Aaron Wright

@aaronwright5 | contributor
As the parent of an autistic teenager Aaron Wright has spent countless hours advocating for access and believes that all children have a right to an appropriate education. His award-winning book, Thirteen Doors: A Family’s Fight for Equal Access to Education, is an honest, behind-the-scenes look at the obstacles parents of disabled children must overcome when engaging their school districts for special education services.
Aaron Wright

What '60 Minutes' Got Wrong About Autism and Employment

Anderson Cooper’s recent short piece on “60 Minutes” had been recommended to me by family and friends as an example of positive progress for employing autistic adults. Anderson himself cast the segment as evidence of hope for parents of autistic children approaching the “cliff” of adulthood and falling into a society unprepared and resistant to accepting autistics into the workforce. As I watched with my 15-year-old autistic daughter, I could feel her body twisting in discomfort with every progression of the discussion. Her strongest reaction coming as a result of how autism was being depicted as a male-dominated “spectrum” of severity and fixed unique interests. By highlighting skills such as blockchain development, reading fine print for errors, or developing software used by NASA astrophysicists, the segment fell in line with everything our family had been told about what autism looks like since she missed her first few developmental milestones as an infant. Rain Man could count cards, but is that idea of autism truly representative of an entire community? Actor Darryl Hannah and author/poet Morgan Harper Nichols plainly don’t fit that mold. The first openly autistic woman to become an attorney, Haley Moss, didn’t choose computational sciences as a career. If autism and its many neurotypes cut across race, socioeconomics, and gender, why do we accept the notion that there is only a small range of jobs and opportunities for which they are capable? The revelation that corporations are trying to develop competitive advantages by using autistic employees shouldn’t be surprising and it is reminiscent of the profit-driven motivations of the NCAA and professional sports as they mine socioeconomically depressed classes for their “natural athletic talents.” But to truly allow autistic people their own agency would be to foster an educational and employment workspace that not only recognizes an individual’s independent capabilities but also embraces their ability to act on their own will. The often-confabulated notion that the spectrum of neurodiversity among the autistic community is a comparative “severity” scale frames people like my daughter as belonging to a certain stratum of humanity. Anderson’s, and some of his interviewees’, language may not have been intended to be harmful, but the implicit biases we project when talking about a community to which we do not belong need to be checked. Changing how we view employing autistic people requires asking a broad spectrum of actually autistic people what meaningful workplace access and acceptance looks like to them, not their parents. Where on the spectrum one’s neurodivergence lies should not be tied to a specific need or what career best suits them. There is a large cohort of nonspeaking autistic adults with high support needs who contribute greatly to our society; it simply goes unrecognized. A frequently carted-out trope frames the disability community as a group of people who need saving, or that they have some certain expertise or characteristic that makes them valuable to the “rest of” society. Their worth is constantly scrutinized under the light of utility to the 75% of the population who is not disabled. Those individuals with the most support needs or certain marketable characteristics are frequently highlighted in the media when abled people in positions of power or with large platforms want to highlight “overcoming” the challenges of being disabled. Ironically, their actions and framing only continue to perpetuate a culture that endorses stereotypes and avoids real structural changes. The path to employment for an autistic adult begins with the same stepping stones as it does for anyone, including access to education. And access means so much more than to any one particular curriculum. Any community denied educational access will face an uphill battle to find employment. Anderson cites a Drexel study to illustrate how grim employment statistics are for autistics; the study reporting that 42% of autistic adults will never work. While that data point is unnerving, it is important to know where the source material comes from: the public special education system. The national high school graduation rate for all children is approximately 86%, yet less than three out of every four autistic children will earn a high school diploma. The referral system for special education is far from being free of bias. Far fewer girls are referred to, and enrolled in, special education, perpetuating the pseudoscience idea that girls are much less likely to be autistic. So if our classrooms are not accessible and inclusive, how can we expect our workplaces to be? If non-autistic people never have the chance to be educated alongside appropriately supported and identified autistic children, how as adults can they be expected to see the value in hiring autistic people, see them as peers, or even be employed by an autistic boss? One’s worth should not be tied to corporate marketability. Understanding this “60 Minutes” segment in the context of the American educational and employment system’s well-known history of exploring differences in white males, and punishing the same issue as a negative behavior in people of color and women, is to continue to promote the idea that charity is needed to uplift a lower caste of disabled people. And when we do, we embrace the false notion that autistics are less than human and they can only be fulfilled if filling a role we find or create for them. Whether congenital or acquired, we are all dealt a hand of interests and possibilities, and we should not restrict someone’s potential by defining it for them. My daughter will ultimately become what she sees herself capable of becoming, but if what we show her, and if what those who might employ her only see, is that her bandwidth is narrow, her interests are fixed, and she is only capable of managing smaller niche aspects of what the average American is capable, she will never be happily employed.

