When I was 32 years old, I found myself facing a dilemma.
After socially isolating for a about a decade, I began therapy and was diagnosed with both depression and autism spectrum disorder.
The psychologist said that, in addition to managing the depression, we needed to spend a fair amount of time just talking…simply sitting around, conversing…so that we could begin to map out how my mind was processing social data. Once we had a better understand of that, we could then make a game plan.
So that happened. Talking, mapping, managing. That part of the deal was a two year thing.
Then it was time to go out, start experimenting with real-world social interactions…which is where the dilemma kicked in: where does someone like me even go for social interactions? Part of the problem is that I just didn’t have anywhere to be; I had structured my daily schedule around the concept of avoiding people (I worked a graveyard shift, slept days, etc). So finding places where a random, free-floating human could magically appear and make connections…it was tough.
Also, because of the prolonged down time, basic stuff like small talk and body language seemed more alien and confusing to me than ever. Even during the most elemental conversations, I couldn’t help but think of people as unbelievably cryptic and strange.
Part of me felt humiliated to be so out of touch. I’d show up for therapy sessions pulling my hair, seething, insisting “This is pointless.” I just didn’t know where to go.
The psychologist thought it over. She said, “I worry that you’re putting too much pressure on yourself to meet people, which really just turns them into items on a ‘To Do’ list. The goal-oriented thinking may not be helping us here; it’s just creating too much pressure and distance.”
I laughed bitterly, said “Let’s just admit this can’t work, then.”
She thought about it for a long time. Finally, she said, “We need to change up the approach here. What if we don’t work on meeting people. What if we just work on being in social environments in a positive way, all so that you can have a little more time to acclimate to other people.”
“I don’t really know what that means.”
She held up her hands, palms out…her I-come-in-peace gesture. She said, “Just…think about this. What if you volunteer somewhere? Not to socialize. Not to accomplish goals. This would be you helping people…fulfilling a role…and just being around others in a constructive way.”
I didn’t say anything. She continued. “What I like about this is that you’re moving out of a depressive state…and volunteering can be a great way to put yourself in a completely different head-space. The focus is on others. It’s all about service. And it might counterbalance some of the issues with social pragmatics; as a volunteer, you would have a very specific role to fulfill…there would be less ambiguity with all of the unwritten rules of an interaction.”
I disagreed, felt like I could be plenty awkward as a volunteer. But I told her I would think about it.
She said, “This week, do some research…make a list of all available volunteer opportunities; we’ll look it over together, see if anything is a good fit. Okay?”
I nodded. The next week I brought in a list with about a half-dozen or so organizations that were seeking volunteers. She asked me if I had a preference. I didn’t; I was equally anxious about all of them.
She looked at the list for a long time. She began tapping the page. She said, “Oh I like this one. M…I like this one for you. A lot.”
So, we arrived at our solution for the dilemma.
I called the place. I went through a screening process that involved interviews and a background check.
A few weeks later, I began volunteering at a breast cancer resource center.
II.
The center offered a variety of services- information, periodic screenings, financial assistance programs, and so on- but its primary feature was an in-house boutique that offered wigs and breast prosthetics. Women losing hair from chemotherapy or undergoing a mastectomy could visit the center, pick out items at no charge.
I volunteered one day a week, for a three hour shift. When I started, I was pretty nervous; I hadn’t been around people in a long time. But the psychologist was right; having clear tasks and a specific role to fulfill kept most of the interactions on a very narrow track. It was easy enough to just do the work, stay busy and get by.
It helped that I liked the atmosphere of the place. It was this old, three-story Southern house, all hard wood, natural lighting…it was a low-key, sensory-mellow setting.
And it helped that the staff were extremely nice; three women, two with backgrounds in medicine, one a marketing/fund-raising specialist. More than anything, they seemed genuinely shocked to have a male volunteer. For the first few weeks, they kept saying, “Wow…a guy. Here. This never happens.”
I asked why it was so rare. They said most male volunteers were scared off by the boutique and the prospect of helping women try on wigs. I guess I was too preoccupied with everything else that was going on in my life; wig-awkwardness just wasn’t on my radar.
One source of tension did pop up between myself and the staff: all three of them were obsessed with John Grisham novels…and I’d never read one. They were outraged. During the first month I was there, they gave me book after book of his to read, called it “homework”. I read a few, said I liked them. This seemed to placate the staff. One of them nodded, said “Okay. We like you now.”
I ended up volunteering at the center for a total of two years. Here is how an average shift worked.
I would leave my job around 8a.m. and hang out at a grocery store for a bit, people-watching, roaming in circles, staring at vibrantly-colored products. (There wasn’t enough time between work ending and the volunteer shift beginning to go home, so I would just go to stores, waste time). At 9a.m., I’d go to the center.
There was a desk in the lobby facing the front door. I’d sit there. That’s mostly what I did at the beginning of a shift, just station myself behind the front desk. I’d stare at the walls, spin around in the chair. I’d read books. The center had all sorts of books and pamphlets about the various types of cancer, so I’d read those sometimes. Breast cancer, brain cancer, throat cancer.
One pamphlet was written for people with a terminally ill family member. It educated people about what to expect right at the end. For some reason, that one really got to me. I read that one over and over. It was disturbing, so I couldn’t stop reading it.
I’d spend some time in the kitchen cleaning counters, washing dishes, sweeping. I’d walk around the house, empty trash bins.
