Autism and IDD: Caregiving, Advocacy, Community, and Love

My son, Nicholas, is 22 years old. He is autistic and intellectually disabled. He has diagnoses of severe mixed expressive-receptive communication disorder, obsessive-compulsive disorder, anxiety disorder, and tic disorder. He has severe ulcerative pancolitis as a chronic, life-long condition and receives regular medication infusions to try to keep it controlled. 

Nicholas lives with me, and I am his primary caregiver. He is mine, as well.

Especially as a child, and still in many ways today, Nicholas connects well with people. He has developed a rich, diverse community circle as a result. He also has a Medicaid waiver—what in North Carolina is currently named the Innovations Waiver—which has given him access to support workers both in our home and outside of it. 

Nicholas has had outstanding—smart, caring, committed—support workers, who are sometimes called Direct Support Professionals or DSPs. Over a lot of years, as many as 30 to 35 DSPs have supported Nicholas. One primary DSP worked five afternoons a week for 13 years with him, from ages 8 or 9 to 21. She parented Nicholas as much as I did during those years, I think.

Other workers sometimes took weekend shifts or some mornings during weekdays. There has been an array of amazing people—some of the best people I’ve known in my life—who helped Nicholas develop functional, academic, vocational, self-care, and other life skills.

But just as importantly—more importantly—they lifted him up, centered him, had fun with him, celebrated him, and helped him feel connected to other people in different places and communities.

The best DSPs saw him, heard him, listened to him, and respected him, and they grew together.

Each relationship was unique—and very distinctive in the most meaningful and lasting ones. I love that Nicholas has had friends I’ve never met. He has visited, worked, and played in places I’ve never been, all facilitated by his support workers. Nicholas’ life and my life intersect broadly and deeply, to be sure. But his life is his.

I try to express gratitude to the people who care for, and in the past have cared for, my son, and I know these expressions are never really adequate. Very much like how when I tell my son that I love him, it doesn’t even scratch the surface. Still, of course, to every one of them: thank you.

I hope and trust, too, that for most people caregiving for and with my son carries its own rewards and blessings.

I work hard for Nicholas and fight for him when necessary. Inaccessible, reluctant, frequently hostile systems require not just navigation and persistence but fight. That’s awful and true.

But most of my advocacy work isn’t about him at all. Or maybe, really, it all is—sadly it’s unlikely I’d be involved so deeply in this area of advocacy work if Nicholas wasn’t autistic and intellectually disabled. I certainly wouldn’t be doing the work in the same way.

I always think about the autistic and intellectually disabled children and adults whose families and friends don’t have the capacity, skills, and knowledge necessary to advocate successfully for them.

Or who don’t have family. Or who don’t have friends.

By “always” I mean not a day goes by when I don’t think about these children and adults and how we are failing them and I am failing them with our starkly inadequate service and support array and our weak—and frequently absent—ambition, intention, and resolve.

Much too commonly, they don’t get what they need to have good, happy lives. That is, they could have good lives, even though many people think someone being autistic or intellectually disabled precludes having such a life. It is a much too common prejudice that is a reflection of our deficits, not theirs—deficits in our values, our empathy, and our understanding in being able to see what’s right in front of us and what’s possible.

At best, their lives are considered tragic, with cursory sympathy and minimal service structures sometimes offered rather than authentic support given across a multidimensional life for the entirety of a lifetime.

We—all of us—don’t give these people what they need. We don’t consider them worth it. We really never prioritize correction and getting it right—doing what we know is the right thing. We don’t think of it as realistic or possible.

Meanwhile, all the time, every day, everywhere, they are picked on and bullied. They are called the R word. They are mocked. They are beaten up. They are ignored. They are isolated, lonely, and desperate. They are unhappy. They are abused. They are constantly at risk. They fall through the cracks. They die. Many die, with this—*all this*—having been so much of their life.

That is not because they are autistic or intellectually disabled. It is because we do not accept them as ours—as part of our community, our friends, often our family, as human beings worthy of needed support, of our time, of friendship and of love, and of our societal coin.

That’s our deep failing, and we’ll never be whole until we overcome it. We’ll never be our best selves or have our best society, our best community, our best city or country, until all of that is overcome and transformed, even while we know it has always been true for how society—our society and every society, ever—treats intellectually disabled people.