Aaron Wright

The Only Reason I Feel Grief for My Child on the Autism Spectrum

In my experience, the hardest part about being the parent of a child with a disability is the constant pushback and resistance from the institutions that are tasked with accommodating and supporting your child. There are both short-term and long-term costs to all involved; including the schools and teachers. Like slow-moving geological forces, the pressure and strain of an inflexible, archaic, and inherently conflicted system will, over time, change you. It is inevitable. It has changed me for sure. In “Thirteen Doors,” I open one of my chapters by quoting Elizabeth Kubler-Ross, “Should you shield the canyons from the windstorms you would never see the true beauty of their carvings.” It is a positive spin on how adversity can be transformative, and how that transformation can also lead to something beautiful. Kubler-Ross, a Swiss-American psychiatrist and author of “On Death and Dying,” explained in that text her theory of the five stages of grief; Denial, Anger, Bargaining, Depression, Acceptance. If I ever had any real grief about having a disabled child, it was never rooted in my daughter’s differences. It had always been focused squarely upon the things she as an individual, and we as a family, have been prevented from accessing because of how she has been failed. If you take the pessimist’s view of Kubler-Ross, the strength and beauty of the canyons is only evident because there is nothing there to shelter them from the wind. And unfortunately, that is how many families with disabled children feel — alone and unsheltered from a relentless and erosive force. I just finished reading Lulu Miller’s “Why Fish Don’t Exist,” which explored aspects of the early eugenics movement in America, and how its poisonous seeds ultimately spread to places like Germany. It was a potent chaser to my previous read, Isabelle Wilkerson’s “Caste,” and the revelations that early Nazis looked to the U.S. for lawful ways to codify discrimination and hate. It is hard for me to listen to how, historically, children like mine were treated as “unfit” by my own government in a manner that was socially acceptable for the times. A treatment that once portended euthanasia eventually fell out of favor and transformed more culturally palatable forms of institutionalization and sterilization. It is hard for me to believe that we are not living in the modern iteration of eugenics; children like mine ostracized and quietly eliminated from public education – sent to programs for “children like them.” The American community classroom has become reserved for only those that by birthright should have access to what is already accessible to them. The revelation that one is beautiful may require that we confront the imprinted notions of who we are, and an exposure to the “windstorms” can help you find your own resolve. But no one needs to have the flesh stripped from their bodies to see the strength and natural beauty of their bones. And we certainly do not need to torment children to help develop theirs. There is research that suggests the average life expectancy of someone who is autistic is half of the average American’s. When you overlay race and socioeconomic status, those numbers become even more grim. It is not difficult to understand why individuals with a history of trauma may have shorter lifespans. There is nothing protective about autism that shields one from the life-shortening pressures and stressors of a world that was not built for you. To have your child restrained, secluded, ignored, unsupported, bullied, or even murdered by their school system creates a pain in a parent’s chest that will never go away. This says nothing for the anxiety, depression and self-loathing it can cause in the disabled child should they manage to survive. The pain and grief I still carry is over the death and dying of the naïve perspective I once held about an American education. I never believed that the schools I went to were exceptional, but I did believe the system was altruistic and accessible to all. I know that nothing is without its shortcomings; my parents both spent over 40 years in education, but never once did I hear them speak in exclusionary tones about a disabled child. As a parent of a disabled child, there is no other choice but to be an advocate. Good schools do exist, but they are not accessible to all. Good teachers exist, and I truly believe that most educators are on the same side as the parent’s – the side of the children. But you are often placed in a position where there is no middle ground as the parent of a disabled child; access is either being provided, or it is not. And it is hard to feel like you are not constantly failing your child, especially if your natural tendency is not to be confrontational or argumentative. But it is the system that has failed you. If you are struggling, find an advocacy group. Larger organizations like DREDF and Wrightslaw are good resources that can help you with templated letters to write your school district for a variety of common issues. Locally, work to find or build a social network within your own community of similarly situated families. Social support for your child is important and social support for you as a parent is often an essential lifeline. Miller reminds us in her book of what Darwin had to say about the success of a species; it is deeply rooted in variation and diversity. When schools become homogenized, everyone loses. You and your child have a #righttobelong!

