Many adult autistics live lives of intense isolation and loneliness, confined physically, emotionally, and psychologically within a limited, closed circle with hard economic and social boundaries, without much choice, agency, or mobility.
It’s heartbreaking for them, and it’s heartbreaking for everyone else, denied the love, joy, connection, relationship, and meaning these precious people can bring to others’ lives.
Autistic adults, like adults with intellectual and developmental disabilities more generally, are not often seen this way societally—as agents of love, joy, connection, relationship, and meaning for others. That’s because they’re not often seen at all.
Most people today at least pay lip service to values of inclusion, diversity, and equity, but the truth is autistic adults, and intellectually disabled autistic adults especially, have been among the most marginalized, discriminated against, and excluded people across societies across time, right up through and including this society in this time, right now.
Another truth is very few people are trying to change this reality in any significant way, even during an era of very active social-justice advocacy and movements.
For many—really for most—people, human beings with intellectual and developmental disabilities, including autistic people, just don’t matter very much.
Even for many of the professionals actually working in the autism and intellectual and developmental disability fields, and for government officials whose jobs exist specifically to do this work, intellectually and developmentally disabled people just don’t matter enough.
I don’t know how to change this truth. It’s a failure I feel every day.
Even so, much of the organizational and advocacy work I do continues to try to work toward meaningful change—transforming the marginalization and even dehumanization of people who are autistic and intellectually and developmentally disabled for the benefit of everyone.
A lot of people a lot smarter and more effective than me do this work, too, and often dedicate their lives to it. I am intensely grateful for them.
Even more people think they’re doing it when they’re really not at all, and they’ll never understand why, which is as tragic for them as for the people they think they are championing.
My own circle includes many autistic people and many people with other intellectual and developmental disabilities. My life is infinitely enriched by each of them and all of them.
Most profoundly, my life has been reshaped—and I have been reshaped—by the person I’ve been closest to in my life, ever.
That’s my autistic son, Nicholas Hemachandra, of course. There’s not a day when I’m not consciously aware of this and, again, grateful to him and for him.
For me, the best moments of my day, every day, are the moments when I first see Nicholas.
Those moments happen at varied times, including first thing when Nicholas emerges from his room in the morning; midday or early afternoon after a support worker has left; and sometimes in the evening when Nicholas comes out from his bedtime preparations for dessert.
We never miss dessert.
There are unexpected times, as well, and they are equally wonderful.
Invariably, I say, “Buddy!” or “I missed you!” I pull him in and hold him close in gratitude, in love, and with joy.
Nicholas is 21. He is autistic, and he is cognitively disabled. His other diagnoses include obsessive compulsive disorder, mixed expressive-receptive communication disorder, and tic disorder. Nicholas was highly self-injurious when he was younger. He has had frighteningly serious medical episodes along the way, with a stroke and a severe onset of ulcerative pancolitis, that provide ongoing challenges, even as he always—always—rises in response to them.
Nicholas is past high school now; past the vocational program, Project SEARCH, that followed it; and now hopefully starting to get past the injurious isolation of—and relationships lost during or lessened by—these COVID years.
Because we are both immunocompromised, we have taken COVID protocols very seriously.
We are settling into a rhythm of shared adult lives, or at least finding a rhythm that feels rich and right for us at this time. Our lives are distinct, even as they resemble and intertwine.
Nicholas volunteers—serves—at a few local nonprofits, including the YMCA, ABCCM, and MANNA FoodBank, at least when his personal support staffing levels allow. I serve in about 20 organizations, committees, and groups now in various ways. Mostly these efforts involve disability, autism, and mental health.
We both have immunocompromising conditions—ulcerative pancolitis for him, Crohn’s for me—that require medication infusions or injections.
We both enjoy hikes in nature, all the more so for me because, well, Nicholas carries the backpack these days. So now we can stuff it full of extra snacks and drinks.
I know what you’re thinking, but, hey, it’s good exercise for him.
We both enjoy various Star Trek and Law & Order shows and Monk, his favorite. We like a lot of the same music, and we sing songs together in the evening—mostly songs we’ve been singing his entire life. We love going to restaurants together and trying new dishes.
He has friends, I have friends, and we share many, as well.
Nicholas sometimes has tougher days. I sometimes have tougher days.
There are things he needs help with every day, and I help him. There are things I need help with every day, and goodness knows he helps me.
But we got this. We got each other.
We share our blessings, we share our struggles, and, mostly, we’re doing great. Life is joyful, just as much as we let it be.
I learn a lot about joyfulness from my son. That’s always been true. And I keep learning.
Nicholas creates his own life, too, independent from mine. With support workers or members of his support network, Nicholas volunteers in places I’ve never been, participates in activities I’ve never attended, and has had friends for years I’ve never met, not once.
Nicholas’ personal support network includes his best friend since first grade, his longtime autism mentor, staff from autism camp, autism and IDD professionals, and friends of his and mine who have known him most of his life.
