1. Worrying about the future. What will happen when I’m gone?  The BIGGEST worry by far. Many stories on the topic HERE. Just scroll away.
2. Handling Meltdowns/Aggression
3. Best and most effective treatment?
4. Feeding Problems/ Sleeping
5. Helping my child make friends/Social Skills
6. What about the siblings?
7. Toilet Training
8. Transition to adulthood/ Puberty /Dating
9. Finding a time for myself/ finding helpers
10. Training for teachers

What are your concerns? Let’s help each other!

We got worries

An Excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

That evening, Peter and I sat at the dining room table with a dictionary, a stack of encyclopedias, and an old college textbook on child development. It was time to do a little research.

“Echolalia: ech·o·la·li·a (?k’?-l?‘l?-?) 1. Psychiatry The immediate and involuntary repetition of words or phrases just spoken by others, often a symptom of autism.”

Autism?

I flipped open my World Book encyclopedia to autism, my heart pounding, and read out loud to Peter.

“A rare, severe developmental disorder that begins before four years of age. The condition appears as a group of symptoms, the most notable of which is the inability to relate socially to other people. True autism occurs in one child in every 700. Boys are more commonly affected than girls. There is no known cure for the condition. The term autistic or autistic like is sometimes used to describe people with severe emotional problems that resemble autism.”

There was more, but I couldn’t read it.

“Don’t worry, Laura,” said Peter, squeezing my hand. “This is just worst-case scenario stuff. There is no way Matthew is Pervasiveautistic.”

I had first heard the word “autism” when my sixth-grade class went to visit Agnews Developmental Center in Santa Clara, California, where children our age lived because they were emotionally disturbed, mentally ill, or developmentally disabled. I’m sure that the reason for the field trip was to educate us and infuse us with compassion, but instead the trip had a freak-show, haunted-house atmosphere. Students stared and pointed, and teachers seemed unsure, frightened.

During the tour I noticed a tall, handsome boy with a brown bowl haircut rocking in a doorway, mumbling quietly to himself and waving his fingers. He had high cheekbones and clear blue eyes, and he looked a little older than my twelve years, though it was hard to tell because his face was void of expression. It was spooky.

“He’s so handsome,” I whispered to the tour guide, “but it’s like he’s looking at me but not seeing me. What’s wrong with him?”

“He’s autistic,” she said. “People with autism are locked in their own world. They have no emotions, and they don’t like to be touched.”

I overheard one of the mothers who helped supervise the field trip whisper to another, “I hear it’s because they have refrigerator mothers—you know, those women who can’t love their children.”

That would never be me.

Years later, in 1988, the movie Rain Man was released, when Matthew was one and a half. In the movie Dustin Hoffman plays Raymond, a severely autistic man, obsessed with routine, who rocks and screams when his schedule is disrupted. He has difficulty making eye contact and mumbles amazing facts and figures that have no practical value. The character became the definition of autism, and everyone was talking about it when it first came out.

“Isn’t it amazing that autistic people are so brilliant with facts and numbers,” people would say, “but so limited otherwise, and so odd.”

Few understood that autism was a wide spectrum disorder, and that not all autistic people are alike. So when Peter and I met with the child psychologist who did testing for a consultation, even before we were seated, I blurted out that two professionals had used the word echolalia.

“Does that mean he’s autistic?” I asked.

“Echolalia is only one symptom of autism. A person with echolalia alone is not necessarily autistic.”

“Well, that’s a relief!” I said with a sigh.

“We’ve been a couple of wrecks,” Peter said, taking my hand. “It’s so hard not to jump to conclusions!”

Dr. Davies, a stoic English woman in her sixties, gave us no indication that it was time to celebrate as she looked over the speech therapist’s report. She asked us about pregnancy and birth (normal, normal) and asked us to list the ages of achievement of important milestones. I rattled them off like a contestant on a quiz show.

“I think she’s sugarcoating them a little,” Peter said, and I blushed.

