I recently got my autism forum on Facebook all riled up by this query:

“Don’t love the stares that come with being an autism mom, but used them. You?”

The following true story (true confession) is adapted from the first chapter of A REGULAR GUY: GROWING UP WITH AUTISM along with some of the things I have learned from being on the receiving end of giggles and stares:

***

When I was eight years old, Uncle Russell came to visit. He was my mother’s cousin, but everyone called him Uncle Russell. He was twenty years old and had a severe case of cerebral palsy.

Russell was pigeon-toed as I had never seen before, causing his knees to face each other. He walked in a spastic, bouncing stumble. His hands were gnarled and bent at the wrist, fingers curled, in a way that my brother and I found impossible to imitate. His long neck was thick with muscles pulsating from the strain of holding his large, constantly moving head.

Despite his challenges, Russell always had a huge, improbable smile on his face. My brother Scott and I tried in vain not to laugh at him. Even my compassionate mother sometimes had to excuse herself to giggle in the kitchen with us.

“Laura, we’d better not laugh,” she said before going back to face poor Russell again. “God may give you one like Russell someday.”

Mom wasn’t superstitious, and I knew her warning was only meant to sober us enough to get our giggles under control.

Russell wore pointy red Keds and a baggy old cardigan sweater. His dark hair was greasy, and he smelled bad. I remember thinking that it would sure help if his parents dressed him nicely and cleaned him up a little.

Looking back, I realize that his parents did the best they could-the shoes were probably the only ones that fit his feet; cardigans are easier to get on a spastic child than pullovers; and bathing a young man with cerebral palsy is a grueling job for aging parents exhausted by endless caretaking.

Through the years, there were others I couldn’t help but laugh at, like the twin brothers summer camp when I was fourteen. One was normal and the other weird. The odd boy flapped his hands when he was happy; he’d rock back and forth and sing songs. My friend Ginny and I didn’t want to laugh at him, so did our best to avoid crossing his path so we wouldn’t blow it. One time his brother caught my self-conscious giggle and glared at me, deeply hurt.

I’ll never forget it.

When I was in my twenties and living in San Francisco, I was introduced to a nice-looking guy at a Christmas party. As he stood up to shake my hand, I noticed there was something funny about his legs. He seemed like a great catch-educated, funny and well-dressed.  We sat down again and talked for a while. Eventually, he got my phone number. My excitement turned to dread when he got up to get us a drink.

He walked like Uncle Russell.

I stifled a nervous, embarrassed laugh and pretended to be laughing at a funny joke I had just heard when he got back with our drinks. Somehow I held it together for the rest of the evening.

He did call me for a date and I accepted. Before he arrived, I told myself that here was a terrific guy with a great attitude who had accomplished much despite his disability, and I should rise above my silliness, be a good person, have a great time.

But when I opened the door to greet him and saw him limping up the stairs toward my apartment, a bouquet of flowers shaking, I knew this would be our last date.

I called my mother the next day to share my date story. She didn’t laugh.

“I hope you were kind to him,” she said quietly. “It must be so hard for him. I’ll bet his mother worries.”

There was an awkward silence between us, and I felt like a superficial, spoiled brat. What could I say to redeem myself?

“If I had a baby with a problem,” I said,  ”it would be hard, but I’d do fine. But I have a feeling my kids are going to be healthy.”

“So do I,” said Mom. “So do I.”

***

Some thoughts on the stares and the giggles:

1) It’s hard not to look. My son’s behavior (and my attempts to control it) can be stare worthy and even comical. People are curious.

2) When people are watching (staring) you have an opportunity to model best ways to deal with a person with a disability.

3) When people frown are display other disapproving behavior, try your best not to engage with them unless absolutely necessary. It could cause the situation to escalate and make things worse for your child.

4) If you snap (and you will), like the time a woman wouldn’t sit next to Matthew on a plane flight, it’s OK. Just reassure your child as soon as is possible.

5) Remember that most people are watching you are compassionate. Sneak a peek from time to time. Their smile of admiration will make your day.

In my experience, the world has become a friendlier place for families dealing with disabilities, including parent Julie Wagner Leonard:

The zoo in a city nearby had a special invitation-only open night for just disabled children. (Invites issued through area pediatricians). My sister and I took her seriously autistic son and his younger sister. It was fabulous. Hundreds of people there and no ignorant stares, just a few nods and knowing smiles. We could relax and enjoy ourselves. He had a fabulous time and so did we.

