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.