I had the chance to participate in Dr. Tiece Ruffin’s Education 379 course — focused on Special Education — at the University of North Carolina Asheville in December. Dr. Ruffin invited me to come to the last class of the semester.
Some of the best and most impactful people I’ve known in my life have been schoolteachers. There is no more noble calling. I was excited to share my experience, perspective, and values as a parent of a special-needs autistic child with students who will be future educators in a variety of roles and settings.
My son, Nicholas, is 16. He is a 10th grader who attends a large public high school in the Asheville, North Carolina, area.
I’d outlined topics — really, just words, the broadest possible values and themes — I wanted to touch upon during the class. The class was great, the students attentive and engaged. I have now taken this outline of values and added to it questions for reflection for educators and other professionals — and in many cases even for autistic individuals and parents to inform an advocacy language and perspective.
Below the questions, I share my own thoughts and reflections, briefly, as I feel and think about these things today. I encourage you to share your responses to them in the comments section; using the social-media share buttons included at the bottom of the post; and, much more importantly, as part of advocacy in becoming an ambassador for awareness, acceptance, inclusion, and kindness in your own schools and communities.
What does genuine inclusion look like in school?
Most schools play at inclusion. They offer the appearance of it without the soul of it. Boxes are checked to meet the minimum requirements of state and federal law or an IEP, and then professionals, even when good intentions and goodwill are present, think they’re doing their job. Staff and budget limitations and poor modeling reduce ambition, and deficient outcomes come to be seen as realistic and acceptable norms. And so the norms endure.
Inclusion is culture, and it is viral. It is viral among educators, among administrators, and among students. It begins with choice and champions — leaders who embrace it, model it, make stands for it, and expect it and nothing less. Administration and teachers speak to the value in deep and consistent ways, represent the value in everything they do, seek to learn from schools that have succeeded at it, and create innovative and participatory structures for growing inclusion as a value and a practice among staff and also students. More is asked of all students, fundamentally, inspirationally, and enthusiastically. When children and young adults are asked and immersed in a culture of inclusion, they respond. They support one another. They rise and they grow.
Inclusion is a lived culture of respect, conscious and increasingly natural effort, generous understanding, and above all vibrant, proactive kindness. It requires education — about neurodiversity, for example — but hopefully most schools are good at education. A culture of inclusion extends beyond autism, or general special needs, to all the communities and categories of people that endure prejudice, discrimination, judgment, or simple insidious obscuration and irrelevance. And a culture of inclusion contracts interstitially — beyond, between, and within all those communities and categories — to the one individual, each individual with or without obvious categorical identity, who needs acceptance and love, just like everyone else.
As well, obviously, inclusion requires and actively fosters the end of open bullying or tacit ostracization. And inclusion doesn’t permit the formally structured ostracization of ghettoized classrooms in which clusters of autistic and other IEP kids are shunted aside by themselves or while paired with academically underperforming allistic (non-autistic) non-IEP children, serving no students well in classrooms designed to minimize educational services and costs.
Segregation is the antipode to inclusion. Segregated schools lead to segregated societies and diminished — less kind and full — lives for everyone. Segregation is a choice, but one in this context made primarily from laziness, oversight, prejudice, meanness of budget and spirit, or a diminished understanding of what schools and education best mean for society and every individual in it.
What can this specific human being achieve? What difference can a school truly make in an autistic life?
Schoolteachers, professionals, and parents need to temper their arrogance and know what they don’t know. Critically, for autistic children and other special-needs children they need to work constantly to recognize and then overcome the pervasive prejudice of low expectations at school.
Many children will rise up to opportunity and insightful vision when they receive proper supports and proper attitude, and sometimes even when they don’t. More commonly, though, they settle down to lowered bars and “celebrated” achievements that insult their promise and injure their possibility.
Ambition requires overcoming what you know from experience — experience, utilized mindlessly, limits and quickly become predictive and self-fulfilling. Ambition demands learning lessons, yes, but also starting afresh with each and every child, recognizing the individual and treating that individual and her or his promise with dignity.
Ambition requires listening, exploring, and pausing, giving real thought in creating supportive educational plans geared toward strengths, interests, values, and life needs and staying open-minded to their effectiveness and nimble and adaptable in response to those effects. It means recognizing that autistic developmental and educational timelines often differ from non-autistic ones, so measuring against standard encourages irrelevance and misguided priorities. It means listening to the child deeply, in whatever ways the child communicates, and respecting that voice and truth at least as much as those offered by the parents and the professionals. It means projecting confidence and clarity within resistant school bureaucracies and byzantine school policies and politics, as well as finding and partnering with likeminded professionals to build a passionate, growing community of smart, heart-centric trailblazers and ambassadors within schools and school systems.