***

I recommend the following parent perspectives:

 

30 things people don’t get about kids and adults with cerebral palsy (but should) Ellen Seidman, Love That Max

Love, a Diary of a Mom

Tell me a Little Something – Jennifer Byde Myers

What are your thoughts on this topic? Share them here!

***

Order my book here. It makes a great gift for Mothers Day, teachers appreciation, Fathers Day etc.

 

 

 

A look back at “The Dark Ages” when early intervention was a guessing game:

An excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

 

1993

During winter break in Matthew’s first-grade year, and without the support of the experts who were currently working with Matthew, Peter and I decided to try the miracle cure: Auditory Training.

“Did you see that girl on Oprah?” I asked Dr. Hoffman. “I don’t usually watch Oprah, but one day I flipped it on while I was folding the laundry. Anyway, through this amazing treatment, this girl went from autistic and functionally retarded to gifted.”

The theory behind auditory training, simply put, was that some children who suffer from learning and behavioral disorders, including autism, are hypersensitive to certain frequencies of sound. Auditory training was designed to normalize hearing and the ways in which the brain processes auditory information.

“We figured that since Matthew is hypersensitive to sound, auditory training might cure him. Do you know anyone who has tried it?”

Dr. Hoffman had not seen the girl on Oprah, but Christy, the speech therapist, said she knew some parents who had tried the training.

“It’s very expensive,” she added. “Some claim that they have seen some improvement, but none of my clients has been ‘cured’ by it. There has been no clinical proof that it works, so I’m skeptical.”

“Let me put it this way,” I said. “If it were your child, would you try it?”

“No.”

But Peter and I were already carried away by the wave of information we had gathered on auditory training since the young girl’s appearance on the Oprah show. What if Matthew’s autism was caused by hypersensitivity to sound, and what if this one treatment improved his life forever? And how guilty would we feel if someday, some specialist said, “If only he’d had auditory training when he was six. . . ”

“I know that if I heard everything as acutely as Matthew does,” Peter said, “I’d have a hard time focusing on anything else. I’d go mad.”

Matthew started the training just two weeks after the birth of our third son, John. As soon as it became clear that Matthew’s disability would be lifelong, I was desperate to have a third child. “We don’t want our boys to be viewed as ‘the normal one and the one with the problem,’” I told Peter. “Can you imagine what a burden it would be for Andy down the road?”

Peter agreed with the idea of having a third, but thought we should find out if we were at risk of having another child with autism. The responses from the experts were mixed, and Peter was ambivalent, but I pressed, reasoned, and begged and finally we took a chance. John was the most beautiful of my three babies and appeared normal, but we would have to wait a while to see whether he had escaped autism.

The closest auditory training practitioner we could find was in Marin County, about an hour’s drive north on a good day. Peter agreed that he would be in charge of taking Matthew to and from the ten-day program, during which Matthew would listen to music wearing headphones fitted with a special electronic device. The device filtered frequencies from the music, sending modified sounds into Matthew’s ears and training his auditory nerve to process sound normally. Each day of the training, Matthew would wear the headphones for thirty minutes in the morning followed by a three-hour break, and thirty minutes in the afternoon.

“Matthew and I can go out for lunch and for a hike between sessions,” said Peter. “It will be fun.”

The training facilitator suggested that before the training we put headphones on Matthew at home as much as possible to get him used to it.

“And if he doesn’t get used to it, don’t worry, we can make the headphones so loose that he won’t know he has them on. And we have plenty of toys to keep him busy.”

“But will the treatment work if the headphones are loose?”

“Oh, don’t worry, they won’t be too loose!”

Even with a two-week-old baby, I went along for the ride the first day of training. The “facilitator,” who was also a psychotherapist, had sounded quite professional on the phone, but I wanted to meet her in person. “I work with my husband,” she had said. “He is also a therapist, and great with kids.”

 

The husband greeted us when we arrived and ushered us into his office. He was tall and thin and wore a full beard, Birkenstocks, and a leather vest over a paisley shirt.

“It smells like garbage in here,” said Matthew. The husband opened a window.

The office reminded me of a low-rent version of Dr. Hoffman’s.

Instead of a sleek, leather chair there was a beat-up brown recliner, and next to it a large beanbag chair with toys strewn all around it. I looked at the certificate on the wall.

“You do hypnotherapy, too?” I asked, and he nodded.

