In 2013, author and writer Amy Mackin wrote a powerful article for the Atlantic, detailing her frustrating experience navigating the public school system with her son Henry, who was diagnosed as being on the autism spectrum. It was a sobering and eye-opening glimpse into a world where, although numerous systems and policies may exist in place to support children with special needs, parents often don’t get the right type of support.
Amy described her experience as “daunting”, navigating a pathway where there was lack of communication, unavailable resources, or the sheer inability of some educators to understand and implement the recommendations from Henry’s medical team. Additionally, Amy’s journey speaks to another systemic issue which many would consider a failure of our modern society – the fact that unpaid caregiving responsibilities in the United States disproportionately falls on women’s shoulders, showing the intersection between cultural gender bias as well as gaps in the education system.
The passage of the Individuals with Disabilities Education Act (IDEA) signed into law in 1975 was groundbreaking, in that it enabled children with special needs to be included in public school settings, instead of rendered invisible by society. But given the number of issues described by Amy which many parents across the country can relate to even today, does the original framework need an update?
“It’s time for a modern overhaul of IDEA—one that balances practical reforms with theoretical advancements, while addressing the cost and effectiveness of current practices. But what should that overhaul look like? And who is leading the charge for change?” asked Scott White in an article for Forbes earlier this year.
Although her son is now grown, Amy Mackin is not giving up the fight to advocate for not only a reform of the way the education system helps children with special needs, but also the way our larger culture views care work and gender roles as part of the underlying problem that stops effective reform.
In a new memoir titled ‘Henry’s Classroom: A Special Education in American Motherhood’ (out May 6) Amy provides others in similar situations with tools and knowledge, as well as to just allow them to feel slightly less alone in their struggles. We had the chance to speak with Amy about her experience, how the current state of special education and lack of reform says a lot about modern American culture especially post-COVID-19, and how society values and views people with disabilities.
What prompted you to write a book about your experience as the mother of a neurodiverse child, navigating a system that is not adequately set up to help parents thrive?
From the time Henry was a toddler, when our pediatrician expressed concerns about developmental delay and referred us to Early Intervention services, I felt like obstacles were being dropped in our path at every juncture. No one seemed to be talking about these challenges or how the systems that were supposed to help us were inadequate, ineffective, or convoluted, and I felt isolated in my experience. Those early years were very difficult.
In 2012, exhausted by a decade of struggling to get Henry the comprehensive help he needed and feeling like we had no other options, I took my son Henry out of traditional school altogether. That decision dominated my thinking at the time. Was I making things worse for him by taking this step? Where would I find the resources to ensure Henry received the education he deserved? I was taking a college class at the time, and I wrote an essay about my concerns for one of the assignments.
A version of that essay was later published by The Atlantic, and the response to that article inspired me to continue documenting Henry’s and my experiences as we designed an individualized, creative education system that would work for him. In 2016—over three years into our alternative schooling journey—I started pulling the pieces together into a manuscript. I believed that what we’d discovered was worth sharing.
As a communications expert, with additional expertise in women’s social history and labor culture in America, what kind of message did you want to share, and how did you strategically weave it into your personal story in ‘Henry’s Classroom’?
My communications training along with my education in American Studies has provided me a much deeper understanding of the way narratives form and shift over time and the influence they have on how we view ourselves and the larger world around us. I earned my college degrees as an adult continuing education student, and it wasn’t until well after the events of the memoir took place that I recognized how my personal journey fit into the broader context of gendered societal roles, women’s labor, and the ongoing evolution of family dynamics in the United States.
I was the embodiment of the personal as political, but as a new mother I hadn’t yet learned that structural systems built upon gender myths are why women perform most of the caregiving labor in this country—the emotional, physical, mental, and financial work required to ensure our children, elderly, and disabled receive the services they need to succeed and thrive. This work has historically been undervalued and is increasingly isolating in a society that is becoming more and more individualistic.
My graduate work in American Studies and Creative Writing provided me with the analytical skills to position my personal experience within a larger conversation around gender roles and culture. Acknowledging the intersection of motherhood, labor, and women’s social history is critical in understanding how we frame the caregiving experience in narrative form. Too often, we see an image of “perfect” motherhood in the media that is both inaccurate and damaging.