The Best of Us

Into that great gap, though, step the caregivers. Caregivers are people who create community and found family and engage, include, support, and celebrate autistic and disabled people as kindness, service, and work, yes—but also because they know their own lives aren’t complete when these marginalized and precious people are excluded from our communal, national, and human family.

Some are doing soul work, some are doing God’s work, and some are simply doing good work.

We don’t thank them enough, pay them enough, or see them enough. But surely they are among the very best of us and also, like those in their care, deserve so much better.

As well, there are many beautiful human beings who are family caregivers—also hardly seen, sometimes avoided, sometimes pitied. Most of them don’t want pity, to be sure. They want community, friendship, and support.

My son Nicholas has touched countless lives, including most foundationally my own. But I remember, too, that Nicholas has connected with and impacted people I’ll never know. I won’t ever be able to tell those stories. Those are known only to—and belong to—those people and Nicholas. That makes me happy—to know that, for my son, there is love and community well beyond me, having nothing to do with me, and hopefully lasting well after me. 

Caregiving in community—in homes, in workplaces, in schools, in churches, at the YMCA and the grocery store, the park and the pool—is inclusive and the purest kind of love. It is interdependent, not unidirectional. It is diverse, respectful, and realized and expressed in countless ways. Caregivers’ lives are enhanced as much as those of the people cared for. All those places—schools, churches, the park, the pool, places of employment—become better expressions of genuine community.

We all become better. All our lives are enriched.

Advocates who embrace and champion this vision usually recognize autism specifically and intellectual and developmental disability generally as necessary parts of any holistic justice movement—as an essential aspect of both social justice and societal justice.

Advocates also see and account for the intersections. They know, for example, that Black autistic and intellectually disabled children in school are disproportionately punished for behaviors that result from lacking supports and services for their autism or intellectual disability, recognized or not; that Latino/Latina/Latine children and adults with intellectual and developmental disabilities are wildly underdiagnosed in the United States—for reasons that include discrimination and language injustice, as well as cultural barriers to diagnosis—and so lack access to proper services and care; that autistic people have greater variation in gender and sexual identity—they are disproportionately LGBTQIA+—and even those places that offer sexuality and identity trainings and programs rarely do so adequately for and with understanding of autistic people; and so on.

We know this: Every marginalized population—and just about every demographic population at all—includes many people who have intellectual and developmental disabilities.

They are us. They are always part of us, and thank God for that.

In advocacy we can champion them all.

In government we can do right by them—every elected official makes choices about what they decide to make stands for and use their political capital on.

In community we can open our eyes, our minds, our arms, and our hearts.

It only requires a collective determination—really just a decision that it matters, that they matter—and we can make so much right so fast for both the caregivers and those in their care. It’s a lot—a big ask—but it is doable. It’s a choice. Let’s make that choice, in every aspect of community and society and in every level of government.

The faster we do it the more lives we save—the lives of family, friends, and known community members but also, every bit as valuably and at least as urgently, of those autistic and intellectually disabled people we do not see, we do not know, who are unknown but who also need invitation, inclusion, connection, place, belonging, friendship, support, services, and love. 

Let’s make sure they know that they are part of our family, our community, and our nation, and we want them to be. We want to care for them and be cared for by them. Let’s do it now. 

Please: let’s do it now.

 

On March 31, 2023, President Biden issued a Presidential Proclamation naming April as Care Workers Recognition Month. He said to our care workers; “The work you do matters. You are there for families when they need you most — providing comfort, strength, and compassion that inspire us all. Your devotion to the people and communities you serve represents the best of America’s character, and we will always stand with you, ensuring you are seen, valued, and rewarded fairly for the work you do.”

I have written many articles about autism and intellectual and developmental disability on this site, including:

• Autism Acceptance—and Celebration
• Autism Adulthood: Caring for the Future and the Present Moment
• Definition as Destiny: Breaking Autistic Boundaries
• No “Because” but Love—Intellectual Disability, Identity, Representation, and Value
• Poppa, Do You Have Autism?
• Hammer and Screw: Autism Acceptance and Rejection
• On Blackness and Autism, Identity and Essence
• 7 Values to Live By: Autism Across Schools and Classrooms
• Autism 101: Hating Your Autistic Child
• Accept or Reject: Part one of a series on autism value contrasts
• Autistic Isolation, Connection, and Joy
• My Talk at the 2019 Disability Day of Mourning