“That’s my bread and butter. My wife will give Matthew an audiogram before we start, another during the middle of treatment, and then a final one when treatment has been completed. We’ll make adjustments to the filter along the way to get the best result. You should see some results immediately following the last treatment, but the full effect won’t be apparent until six months after the treatment is completed.”

“Do you guarantee your work?” asked Peter.

“Yes. After the six-month period, we’ll do another audiogram and more treatment if he needs it.”

If you’re still here in six months.

“Can I see the headphones?” I asked. “I’d just like to see how they fit Matthew.”

The husband sat Matthew in the beanbag chair and put the headphones on him. Then he turned on the music and Matthew started laughing—a crazy, scary laugh.

“See?” said Peter. “He likes it.”

I knew what Peter was thinking. We have already put $1500 into this thing, fifty percent of the total, and damn it, it’s gonna work.

“Where is your wife?” Peter asked, and a red-headed beauty wearing a gauzy peasant dress came floating in breathlessly.

“Sorry I’m late,” she said. “My cat is sick.”

Yeah, well I’ve got a two-week-old baby, and I’m early.

“Do you have any questions?” she asked.

The husband had answered our questions, so we said no.

Peter and I took our seats in the waiting room. Baby John slept, and Andy opened his new coloring book. I glanced through the vertical blinds into the room where the wife was giving Matthew his audiogram, the husband by her side looking befuddled.

“Peter?” I whispered. “Look.”

“Oh, man,” he sighed. “If this pair cures Matthew, that would be the miracle.”

 

Peter and I studied Matthew carefully once he had completed the training, watching for his reaction to sounds and for any improvement in his behavior.

“I think he’s little better,” said Peter one evening as the family sat down to dinner. Then as if on cue, Matthew jumped up from the table and ran outside. We followed him and found him smiling intensely as he looked skyward at the white trail of an airplane. Then he jumped up and down, laughing and drooling, his hands flapping.

“They said we might not see the full effect for six months,” Peter said as I shook my head.

“Yeah, we’ll have to mark that on the calendar.”

 

Any improvements that were gained by auditory training, real or imagined, were erased in an instant on the third Monday of Matthew’s second-grade year, two months after the magical six- month deadline. Someone pulled the school fire alarm, and Matthew refused to take his hands off his ears—for three whole months. A special meeting was called at school; even Dr. Hoffman attended, but no one was able to get Matthew to take his hands off his ears.

Finally, Matthew’s Grandpa surprised him at school one morning, took Matthew’s wrists and said, “Matthew. It’s safe now.”

And that was that.

NOTE:

Auditory Training (Now referred to as Auditory Integration Therapy) is still available today, and while some individuals have reported improvements in auditory processing resulting from AIT, there are no credible studies that demonstrate its effectiveness or support its use.

To learn more about treatment for autism spectrum disorders, CLICK HERE.

You might also be interested in the following articles:

Ten Autism Myths Debunked: Wrong Planet

Why autism moms act the way they do

10 things I wish someone told me about parenting a child with special needs: Liane Kupferberg Carter

 

 

 

 

 

I ran into an autism mom friend today. Her name is Jenny, and she had that if-you-ask-me-how-I’m doing-I’ll-start-crying look on her face.

What’s going on, I asked, and her blue eyes spilled over.

“Joe turned 11 last week,” she said, “and for the first time I started freaking out about the future.”

She started sobbing.

“And then my husband and I went to the Round-Up Saloon, you know, that fun bar downtown, with some friends. It was Karoke night, and this guy, I guess he was in his 20′s, started singing. He was rocking and dancing around awkwardly–it was so obvious that he had autism or something like it, and I just lost it.”

I handed her a tissue.

“I mean, I know Joe can’t be a little boy forever, but it just got to me. Will he be like that guy someday?”

Was it this past Saturday night, I asked her? Was the guy pretending to be a rockstar, handing out t-shirts and CD’s  and did he hang up a poster of himself? She nodded, biting her lip anxiously.

“That was Matthew,” I chuckled, and Jenny looked mortified. I’m sure she is probably still kicking herself, even though I told her it was OK, really.

I too, had cringed at the thought of grown up Matthew, once averting my gaze  when I saw a man with a developmental disability struggling with a transaction at the grocery store.

But I have evolved.

I remember when I was 5 weeks pregnant with Matthew, and my brother asked me to baby sit his 4 year old, my niece, Melissa, for a day. After just a few hours, I was completely exhausted, and wondered how in the world I could be a parent.