“Oh, that’s what we mothers do,” said Dr. Davies with a slight smile, her eyes connecting briefly with mine. She understood.

Dr. Davies explained that she would use the results from two different tests, the Stanford-Binet Intelligence Scale (SB) and the Bayley Scales of Infant Development (BSID), to get the best reading of Matthew’s stage of development. The results would also highlight the areas where Matthew could use remediation.

The testing was done over a two-day period, and each day, Matthew clung to me for a few minutes before allowing Dr. Davies to take his hand and lead him into her office.

“No refrigerator mother here!” I laughed nervously, wiping tears away as I turned over my boy for this clinical evaluation.

“We’ll be about 45 minutes,” she said with that slight sympathetic smile.

Peter and I met Dr. Davies a final time to go over the test results.

“He is not retarded, and he is not autistic,” she proclaimed. “His most obvious problem is that he has a serious language delay, but he also seems to have an overall cognitive delay. But this is secondary to his language delay, and no final diagnosis can be made until he works with a speech and language therapist.”

“So do you think that once he gets speech therapy, the cognitive part will come up?” I asked hopefully. “Do you think this is something he can overcome?”

Peter gave me a “don’t put words in her mouth” look.

“I don’t have a crystal ball. But extensive work with a speech and language therapist, and placement in a remedial preschool, is crucial.”

“I heard that you don’t see children beyond evaluation, but do you think he would benefit from seeing someone else?” I asked. “We have a family friend, Brian Hoffman, who has offered to see him. Do you know him?”

“Yes, Dr. Hoffman is wonderful,” she said, “but there are many in this area who treat children with developmental disabilities as well.”

Dr. Davies handed me a sheet with diagnostic information for our insurance and wished us luck.

Did she say disability? What happened to delay?

“My grandson Joey is three years old and he’s not talking and he doesn’t sleep. My daughter in law has had to pick him up from pre-school at least once a week because he has tantrums and is nearly impossible to soothe. He never plays with other children and I think he has autism, but my son says there is nothing wrong. I think he’s in denial. What should I do?”

Whether you have a friend or family member that you think has autism or something like it, you may be wrong, and even if you are right,you can’t force people to get help if they don’t think they need it.

There is a way, however, to start a conversation. Here is an example:

“You are doing such a great job raising Joey; I admire you so much. I know you’ve been struggling with his tantrums and his sleep and I’m worried about the toll it’s taking on you you. What can I do to help?”

This caring and non-threatening approach usually opens up an honest dialogue, but resist the compulsion to say “I think he has X” or “if he were my child, I’d do Y”. Instead, try this:

“I know you are doing your best. If you are worried, you owe to yourself to get some help with all of this. Even if it’s nothing, there is no downside to having Joey checked out. You’ll feel so much better knowing you’ve done all that you can.”

Then feel free to pass Joey’s mom to me.

I can point her in the right direction.

_____

Laura Shumaker is the author of A REGULAR GUY: GROWING UP WITH AUTISM

She is also a PROUD contributor to the THE THINKING PERSONS GUIDE TO AUTISM

Read Laura’s popular San Francisco Chronicle Autism Blog HERE.

Bingo.

Have you ever seen anyone playing with a Hula Hoop without laughing?

The following is the list of tried, true and affordable holiday gifts that kids of all ages and abilities will love:

1) A Hula Hoop

2) A Bulletin Board.

You can make one yourself with supplies from the hardware store. I am not a very arts and crafty kind of person, but I am a market type. When you give a child a bulletin board, it’s all about the presentation. Tack (or I guess glue dots are safer) a few things on the board first to make it look cool. After all of the holiday craziness has subsided, get out a stack of old magazines and have your kids cut out words and pictures to put on their  very own Bulletin Board.

My 19 year old son's bulletin board

3) White paper and watercolors.

Here again, it is all about presentation. Set the water colors and paper on a table with brushers, cups of water and paper towels for spills. My parents gave me this gift at least 5 times, and they would put out a flower arrangement for me to paint still-life style. I think I’ll ask my kids for this for Christmas.

