The Battle For The Future Of Autism Advocacy
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:
“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.”
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