Are You Aware? Five Lessons from Raising an Autistic Child
This is part II in our Awareness Wednesday series on disability. Read the other posts in the series here.
Like all parents, my world changed forever when I had my first son in 2002. Like a growing number of parents, my world changed forever yet again when I discovered, in 2004, that my son was autistic.
Navigating the world of public education, private insurance, and social interaction as the mother of an autistic child for the past 15 years has been a challenging experience, one that has taught me several lessons with respect to how our system works in practice. I share five of these lessons below. Although much of what I have learned applies specifically to children with special needs, my experience as the mother of a child with special needs actually illuminates some important deficiencies in our legal and governmental systems and our society that pertain to public services and treatment of people in general.
A portrait of an autistic child
My son Bowen was a unique baby from the very beginning. I remember looking at my 3-month-old while on a walk with two of my new mommy friends and noticing that while my friends’ babies gazed placidly at the world rolling by, my son stared intensely at everything he saw, his little brow furrowed in concentration. Bowen was an intense baby, toddler, child, and teenager. Bowen did not just soak in the world around him; he zeroed in on it with laser-like focus.
Bowen met many milestones early, but other developmental phases he missed altogether. Bowen did not make eye contact. He did not understand gestures — even a nod for yes or a shaken head for no. When I pointed things out to him and said “Look!,” he did not look in the direction of my eyes; rather, he would look at the end of my finger. His memory of words and facts was astounding, but I had to make picture flashcards for him to learn the faces of family members. He had an ear for music, but not for tone of voice. He had trouble regulating his emotions and craved sensory inputs. He showed no interest in imaginative play or playing with other children.
When the lady who watched Bowen three mornings a week told me that she thought he may be autistic, I balked at the suggestion. My nearly 3-year-old son was uncommonly brilliant: He knew all the times tables, he read chapter books, he could count to 20 in ten different languages, he could sing every lyric to every verse of every Christmas carol. Surely there was nothing wrong with my son. And yet, I knew he was a different sort of thinker. He was examined by a child psychiatrist and pronounced “on the autism spectrum,” specifically “Asperger’s like” because he was “high functioning” and “clearly very intelligent and verbal.”
Since Bowen was diagnosed, the medical community has abandoned the classification of Asperger’s syndrome. Now, all autistic children receive the diagnosis of “autism spectrum disorder” (or ASD).
Autistic individuals are often further distinguished by being called “high-functioning” or “low-functioning,” which basically seems to refer to whether or not they are verbal. The changing and inexact terminology and classifications within discussions and diagnoses of autism are confusing and misleading. Whether or not someone is verbal is a poor, single-dimensional measurement of how much they can behave according to society’s expectations (if that is what the “functioning” refers to). I have met autistic people who are completely non-verbal, and yet they have learned appropriate social behaviors and interact well (perhaps using typing devices to communicate). I have also met autistic people, like my son, who are highly verbal and yet still struggle significantly with social interactions. Which one is “higher” functioning?
Autistic individuals — like neurotypical people — have a range of intellectual capacities, emotional issues, talents, and challenges. The only accurate truism when it comes to autism is: If you’ve seen one child with autism, you’ve seen one child with autism.
Lesson 1: Access to opportunity matters
Society’s underlying goal for people with disabilities is that they can meet their full potential. Many disability laws and programs focus on ways to remove barriers to access for disabled people. There can be physical access barriers, like stairs that exclude people with mobility impairments or print resources that are inaccessible to people who are blind. There can be non-physical barriers to access as well. For example, access barriers exist when people with disabilities are denied the opportunity to maximize their potential by going to school, participating in public discourse, or exercising their legal rights.
My son is a highly intelligent, musically talented person. In a perfect world, Bowen’s autism disability would not impair his ability to flourish personally and professionally.
Enabling people with disabilities to maximize their potential is not just a humanitarian goal, it is actually a win-win — a goal that promotes everyone’s best interest. In human society, we are all benefitted when everyone can contribute to the best of their ability. Think of the contributions to human progress that people with disabilities have made. Stevie Wonder is blind. Beethoven was deaf. Stephen Hawking had a motor neuron disorder. John Forbes Nash had a mental disorder. Albert Einstein was autistic. All these people contributed to humanity’s knowledge and progress and added beauty and joy to the world.
People with disabilities achieve fulfilment when they have access to opportunities, and all of us are better off when opportunities are made available to people no matter their special needs.
Lesson 2: Privilege = better legal rights
Bowen’s autism diagnosis was helpful in that it opened the door for us to receive special services through the school system. Bowen obtained an individualized education plan in 2005 and has had an updated IEP every year thereafter. IEP goals included targets for helping Bowen learn behaviors and develop skills that would help him be successful in school and society.
In preschool, Bowen had about 25 hours of support every week. Just before Bowen started kindergarten, the school system proposed cutting his weekly support hours from 25 to 5 — against the strong recommendation of his preschool therapists and medical experts. My husband and I spent a contentious two-hour meeting convincing the school that it was legally obligated to abide by the experts’ opinions and provide him with the supports he needed in the regular school classroom. Bowen eventually obtained what he was legally entitled to under the Individuals with Disabilities Education Act, but only because I was an assertive lawyer mom.
