If you’ve met one person…

There is a saying, “If you’ve met one person with autism you’ve met one person with autism.”

As with all of us, we are each unique. And yet people frequently make assumptions about the similarities of those on the spectrum while downplaying the vast differences. Take for example, my friend C, whose son N has been in school with V since about the age of seven. That’s a long time together! They both have limited speech and social skills, some amazing talent (N: artistic; V: musical) and are generally sweet lovely young men. The main difference is that N is usually mellow and V is anything but. 

C invited me over for dinner last week; her husband was in London for work.  I was happy to oblige as I don’t get that much time with girlfriends. When I came into her house, she was in the kitchen leisurely stirring a pot of risotto. She poured us each a glass of good rose and set the table and we chatted for a while. It was really nice just to hang out and talk about all sorts of things. My conversations are usually short because they frequently are on the phone, often while the caller is driving somewhere, or I have a set time when V isn’t home or is occupied. Even my coffees or breakfasts with friends feel truncated.  I rarely feel that chance to truly unwind, with no sense of what time it is and if I have to be somewhere/do something/tend to someone else’s needs. It’s so relaxing to just hang out with a friend.

After about an hour of talking and watching her get dinner together – I offered to help but was a better conversationalist than anything else – she said “Oh, let me check on N.” It’s the first mention of him.  Now if it was at our house she would be aware of V’s presence from the moment she stepped in the door. Even if he was hanging out on the porch with his iPad he still would soon enough do a lap around the downstairs – he is a man on the move – and stop and say hello. We don’t have much space and V takes up a lot of it.  Meanwhile, N was downstairs happily rewatching Star Wars movies. (It helps that they have a much bigger house.)  He even had taken a nap! A nap! V barely took those as a toddler but taking a late afternoon nap? Yes it’s a lovely thing to do, especially on a rainy day like it was, but I can’t imagine V ever nodding off in the middle of the day. 

C came back upstairs and served us a wonderful dinner featuring lemony barley risotto topped with marinated feta and fresh chickpea salad with lots of chopped herbs. N made an appearance to eat his steak and fries and then politely thanked his mom and went back downstairs. We sat and talked and savored our food and then after clearing the plates and drinking mint tea she served ice cream with macerated strawberries.  It was a delicious meal and a relaxing night, something I’d never be able to have had at our house. Our sons have much in common but they are two very different young men with autism.

I try not to feel a longing for that.ease C has. I have learned to accept V’s challenges and strengths and to take what relaxation I can get, which usually occurs after he is asleep and before he gets up.  I’m thankful for his generally good sleep habits, and that he’s been sleeping in on the weekends, while my body automatically wakes up before 7, even without my weekday alarm, allowing me time to myself. 

But this past Saturday morning I broke with my usual quiet and at T’s urging, watched a tribute to Joni Mitchell that was on PBS that he had watched the night before (It’s streaming all month.) An assortment of great artists in their own right singing her songs and Joni herself, the 2023 recipient of the Library of Congress Gershwin Prize in Songwriting,  It was a really lovely way to start the day. Joni Mitchell was the soundtrack to my adolescence and early adulthood and I know her songbook well. And as V slept in until close to 10 am I had time to watch the whole show.  

Then the other night after V went to sleep, T and I rewatched Everything Everywhere All at Once. I loved it the first time although I found it too frenetic and confusing – I have enough trouble just keeping track of one universe. I was easily distracted by elongated fingers and magical bagels and all sorts of other out of sorts images and activity, I couldn’t follow the story. Watching it a second time, better prepared for the cacophony, I had a keener sense of what it was about and enjoyed it more. I caught the homages to other filmmakers I like, and followed the plot and themes. A fraught relationship between mother and daughter, an immigrant tale, a love story. Someone with too much on her plate/desk. I can relate to that. There is much more that is illuminated in the rewatching and I’m glad V went to bed early enough to give us the opportunity for a second viewing.

On Sunday T and B went to Yankee Stadium, where they hosted the San Francisco Giants, their favorite baseball team. I was so glad that they had the outing together yet I admit I had trepidation about spending the whole day with V without a car and our usual trips for walks. But he was in a surprisingly mellow mood and was comfortable staying in all afternoon. It was like getting a little taste of what my friend C has everyday. I could actually read one of the books that I’ve  taken our of the library. (I’ve gotten into the habit of immediately putting in a request for a book after I read about it because I don’t trust my memory to remember the title later.) I now have four books in which I have taken nibbles more than bites.  So I read. We ate a lot. We listened to music. We had a nice relaxing day, and T and B had a great time at their game. It is possible, this happy life. 

Still, V is rarely that relaxed, and so we usually plan for his more frequent restless days. We take turns and make compromises and try to do what is best for all of us. This week B and I are going down to my brother’s for the second night of Passover. This holiday is always a challenge for V, with the seder preceding the meal and a gathering of people he doesn’t see very often. Why sit around a table filled with food (at least, a lot of matzoh) if you aren’t allowed to have it until later? Why all this reading and talking at the table while the kitchen smells so yummy and is filled with good things to eat?It’s a holiday that makes no sense to him. He has never been able to sit still at the table during that time and so T and I usually have to trade off being with him. This year we decided it wasn’t worth the long trip given his hyper energy level lately so just two of us will go. T and I will have a short seder of our own at home on the first night.

I’m hoping V will be mellow that afternoon and evening with T while we go down to Philadelphia, but there’s no way to predict which version will present itself. Will he be pacing the floor and pleading for more walks, or sitting nicely listening to music while T watches the news? It’s impossible to know, he’s an enigma. If you’ve met one person with autism, you’ve met one person with autism.