My interview with journalist Monika Szubrycht for HelloZdrowie (HelloHealth) coincides with the release of the newest Polish language edition of Ten Things Every Child with Autism Wishes You Knew. Szubrycht’s work includes a series of reports and interviews collected in book form, titled Autism: A Close Distant World. “I have known your book since the first Polish edition,” she told me. (First edition in Polish was published in 2009.) “I thank you for it. Your writing has a tremendous impact on people.” I thank Monika and HelloZdrowie for their permission to reprint the interview in English here, and for their ongoing work on behalf of all our kids.
“It pleases me no end when I see an employer who’s made accommodations for an autistic worker . . . and the rest of the so-called typical employees say, hey, we want that too! Also true in classroom settings. What’s important for the autistic person can also be very good for others in reducing stress and anxiety, and increasing positive team outcomes by allowing everyone to work at their best,”says Ellen Notbohm, author of the best-selling book Ten Things Every Child with Autism Wishes You Knew, which Hello Zdrowie covered with its media patronage.
- Twenty years ago your article Ten Things Every Child with Autism Wishes You Knew was published. Today the third edition of your book with this title is out. What has changed over the years in terms of the perception of autism?
When my son was diagnosed with autism in the mid-1990s, the incidence was 1 in 750. This meant that there would be only a handful of students in a typical school who were recognized as autistic. In 2020, the Center for Disease Control and Prevention in the United States set the incidence at 1 in 36. This means one or more in every classroom. We can debate the specific numbers themselves, but we can’t deny the sharp increase, whether it’s from better identification and diagnoses or an actual increase in occurrence. This increase has made it near impossible for families, schools, and community to ignore the presence of autistic students, and to acknowledge that they have needs not met by mainstream education and community.
Numerous changes have come about because we recognize more autistic children among us. Through education and awareness efforts, we’ve been able to reverse some long-standing derogatory stereotypes. Sensory integration difficulties are now recognized as very real science, not a choice the child makes, not an add-on to education but an essential first step. We’ve learned that autism imposes no inherent limits on a child. We’ve seen remarkable benefits to both child and community from therapies and even relatively small accommodations.
Perhaps the single biggest change I’ve seen in the autism world in the last twenty years is the tidal wave of autistic adults who have risen up to speak for themselves, to share their experiences, as children and as adults, and to advocate for needed change. Social media has played a big role in their being able to communicate broadly. These voices are essential to our understanding of autism through the lifespan so that we can act effectively.
- And how your take on autism has changed over these twenty years, if it did?
In my earliest days with a child on the autism spectrum, my focus was pushing for opportunities for him to be included in school and community. This meant persuading the “typical” world to learn to understand and accommodate his different manner of thinking and processing. The more he grew and matured, the more I saw that his perspective on the world was often startlingly right, and it was the rest of the world that needed to change. Many autism parents have told me they experience the same with their child, that they have this unfiltered clarity about some things. So I’ve come to a place where I think that it’s detrimental to society to not actively integrate different learners in all facets of community. The cost of not doing so is leaving far too much talent, intellect, energy, creativity, and heart on the table.
- I’m sure that your book owes its success to its positive approach. However, after hearing a diagnosis of ASD, parents are distraught. What would you say to them immediately after the diagnosis? How would you support them?
While it’s true that some parents are distraught after getting a diagnosis of autism for their child, many are not. Many are relieved, sometimes even excited, to be able to have a plan, a path, a prognosis.
Still, it’s normal to grieve loss. An autism diagnosis can feel like a loss, perhaps the loss of a vision that parents had for their child that may or may not be realistic. They must adapt to that new image. It might well turn out to be no less fulfilling and no less rewarding than their original vision, but it is different and there’s a period there where some parents have difficulty accepting it. The very first thing I tell parents to remember is that everything they loved about their child before the diagnosis is still there.
The second thing to always bear in mind is that one of the most hopeful words we have is “yet.” When we get bogged down in all that our child can’t do or doesn’t understand, it’s important to add, “yet.” Every child, regardless of the degree of autism, is capable of doing more than they are doing today. This is also true of parents, teachers, and community. The autism spectrum is vast. Autism itself imposes no inherent upper limits on what a child will grow to be and accomplish. The variable is the willingness, curiosity, flexibility, resourcefulness and tenacity of the adults around the child.