In subsequent years, other mothers with children with even more intensive special needs frequently asked me how it was possible that Bowen had obtained such extensive school supports. These families had been told they could receive no more than five hours of support weekly and did not argue with the authorities; they meekly accepted whatever they were given. My privileged education and advocacy skills had obtained for my child a better version of the same legal rights than these other children had been given.
During Bowen’s early years, we also obtained private therapies dealing with sensory and speech issues, but I had to fight and fight and fight with private insurance companies to have these to be even partially covered by our insurance. Our insurance policy provided that coverage would exist for therapies that were medically necessary, and I provided the company with extensive medical documentation confirming the need for these therapies, particularly in the critical developmental window that starts to close at age 4 or 5. The insurance company balked at paying for them and dragged the process out for almost a year before finally agreeing to comply with the terms of their own policy. Luckily, because our household income was relatively high, we were able to self-fund the expensive therapies during that critical year. And it was only because I am a persistent, trained advocate that we finally obtained some insurance coverage for therapies that all the medical experts had deemed “critical.”
Not everyone can afford to pay for necessary treatments out of pocket, and not everyone has the capacity and will to fight with an insurance company for nearly a year.
These and similar experiences showed me a clear inequality in the way our system works. People with privilege (well-educated, empowered people) are far better able to navigate their legal rights and enforce them than people with fewer advantages. True, the law is theoretically the same for everyone, but not everyone can take steps to ensure that their legal rights are respected. Children with special needs born into families with educated, engaged advocates for parents will be adequately successful; but those who are born into families without those privileges will very likely slip through the cracks and be left behind. While this realization increased my gratitude for privilege, it also highlights deficiencies that we as a society must address.
Children of parents with less education, perhaps non-English speakers, or children of parents who simply are more compliant and less able or willing to fight for their rights, will obtain fewer supports and services than my child did. People with greater privilege than my child — perhaps children of rich, powerful, or famous people — will obtain an even greater enforcement of their rights than my child can. Access is therefore not only dependent upon special needs/disability, but on socio-economic and educational status. This is unfair, and this is harmful — to individuals and society as a whole.
Lesson 3: Most focus on floors, but ceilings matter too
One challenge we faced with Bowen is that he is “twice exceptional.” He is considered both autistic and “profoundly gifted.” Theoretically, this means Bowen should have been given supports to help him succeed in spite of his autism and should have been given access to special opportunities designed for people with a significantly elevated IQ. In practice, the public education system focused nearly exclusively on his deficiencies rather than his abilities.
Ensuring equal access to opportunity is key, but opportunity is inadequate if it is artificially constrained by a ceiling on achievement. It isn’t enough to simply ensure that everyone can obtain a basic level of education. People’s opportunities for higher education and higher positions in society should not be limited based on immutable criteria like race, sex, or disability. There is a glass ceiling for women and for members of minority racial and ethnic groups in this country, and there is also a glass ceiling for people with a disability.
Bowen was never given full access to gifted resources. There have been many enrichment opportunities that he was specifically excluded from because, as the director of one such program told me, “We really can’t have difficult children in this group.” When we moved to Kansas from Virginia before Bowen’s 5th grade year, we toured the best private school in Topeka. After a day observing and testing Bowen at the school, the director informed me that although he was “at least a grade ahead” academically, the school would not admit him. “We really don’t have the sorts of supports he needs,” the director told me. “This is a school for bright children, but not children with autism.”
Public education administrators, for their part, often focus on bare minimums rather than clearing away limits that exist at the top end. Bowen could read, he could do basic math, and administrators were not concerned with helping him achieve maximum success at higher levels of education. As he started taking more challenging courses in high school, the supports for Bowen — in the classroom and out — vanished. Although he had the intellectual capacity to perform well in a rigorous curriculum, school officials thought it was unnecessary to support someone who could take AP physics or pre-calculus.
But Bowen still needed help. He struggled to learn in a group environment, follow directions, and turn things in. And his social inabilities strained his school experience. His course grades dropped, even though test results stayed sky high, which to me indicates a support system failure more than a limited ability.
I have seen similar problems with students I have taught in law school. Sometimes students have great untapped ability to achieve, but they are limited by their unsupported disabilities or disadvantaged backgrounds. Although our society strives to provide the bare minimum to all, we do less well when it comes to clearing the path to high achievement for people who could do great things with a little support.
The inequality in distribution of high-power jobs is telling. There are shockingly few Latina lawyers. There are shockingly few black CEOs. There are shockingly few successful entrepreneurs with disabilities. There has never been a female U.S. president. This is not due to lack of ability; rather, something else is going on.
Our society limits people’s upward trajectory when they do not fit into a certain mold. Our focus on the important issue of floors and refusal to deal with the problem of ceilings comes from our skewed sense of desert. We may agree that someone with a disability deserves some extra help to learn to read, but many people are angered when they discover that people with disabilities get extra time to take the SAT or the bar exam. You deserve access to the floor, according to this line of reasoning, but not through the glass ceiling.