Once I decided to embark on a wide-ranging review of research around motherhood, family, labor, and disability, my personal story quickly began to feel like a chapter within a much longer and larger struggle for social justice, and I wanted to provide that same context to the reader. So, I went back to what was then a traditionally structured memoir and began infusing research conclusions where appropriate. The resulting message is that if you or someone you know is struggling with these issues, you are not alone. As we navigate complex caregiving, our cultural and systems framework can make us feel as if we are outliers, but that’s simply not true.
What are the biggest systemic failures when it comes to disabled and neurodiverse children, through the school system and any others you continually had to navigate?
The biggest failure is a lack of effective communication among the various service providers. My primary frustration in navigating the public education system was the total lack of communication and cooperation between school staff and Henry’s clinical team at the developmental medicine center where he was regularly evaluated. A team of doctors and therapists there were providing me with detailed recommendations on how to help Henry so that he could fully access the curriculum and thrive academically, socially, and physically. But these recommendations were largely ignored by the education system.
The school conducted their own evaluation and determined he was eligible for far less than the medical team recommended. One example is when Henry was attending our district’s “special needs” preschool. The medical team not only recommended more speech therapy and occupational therapy during the academic year, but also strongly recommended summer services to avoid a regression of skills. The school refused these recommendations, and at Henry’s next evaluation with the developmental medicine team, he showed significant regression.
There were no private summer programs in our area that would take a preschool-aged child who had developmental delays, so my only option was to work with him myself as much as I could. But I am not a trained speech or occupational therapist, and I could not replicate the classroom experience for him. The disconnect between clinicians, educators, and community programs needs to be reformed so that these services all work together, rather than being at continuous odds with one another, in order to help children reach their full potential. Kids and families need a holistic approach, but that’s not what they’re getting currently.
A close second to the lack of communication and cooperation is the pace of bureaucracy that stalls reforms. Children who are deemed to have a disability are put on an Individual Education Program (IEP) within the public school system in order to address their “deficits.” In March 2023, my home state of Massachusetts updated its IEP resources for the first time in over 20 years. This came after nine years of review—nine years!
Henry was about to graduate college when some improvements were finally implemented—far too late for him and for many of the over 7 million American students who receive special education services. And as discouraging as that is, Massachusetts is still ahead of the game as one of only a few states that have made any substantial updates to their special education programs since the 1990s. The world has changed a lot in over 30 years, but these programs and services have not kept up. There is still much work to be done.
Why are our systems so inadequate to take care of the most vulnerable and marginalized? And what does that say about power structures, and who is in power?
In the 1960s and 70s, the dominant thinking in American culture was that kids with marked intellectual or developmental disabilities could not be helped in a traditional school setting. Parents were given a choice between keeping their children at home with no services or institutionalizing them where, they were told, educational and therapeutic services would be offered. Children who experienced disabilities that we refer to today as “invisible” or “hidden,” including conditions that fall under the neurodivergent umbrella, languished between this binary.
We now know that the outcomes of children with developmental delays, from mild to severe, can significantly improve with appropriate therapies at home and in community settings. But the Early Intervention services Henry was referred to when he was 16 months old were only established in 1986, just fifteen years before his birth. Public responsibility for education of people with developmental and/or learning disabilities is still a relatively new concept in the American consciousness.
Structural racism and systemic poverty continue to exacerbate this situation. People of color, immigrants, and low-income families were funneled into segregated neighborhoods as America’s infrastructure, including its highway systems, were built.
Because the U.S. finances its public schools by and large through individual state contributions and local real estate taxes, wealthy areas have better funded schools with more comprehensive programs than lower income areas. The method with which we fund our schools in this country must change to create more equitable education for every student, including those with disabilities.
What can other parents and caregivers do to ensure children who need additional support get what they need, despite the huge gaps in the system? What were the most helpful tools for you?
One thing you can do is be present and learn what activities your child struggles with the most. Get to know your child’s teachers and therapists at the school. That being said, this an inaccessible privilege for many—if you’re a single parent and/or work a day shift, you may not have the luxury of volunteering in the classroom, sitting-in on your child’s therapy sessions to learn how to apply methods at home, and regularly attending school social events.
You also may not be welcome. The public “special needs” preschool where my son attended did not invite parent volunteers in, so it was very difficult to ascertain what was happening in the school environment. All that being said, communicating with my son’s teachers and therapists resulted in interventions that weren’t written out in his IEP but were pivotal to his experience. Not all educators responded to these communications, but those who did made a real difference.