4) A rubber playground ball and some chalk for Four Square or Kick Ball. You’re going to have to sell this a little by running outside a showing your kids how YOU used to play these games.

5) A Bongo Balance Board. This is the most expensive item on my list a t around 80 bucks HOWEVER, it’s the kind of thing that the kids play with for a while and once they get to be good at it, they lose interest. Put it away and get it out in a few years, and everyone is excited about it again. Our Bongo Board has been rewrapped 4 times and it’s always a huge hit. (Maybe I’ll challenge my sons to use the Bongo Board while they are using the hula hoop.)

So if you haven’t started shopping, or you are too broke to shop, or if you don’t need to shop but can’t help yourself,  remember:

a) A holiday gift does not have to cost a lot to be a big hit

b) Holiday gifts that get kids up and moving are ALWAYS a big hit

c) You might have just the right gift up in the attic–you know, the Yamaha Keyboard, the Karaoke, Machine,  the Autoharp. Get them out, shine them up and wrap them up!

Happy Holidays

xoxoLaura

__________

If you haven’t read Laura’s book yet, you should. You can find it at your local library, or order it HERE. 

Matthew wanted a drain. He was fascinated with water going down the drain, and wanted one of his very own.

Since I was still at the stage where I believed i could “fix” my son, I discounted his drain request and searched for educational toys that would “flip the switch” in his brain–Lincoln logs, painting sets, books AND a Nerf Bow and Arrow just like Andy’s. None of them interested him, and then later, we went to my brother’s house for dinner. His daughters had gotten one of those freestanding miniature kitchens with pots, pans, plastic food–and a sink with a drain.

I went out the next day and got one just like it.

The holiday season is full of hopes, dreams, and disappointment for parents of children with special needs. Here are 8 things to remember as we stumble into December:

1) Don’t go too crazy on the decorations. They are fun and festive but provide serious sensory overload for your child.

2) Don’t go too crazy on the shopping, and keep receipts. Is it just me, or is it one toy that everyone wants to play with, and the rest just sit there?

3) Is it just me, or are BIG building blocks the best gift ever?(THIS new study concurs.)

4) Take two cars to holiday parties when the whole family is invited.

You get the picture.

5) If you really want to go to a grown-up holiday party, get helpers way in advance. *

6) Resist the temptation to go out and buy more stuff the day before Christmas. You have enough.

7) Brace yourself for meltdowns.Diffuse them as quickly and as calmly as possible.

REMEMBER the meaning of the holiday.

Laura Shumaker is the author of A REGULAR GUY: GROWING UP WITH AUTISM, which by the way, is an ideal holiday gift. Order it HERE.

a)  Cringe at the thought of trying to explain things in a comprehensible way

b) Wonder if sex will ever be an issue (Spoiler alert. It will.)

c)  Worry about your child’s safety

d) Wish there was more information and research on all of the above.

Today, I’m profiling  Leonard Magnani, MD, PhD, an expert in the field of educating individuals with disabilities about sexuality.  He’s one of the presenters at UCSF’s 11th Annual Developmental Disability Conference March8-9 in San Francisco.
Dr. Magnani is a  Family Practitioner and Medical Director at the Alta Regional Center.

__________

Q: It seems that there are fewer women than men with developmental disabilities. In my 25 year old son’s day program alone there are zero women (and he is not happy!) Have you heard this complaint from your male patients?

A: For some developmental disabilities, like Autism Spectrum Disorders, there are more males impacted.  However, world wide studies show that more women have developmental disabilities than do men.  Women in all countries receive less services, in part because they and their caregivers are less aggressive in speaking out, and in part because they are more socially sheltered even in progressive, Western countries.  In studies of status, a young girl or women with a developmental disability, few financial resources, and minority group ethnicity, is ranked lowest on the list.

Q. I know that many parents of individuals with autism are afraid to talk about sex for fear that their children will obsess about the topic. How would you respond to that fear?