Aaron Wright

Autistic Girls Should Have Equal Access to Education, Safety and Succe

As spring waned, my social media feed brimmed with prideful graduation stories from friends and family; most came with before pictures of kindergarteners split-screened with the after photos of their advancing tweens, teens or young adults. In turn, my wife and I sat dripping with mid-June sweat in the unmoving air of the Springstone School’s Fellowship Hall trying to capture our own pride through the lenses of our smartphones. The walls and classrooms of the Lutheran church in Lafayette, California that houses this private school for children with autism had become a sanctuary for the children on the stage and the families wilting before them. Most everyone in the room was a refugee of a public education system that failed them. For us, and for our daughter Magdalena, this was no exception. Yet our daughter was an exception. The special education system that ultimately brought everyone in the room to Springstone is inherently conflicted. Parents seeking special education services for their children must ask their schools to perform assessments to not only identify a disability like autism, but to also provide accommodating services. On the surface, this makes sense, why wouldn’t those tasked with teaching children be the most appropriate to determine if a child qualifies for special education and what services are needed? In fact, many pediatricians often defer developmental disability testing to school districts since government based testing and services are the responsibility of school districts after a child turns 3. The biggest problem with this model is that the Individuals with Disabilities Education Act (IDEA), whose first iteration was passed into law in 1975, has never come close to funding special education at its promised levels. State-level funding for special education is equally anemic, leaving school districts across the country holding the proverbial can that has been kicked down the road. Public schools then must redirect limited general funds or dig into reserves to cover special education costs. And these costs have steadily increased over the last decade due to increasing percentages of enrollment and reliance upon a system that typically waits to provide intervention until the child is failing or in crisis — when the child is typically beyond lower-cost preventative services. These and other faults of the system have forced many school districts into costly litigation leaving schools across the country to pay lawyers on both sides of the issue in addition to funding private school placements after failing to provide these children with an appropriate in-house education. Most of the safeguards that protect disabled children and allow private placements are only available after a district has identified the child as disabled. As a consequence, many districts delay student testing for special education or block testing altogether. As our daughter strode with purpose on her way to the lectern to give her final public address of her middle school career, her seven all-male classmates applauded. The CDC asserts that 1 in 59 children in the United States has autism and boys are four times more likely to be affected than girls. Parents and clinicians are beginning to challenge this idea. As my daughter spoke, which she rarely did during her early years in public school, she reflected upon the positive memories she had made at Springstone and thanked the staff for helping her to get out of “a bad situation.” The “protected sex” belief is heavily reliant upon the CDC’s data analysis of records gathered from public school special education testing. It wasn’t until Magdalena’s 8th birthday that she was diagnosed as being on the autism spectrum and even then it took many years of active advocacy on our part as parents. For a lot of girls and women, 8 could be considered an early diagnosis. Most experts say that autism spectrum disorders can be reliably identified at age 2 and are typically diagnosed at 4. Around the time my daughter was finally diagnosed, autism researchers and advocates began to opine that the tests use to detect autism were flawed because they had been developed based primarily upon observations of behaviors in boys. Of late, the attention has shifted to how girls can mask or camouflage their autism in school and thus evade detection. In the best of circumstances, this assumes someone is actively watching. In the shifting sands of responsibility, the burden of not being identified as an autistic girl rests solely upon her own shoulders. For a child in a preoperational stage of development to be found guilty of hiding her own autism is victim blaming of a different degree. Preventing access to benefits or services to educational programs on the basis of sex is a civil rights violation strictly forbidden by Congress after the passage of Title IX in 1972. Furthermore, schools are mandated by the Child Find requirement of the IDEA to actively seek out disabled children regardless of the severity of their disability. Yet despite these two separate federal protections, almost twice the number of children enrolled in special education are boys and the average IQ of a girl identified by a public school as autistic is much lower than that of their male counterparts. Illustrating the point that fewer non-intellectually disabled girls are tested or deemed autistic, leaving them to float alone on the invisible portion of the autism spectrum. The types of school based referrals for special education testing which would identify a child as autistic are not driven as heavily by need and access as they are by behavior and classroom management. A behavior based referral system does not accurately reflect academic access or need. Squeaky wheels get the grease, leaving those who may be equally, or even more so impacted by their disability, to languish. The rituals of denial, deflection and delay promulgated by those involved in Magdalena’s early years in public school compelled me to wonder how many assumptions must be true in order to believe that girls are less likely to be autistic? Our current assumptions about who is autistic is driven by a system bereft of appropriately trained staff and one financially poised to flounder if they identify higher numbers of disabled children. Even when schools do test girls, the screening tests themselves were built without girls in mind. The circle of confirmation bias is thus left to spin ad infinitum. A prejudice, especially one with a history, is hard to forget. Hans Asperger at first didn’t believe girls could have autism and America’s first formal introduction didn’t include women either. I often wonder if Dustin Hoffman had remained in drag as Tootsie to play Rainman if the public consciousness of what autism is would be different. Increasingly, many media platforms are publishing anecdotal stories of women diagnosed late in life and the emotional and functional consequences associated with those delays. Sesame Street’s addition of Julia, the autistic Muppet, should be lauded for a multitude of reasons, not the least of which is raising the public’s awareness that girls can be autistic, too. But without a cast of advocates and understanding allies, would Julia have been identified as being on the spectrum if she had been left to the public education system in my hometown? The answer is, quite possibly, no. Perhaps there is a difference in how girls are affected by autism, but it is hard to believe data derived from a system that has no vested interest in uncovering the extent to which this may be true. While science still struggles to suss out the interplay between genetic predisposition and the environment to explain autism and its gender disparity, parents of children on the spectrum know that without equal access to education their children will struggle to meet most of life’s major milestones. Children with autism graduate from high school at drastically lower rates than their peers. They will also be pained to find gainful employment and independent living when they become adults. And tragically, the average autistic will only live a life half as long as the average American. Education equals access, safety and success. For girls with autism, this is no different. At the close of the promotion ceremony it was hard not to be emotional as Magdalena posed with her diploma. It was equally hard to contain my joy as I joined the ranks of boastful parents posting their children’s accomplishments online. But what I was most proud of was Magdalena’s own pride about her hard-earned academic success and her burgeoning belief that she has value. Magdalena will begin high school at a different non-public school in the San Francisco Bay area in the Fall.