Another way to address the gaps in the system is to advocate for progress whenever and wherever you can. That may mean talking to friends and family who are not aware of the problems, showing up at a school committee meeting, supporting a local or national disabilities rights organization, or contacting your district’s representatives in Congress.
We often forget about the parental and caregiver burnout that happens when trying to navigate such a flawed system. What advice would you give to parents to take care of themselves and make mental health and self-care a priority?
In my case, trying to understand my child, perform constant advocacy on his behalf, and navigate complex medical and education systems, along with the everyday care work for all three of my children, was utterly exhausting and went largely ignored by the larger society and even by my own extended family. My mental health was in shambles. My advice would be to find competent professional support if you have access to that.
For those who don’t have health insurance or the private means to pay a therapist, look for a low-cost online support group that’s moderated by a professional, where you can get real-time support and tools to cope. I emphasize “professional” here because, though I’m sure there are some great moms’ groups out there, they won’t necessarily be acquainted with the training or resources that can help a parent who’s falling apart under the massive weight of holding everything and everyone together in her home. And, let’s face it, other moms can also be judgmental, which is the last thing you need when you’re in that state (women need to be better to other women, but that’s another story).
If you have a partner, I would also encourage you both to take all the family leave you’re entitled to. Although paternity leave is much more common now than it was when Henry was born, a recent report from McKinsey revealed that less than half of fathers entitled to paternity leave through their employers actually took it. This contributes to the larger damaging narrative that caring for newborns is a woman’s sole responsibility, and it hurts individual mothers’ ability to adjust and heal after giving birth, as well as their ability to engage in self-care.
For those in a financial situation to pay for competent caregiving, then by all means hire a babysitter and get yourself a massage, meet a friend for coffee, go for a walk sans kids, take a class, or go to a movie in the middle of the day. But I speak from the perspective of a working-class mom who didn’t have that option.
I must emphasize “competent” caregiving here. I’ve read so many magazine articles that encourage mothers to “Take all the help that you can get!” But when you have a child who has challenges, having someone who is not competent or familiar with that child’s needs can actually cause you more stress rather than relieving it.
We have seen some major indictments on the state of motherhood in America over the past few years, with COVID exposing the lack of safety and support compared to other industrialized countries. Why is motherhood treated as such an afterthought or less worthy of prioritization when it comes to policy-making?
This is such a great question. During my graduate work in American Studies, I focused on women’s roles in the Industrial Revolution. Women fought for equality but never fully realized it, which is how we ended up with the “Father Knows Best” image of family 100 years later. Women were looked at as temporary workers because the assumption was, in our patriarchal society, that they would leave paid work as soon as they married and became pregnant.
There was little thought given to women who weren’t interested in marriage or children or were interested in combining those roles with paid work. And this narrative completely ignored women of color who routinely engaged in paid work while mothering their own children, as white women were told to stay home.
An ongoing gender myth that women are more biologically suited to nurturing children existed then and still does now. These cultural conditions perpetuate a wage gap between men and women. We saw the consequences of this very clearly during the pandemic. Once schools and daycares closed, someone needed to care for young children and help older kids with virtual schooling. Economics determines the parent making the least amount of money will be the one who sacrifices their paycheck. And given that women working full-time earn 83 cents for every dollar their male counterparts earn, that person is often the woman in a heterosexual partnership.
Another major obstacle is America’s individualistic culture. The rearing of children is seen as the sole responsibility of the individual family rather than a larger collaborative effort. If it takes a village to raise a child, American mothers are deserted on an island.
Collective cultures recognize the societal benefits of supporting all children and their families, and in those cultures you see strong social safety nets that are virtually nonexistent in the United States. The growing wealth gap is evidence of this. The poor are getting poorer, and the rich are getting richer. The inequities continue to grow.
The U.S., one of the wealthiest countries in the world, sees nearly 14 million children go hungry each day. If we can’t find the funds to ensure all our kids are fed, kept safe, properly educated, and provided with opportunities for recreation and social engagement, I think it’s safe to say that our society generally values individual success over our collective well-being.
How do issues around special education and disability rights intersect with cultural and gender issues?
In so many ways. It’s well documented that mothers experience economic disadvantages that fathers generally do not as a result of having children. These not only include lower pay and fewer fringe benefits for women, but also lower perceived competence by employers and managers. These “penalties” extend to people with disabilities and other marginalized groups, as well.