A. When talking about sex and developmental disabilities, I sometimes show a slide with a pink elephant in the living room.  Underneath I ask, “What elephant?”  No one wants to confront the fact that we are up against human evolution and physiology.  This is analogous to grief reactions:  some caregivers wishfully think, “Out of sight, out of mind,” and remove all pictures of the person who is no longer with us.  The fact is that almost all of mind, all of thinking, is unconscious.  It may take weeks or months, but the brain will react to the absence of familiar eyes, a well-worn voice or a special person’s reassuring touch.  Grief is a physiological reaction and the mind and body do best when there is continual story telling and remembrance of the departed.   Sexuality is also, of course, physiological; the body and mind will react to sexual yet unconscious thoughts, feelings and sensations whether or not it’s “out of sight.”  Boys more than girls will discuss sexual issues with their peers, and the society at large is filled with provocative images.  Talking about sex in a systematic and thoughtful way prevents acting out and other unhealthy behaviors, just like talking about grief leads to healthier outcomes.  Furthermore, in the case of sexuality, the strongest defense against sexual abuse is sex education.

Q. Are individuals with developmental disabilities having sex?

A. What we are dealing with is one of our species strongest drives.  There are books co-authored by individuals with intellectual disabilities, and written by people diagnosed with an ASD or cerebral palsy, that discuss their interest in relationships, including dating and sexual relationships, and the problems they’ve encountered and overcome.

Q.  What about birth control?

A. Birth control in most instances is a key part of sex education, whether the caregiver’s emphasis is technological (for example, pills and physical barriers to conception), or philosophical or religious (i.e., the promotion of life-long abstinence).   In recent years, the rights of individuals with developmental disabilities are finally coming to light.  Forced sterilization of men with a diagnosis of Down Syndrome no longer receive popular support.  Nevertheless, there is great variation State-to-State concerning how easy or difficult it is for a legal guardian to obtain forced sterilization of an adult with a developmental disability.

Q.  How early should parents talk about sex?

A. Sex is much more than intercourse, and we all know that.  If we define it as any kind of physical contact with a non-family member friend, like holding hands or kisses on the cheek with a special friend, then the earlier the better.  The “Good Touch-Bad Touch” and the “Circles” educational formats have learning guides for preschool and kindergarten children.   Teaching a child that it’s okay to hug Uncle Harry but it’s not okay to hug the Postman that way, is sex education.

Q.  The best way to talk about sex?

A. That’s the meat of the issue.  The best advice is to not try and reinvent the wheel.  There are many good programs that have workbooks, DVD’s and other teaching aides for parents and professional educators.   In March, at the Developmental Disabilities Conference in San Francisco, I’ll discuss this in more detail.

Q.  How can parents and caretakers supervise/facilitate relationships with the opposite sex?

A. A key behavior modification principal is to be proactive and to limit the antecedent conditions that produce undesirable outcomes.   Knowing where your child is and who they are with and who the parents are of those they are with, is the bedrock of adolescent and teen parenting.  Finding and working to develop peer social groups are difficult tasks but readily doable.

Q.  It seems that there  is very little literature or research out there as to how to teach people with autism how to behave appropriately in terms of their own bodies and other people’s as well. Why?

A. Times are changing and the large population of children diagnosed with an ASD in the past 15 years are now becoming young adults.  There are now books, group simulations and social stories designed to help people with autism develop the behavioral patterns that foist healthy relationships.  A difficulty faced by those with an ASD (that isn’t encountered by some others with a developmental disability) is the inability to recognize subtle facial expressions, body posturing or gestures.  Most communication is nonverbal, and this is so very true for friendships and relationships.  It’s a challenge, to say the least.  But again, there is a literature and proven expert guidance, so no parent has to go it alone.

Q. Our children/teens/adults are vulnerable. How can we make sure that they are not being abused sexually? How do we keep them safe?

