Personalized and gene-based medicine is the wave of the future, but it also implies that Autism Speaks supports genetic modifications that could one day entirely erase autism.

One of the problems with the search for an autism cure is that in practice it tends to ignore the real-life needs of autistics. Of the more than $1.3 billion spent on autism research between 2008–2012, only 2.4% went to research on services and supports, while the amount dedicated to investigating the needs of autistic adults was only 1.5%. This overwhelming focus on finding a cure prevents autistics from getting the help they need right now as the bulk of the research money goes to highly-controversial cures that simply don’t exist today. “The idea of a cure has a huge impact on how people talk about autism and how they treat autistic people,” Bascom says. “A cure is often used to justify not investing in the supports autistic people need.”

In the future, as more treatments or even cures become available, Bascom worries that autistic symptoms may become perceived as a sign that someone is too poor to access the treatment or cure. “When progress comes, it doesn’t get distributed evenly at all,” Bascom says.

By contrast, many parents worry that letting go of the concept of a cure will leave autistics without support. There’s no guarantee that the cure-driven funding that exists today would be diverted into autistic support needs. Rather, much of it could be shifted from autism to another disease that’s viewed as curable and poses a public health crisis. After all, if autistics say they are happy being autistic, should research dollars and public health funding be devoted to their care and support?

ABA: Child Abuse Or Proven Autism Treatment?

There are no current treatments for autism itself, but there are a variety of treatments available to lessen or reduce the symptoms of autism. These treatments include occupational therapy, physical therapy, counseling for mental health concerns, and behavioral therapies. While opinions vary dramatically about how to treat autism, one of the most frequently-prescribed and controversial methods is applied behavioral analysis (ABA).

At its core, ABA is a behavioral therapy that uses a system of positive rewards for desirable behavior and lack of response or punishment for undesirable behavior. ABA can be used to address everything from obvious behavioral concerns like meltdowns and physical aggression to subtler challenges like maintaining eye contact, turn taking, conversational engagement, and reciprocity. ABA is one of the most scientifically-vetted and recommended therapies to treat autism, but it’s also incredibly expensive; many insurance companies don’t cover the treatment, which runs more than $100 per hour for as many as 20 hours per week. Families frequently encounter lengthy waitlists even when their insurance covers the cost of therapy.

When my daughter finally became eligible for an ABA program late last year, after two years on multiple waitlists, I hesitated over whether to enroll her. Many autistic adults liken the program to child abuse; Ole Ivar Lovaas, the UCLA psychology professor who developed ABA in the 1970s, initially relied on electric shocks delivered by cattle prods to reinforce appropriate behavior. It only gets worse from there. Lovaas began his career by co-authoring a paper with George Rekers, of sexual identity and gender non-conforming “treatment” infamy. Rekers, who is a founder of the conservative and vehemently anti-homosexual Family Research Council, has used his research to argue that homosexuality can be “cured” by conversion therapy. (He also may or may not be gay.)

The paper Reker and Lovaas published together was the case study of a little boy, Kirk Andrew Murphy, whose mother became concerned he was gay when he began playing with dolls and engaging in other “girly” activities. Using a system of positive rewards for engaging in “masculine” activities and negative rewards (including beatings by his father) for pursuing “feminine” interests, Reker and Lovaas claimed Murphy had been “cured” of his homosexuality and held him up as a conversion therapy success story. Murphy grew up hiding his homosexuality to avoid punishments and, after years of increasing self-hatred, he committed suicide at age 38. Conversion therapy for minors is currently banned in four states and the District of Columbia.

Whatever Lovaas’ intentions might have been, there’s no argument that his methodologies were horrific and many autistics remain deeply suspicious of ABA therapy. Referring to Lovaas’ involvement in conversion therapy, Bascom notes that “we seem to have decided as a society that that’s not okay, but as an autistic, I can’t decide why [conversion therapy] is not okay, but ABA is.”

That said, Bascom concedes modern ABA often bears little to no resemblance to the program’s undeniably troubling roots. Because ABA is frequently the only autism treatment covered by insurance (42 states and the District of Columbia currently mandate that insurers provide at least some degree of ABA therapy), there are many practitioners who bill their services as ABA who aren’t practicing traditional ABA. These treatments, which can focus on things like teaching children adaptive strategies for reducing anxiety levels, coping with sensory pain, and identifying negative feelings and implementing positive methods of processing them, are rooted more in cognitive behavioral techniques than traditional ABA.

It’s pretty obvious that using cattle prods on children is unethical; most parents would never enroll their child in such a program. But modern ABA’s seemingly-benign treatment goals, such as teaching autistic children to maintain eye contact through the use of positive rewards, may still conceal troublingly autism-unfriendly beliefs. Autistics, Bascom emphasizes, often don’t make eye contact for a reason; it can increase anxiety levels and make them feel extremely uncomfortable. “Whether you’re teaching us to make eye contact by slapping us when we don’t or giving us an M&M when we do, they still have the same goal,” Bascom says of such programs. “The end goal is a child who is indistinguishable from their neurotypical peers and we don’t think that’s ethical or acceptable.” She cautions parents to be mindful of the treatment goals they choose and to ask themselves these questions: Does it help? Is it something my child needs? Will it help them be a more self-determined person?

