Top 10 List: Things to Remember When Working with Autistic and Other Disabled Children

I recently did a recorded presentation for an online class at Western Carolina University–Biltmore Campus for students working to become special-ed teachers, counselors, and therapists. I’ve done a good number of such talks, usually in person, over the years at TEACCH, UNC–Asheville, Blue Ridge Community College, Western Carolina University, local medical groups, autism camps like Camp Lakey Gap, and the Family Support Network of Western North Carolina.

Immediately before giving a presentation I often jot down a few specific points to make, beyond telling my son Nicholas’ story, geared toward the particular audience and often affected, no doubt, by what’s going on in our lives at the time. Here are the main points I made that day, plus a few more now added, all specifically geared toward teachers and therapists but I hope still helpful when generalized out more broadly, including to professionals who work with all disabled children and even to parents and family members.

My son is 12 years old, and he is autistic. Here is the list:

1. Be ambitious. Don’t sell disabled children and other children with special needs short. Don’t assume you know what they are or aren’t capable of; don’t assume they do, either.

2. Respect each child as an individual. Every child is unique and will respond in her or his own way to different therapeutic and academic approaches and contexts. Even those responses aren’t static: they may change over the course of a childhood.

3. Respect the values of the child, not just the parents. They’re not always the same. Determine what matters to the child, what he or she values, and work from that vantage point. With that in mind, be flexible about what normative is and what you’re working toward.

4. Beware false positives. I misuse this term in my own way: Don’t assume a specific intercession or approach, in a crisis especially but even over time, is responsible for a change. The thing might just have changed, anyway: there might be correlation without causality. Children get older and develop: it could be a therapeutic approach is incidental to a development. When a child is in a crisis period representing the low point of a cycle, getting better may happen with or without intercession, but with one you might misattribute responsibility and then have a child become dependent on something that may have been irrelevant at the start.

5. Educate yourself. There are two important areas in which many — actually most — professionals are lacking. First, proactively learn about all the resources, activities, events, and opportunities in your area. You function as a hub of the wheel for many children and their families. Keep your head up, not down. Learn and share. Second, learn the language of disabled adults generally and the specific communities you’re working with: hear their conversations and dialogue in person and online. Acknowledge and represent them by incorporating their common interests, concerns, complaints, and memories into the work you do. Respecting the opinions of autistic adults is why this blog post, originally written in person-first language, has since been edited for identity-first language; knowing about that debate and others like it is a starting point for making informed choices about your own language and actions.

6. Empathize. Understand how hard life can sometimes feel for these children. The world is not built for them. The world is built for what’s most common, not for variation — for neurotypicism, not for neurodiversity, for one example. Many of these children are foreigners for life — in society, in school, and even at home — being asked to learn ways unnatural to them and being told in an essential way, again and again, that who they are is wrong. For many children, the asked-for transformation and inside-themselves translation in speech, preferences, behavior, and even thought is a great and constant burden. The sum of well-intentioned individuals trying to help them is, unfortunately, a generally hostile aggregate trying to recreate them.

7. Identify and remove your own pejorative associations and conclusions. When you deliver diagnostic information — a diagnosis of autism at the start, for a specific example, but equally a low IQ, a secondary diagnosis, a medical observation unknown previously, an academic assessment — you only are delivering negative information (i.e., bad news) if you think that’s what you’re doing. Deliver facts instead. Deliver facts about these beautiful people, who are now no less beautiful and who are exactly as they are. You just know more about who they are now, and with this awareness you, their families, their community, and they themselves can help them live their best and happiest lives.

8. Empower. Offer choice. As children get older and to the extent they are able, they should have the opportunity to take on ever increasing ownership of their options and preferences — and thus their choices and their consequences. To revisit point No. 3, their decisions might be different from what yours would be, or from those a parent or mainstream culture and society might make for them.

9. Therapists, teachers, counselors, and care providers can be cornerstones in the lives of these children. Don’t underestimate your role, not just therapeutically or academically but also emotionally — in the emotional life of the child. It’s every bit as important.

10. Imbue all the work and effort with fun and joy. Regardless of the “goal,” the child is living her or his life right now, in each day, and it should be a happy one. And yours should be, too.

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