A.We have to monitor the monitors.  Caregiver abuse is more common than we want to admit, as evidenced by the past admissions of the Catholic Church, and by the current University scandals.  The best defense is sex education throughout a child’s life.  The worse thing to do is to begin education after an abuse, sending the message that the child did not do the right thing.  There is only one strategy following abuse, support the victim as much as possible (and expose and punish the perpetrator).

Q.  What do you think is the most common misconception that people have about sexuality and the developmentally disabled?

A.Those with a diagnosed developmental disability tell us all the time:  their sexuality and sexual needs are no different than those of the general population, but no on seems to listen.

Dr. Magnani has much, much more information about this crucial topic and will share it at the conference.

Register now! (HERE)

To learn more about the conference, CLICK HERE.

More on coming of age info in the Autism Speaks Transition Toolkit.

Excerpt from:

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?”

“Probably not.”

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?”

“Yes.”

“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!”

***

Click HERE to order A REGULAR GUY: GROWING UP WITH AUTISM

An excerpt from A Regular Guy: Growing Up With Autism

Peter and I left with Matthew before sunlight hit the lake in New Hampshire, where we’d been on vacation. Out two younger sons, Andy and John, stayed behind with Peter’s family, who were vacationing with us. We had a six-hour drive ahead of us—our destination, Camphill Special School at Beaver Run, Pennsylvania.

Driving with Matthew had always been difficult. He demanded silence—no radio, no conversation; even a cough or a sneeze would set him off. He said he needed silence because he was “knowing something” and didn’t want his thoughts to be interrupted. Today’s drive was heartbreaking, as Matthew alternated between tears and desperate conversations. . . with himself.

“We’re just looking at this school, Matthew, you don’t have to go there. I know! Besides, they actually think you’re a good kid at home. They will surely take you back.”

Hearing his mutterings, I wanted desperately to soothe his anguish, but I couldn’t. It was clear that school and life in our community were not working for him, and he sensed that. Still, he wanted so badly to fit in. And here he was, three thousand miles from where he imagined he belonged, feeling rejected and abandoned, longing for a life he could never have.

Everything rode on this visit. The school had a spot for Matthew based on the application and the information that Amy Preston had supplied, but a visit would determine whether Camphill and Matthew were right for each other. It was June, and Camphill was both our favorite and our only decent choice.

As we followed the road leading to Camphill, Matthew began to look at his surroundings with interest. It was beautiful. Camphill is in rural Chester County, which borders Lancaster County and the Amish Country. The rolling green landscape featured farmhouses and ponds with bales of hay dotting the fields.

We crossed a narrow bridge over a rocky creek, and saw a sign: “Camphill Special School—A Children’s Village.”

A short distance down the wooded driveway, a clearing revealed the first building in the village—a large stone house with blue and white flowers cascading from window boxes. When we got out of the car, a cat that had been napping on the sunny porch rose to rub against my leg. The door of the house was opened, and we were greeted by the smell of fresh paint. We stepped bravely through the door and found ourselves in a sunny room with several pairs of shoes lined up along the wall. There was a large kitchen through an arched doorway where two young men were busy rolling paint on the ceiling, laughing as they worked. “What’s going on here?” Matthew moaned loudly.

The young men, startled by Matthew’s wailing, burst into laughter.

“What’s so funny?” Matthew yelled.

“Nothing, nothing, you just scared us!” they laughed. “Can we help you?” Both young men spoke with an accent.

They were Christophe and Daniel. They told us they were students from Germany who were taking a few years off to work at Camphill. Christophe had already worked in the community a year, and Daniel had just started the previous week.

“It is hard work,” Christophe said proudly, “but I love it.”

“Speaking of hard work,” I said, glancing at Matthew, who was seething, “we’d better get going.”

“I’ll be right there,” Peter said.

I waited on the sunny porch with my poor tortured son as Peter quickly toured the rest of the house. He joined us a few minutes later, looking exhilarated.

While we waited to meet with the admissions director, we wandered up the road to get a look at the place we had heard so much about, with Matthew growling in protest behind us. We could see five large, attractive redwood homes up the hill, scattered in the midst of wooded pastures with horses and chickens meandering about.