Lesson 4: People are being punished for their differences
Bowen eagerly looked forward to attending public middle school, in particular because he wanted to be in the choir and the band. We attempted to negotiate supports with the public middle school, but other than notifying teachers of his special needs and allowing him to have a sensory aid (mint gum) in class, the school was unwilling to depart from its rigid rules regarding behavior.
Although I used my privilege to communicate with all his teachers to help keep Bowen on track academically, I was unable to help him socially. The middle school — and later the high school — viewed Bowen’s social needs through a punitive lens, perhaps concluding that achieving student compliance was more important to the school than supporting student learning of social and behavioral skills. In the absence of adequate support and instruction, Bowen started making more and more serious social mistakes. He got too close to girls. He had loud and disruptive outbursts. He would do and say things that were not to be done or said. Instead of addressing the underlying issues evidenced by these departures from school rules, Bowen was suspended numerous times. Bowen was sent home and kept out of class for days at a time because he had failed to comply with behavioral norms, even though this failure was at least in part caused by his disability.
The takeaway lesson here is chilling: People who do not do what society expects are likely to be viewed as being problems in and of themselves. And they are likely to be punished. Instead of our institutions looking at divergent behaviors as a symptom of skills that still need to be learned or supports that are lacking, punitive measures are the first resort. Once again, privilege comes into play when comparing different levels of discipline meted out to different people for the same behaviors.
The point here goes beyond disparate treatment, though. Punishment should not be the first (and often only) response to problematic behaviors for anyone. Labeling someone as “bad” based on their behavior — especially at an early age — is often more harmful than the behavior itself is. The goal of our public institutions should be something more than simply to control people and prevent them from doing things we do not want them to do. The goal should be to help them so that they can thrive and add value to society. Our approach to punishment is deeply troubling, and our punitive approaches to a myriad of issues exacerbates problems evidenced by difficult behavior to begin with.
Lesson 5: We need to do more to include
Bowen has always dreamed of having many friends and deep friendships. When Bowen started kindergarten 15 years ago, my husband and I told the school that our biggest aspiration for Bowen, one that we hoped would occur by the time he graduated high school, was that Bowen would find a close and loyal friend. Bowen graduates in six days — on May 19, 2020 (although like other members of his graduating class, there will be no actual graduation for Bowen on that day).
He has not yet found an intimate, reliable friend — someone he can always chat with, hang out with, or invite to a celebration. Bowen is tremendously friendly and well-liked by his peers. He has a very large circle of acquaintances who generally appreciate him and enjoy being around him. But he has not been included in a close friendship. He has invited peers to go bowling, to go see a movie, to go out to eat, to hang out, to go for a hike — numerous times. Bowen has never received this sort of invitation in return. And his frequent attempts at outreach have almost all been rebuffed.
Our society has clear, if unwritten, expectations for its members, and everything from media to treatment by authorities reinforces the idea that someone’s value as a person turns on how well they match these expectations.
As women, we are familiar with this concept: We are seen by society as more valuable if we are slender and physically attractive than if we are heavier and less aesthetically pleasing. The principle applies broadly to people with all sorts of differences. People who speak strangely, act strangely, look strangely (relative to our expected norms) are less likely to be included. Yet the gospel teaches a universal truth that the value of a person is intrinsic, deep, and immense. We are all children of God, and each of us is precious to him. We should each be precious to one another as well.
One of the biggest problems I’ve seen in the world is “othering.” I see this when people of one race or nation channel fear and hate toward another race or nation, citing differences (in looks, beliefs, language, behavior, etc.) as the basis for exclusion. I see it when children in school avoid the kid who circles the playground at recess talking to himself rather than engaging in cooperative play. I see it at church when members give a wide berth to a single mom or someone with a tattoo.
Othering is ubiquitous. It is harmful. And it runs directly counter to how Heavenly Father tells us we should treat and feel about others.
In his poem “Outwitted,” Edwin Markham wrote these aspirational lines:
He drew a circle that shut me out –
Heretic, rebel, a thing to flout.
But Love and I had the wit to win:
We drew a circle that took him in!
We pray every day that maybe in college people will draw a circle that takes Bowen in. Furthermore, we hope that one day he will meet a woman who can look beyond his social awkwardness and appreciate his abundant creativity, his surprising talents, his deep testimony, his beautiful intellect, and his good and pure heart. My life is better for having Bowen in it. Our community, our society, and our world are better too.
Andrea Boyack is the mother of four children and a law professor at Washburn University School of Law in Topeka, Kansas, where she also is the co-director of the law school’s Business Transactional Law Center. Andrea researches and writes in the area of finance, real estate, consumer protection, and social justice. She teaches foundational and upper-level law school courses related to contracts, property, real estate, housing, and debt/bankruptcy. When not under quarantine, she travels extensively for work and for fun. Andrea joined MWEG at its founding and has served in MWEG state and committee leadership positions. Andrea’s son, Bowen, read and gave permission for the publication of this essay.