Many people don’t speak up about their challenges for fear of losing their jobs or being treated differently by their colleagues and supervisors. For mothers struggling with invisible disabilities and/or mental health issues of their own, cultural shame across education, medical, and workplace environments poses a serious obstacle to honest communication.
Furthermore, studies show that parents with disabilities are more often referred to child services as compared to parents without disabilities. Brandeis University’s Heller School explains that this is the consequence of two primary factors. First is a phenomenon called “exposure bias,” which refers to the fact that people with disabilities (or with children who have disabilities) have more interaction with medical staff, social workers, etc. and are therefore more likely to be reported to the child welfare system.
Second is a systemic bias caused by the misconception that if parents have disabilities, they must be deficient in parenting skills just because of their disability. Research also shows that women are more likely to be disabled parents than men. And because American culture has so few safety nets and supports for disabled adults, those women are at even more of a disadvantage.
From a neurodiverse perspective, women and girls are underdiagnosed and misdiagnosed at a far greater rate than men and boys. Experts believe there are several reasons for this, including gendered cultural expectations that lead women to mask their symptoms and internalize their distress. Additionally, most of the research on neurodivergent conditions has focused on boys and men, using primarily male sample study subjects. Therefore, the diagnostic tools we have for conditions like autism and ADHD are based on how these conditions manifest in males and male behavior.
What kind of empowerment do you want other parents of disabled and neurodiverse children to have after reading ‘Henry’s Classroom’?
I would like to see families have equitable, innovative school choice options, so that their children can find the best fit within a public setting without disadvantaging other students. In the book, I explain how, when Henry was in fifth grade, I discovered that the adjacent town to mine—a border I lived only a mile from—offered a great program for middle schoolers on the autism spectrum that allowed for less transitions during the day, more consistency, and a smaller class size, which were all accommodations that his medical team had recommended.
Our district’s middle school, where Henry would be attending the following year, had no formal supports for neurodivergent kids at all. Massachusetts has had a school choice law on the books since the early 1990s that presumes all school districts in the state will admit non-resident students on a space-available basis. But the reality is quite different. A town’s school committee makes the final determination as to whether or not their specific district will participate in the program. They can choose to opt out or opt in each year during a public meeting.
When I heard about the adjacent district’s school that was not only a better fit for my son but also was physically closer to my home than the one Henry was to attend, I researched how he could switch. But neither our home district nor the adjacent one had opted in. In fact, not one school district in my entire county was participating in school choice at that time—they’d all opted out each year.
It was not until the adjacent district began to suffer decreased enrollment, and therefore decreased funding, that they finally voted to participate in school choice. In February 2023 that district announced that they would accept up to five non-resident students per grade for the 2023-2024 school year. Henry would graduate from college before families could apply to those few available spots.
I also would like to see mandatory inclusion of medical providers’ feedback in students’ IEPs. Throughout my son’s experience in the public-school setting, the recommendations of his developmental medicine team were largely ignored. This had tangible negative effects on my son’s progress. School districts vary widely in the accommodations and services they offer to kids with disabilities, but they tend to all focus primarily on academic capacity.
Parents need a holistic approach that incorporates the expertise of all the professionals who interact with their child. A student might have acceptable or even exceptional academic skills but is otherwise socially isolated in the classroom and the larger school environment. That social isolation prevents the student from fully accessing the curriculum and is deeply damaging to a child’s mental health. We need to stop separating a child’s IQ from their day-to-day life experiences.
Finally, I’d like to see increased resources and training for educators. IDEA (Individuals with Disabilities Education Act) mandates that a child with disabilities be in the least restrictive environment. This means most kids on IEPs are mainstreamed with non-disabled students in the classroom. On paper, this sounds great. Unfortunately, if teachers have not been given appropriate training and resources to manage the various disabilities and neuro-developmental conditions that may exist in their classrooms, the outcome can be anything but great.
If we care about American children and providing the best opportunity for them to grow into engaged members of our society, we need to properly staff schools and properly train teachers.
If you are as inspired and fired up to see wholistic reform of the special education system, or if you are a parent of a child with special needs looking for resources and narratives to affirm your journey, order your copy of ‘Henry’s Classroom’, out May 6, by clicking HERE. You can also see more of Amy’s work on her website, and connect with her on Facebook and Linkedin.