This is another area where some autistics and Autism Speaks diverge. Autism Speaks funds a variety of research studies into developing and validating ABA therapy techniques. On the ABA section of their website — which notably fails to mention Lovaas, his early methodology, or his ties to conversion therapy — the organization notes that some preschool children who experience two or more years of early intervention with ABA therapy “acquire sufficient skills to participate in regular classrooms with little or no additional support.” Conformance to neurotypical expectations seems, at least in part, to be a goal of Autism Speaks’ ABA funding.

The Problematic (And Lucrative) Conceptualization Of Autism As Tragedy

Autism Speaks has long come under fire from autistics who are offended by what they describe as fundraising efforts that are rooted in fear and pity, rather than respect for autistics. The group Boycott Autism Speaks, for instance, says the organization “routinely dehumanizes autism for personal gain.”

The organization, of course, sees it differently. They believe it’s possible to both respect autistics and fund research into a cure for the disorder. Still, it is undeniable that there is a consistent message from Autism Speaks that autism is a tragedy; in fact, in a 2013 letter, Autism Speaks co-founder Suzanne Wright painted a dismal and frightening picture of autism, calling it a “national emergency.”

This conceptualization of autism as tragedy has been integral to both Autism Speaks’ messaging and its success drumming up financial support. The organization has grown into a behemoth in just over a decade, pushing autism from the fringe to the center stage of disease awareness. At least somewhat owing to the organization’s awareness efforts, autism rates have increased from 1 in 166 in 2005 to 1 in 68 today. While Autism Speaks relies heavily on the idea that the prevalence of autism itself has increased, the scientific jury is still out. Many scientists point to a mixture of different data collection methods and increased awareness to explain at least some of the leap.

Regardless of whether autism prevalence is increasing, ASAN worries that portraying autism as a dire diagnosis is problematic for autistics. “When the message of autism awareness becomes one of stigma, dehumanization, and public hysteria rather than one of civil rights, inclusion, and support, we face a grave threat to our efforts to be recognized as full and equal citizens in our communities,” the organization notes in a position statement on its website.

Many of the problems with Autism Speaks could be resolved by the organization adopting more inclusive attitudes and practices, such as ensuring autistics are included among its leaders, and abiding by ASAN’s guiding principle: “Nothing About Us Without Us.” Autism Speaks has been resistant to these criticisms, and has continued to operate without a single autistic among its executive leadership. When I ask Goring about the issue of representation, her response is curt: “All of our jobs are open for anyone to interview. There are board members at the national level who are on the spectrum.”

Despite the controversy surrounding the organization, Autism Speaks’ messaging dominates the media. It is currently in the midst of a multi-year ad campaign that features somber music and parents speaking in subdued tones about their children’s challenges. When my neurotypical 8-year-old daughter first heard one, she turned to me and asked why they thought autism was such a bad thing. “Autism isn’t bad,” she said. “It’s not like it kills you or something. I hate those autism ads.”

Cogley takes a different view of Autism Speaks and even the radio ads in question. She emphasizes that the words in the ads aren’t problematic, just the sad music and voices. Even changing to more upbeat music could have made the ads more positive and respectful of autistics while still acknowledging the challenges parents face. She believes there is less of a divide between these organizations than many think. “The hang-up isn’t necessarily what they are trying to do, the hangup is the wording,” she says. “We all have the same intention, we just don’t realize it.”

***

Reflecting on Bascom’s thoughts on the dangers of encouraging conformity, I begin to wonder what’s so wrong with trying to fit in. We all try to conform to at least some degree, and there are positives to feeling like we belong with our peers. If inclusion is about creating a system that works for everyone, instead of constructing an artificially inclusive environment like APL, autistics will never have anything but the experience of being a minority group. As someone with a rare disease myself, I know that it sometimes feels good to be surrounded by people like yourself.

ASAN recognizes the value of bringing autistics together. Each year, they host 15–18 college students in Washington, D.C. for a weeklong summer leadership academy called Autism Campus Inclusion (ACI). ASAN begins each session by announcing they are in an “autistic space,” where everyone in attendance is autistic and free to stim or behave however they need to in order to feel comfortable. “[When they hear that] their bodies just relax and you can hear a sigh go through the room,” Bascom says. “For many, this is the first time they have been in a space with other autistic people, and there is this delight and a sense of homecoming.”

Blessing the technology that allows me to tear up during phone interviews without anyone being the wiser, I realize these rare moments of being surrounded by other autistics is the only time autistics experience the same privilege I do every moment of the day.

This sense of belonging is what APL has the potential to offer, too. “For me, the most positive things about autism don’t happen in isolation; they happen with other autistic people,” Bascom says. “When I am in a staff meeting and everyone at the table around me is stimming in some way, it feels like home.”

***

Lead image: flickr/Philosophographlux

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