A REGULAR GUY : GROWING UP WITH AUTISM
The morning of May 22, 2006, I set my alarm for 4 a.m. I wanted to be the first one to wish Matthew a happy birthday. He was in a college program year at Camphill Soltane near Philadelphia. Matthew answered the house telephone on the first ring.
He knew I would call.
“Matthew!” I said. “You’re 20! Can you believe it?”
“Yes,” he responded flatly. “But Mom? I have something very important to ask you. I’ve been thinking about Amy. Can we go see her?”
Matthew had met Amy three years before during his first year at Camphill. Like Matthew, Amy has autism. The staff at the school had told us that they liked each other a lot and we were thrilled; since Matthew’s diagnosis years ago, we grieved at the thought of him living a solitary life.
By the time Matthew became interested in girls, he picked the “typically developing” ones—those who showed him even the slightest kindness, smiling at him in the hall at school or helping him as tutors in his special-education class, and he trailed them relentlessly. He would cry and sometimes yell at them if they told him to back off, and no amount of coaching helped. We were thrilled that the school community nurtured and supervised his friendship with Amy.
Amy’s parents were also excited about the budding relationship, and since they lived near the school, they were able to observe and support the autistic lovebirds.
“They are beautiful together,” said Katie, Amy’s mother. “They go for walks and talk, sometimes sitting on the garden bench. Amy doesn’t like to be touched and Matthew respects that.”
Contrary to popular belief, not all autistic people are averse to touch, and we were surprised that Matthew, who had been known to approach women of all ages and ask them if he could put his arm around them, or touch their hair, could restrain himself. I had shared this information with Katie and the school staff.
“So keep your eye on him!” I laughed nervously.
“Oh believe me, we do!” they reassured me.
Amy’s parents sent a picture of the young pair together, and they were a striking couple: Matthew, tall and blond with a wiry frame, broad shoulders, and brown eyes, and elfin Amy, short and slight, with long brown hair and pale blue eyes. The pair stand side by side, looking down and smiling slightly. “Amy doesn’t usually let anyone stand that close to her,” said Katie.
A few incidents in the course of the relationship kept us on edge, as when Amy refused to see Matthew for a week after he pushed her into a swimming pool fully clothed, and the time he followed her into the bathroom and locked the door.
“Did he do anything?” I asked the staff, my heart racing.
“No, he just watched her going to the bathroom.”
Whatever we are paying these people, it’s not enough.
While news of these missteps was unsettling, we felt fortunate that the staff remained calm. They used the episodes to teach Amy and Matthew appropriate rules of relationships. Everyone began to believe the relationship could last, and wouldn’t that be great?
But a few weeks before the end of the school year, Katie and Sam, Amy’s father, took the two out to lunch to celebrate Matthew’s birthday. Just as Matthew was opening a gift that Amy had picked out especially for him, he asked the group if they knew Katherine.
Katherine was a student-teacher-in-training who had been visiting the school for the last few weeks. I had heard that she was very attractive, and that Matthew was taken with her.
“She is probably better-looking than Amy,” he said. “I might like her better.”
As a person who would rather endure great pain than hurt anyone’s feelings, I was mortified when I heard about his comments. But Katie and Sam found them amusing and said that Amy didn’t take them personally. I didn’t want to ask whether they thought that Matthew was dumping Amy.
“If we could all be more straightforward, the world would be a better place!” they said, but I was more in favor of polite avoidance and gracious reserve. Unfortunately, Matthew will never be subtle. His brain is wired for brutal honesty.
Peter and I flew back a few weeks later to pick up Matthew for the summer break, and we asked him if we could meet Amy.
“I’ve moved on,” he said, “and we’re not going to talk about it anymore.” Katie and Sam stopped by to meet us in person, for by now we had already forged a strong connection, having commiserated long-distance about the road behind and ahead. We had laughed about our kids’ similar eccentricities and wondered how we could help them connect in a meaningful way.
Though Matthew and Amy parted for the summer dispassionately, we hoped that their friendship could be rekindled in the fall. But the following October, when I asked Matthew about Amy, he reminded me that he had moved on.
