Feature Issue on Loneliness and People with Intellectual, Developmental, and Other Disabilities

For a long time, I had no concept of the word “we.” Why would somebody speak of others if they were talking to me from themselves? It didn’t make sense. Why would they feel like they belong to something when they are simply an individual unit? I understood in a vague sense that people felt connected to others, and they would use that to loop themselves in with others, but I didn’t really understand it. With time, I understood how to use the word, I just didn’t use it very often myself, because it didn’t apply.

Going to school was a chance to meet people my age and I did click with some, but I was somewhat socially out of sync with the norm. This is typical for people on the autism spectrum. My friends and I would play in the frog pond after school. We would walk to the store and get a soda and a candy bar, or we’d go in the woods and hunt for tadpoles or read comic books. I had a good time with them, and I genuinely felt empathy and caring for them. My ability to feel empathy was not as good as I went further through the K-12 years, because there’s such a heavy demand cognitively. You’re so over- scheduled, there’s nothing left to devote to empathy.

Once I graduated, people scattered and went their own way, so it was hard to make new friends, but I found that my empathy came out more because I was not as over-scheduled. I worked on reciprocity and connecting with people and checking in on them. I didn’t realize it at the time, but this all had to do with how regulated I was.

Although I had some special education services in school, I didn’t have an official autism diagnosis until I was in my late 40s. With that, and a referral to an occupational therapist, I became calmer and much more focused. My speech became clearer and there were fewer times when I shut down or had meltdowns or injured myself.

And something else happened with the occupational therapy: my social drive really accelerated. I would feel like I had to call my neighbor to check on her. I thought, ‘I’ve got to make sure she’s okay.’

I started reaching out and checking in on other people. Honestly, reaching out is not a part of my neurology. It wouldn’t occur to me. But there I was, asking people how they’re doing, what’s happening with their kids and pets, how their jobs were going. I was checking to make sure the people around me were OK.

I’ve kept up with my OT exercises, and it means that now I can call my brother to chat, or go to breakfast with a friend, when before I wasn’t able to reach out. Now I’m able to better hold friendships together. I continue to do the activities that keep me well regulated, so that my brain is in a space where I’m socially very open. Today my social drive is high. My empathy is higher than before and I’m more resilient.

I’m very grateful for my work in professional development training in schools, law enforcement, and with clinicians and others, but because I am an independent consultant, there are times when it gets kind of lonely as I go for long stretches between assignments.

Not that I have really known what loneliness is, because when you don’t have a huge social drive, you don’t understand that you’re lonely. That ability to pick up on your internal signals can be very blunted. It can be like a dial tone. All I know is that I feel great when I’m around people that I care about. But again, I’ve got a time limit for being able to go on outings, so that makes it a little challenging. And I don’t always realize that I’m lonely.

The author at the Massachusetts State House.

Without having kids, and without having a job to go to every day where I see people like coworkers, I am aware of times when I am isolated.

Friends used to point out to me that I was isolated where I used to live. It was a lovely, semi-rural community and I had a little ground-floor apartment. There were just six of us in the building. It was surrounded by nature and quite beautiful, but again, very isolated, particularly because I can’t drive due to being legally blind.

I applied to move to another place, and it took a long time. It took a lot of help from various agencies to get off the waitlists and move into the place I’m in now. I am close to Boston, and there is lots of activity, including a park, shops, a bakery, and a bookstore.

But what’s amazing is my community. It’s for people 55 and older, and I wish there was something like this for all people on the spectrum.

Everybody here has their own apartment. It’s not assisted living. It’s your own place. We have a community room with events like yoga, energy healing, music, and muscle conditioning. Or somebody will come and perform a concert or get our input on how to spend grant money in our town because our voices matter.

And here’s the thing: you don’t have to go to any of them. There’s zero pressure, and that is what makes me go to them. It’s because there’s no staff here saying, “Are you going to go to this,” or “You’re going to go to that.” No pressure, nothing that makes you feel uncomfortable. It’s so easy and positive and it’s something you reach for; it’s not something you’re pushed into. You know, autistic people aren’t designed to fit in. We’re designed to belong, and that’s different, because we’re different. We’re not supposed to fit into a box. We’re designed to choose our circle and choose the people we vibe with, especially around our passions, and then we belong.

When I was in school, they wanted autistic people to have friends, so they would assign you a friend. That felt horrible, because let’s be honest: friendships are organic, and it comes from the heart. You just click with some people. Having an assigned friend feels awful.

When I moved here, I did not disclose my autism because you don’t know what somebody else’s understanding of that is, but I had my working service dog, Uyak, with me, and he helps keep me safe. I had him with me coming in and out of the building and up and down in the elevator, and people would always greet me with a smile when I had him there by my side, and that helped me make connections.

I am thriving socially here, and I’m so grateful to share with you that I no longer feel isolated in my living community. But to get here, I had to advocate for myself to get off the waiting list and get to a safe place that offered something different. I had to push very hard, and I worked with several organizations to make my voice heard.

Once I got here, there was a lady in the elevator every time I went out with my dog, Uyak. She would look at us and say something like, “He must eat a lot of groceries,” and I said he does. And then the next time, the same thing. After a while I found out her name, and today she’s my best friend. We hang out at breakfast every Tuesday morning and she had me over on Thanksgiving. Otherwise, I would have been alone.

Now I have Roz, and I have DeeDee and Judy and Ted, and all of these wonderful people here. It’s just a wonderful community. I wish that this existed for people on the spectrum who are younger, but then everything would have to be monitored, and the questions would come about whether they’re going to go to this or that event. That pressure is what turns a home into an institution. It’s not whether or not there is staff, because staff can be wonderful. It’s not whether there are rules, because everybody lives by rules. It is whether you are pressured to do things that should be organic, like making friends or going to an event. The pressure being gone is what makes me thrive here. I’m not afraid to go to things, or to not go. And because there’s no pressure, I go.

What I would suggest for younger people transitioning to adult life is to get involved with a group that is organized around something they are passionate about. But to get started, give them private lessons, so that they are not overwhelmed, and they don’t fail in front of people. They get their learning on their own, with support, so they develop a sense of mastery. And when you develop a sense of mastery you get confidence. And now you join a group of other people who have similar talents, and you come in ready to learn more together. You are a “we.”

Having a pet, like I have, is not a possibility for all of us. It is something that, if it’s an interest, should be supported, because an exercised heart connects well and often. When you’re by yourself and don’t have a spouse or children to give those connections for free as part of a family, having your kitty, or your bunny, or your bird, or your dog, or whatever it is, that’s so important. To have somebody who cares that you’re doing well and who is non-judgmental, who doesn’t expect you to use your words, is an amazing, positive thing. It is being accepted for who you are.

Uyak – named after an Alaskan river – does that for me. I chose that name because it helps me remember to go with the flow.