The admissions director, Bernie, found us as we were luring Matthew up to the barn. He looked like an aging hippie, with his worn flannel shirt, Birkenstocks, and scruffy beard. His calm and gentle manner stood in stark contrast to Matthew’s contrary bearing and our own frantic attempts to assure Bernie that Matthew was actually thrilled to be here, but was tired from the long drive.

As we began our tour, Bernie tried to lighten things up by pointing out a fat little toad to Matthew, who promptly stomped on it and fell into a heap, crying.

It was not the typical impulsive move that said, “I’m trying to connect with you.”

Peter and I were mortified. I looked warily at Bernie, searching for reassurance. What was that expression on his face? Horror? Compassion? Was he wondering how he could get rid of us? I thought, he must be used to impulsive behavior, but clearly this murderous outburst had not been a good icebreaker. I decided that now was not the best time to mention that Matthew was not particularly fond of animals.

“This place is weird! Can we just go home? I’m sure they’ll take me back! I promise I’ll be a good kid!”

My chest tightened with anxiety. “Matthew, you are already a great kid. Some people at home just had a hard time understanding that!” I had used this reassurance with him before, and his chin trembled in appreciation today as it had before.

As we continued on the tour, Matthew lagged behind, and Bernie shared his concern that if Matthew didn’t want to be here, perhaps we shouldn’t force him. While we did our best to convince Bernie that there was nowhere else in the world but here, and please, please, he’ll get used to it, we saw Bernie smile and nod in Matthew’s direction. Our first moment of Camphill magic was in the works.

Ten yards down the hill from where we were begging, Matthew stood mesmerized as a man riding a John Deere tractor mowed the pasture while two young men carried bales of hay and piled them next to the barn. One appeared to have severe cerebral palsy, even worse than Uncle Russell, and the other looked stoic and repeated the phrase “I’m sorry, Joe” over and over. I had worried how Matthew, who thought of himself as a regular guy, would feel in the company of young men like these who were severely disabled.

“We are a community with diverse abilities that work well together,” pointed out Bernie. “It’s hard for parents to see that at first, but it is a philosophy that we impress on the students from the beginning.”

The man on the tractor jumped down and handed Matthew a fistful of grass and invited him to feed a horse that was ambling by. Matthew acquiesced, but the moment he saw that we were watching, the magic fizzled, and he sulked loudly and dramatically. Peter coaxed Matthew to join us up the hill to meet Matthew’s prospective teacher, Guy.

“You must be the Shumakers!” said a short, athletic-looking blond man with glasses, a British accent, and a huge smile. He wore cargo shorts, a T-shirt, and hiking boots. He stuck his hand out to shake mine and saw me roll my eyes and gesture to Matthew, who was sitting on the dirt path behind us, looking disgruntled. Guy let out a huge belly laugh and the reassurance that I was looking for earlier enveloped me.

“Having a little trouble, are we?” Guy said, his eyes dancing. I could tell that he was the kind of person who drew out the best in everyone.

“Let’s get out of here!” Matthew wailed. “It looks bad!”

“I know how you feel, chap!” Guy chuckled, while he studied our weary faces.

Matthew glared at him dramatically and looked down at the dirt path again.

“Good luck!” said Bernie, making his way back toward the carcass of the dead toad.  “Come on by the office on the way out.”

Was this a good sign or a bad sign?

Peter and I were tormented by the prospect of this dream slipping away, brutally sabotaged by the very person who stood to gain so much from it. Guy could sense that. He waved us forward to a spot where we could keep our eye on Matthew but talk without being heard. He told us he wasn’t worried about Matthew’s contrary behavior—it was to be expected. Peter and I looked at each other and sighed with relief.

“What do you want for your son?” Guy asked us.