It requires giving proper supports and supportive personnel, not minimal or inadequately trained ones.
It means seeking out and listening to the voices of autistic adults and accounting for their stories and perspectives about what they have encountered in schools and in their lives.
Most importantly, ambition requires educating and empowering each child with her or his own agency — agency and the right to self-determination.
How is autism acceptance expressed in school settings?
In the past decade there has been an advocacy shift, keyed by autistic adults, from autism awareness to autism acceptance. How does acceptance fully express itself in school?
First and foremost, it asks for not just acceptance of the student in school but acceptance of the diagnosis itself. That is, don’t work to make an autistic child non-autistic. Don’t make the goal to create, or to fake, a child who isn’t who he or she truly is. The individual child is not just the diagnosis, not at all, but the diagnosis is part of every autistic child and adult and will be, always.
Accepting autistic children as autistic means not forcing them to follow non-autistic norms. Bullying of a child who stands out for flapping her or his hands, for example, is not cause to teach or force a child to stop flapping. It is cause to stop the bullying. It is cause to educate the bullies — and all students and teachers — about autism and basic human goodness. And it might mean, too, working to empower an autistic child with increased self-awareness and giving them, in an unbiased and honest way, choice.
Acceptance means not demanding unnatural behaviors. Many autistic adults describe forced eye contact as being physically painful. At the same time, many autistic children have increased eye contact as a goal at school and at home. Such goals are unkind, unless a child genuinely chooses them.
One very significant error many school professionals and parents make is in designing supports with a goal to remove them to promote “independence.” Don’t create supports just to remove them; don’t define success of the supports as their removal. The truth is we all, disabled or not, need certain supports all our lives. Some supports for special-needs children, and autistic children specifically, are necessary for all of school. Some autistic adults live beautiful, full lives while relying on visual and technological supports always. It is cruel to create a support regimen designed with an intention and underlying strategy to remove the very supports that reduce anxiety and allow children to participate and succeed. Doing so also means the supports are never truly fully committed to or invested in, so they are less likely to be successful.
Acceptance crucially includes awareness, which demands early and consistent education for everyone about what autism is and how it expresses in children and adults.
Acceptance, in other words, means fostering a welcoming, awake, heart-focused community and designing appropriate supports to facilitate academic and social success and emotional well-being for autistic children and all children.
How, why, and with whom do you communicate?
For school professionals, the communication web needed to support an autistic student successfully is complex and, frankly, can be burdensome. Expressive and receptive communication is needed daily with students, families, and other members of the school and administrative team.
Perhaps most children are poor reporters of the substance of what happens at school. But for many autistic children, and even more so for autistic children with communication disorders, that deficit is pronounced or even insurmountable. A successful program requires daily communication between school and family. If you assess what’s going on at school or at home without consideration of the other, of the full picture, you can quickly come to false conclusions about what is and isn’t working in the school program (or, for that matter, at home). Together, teachers and family need to design a communication structure that facilitates sharing of information for all those involved: designing a system that asks something of a teacher he or she won’t deliver or expects something that doesn’t fit a family’s communication style or ability means communication, goodwill, and finally trust will likely be injured.
Communication between school team professionals is also vital: passing along what is succeeding and failing across settings, collaborating on effective solutions, and especially taking information from parents, outside professionals, or advocates and making sure it is reliably communicated to all members of the school-professional team.
The IEP document is a vital communication tool, as well. More times than not, parents find much more effort and emotion go into creating these documents than is ever given to reading and utilizing them, at least without due-process threat. The IEP is more than a legal document; it is an ethical commitment.
Most importantly by far for everyone involved and in every aspect of schooling, though, is continuous, intentional communication with the autistic child so the child gets to contribute and participate, regardless of perceived cognitive and expressive-language ability. That means consistent and well-designed visual and written supports to share and deliver information clearly and in ways that autistic children typically best understand. It means deep, respectful, and genuine open-minded listening to what the child expresses verbally and nonverbally, behaviorally, and simply in terms of her or his well-being and happiness.
And it means whenever appropriate — and hopefully in the absence of adversarialism and in the presence of kindness — including the child as part of the team and making the effort to facilitate that communication with the team’s most important member. Because, ultimately, what the school-and-family team is actually doing is shaping the circumstance of that child’s life. Goals are well and good — and can be important and clarifying — but remember that the child is living her or his life not in or for some possible future but right now. And so are you.
What does the truth ask of you?
