adults with autism
Overheard in the Wolfe House #75
Peggy: Next up is your taxes, Sam.
Sam: Yep.
Peggy: Maybe you should do your own this year.
Sam: You’re not going to do them?
Peggy: I’ll sit with you as you go through TurboTax. They make it pretty easy.
Sam: I guess I’ve got to keep growing up.
Family Can’t Do It All
Texas is going to shop in the social services departments for the $25 billion it needs to balance its budget, I’m banking on that.
Services for Sam and others like him in this state have always been poorly funded, and often pathetic in scope. Texas is just so stuck on this idea of picking yourself up by the bootstraps. Or, alternatively, making sure a family takes care of its own.
I’ve been guilty of that kind of shortcut thinking, because there is a grain of truth to it.
Yet, there are plenty of times that Sam needs a leg up and, as his mother, I am the absolute most wrong person to give it.
For example, his voyage into the work force — soon he is going to be underemployed, computer certificate in hand, but still sacking groceries at Albertsons. He’ll need help with the job search. The college’s placement center will be a resource, but he’s going to need some intense coaching for this part of the process. He had more than six months of support to get that job at Albertsons.
The job hunt is one of our most elaborate social rituals.
No place for your mom.
When Baby Birds Fly
Earlier this week, the boys and I drove to Plano. We checked the route to SMU in Plano.
(We did some other cool stuff, like eat a terrific lunch at Whiskey Cake Kitchen Cafe, and buy some shirting fabric to make Michael two more custom dress shirts … his mother is his secret tailor.)
But SMU in Plano is home to the place where Sam is hoping to do his internship this spring.
Some dedicated parents and professionals have started nonPareil.institute, a computer workgroup for young adults on the autism spectrum. Sam wants to volunteer as part of a practicum he needs to complete his computer technology certificate at North Central Texas College.
We’ve been taking this whole thing in baby steps. It has been extraordinarily difficult to find help in searching for an internship for him. First of all, state resources meant to help … major vacuum there.
The college isn’t quite yet set up to assist students like Sam in the search — in the past, they have had their hands full just managing and approving the opportunities students found for themselves. Hopefully, that will change as the program grows and matures at the Corinth and Flower Mound campuses.
Job fairs at nearby UNT? For UNT students only … no sharing. I suggest renegotiating boundaries there — just like they’ve done with scores of other resources college kids need to succeed.
A friend in the computer business heroically, graciously did a little bit of legwork for us, enough for us to understand that Sam couldn’t just walk into the door of a company and offer himself for a computer hardware tech internship. He would have to find out who the vendor was that provided the service and take it from there.
Holy cow. That seemed like asking someone to find out who brings the bagel cart every morning and then finding out if they’ll let him arrange the cream cheeses before the carts head out the door every morning.
I think. I don’t know. Computer tech isn’t my world. My world is “content creation.”
But, as luck and Divine Intervention would have it, someone caught a presentation by the nonPareil people at an autism conference and they passed the materials on to me. I shared with NCTC, an advisor at NCTC reached out, and finding the waters warm, on Tuesday, we drove there and walked around the building to get a vibe.
No people vibes, just driving and building vibes.
As I said, baby steps.
That was enough to get Sam pretty jazzed. He called the director and left a message. And applied for a tolltag.
That just about made me weep. I was girding myself for driving him there two times a week. But Sam says, “I can make that drive. I like this area. I could even get an apartment here.”
I reminded him that internships don’t pay, and the rent at Chez Wolfe can’t be beat. Especially at the SO NY Lofts at Tennyson and the Tollway.
Baby steps, son. Baby steps.
Road trip
I’ve been experimenting with leaving Sam on his own for a couple of days, just to see how he holds up. Dishes get washed, and animals get fed, house stays clean. He even went to the post office and picked up the mail and collected all the newspapers. This is good.
We shop before I go so that he can cook for himself, but he doesn’t. This time, I made a pile of sausage kolaches before I left. That was supposed to be breakfast. He just told me that was pretty much what he ate while we were gone — he made neither the spaghetti nor the pizza — both of which he’s made many times on his own for family meals.
When your toddler has autism, sometimes it’s hard to discern which is which. For example, was that temper tantrum the sign of something that needs to be addressed, or was it just your run-of-the-mill hissy fit?
I feel like I’m right back there again. Do I worry that this is a sign of self-help skills that need shoring up, or is he just being a bachelor?
Emotional IQ
Sam and I had the most amazing exchange this morning, one that belongs in some kind of magazine about how mature people should deal with powerful emotions.
First, you’ve got to set a stage for two people completely, utterly and totally misunderstanding each other. We’d both just gotten up — and neither of us are morning people. Plus, I had had only a sip or two of the morning joe, so that’s two strikes against me.
Sam was opening a vitamin jar to get a tablet out and suddenly it just flew from his hand and rolled on the floor. I didn’t see any of this. I just heard him yell “OH!” so loud adrenaline rushed to my nerve endings, so full and fast that it hurt my fingertips.
I thought my reaction was amazingly calm, considering. I turned around, puzzled that nothing seemed to be wrong, and said, “Don’t yell so loud in the house.”
That upset Sam terribly. He left the room.
A few minutes later, he told me that my comment made him feel like a little kid again and brought back bad childhood memories. That brought tears to my eyes. I tried to apologize for the comment, but Sam said we shouldn’t talk about it anymore, since it was about to make me cry.
I told him no, please, I welcomed the chance to say I’m sorry not only for hurting his feelings today, but also for any bad childhood memories and we could talk a little more if he wanted.