“Besides,” he said, “she got a haircut, and I don’t like it.”
In the year since Matthew had last seen Amy, who was now attending a Camphill School in New York, he had complained that there were not enough nice girls around, and that he was lonely. He asked me if I thought, perhaps, that Amy might be lonely, too.
I called Katie and told her about Matthew’s request, and suggested that perhaps we could arrange a visit over Memorial Day weekend. She agreed right away. Maybe we could have lunch at their home in Connecticut, and then go bowling and for a hike! I felt like such a good mother going the extra mile to help my lonely son.
Matthew and I drove from Philadelphia to Connecticut and spent the night with family before meeting with Amy and her parents.
“What will we do at Amy’s?” Matthew asked.
“We thought it would be nice to visit for a while at their house,” I said, “and then go out to lunch. Maybe we can go bowling.”
“No bowling,” he said. “When we get to Amy’s, all of the grown-ups will talk outside, and Amy and I will go in the house and sort things out.”
Sort things out?!
“What do you mean, sort things out?” I asked.
“I want to be alone with Amy in her room with the door shut,” he responded.
“But what if Amy doesn’t want to be alone with you, and what if her parents don’t want you to be alone with her?” I asked, all at once feeling like I was headed for a trap.
“I’ll tell them that I’m no one to be messed with,” he said, “and we aren’t going to talk about it anymore.”
It became clear to me that while I was making plans that you might see on a made-for-television movie, Matthew was making plans of his own.
After a brief discussion that escalated into a shouting match, I let the subject drop and called Katie with an SOS before we went for our visit the next morning. The two of us laughed uneasily about Matthew’s plan, but decided it would be best to go ahead with the visit.
“We’ll just have to be firm,” said Katie.
But the next morning, when we arrived at Amy’s house nestled next to a pond at the end of a lovely green country lane, there was no walking and talking and standing side by side with slight smiles. Amy, looking adorable in white capri jeans, tank top, and high-heeled sandals, was a bowling pin, and Matthew was the ball, with overwhelming momentum. After the initial greeting where we all told each other how great we looked, Katie suggested that we sit down and catch up.
“Listen,” Matthew responded, “I’m the boss today, and I say that Amy needs to be all alone with me in her room.”
“But I don’t want to be alone with him,” Amy whispered to her mom. “He’s too bossy.”
“Matthew,” Katie said calmly, “we are so glad you could visit. But Amy would be more comfortable if we all hang out together.”
“No way!” yelled Matthew. “I’ve been thinking about Amy for a long time! I even dream about her when I’m sleeping, and I want to be alone with her!”
God help me.
“What you are saying then, Matthew, is that you don’t care about what Amy wants,” Katie said, locking eyes with Matthew. “It’s only important what you want.”
“That’s right!” said Matthew triumphantly, like a game-show host moving a contestant to the championship round.
Sam, Katie, and I, all experts in managing autistic meltdowns, gave this visit our best shot and tried all of our tricks, but it was no use. When Matthew made plans, he was determined—obsessed—to see them through, and of course we weren’t going to let him have his way.
“Let’s go out to lunch now!” I said, desperate to move things along. It was only 10:30.
We all piled into the family’s minivan, Matthew leaning close to Amy, and Amy leaning away from him, muttering, “He’s bothering me. I don’t like it.”
During lunch, where Matthew ordered pizza and 21 french fries, Sam, Katie, and I tried to reduce the tension with cordial conversation.
“Matthew, tell everyone where you are going this summer,” I said cheerfully.
“I’m not in the mood,” he replied. “Let’s go back to Amy’s.”
“Matthew,” Sam said, trying to change the subject, “guess where Amy is going this summer?”
“I give up,” said Matthew, “and I’m tired of all this talking.”
Once back at the house, Matthew announced that he would like to stay a little longer, and then come back the next day, but Sam, Katie, and I, who all looked like we had aged ten years in the last few hours, blurted out reasons why it was time to end our visit—now. Somehow I managed to get Matthew back into the rental car, and we drove away. Matthew burst into tears, and when we got to the main road, I pulled over and hugged him.
“They wanted me to stay,” he said, “but I’m too busy.”