This value category was going to be called bravery. But in the school system honesty and bravery are equivalents.
Teachers often want to do better for these children. I have friends who have gone into the profession and entered the school systems, or have retired out of them. I hear their challenges, about what they’re allowed to do and not do, about lack of resources and staff, about what they can and cannot say at IEP meetings. Some teachers, frustrated by limitations imposed on them, have expressed hope that I’d sue for change, because that’s the only way they could see real change occurring, and most of the advocacy organizations don’t seem to have the courage and strength of their stated missions to lead the way.
A team of educators, administrators, family, and advocates or other professionals gathers in a room for an IEP meeting. What supports are needed for an appropriate education to meet the student’s needs in the least restrictive educational environment, as the law requires? Resources in many school systems are limited and so consolidated, and what is said in that meeting often differs from what is said outside of it, what is whispered in hallways and told to intermediaries in confidence.
Twice, once in an IEP meeting and once in communication that was then brought to an IEP meeting, honest, brave teachers have taken transformative stands for what they believed was best and most appropriate for my child and his education. They have my lifetime of gratitude. Most haven’t expressed full truths, though. Saying truthful things can create legal obligations for the school system given children’s right, under the Individuals with Disabilities Act, to a free and appropriate public education in the least restrictive environment possible.
Those legal obligations exist, however, just as much when they are known and unstated. If a child, for example, can succeed in a less restrictive environment with supports the school system cannot afford in its budget, it is nonetheless obligated to provide those supports. Otherwise, the school and its administrators are breaking the law.
When teachers and school professionals aren’t honest or forthcoming with families, as well as with one another, trust breaks down. Hope breaks down. Teachers, administrators, schools, and school systems are then commonly operating out of integrity, unethically, and illegally, that is, with disregard for and in violation of the law.
You’re never making a wrong decision by stating and making a stand for what’s true and in the child’s benefit, even if administration may turn against you and your job and status could be at risk. Tell the truth confidently nonetheless. Advocate in the best interest of the child — not of the school, not of your peers, and not of the family. Not even of yourself. Let’s have a room full of people telling the truth instead of acting strategically, and better, truer decisions will be made and a healthier culture will be created in and around schools. That begins with each one of us.
I also expect honesty of perspective about my child more broadly. It’s important to know what you think my child can or cannot do or achieve. Your vision of possibility might be more limited than mine — or it might be more ambitious. We all — the child, the family, the teachers, and other professionals — learn from each other for the good if we listen, think, and express honestly and with generosity and consideration.
Why do you do this work?
Kindness is at the heart of the work teachers do. It’s why you start: to help children.
That heart intention doesn’t always translate into kind realities, though, and when it does it doesn’t always sustain. That’s not because of a change in intention. It’s because of a diminishment of intention and an intermittent loss of compass.
There’s a simple marker to measure kindness — the kindness of the classroom and the kindness of the school environment — that defies the standardized tests and the state requirements and a school’s political and bureaucratic complications:
Is the child happy? Kindness and happiness are inextricably linked.
Kind schools foster kind children. Kind children become kind adults and, together, kind adults and kind children create a kind society and culture.
Learning, as well, occurs most fully in kind, supportive environments. For autistic children, visual structures are kindness: they reduce anxiety and clarify expectations and meaning. When students are respected and cared about, they can be their best selves. Everyone benefits from a culture of — and commitment to — kindness.
What does respect for an autistic child mean?
For far too many autistic students, the very best school years involve getting by and killing time — school as daycare. Reduction of “behaviors” equates to successful education, commonly. Less is expected of autistic students, and lower expectations become self-fulfilling for all involved.
What are you building toward? All autistic students deserve the respect of a genuine, appropriate education with meaningful goals and lived realities of happiness, acceptance, inclusion, support, interdependence, and learning. Goals shouldn’t just be behavioral checklists but building blocks appropriate for success first in school and then in life. Teachers can bring their perspective, passion, and vision to partner with the student and the family in deciding what has relevance and meaning for this individual. Educating an autistic student requires respect.
Respect the child.
Respect the neurology.
Respect the autism.
Respect the child’s intelligence.
Respect the child’s possibility.
Respect the voices of autistic adults more broadly: listen and learn from this community.
For teachers, in particular, respect the sacredness of your role in this profession you have chosen. Respect yourself and the consequence, potential and realized, of your role in this child’s life and every child’s life.
And respect the autistic child’s humanity.
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Other articles about autism I’ve written are listed here and include Top 10 List: Things to Remember When Working with Autistic Children or Other Children with Special Needs; Autism 101: Hating Your Autistic Child; and a six-part series about autism.