The house had a few upstairs offices where the staff were located, but a few other rooms were functional bedrooms. People could stay in these for free if they were from out of town and wanted to stay close to a relative in the hospital. Anyway, I’d clean those out when clients left. I’d go down to the basement, snap on latex gloves, wash a few loads of bedding. Then I’d go back to the front desk, read about death, wait.
Usually, once or twice a shift, a woman would come in for a wig. Most women came in right before starting chemo…they wanted to have a wig ready at the first sign of hair loss. So I’d take them into the boutique; it was a side room, large; floor to ceiling shelves, dozens of wigs.
I always asked if they wanted a wig that matched their natural hair color…most women said yes. A few would say, “I’d like to be a blond for once.” I’d say, “Okay.”
Until the hair has completely fallen out due to the chemo, you have to wear this skin cap beneath the wig…it presses the existing hair down, lets the wig fit more comfortably. So a client would pick out a few wigs, then sit in front of a mirror. I’d help them get the skin cap tightly in place…then they would try on a wig. I’d shift it around around, help adjust it.
I did this in cases where the client wanted help. Sometimes clients just wanted privacy, so I’d sound them out on their preference beforehand, clear out if they wanted to be alone. It seemed to be a 50/50 deal…about half of the women would request privacy.
Many clients came in with female family members or friends. These clients only came in with female family members or friends. During my two years at the center, I never once saw a client go into the boutique with a husband or male relative. I asked the staff about it. One manager said, “Same as the volunteers: guys won’t go near the wigs. Guys are wimps.” Sometimes a woman would come in for a wig…nervous, uncomfortable…and she’d get help from me or the staff, total strangers…and you could see her husband out in the parking lot…sitting in the car, listening to the radio; they couldn’t even come inside.
Anyway, once or twice a shift, the wig thing would happen. The whole thing usually took about 20 to 30 minutes. Then I’d go back to the front desk…do more death-reading, answer phones.
Sometimes people would call to ask if they were qualified for one of the financial assistance programs. I’d take out the relevant sheet of paper, read the list of qualifications. The staff provided us with all of these sheets of paper you could refer to during a phone call. I never had to memorize anything…I’d just answer the phone, listen, pull up the info, read it out. If it got complicated, I’d just pass them off to the staff. They never cared, they were laid back.
People called constantly, so the phone-answering had to happen a lot. People wanted the address…people wanted to donate money…people wanted to sign up for cancer screenings…sometimes people would just feel overwhelmed about their cancer diagnosis; they’d call for no particular reason, just to talk; they’d have a million questions; “Should I eat differently?” “What do I tell my kids?” “Should I continue to work?”
I’d say, “One moment,” transfer them to staff.
I never minded being a listener…but the truth is, after a cancer diagnosis, most people want more than a polite listener. They’re hungry for detailed, specific information. And the staff were bright, experienced…they had no problem fielding questions, offering info and resources.
Sometimes women came in for breast prosthetics following a mastectomy. The boutique included shelves filled with artificial breasts that were inserted into specially made bras. Now, unlike the wigs, clients couldn’t just choose any prosthetic they wanted…the bra and insert has to fit, and this meant detailed measurements had to be taken. So, as a policy…and since no one wanted some random dude pressing measuring tape all over them…female staff helped all clients with the prosthetics.
Not all services were related to breast cancer. The center also hosted support groups for a variety of other cancers. There were medical seminars, guest lecturers, and the staff frequently attended health fairs.
One time at the center, we offered this free screening kit for colorectal cancer. The kit included this small, absorbent wand…all you had to do was take the kit home, dip the wand in poo…place the wand in a specially-designed envelope and mail it to your doctor. If you used this kit, there was no charge for the testing.
People misunderstood, though…since they obtained their kit at the center, some of them thought you had to mail it back to the center. So, for awhile, we kept getting crap in the mail. You’d see this distinctive looking envelope in the mail box and you’d know it was another one. I’d call up to the supervisor and say, “More crap in the mail.” She’d laugh and say, “Make sure it stays out of my inbox.”
Not that it was really much of an issue. The envelopes were designed to safely transport this kind of material. Still, no one was thrilled when one of these envelopes returned. We’d have to look at the sender’s name…call the person…ask for their doctor’s mailing address…and send it off for them. Took about a month to filter through all of the crap-mail.
Anyway, that’s it. Sitting at the front desk; phones, cleaning, the wig room. Three hours would go by…another volunteer would show up, take my place. I’d go home, read a little, sleep.
After two years there, I told the staff that I had to leave. Life stuff was happening.
On my final day, they gave me a nice card…and a little going away gift: a John Grisham novel, naturally.
III.
Volunteering was an overwhelmingly positive experience. I did find that I was able to both establish a constructive routine and acclimate to a social scene. (I think it’s particularly worth considering for anyone dealing with employment anxiety and trying to determine whether or not they are ready for the challenges of a work environment.)
The point is not to suggest that people on the spectrum should volunteer as a way to manage social difficulties. Volunteering really is about service, about helping others. I just know that a lot of people out there worry about where they belong; it can be tough to find spaces where you can peacefully co-exist with others.
For me, volunteering was a way to test the waters and develop a modicum of confidence. It wasn’t about me, but the personal benefits were undeniable.
Previous posts: my uncle the beekeeper; travel notes; the invisible daughter; depression stories. And join ongoing spectrum discussions on the Invisible Strings Twitter and Facebook page.
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