In working through their grief, parents might reflect on why they feel grief-stricken over the suggestion of autism. Do they think autism sentences their child—or themselves—to a “less-than” life? No one, absolutely no one, can predict what a child may accomplish. Advances in medicine and education we can’t conceive of now lie ahead for them.
- Your son, Bryce, received his diagnosis when he was three years old. Now he is an adult and a successful person on both professional and personal level. What do you think has helped him the most? Supportive environment? His own predispositions?
Bryce’s successes are the result of the alchemy of his childhood. First, I unconditionally accepted and respected him as he was, and was relentlessly curious about the factors within him and in his environment that made him so. That led me to spare no effort in seeking out the best possible educational settings, throughout his childhood. By nature, this was a moving target, but I quickly learned that I always had choices, even when the slate of choices wasn’t always good. Was he pre-disposed to want independence? He did exhibit that from a very young age, but by putting him in the most supportive environments I could find, and removing him from ones that weren’t working, he had the benefit of that kind of advocacy from his earliest years. It was very much a kind of scaffolding—we all have to learn how to handle failure, but by building a foundation of success under him, he was quite able to handle life’s inevitable increments of failure as we judiciously removed layers of scaffolding. Never completely, of course. He has a support system as an adult, but don’t we all, in some form?
Bryce has said straight out that “it isn’t easy being autistic,” but he also chose to focus on can-do rather than can’t-do. His successes included participating in organized sports and theater in childhood, graduating high school as valedictorian, earning a college degree and five additional certifications, learning to drive and buying a car on his own, holding full-time jobs in the workplace for 4 – 5 years at a time, then moving up. No one suggested he couldn’t do these things because he was autistic. His support network gave him direction and cleared a few paths for him, but the hard work and accomplishment were all his.
- We already know a lot about the autism spectrum, but knowledge doesn’t always keep up with the education system. If you could give three pieces of advice to teachers who work with autistic children, what would they be like?
In my book, Ten Things Your Student with Autism Wishes You Knew, the first three “things” are 1) to view the autistic child as already whole, a many-faceted individual not defined by any single characteristic, and not a collection of broken or missing parts, 2) that learning is circular, that a teacher must be fully open to learning from the student in order to be able to teach that student effectively, and 3) teaching autistic children requires teamwork—between teacher and student, teacher and parents, teacher to teacher, etc. The rest of the book incorporates the importance of understanding sensory needs in autism, instilling trust, recognizing the different thinking structure of the autistic brain, finding functional means of communicating in whatever form that my take, and teaching self-advocacy and self-sufficiency. Much of what teachers need to know about teaching autistic students isn’t autism-specific, but rather how to teach critical skills in a manner comprehensible and meaningful to the student who thinks and processes differently than their non-autistic peers.
- In your opinion, in case of looking for the causes of our child’s misbehavior, we should start from ourselves. I find this advice very important. What mistakes do you think caregivers most often make? What do they fail to notice?
We can start by doing away with the mindset “misbehavior.” Behavior is behavior, and all behavior is communication. It’s difference between “This child is giving me a hard time. How can I get them to stop?” and “This child is having a hard time. What can I do to help?” Behaviors always have a root source, a need going unmet. Attempting to squash, redirect, or punish a behavior without addressing its root source will leave the need unmet and result in a different behavior arising to try to meet it. Forcing compliance through fear or threat is never a win.
The behavior of an autistic child is a reaction to their environment, and the social environment is every bit as impactful as the physical one. It’s only common sense to question whether our own behavior is triggering their reactions, positive or negative.
- There is a lot of talk in Poland these days about therapies that are harmful to people on the autism spectrum. Years ago, there was a desire to change a child’s behavior, just because he wasn’t doing what his peers were doing. Today we know that an autistic person’s brain works differently, that self-regulation (stimming) is necessary to calm the nervous system. Do you think the time will come when directive therapies will finally be banned? Should they be?
I’m not qualified to pass judgment on whether treatments or therapies should be banned, but it will become a moot point when parents and professionals become aware and educated to the point where they deliberately choose not to engage in such therapies, and choose to allow and encourage behaviors that help the child master self-regulation. As I mentioned earlier, countless autistic adults are now speaking out about how such therapies affected them as children. They are the ultimate authoritative voices on whether any therapy or approach is effective, abusive, or somewhere in between. It’s imperative that we listen to them, as individuals. I’ve always believed that true expertise in autism can only come from aggregate knowledge and wisdom across its many facets, starting with autistic people themselves, who communicate in words, behavior, artistic expression, and many other ways, and in community with all who live and work with our autistic children and fellow citizens.