We told Guy our story—from the early days of innocence through the highs and lows of special education to Matthew’s recent troubles at school and in the community. We told him about our family and of our struggle to raise Matthew while meeting the needs of our other two boys. I told him that I feared for Matthew’s safety in our community and that I knew Matthew felt pushed aside by his former school and by the kids he imagined to be his friends. Guy listened intently, glancing intermittently at Matthew, still sitting in the dirt—a lost fifteen-year-old with few choices.

“I’ve seen a lot of kids like Matthew,” said Guy, “and believe me, we have just the right program for him. We can really make a difference.” There was such passion and conviction in his response that Peter and I were overwhelmed with emotion and gratitude. Here was someone who was willing to take on a tremendous challenge and yet who acted as if we were giving him a gift.

“It will be a privilege to work with your son,” Guy continued confidently.

Guy explained that Matthew would be in a class with eight other students, mostly boys, and told us about a few of his prospective classmates. The students had a range of disabilities, but two of them, both boys, were also autistic and functioning on a level similar to Matthew’s. Class was between 8:30 and noon, and afternoons were spent working on the land and in other vocational training activities.

“As you know, we use the Waldorf curriculum. We’ll start with a unit on Greek mythology, and follow that with a unit on space. Math and reading are incorporated into each day’s work.”

My head was spinning. How in the heck does he do it? I could tell by his confident manner that this man finds a way.

“And explain to us again,” I asked. “What is the living situation like?”

“I’ll use my house as an example. Ani and I are the householders, and we live here with our two boys. Eight students live in the home with us, as do co-workers, as many as one for each student, depending on the nature of the students’ disabilities. The students do their own laundry, help with cooking and other household chores. We always manage just fine,” he said with a smile.

“If Matthew is accepted, will he live in your house?” Peter asked.

“No, Matthew will live in a house with students his age. We like the students to live with their peer group. But I look forward to teaching him.”

Was this a done deal? He makes it sound like a done deal.

Guy took us on a tour of his house, which was the largest at Beaver Run.

For the first time since Matthew was diagnosed, I felt the sheer joy of finally having a promising path to follow and a solid reason for hope.

The rest of our visit to Camphill was a blur. I remember that Peter and I were shaking with excitement and relief, and that Matthew calmed down and admitted that he liked the school, countering quickly with “if I needed a new school, but since I don’t—” We hadn’t expected him to sign on right away. At least this was something.

“Why don’t you go on to the office and talk with Bernie?” Guy suggested. “Matthew and I will be fine.” He followed Matthew, who had wandered down to the field that had captivated him earlier.

“I think he’s in!” I said, as we walked anxiously toward the office covered with goose bumps.

“Well, what do you think?” said Bernie.

“What do we think?” Peter asked nervously. “It’s what you think that we’re worried about.”

“Well, we have a spot for Matthew. Are you interested?” he asked with a broad grin. “Let me give you some paperwork.”

Peter and I floated back up the hill and found Matthew and Guy sitting on the front porch drinking lemonade.

“I like this place,” said Matthew, “but I’m not going here.”

Oh, yes you are.

“Well, I sure hope you change your mind,” said Guy, smiling.

“I might” was Matthew’s response. We thanked Guy enthusiastically and were on our way.

As we drove away from Camphill, elated, I realized that I would soon be able to answer the questions that had been haunting me for so many years.

“Where will he live? What will he do?”

He’ll live and learn at Camphill Special School. That will be the beginning of his road into adulthood.

Matthew has autism and lives at Camphill  California, a community for individuals with intellectual disabilities.  I was picking him for his routine first-weekend -of –the-month visit home an hour north near San Francisco. The weekend routine included a dance at our church for disabled young adults and a series of gardening jobs for neighbors and friends prearranged by Matthew himself.

When Matthew climbed into the car for our drive home, he launched into his usual tedious discussion about the origins of the song “Pretty Woman”.

“Who did Roy Orbison write it about? Why did Van Halen also sing the song? Was Eddie Van Halen singing it about Valerie Bertinelli? Did Roy Orbison ever get to meet David Lee Roth? Was David Lee Roth sad when Roy Orbison died?