“That’s right, Matthew,” I said, patting his back. “You’re a busy guy.”
The next morning, I called Katie and thanked her, and said wow, wasn’t that exhausting. She said yes it was, and did I know that Matthew had asked Amy if they could lie down in the grass and do sex.
“Oh, Katie,” I gasped.
“She said she didn’t want to lie down in the grass because she didn’t want to get her clothes dirty and I’m not sure if she even understood what Matthew was wanting. She’s still pretty naive.”
“Oh, Katie,” I repeated, “I am so sorry. Thank you for telling me. Thank you for being so honest.”
“And we thought it was difficult when they were young,” Katie sighed.
When Matthew was in eighth grade, a psychologist who specialized in teaching adolescents with special needs about sex visited his class. A handful of parents, including me, looked on from the back of the room as she stood in front of the class with the most impressive poker face and peeled the clothes off of a man doll and a woman doll. The dolls shared her ridiculous poker face as she fit their parts together.
“Oh, my God,” Matthew mumbled in disgust , as parents stifled laughter. I was transported back to the day that I sat in the auditorium of Havens elementary school, slides of male and female reproductive organs flashing on the pull down screen in front of Mrs. Stewart’s 6th grade class. Pamela Abernathy fainted and fell back in her chair and my friends and I giggled reassured each other that our parents had only done that when they wanted to have babies. I wondered how Matthew was processing this information.
How could I be sure that he understood the basics of sexuality (including the urges??)
“If we’re not pre-teaching kids with autism going to middle school,” say’s Peter Gehrhardt, an expert in adults with autism and the Director of the Organization for Autism Research , “they’ll get a very skewed vision of human sexuality”. Peter spoke at the recent Morgan Center Autism Conference. A podcast from his talk will soon be available and I will post it here.
Some tips from a past interview with Lisa Jo Rudy:
Think ahead – be proactive (“pre-teach”)
- Be concrete (talk about the penis or vagina, not the birds and bees)
- Be consistent and repetitive about sexual safety
- Find someone of the same gender to teach the basics of safety and hygiene
- Be sure to address the social dimension of sexuality
- Strongly reinforce for all appropriate behavior
- Redirect inappropriate behaviors. (such as masturbation.)
Meanwhile, back in Connecticut…
I decided to call Matthew’s primary caregiver, David Schwartz at Camphill, who had helped guide Matthew with his relationship with Amy from the beginning. He had a way of explaining things simply and frankly. Matthew had great respect for David and turned to him when he was upset, confused, or simply needed to work something out.
“I’ll talk with him as soon as he gets back,” said David. “I’ll call you and tell you how it goes.”
“What did you say? What did he say? Did you get through to him? Should I talk to him?”
David told me that he asked Matthew to tell him about his weekend. “How did it go? How is Amy doing?” he had asked.
“Amy looked nice, but the grown-ups wouldn’t let us go in Amy’s room and shut the door.”
“Did Amy want to go in her room with you and shut the door?”
“Not really. So we went outside and the parents kept watching us.”
“Did Amy want to be alone with you outside?”
“I’m not sure.”
“Did you touch Amy?”
“I wanted to. I wanted her to lie down on the grass so we could do sex.”
“Have you ever had sex with anyone else?”
David told Matthew what he had heard many times before—but none of it had made sense until today.
“Sex is part of a loving relationship. Both people have to agree to have sex, or it is out of the question. If you have sex, the woman can get pregnant and have a baby. Do you understand?”
“Are you ready to be a dad?”
“No way. I decided I’m not going to do sex with a girl after all.”
David reassured Matthew that it was normal for a man his age to want sex, but that there were other ways to satisfy those urges.
“Did you tell him how to masturbate?” I asked, blushing through the telephone.
“Believe me, Laura,” David said. “He’s already an old pro at that.”
He told him that in a few years, when Matthew was older and more mature, he might be able to have a relationship.
“The business of sex and relationships is complicated for all of us,” said David. “Matthew needs everyone to support him through this. Just keep it simple, be honest.”
I thanked David profusely, and he said you’re welcome, “but I’d better get going,” he joked. “I’ve got to keep my eye on Romeo!”
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