Sam said he remembered misbehaving, and it was in the past and it could stay in the past. I told him I thought that was very mature.
Then I said, you know, I didn’t know why you yelled so loud. I thought I needed to call 911 or something. He explained what happened, I told him I understood now why he yelled, and then he said he understood why I felt like I needed to say something about the yelling.
What Sam brought to the conversation that was so amazing was believing me when I said I loved him and never wanted to hurt him. That was part of my apology. I told him that it’s important to me to stick up for myself, and I’ve noticed that when someone sticks up for themselves, it can be hard to do without hurting the other person sometimes.
The whole conversation took all of 10 minutes and brought me such a sense of wonderment. I’m still trying to figure out where this supposed lack of social understanding comes from in people with autism. Sam is so clear-eyed and clear-headed. His father and I could not have had such a conversation early in our marriage. Even later in our marriage, it would take two hours to wade through all the emotional thicket to get to the same place.
I think it’s the opposite. I think the rest of us lack emotional intelligence. We play stupid mental games with each other, and we don’t trust each other.
When Sam doesn’t trust someone, he just doesn’t deal with them at all. How smart is that?
Any girl would be lucky to have him.
A better idea
Sometimes we look askance at parents who put their baby’s name on a waiting list for a prestigious preschool before they are even born.
As if the path to adult success is really that narrow.
Yet, if your child is born with a lifelong condition that will affect their ability to care for themselves, such as Down’s syndrome or autism, parents are encouraged to “guess” what services they might need later in life and put them on a waiting list for services. Those lists, in Texas, are DECADES long.
And recently, Texas created pilot projects for MORE waiting lists for services.
The whole thing is a farce.
Last weekend, at the Njoy Foundation conference, Resources for Parents, I learned about a statewide group that is trying to change the model for Texas. With a bad budget year, they have a mighty, uphill battle.
But it’s got to happen. Last year, 53 people died in state institutions of preventable causes, including one person at the Lubbock facility who was suffocated while being restrained. Of course, nearly every one knows about the notorious “fight clubs” organized by some of the staff at the Corpus Christi facility because one of them recorded the fights on a cellphone.
The Department of Justice has been monitoring Texas facilities for rampant civil rights violations.
To learn more about this group that’s promoting inclusive communities — which means the money follows the client rather than the other way around — visit their website: www.communitynowfreedom.com.
The “Empathy Deficit” fallacy
At the risk of falling to the theory of self-reference, I’ve always been skeptical that people with autism lack empathy. I’ve just never seen that deficit in Sam, nor in any other people with autism or Asperger’s that I’ve met.
I got to thinking about that after reading this piece in the Boston Globe, which goes to some length to describe how our kids apparently are lacking it.
Empathy, by definition, means some kind of emotional response to the pain or suffering of another. Babies and children don’t always demonstrate their empathy the way adults do — that’s part of our socialization — but they feel it just the same.
My guess is that some of us not on the spectrum look for empathy to be demonstrated in a tangible way. Then when we don’t see it, we say “a-ha, that person with autism lacks empathy.”
The Boston Globe article even spelled that out with a list of tasks an empathetic person is more likely to do. Most of them, I could imagine Sam doing, but not always for purely empathetic reasons.
For example, “return incorrect change to a cashier” could also be following the rules and keeping things correct.
The next two, “let someone else ahead of them in line” and “carry a stranger’s belongings” requires a person to break a social rule about getting into another person’s personal space. Sam does this all the time at Albertsons because he is a courtesy clerk and it’s expected of him. I’ve seen it generalize.
“Give money to a homeless person,” “volunteer,” “donate to a charity,” check, check and check. In fact, we talk about picking our charitable causes with purpose.
“Look after a friend’s pet or plant,” been there, done that.
“Live on a vegetarian die.” Sorry, we’re in Texas and he’s meat-eater. But butchering day comes with much reverence. We all know where our food comes from.
Sometimes I think we overreact to perceived deficits.
Sam doesn’t hug me. I don’t ask for it. Here’s why. The few times we do hug, there is so much human connection, I can almost feel the nuclear fission begin. Better not to disturb the universe like that.
Shoot the moon
Despite being institutionalized briefly as a toddler, autism’s first child, Donald Triplett, survived and thrived because his parents brought him back home to Forest, Miss.
From his school chums to his golfing buddies, Donald’s community accepts his strengths and helps protect him from people with dubious intentions.
It doesn’t just take a village. It takes a village with soul.
Forgotten stories of autism
The Atlantic has a fantastic story about Donald Triplett, the first person to be diagnosed with autism. The authors, John Donvan, perhaps more famously known as an ABC Nightline correspondent and Caren Zucker, a television producer and mother of a teen with autism, got the story as part of a collection they are working on for a new book.
The story shows us how Donald became to be diagnosed, what his early life was like, how he enjoys his twilight years — golfing, as any well-heeled gentleman might spend his retirement — and how he’s living as an accepted member of his hometown, Forest, Miss.
The authors sought out an expert in adults with autism to flesh out their story — kind of a rare breed. One thing that Peter Gerhardt, developer of an adolescence-to-adulthood program at the McCarton School, said, resonated with me:
“People want to treat these adults [with autism] like little kids in big bodies. They can’t. They’re adults.”
Here, here.
“It’s having friends It’s having interesting work. It’s having something you want. It’s all the things the rest of us value, once given an opportunity.”
Overheard in the Wolfe House #16
Peggy: So, Sam, how are your new classes going?
Sam: Pretty well.
Peggy: Are they all required classes?
Sam: No, just the personal hardware class. I’m taking Linux and animation for fun.