- In every country the support system for autistic people looks different. What do you think works well in the US (and maybe we should follow the example), and what would you change if you could in your system?
I’m glad you asked about “support system” rather than “educational system,” because lifespan support for autistic people benefits all community, not just the autistic individual. It’s necessarily different in every country, as culture and economics dictate. But it always comes down to individuals, one-on-one connections: The effective parent, teacher, therapist, who finds and opens the most functional channels of communication, in whatever form that may be, for the autistic person. The supportive friend, family member, neighbor, people they interact with throughout community. In this country (the USA), the Covid-19 pandemic turned both the education and business worlds upside down. One of the lingering effects is that many schools, businesses and medical entities don’t have adequate staff to meet needs. This is a devilishly difficult situation, which may or may not improve, so for now we are left to shape support systems within those restrictions.
It’s now widely recognized that support for autistic children should ideally begin with early education. But with the unemployment rate of autistic adults so appallingly high—I often see estimates ranging up to 85%, depending on how it’s defined—it seems clear that we need to focus from the beginning on helping children develop the skills that will enable them to enter the workplace. This includes social communication, self-care, behavior, critical thinking, time management, teamwork, adaptability, self-advocacy. It also includes instilling the self-confidence that they “can do it,” and the tenacity and resilience to do so. Long before a child should even be thinking about what kind of paid employment they want to pursue, they can be taught these life- and workplace skills in tiny increments, even from toddlerhood. The other piece that needs to change is employers being willing to make reasonable accommodations for neurodiversity. This will happen when employers are able to recognize that these adaptations are going to greatly widen the talent pool available to them, that autistic workers offer strengths that may not show up on a resume, and that self-supporting neurodiverse workers, in whatever degree possible for the worker, benefit all community. Educating children is expensive, yes. But the cost of services for a non-working adult through the lifespan is far greater.
It pleases me no end when I see an employer who’s made accommodations for an autistic worker, whether it’s a flexible work schedule, written or visual instructions, adjustments to the sensory or physical environment, extra time or breaks for self-regulation, and the rest of the so-called typical employees say, hey, we want that too! Also true in classroom settings. What’s important for the autistic person can also be very good for others in reducing stress and anxiety, and increasing positive team outcomes by allowing everyone to work at their best.
- How has the book “Ten Things Every Child with Autism Wishes You Knew” changed your life?
Because Ten Things has been translated more than 35 times, it’s given me a vast window on the human condition all over the world and brought me so many profound connections that wouldn’t have otherwise happened. I’m constantly struck by both the similarities and the differences we share from country to country and culture to culture. Bottom line, kids are kids everywhere, and parents everywhere share many commonalities too. It’s good to have such a definitive starting point for such complex conversations. I think it changes all of us, for the better, when we realize we’re not alone in our challenges.
It also has had an unexpected circular aspect to it. In teaching my son to be his own best self-advocate, I realized how poor a self-advocate I was myself. I regularly agreed to meet the unfounded assumptions of others even though it was detrimental to me. Here’s an example. It’s broadly assumed that when an author writes a book, they’ll want to go out and speak in front of audiences about it. I did that for years, for gatherings from 6 to 600. I’m an introvert, and those speaking gigs were so very hard for me. How does it follow that because a person can work alone for months on end writing a book, that they can then speak/teach live in front of hundreds? It makes no sense. It made me realize the depth of how we force our kids to mask their preferences, fears, and discomforts in order to meet our arbitrary assumptions. I started including that in my talks, as an opening for us to consider how unrealistic our expectations for our autistic children might be. And finally, finally learned to say no to these gigs that were literally making me sick. Happy to come sit on your sofa for a book club discussion, but no more putting myself on display in front of crowds.
The concept of self-care gets a lot of discussion. Self-advocacy is part of self-care, and too often autism parents may put their own needs after everyone else’s. But it’s incumbent upon us to model the skills and values we want our kids to develop. It was never clearer to me than right before one of those dreaded speaking engagements. While I was melting down on my bedroom floor over it, Bryce came in, leaned over me and said, “Mom, it’s like you’re always telling me. Just be yourself.” Circular learning, indeed.
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Read the interview in Polish on HelloZdrowie
Read more about Monika Szubrycht’s writings on autism
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