Laura Epstein

How to Recognize the Parent of a Child on the Autism Spectrum

When my now 6-year-old son was diagnosed with autism, I knew it would be a journey. I knew I would need a lot of help and that I was sort of out of my element. What I didn’t realize was how transformational it would be to me. I didn’t realize I would learn new skills and sort of become a whole different parent. Somewhere along the way I became a stronger, more self-assured parent ready to help my child exceed. These are five signs that I’ve become the parent to a child on the autism spectrum and perhaps you’ve experienced this to: 1. You’ve strategically entered and exited bathrooms with loud hand dryers. Those automatic hand dryers are not your friend if you have a child with sensory sensitivities. I have planned my entrance into countless bathrooms so that my oldest son and I avoided the loud hand dryers. For those of us with children with sensory sensitivities, we are constantly trying to help our kids manage loud, uncomfortable and surprising sounds, as well as other sensations. 2. You speak in acronyms. ABA, LCSW, IEP, OT, SLP… you know what I’m talking about. As a parent of a child with autism, you have learned all sorts of terms and lingo that you never would have otherwise heard. It’s not rare that I’m talking to a friend and mention, “Ross’ OT” only to be met by confusion. These acronyms and the terms behind them become second nature as we navigate the world of parenting kids with disabilities. 3. You are a compulsive researcher. Research twice, do it once. If I had a motto that would be mine. Google is my friend and gives me lots of information, until it gives me too much and I get overwhelmed. As parents of children with autism we research so we do what’s best for our child. We try to stay on top of the latest research and trends and make sure we are giving our children all the support that we can. 4. You don’t have the luxury to not be a helicopter parent. You’ve probably tried being relaxed, hanging back and seeing if it would be OK. Maybe it was — until it wasn’t. If you’re the parent of a child with autism they often need support, reassurance and many times an example of how to engage with the outside world. Being laid back may have led to meltdowns, struggles with peers, and tears. We don’t often get to be laid back, and that’s OK. We are supportive and a little bit of a helicopter parent, and that’s OK. 5. You put everyone else first, and sometimes forget about yourself. Parenting burnout is real and as amazing as we are at looking after everyone else, sometimes we forget about ourselves. We are the caregiver to everyone except ourselves. We are accepting of everyone’s differences and shortcomings except for our own. We are the awesome parents of kids with disabilities but it can be a hard job. We learn to accept help, take breaks, and forgive ourselves because in the end that is the best for our children. Being a parent is hard, but we are our children’s best advocate, friend and support system.