It is a draining conversation to maintain, but I manage to respond with feigned interest.  So many of my friends have children who are non-verbal; they would give anything  to have the kind of interaction I have with Matthew.

After our Roy Orbison discussion played itself out, Matthew exclaimed that he couldn’t wait for the Super Bowl.

“I didn’t know you were a football fan”.

“All men are football fans,” said Matthew with a sly grin, “and they all go to Super Bowl parties.”

I felt completely unprepared for this change in the schedule, one that I knew might be hard to rig. My husband and y two younger sons were away on a ski-trip, and it’s never easy to find and invite oneself to a party with little notice.

“I can invite some people over for the game,” I suggested.

“I want to go to a party at a different house and I don’t want my mother to be there,” Matthew replied flatly. “I’ll call my friends tomorrow.”

The friends that Matthew was referring to are the non-disabled ones he knew in middle school who had  been kind to him and had worked as aides in his special education class. Most are 23 like Matthew and have graduated from college and are in the work world. They have moved on.

When we got home, I called an army of family and friends who had generously saved the day in situations like these in the past.

“I need a Super Bowl party for Matthew,” I told them, but only one I could reach right away was my  friend, Kate, just as she and her family were leaving for the weekend.

“If we’re back in time Sunday,” she said “he’s welcome to come here for sure.”

***

After breakfast on Saturday morning, I lingered by Matthew’s bedroom door and listened as he phoned his “friends”.

“Hi, it’s me, Matthew. Is Joe there?”

Long pause.

“When did he move?”

Pause.

“I really wanted to watch the Super Bowl with him.”

Long pause.

“OK Bye.”

Matthew made phone calls like this on and off throughout the day with no bites.

By 4pm, I was counting the hours before bedtime when Matthew asked if we could go to the store.

“I want to get some chips for the Super Bowl Party tomorrow. We should make some cookies, too.”

Without a clear plan by Sunday morning, Matthew was desperate, and so was I. “I seriously need to go to a Super Bowl Party!” Matthew wailed, “and everyone is just so busy!”

I made the mistake of telling him that Kate and her family might have a party if they got home in time. Matthew jumped on the phone and called their number over and over, slamming the phone down every time he heard their “We’re not home” message.

“Would you like to go out for pizza?” I asked him. “They might be home by the time we’re finished.”

“No thanks,” he replied, “there will be plenty to eat at the party.”

He went into his room to listen to music until 3pm, and then asked me for a nice plate to put the cookies on.

“I’ve decided we should just go to Kate’s house” he said.

“That’s fine,” I replied, “but when we get there, they may not be there. Or they might be tired from their trip and tell us to go home.”

“It will be fine,” Matthew said. “I remember that they are usually really nice.”

Matthew was serene as we drove to Kate’s house, the plate of cookies and bag of chips on his lap. I, on the other hand, was a mess.  Some have nightmares about going to a class unprepared—I have nightmares about imposing on people.

“Please, God,” I prayed en route,” Let them be home and let them invite us in.”

When we pulled up to Kate’s house, Matthew bounded up the stairs and knocked on the door with a big grin. Kate opened the door in her bathrobe and smiled back.

“Matthew!” she said, “I was hoping it was you! We just got home!”

Matthew walked in and put the cookies on the coffee table just as Carrie Underwood started singing the Star Spangled Banner. Kate’s husband and teenage sons took their place on the sofa next to him.

“I’ll need a bowl for the chips,” Matthew said, “Mom, you’d better get going.”

Kate winked at me, I mouthed the words “Thank you and God bless you,” and went home.

I dropped Matthew off the next morning at Camphill, feeling like I had just crossed the finish line of a triathlon. Before I could get away, Matthew chased after my car and waved for me to stop.

“Mom, wait, I forgot to ask you something very important that I’ve been wondering about. Did Roy Orbison ever meet Valerie Bertinelli?”

“I don’t know,” I sighed, “but I’ll find out and we can talk about it next month.”