Nicholas has amazing support workers, as well, who care about him deeply—and who came to work with us because they care about him. That’s lucky—he’s lucky, I’m lucky, we’re lucky—and we know how blessed we are, always, and especially during a time of a national direct support professional workforce crisis that’s severely impacting support services for autistic and intellectually and developmentally disabled individuals and their families, here and everywhere.
He is a man now. He is living an autistic adult life. He gets to determine what that looks like.
With his support network and other close friends and professionals, I help to give him options and ensure he truly understands those options. Then we try to empower him to shape and claim his life in whatever ways he chooses.
As I said, Nicholas definitely relies on me, still, in many important ways. And I rely on him, at least equally and probably more so. I think about whether that is a burden for him. But most times I decide it’s a gift—for him to have someone to love and care for, and how that can frame and support his self-perception and identity. I try to reinforce these things explicitly for him as much as I can. I want him to know them forever, for that understanding about the value and importance of his love and care to continue in a tangible way all our lives, regardless of circumstance, after I’m gone and always.
This seems good and right, his caring for me and his part in the balance of our care for one another only growing. That shift will continue to happen. And our lives and our love will continue to intertwine, as well, for as long as I’m here.
They will hopefully continue to extend and intertwine for him with other people, too, now, later, and always.
But I recognize, as I began this piece: Many adult autistics live lives of intense isolation and loneliness, confined physically, emotionally, and psychologically within a limited, closed circle with hard economic and social boundaries, without much choice, agency, or mobility.
It is true, and it is common. We hope for better, plan for better, and we try to help others find better, as well.
But, right now, it is still true and common.
When Nicholas goes to bed, we make sure his teeth aligners are in, alarm set, windows and blinds set in the “right” ways. Still, he’ll often get up a few minutes later, or even hours later, to straighten things, fix what needs fixing, right what needs righting.
We’ll sing a song at bedtime often, sometimes a few, as we always have—Joni Mitchell and Harry Chapin; Bernice Johnson Reagon and Peter, Paul & Mary; the Wiggles and lullabyes I wrote new words to 20 years ago; his camp songs and, more than anything else, my camp songs.
They’re good songs.
After the “I love you”s, I’ll frequently say: Nicholas, thank you for today.
I’ve written before that was something I learned from Brita Adkinson, a member of my editorial staff at New Age Retailer two decades ago. Brita had worked at Findhorn for a long time, and that perspective of constant gratitude—and gratitude *expressed*— was a gift and learning for me.
More and more often I find myself saying to my son, instead or in addition:
Nicholas, thank you for my life.
If you enjoyed this piece, please leave a comment on this page. You also can share the piece on social media using the sharing buttons below. Thank you!
I invite you to read my articles on this site about autism and intellectual disability, including these:
- Autism Acceptance—An April Campaign, a Lifetime Choice
- Autism Adulthood: Caring for the Future and the Present Moment
- Definition as Destiny: Breaking Autistic Boundaries
- Poppa, Do You Have Autism?
- Hammer and Screw: Autism Acceptance and Rejection
- Autism 101: Hating Your Autistic Child
- Accept or Reject: Part one of a series on autism value contrasts
- On Blackness and Autism, Identity and Essence
- 7 Values to Live By: Autism Across Schools and Classrooms
- No “Because” but Love—Intellectual Disability, Identity, Representation, and Value
- Top 10 List: Things to Remember When Working with Autistic Children
Thank you for sharing. I have recently taken over the responsibility of captaining my 38 year old brother on the spectrum through life. I am heartbroken by the realization that once adults, these individuals are left with so few options to meet and mingle. Isolation has by far been be and continues to be the biggest hurdle we face.
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That isolation seems so resistant to transformation, JoAnn, but the truth is most efforts to ameliorate it are inauthentic and half-hearted. As a society, we seem unwilling to try meaningfully and unable, really, to care. It’s an indictment of us all.
Ray, I simultaneously love and hate the realness of this piece. I continue to be moved by the love and care you and Nicholas have for each other. My hate is for the state of our world that is in desperate need of significant change and the reality of this that is unseen or uncared for by so many, including those “doing the work”.
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Well, Ginny, you’re doing the work and delivering the care, compassion, ambition, and respect we need. So there’s hope for the world, precisely because people like you are in it.
Thanks for another engaging article Ray; you always make me think! You handle your special family issues so well – carry on, triumphantly!
So exquisitely extraordinary, Ray. Your humanity, love, and courage continue to inspire me. I will be sharing this one and hopefully, it will help spread awareness.
David, thank you. Always so generous and kind, sir.
Dear Ray, I am a very fortunate person to have spent my adult life teaching in a Waldorf School that shares its community with 4 different Camphill Movements, Camphill Copake, Camphill Ghent, Triform and a new initiative in Hudson, NY. Therefore both my children and I have been able to experience and share the beauty and generosity of spirit of all manner of humans. Your article and thoughts are so deep and loving. Thank You! Candace
Hi my name is Janine Melhus I have a 19-year-old son that basically fits the description in your peace we live in Bluffton was wondering where you are I would love for him to connect with someone like your son