“You’ll be fine,” my brother assured me, “it’s kind of like getting in shape. You build up strength over time.”

That’s how it is when you are an special needs parent. You get in shape. You toughen up. You cry a lot, and laugh just as much. It is really, really hard, but then one day, your are sitting in a bar, watching your son sing, and you are recording his performance on your iPhone. Sometimes people snicker, but usually they cheer and clap, and you can’t stop crying because you son looks so happy.

And then you hand out his t-shirts and go home, thinking “Little did I know…”

***

 

Do you have questions? Contact me HERE and I will do my very best to help.

FOLLOW ME on FACEBOOK and TWITTER.

Read the first three chapters of my book HERE.

You’ll be hooked.

 

 

 

 

Hi friends: I am reposting this one by popular demand, and have updated it some.

Enjoy!

***

“Mom?” Matthew asked, “Where is the closest airport?”

“Oakland,” I answered with a sigh.

“Where is the next airport?”

“San Francisco. Then San Jose, Morgan Hill…”

“Stop!” Matthew wailed,”I need to ask you first.”

Matthew was 10 years old, and his obsession with airports was wearing me out. I was only allowed to stop answering him when the phone or the doorbell interrupted us.

He was stuck.

Looking back, I believe that Matthew wasn’t intentionally trying to drive me (and everybody else) crazy. I think he was trying to connect, and his fascination with airplanes and airports was the only way he knew how.

I asked parents and teachers on my facebook autism forum offer their tips:

How can we help our kids get “unstuck”?

 

1) VISUAL IMAGES

When one of my students gets stuck on a particular topic, especially one that is scaring her, we print out a picture from Google images and then tear it up. That gets the thought out of her head.

 

Jessica Roe

2)REDIRECTION

I usually say, “Is this a big deal or a little deal?” and she usually says, “a little deal” – then I say, “If it’s a little deal then we’re not going to worry about it” – then, of course, redirection and bribing if needed.

 

Tracy Donohue

I usually just engage him a bit in what he wants to talk about. I don’t want to cut him off and have him feel what he has to say, whatever the subject, isn’t worthy of being heard. Then, once I know he’s told me everything I just change the subject to different things.

Kris Scalaro

3) TALK IT THROUGH

 

Redirection never works with my son. I use this formula:

1.acknowledge the issue

2.parallel yourself somehow, let your child know of an instance when something similar took hold of your thoughts

3. confirm that the issue will be resolved.

This actually works with ANY situation and anybody, but when I started really doing this with my son, it helped him instantly. It was like a light bulb went off in both of us. Keep following 1, 2, 3 until your child gets unstuck.

 

Linda Pasqualone Francese

4) SET LIMITS

 

Stuck on a conversation topic (many times a day here): “one more sentence and then I’ll listen to more when done with homework, but now it’s time to do this other thing. Write a note in a notebook if it helps to remember.” I listen intently to that one sentence. It gets the pressing subject out of his head, gives comfort that his conversations are important, and sometimes he forgets to get back to it!

I ask questions when he returns to the subject to get him more into conversational speech rather than just dictating facts. I listen intently and keep my promise to do so. (not always easy!)

 

Karri Gunnerson Jose

5)SET A TIMER

I’ve had very little success in stopping an obsessive train of thought once it starts! Now, I typically set a timer and say, “I will listen/talk about this for x minutes, then I’m done.” Once the timer rings I just keep repeating “I’m not talking about this anymore with you now”. Which 7 out of 10 times results in a meltdown–then I move on to meltdown strategies.

Lee Anne Klopp Owens

6) JOIN IN

Try joining him and sharing ideas. Adapt your pacing/timing and affect to connect. I find most kids tend to get “stuck” due to a breakdown in comprehension and/or motor planning. Emotions also drive their ability to work through these moments. Maybe modeling the task he is doing and carefully expanding would also be helpful.

Sarah Weiler

 

I’d love to hear from you. How do you help your child get “unstuck”?

______

Read the first three chapters of my book HERE.

You’ll be hooked

Available at your local library or HERE.

 

 

For the past 15 years, Donald and Bonita have been meeting each other every morning at The Arc San Francisco.

 

 

Bonita makes sure Donald has his glasses and bus pass before he goes off to work at his custodian job downtown. Donald says he likes getting a paycheck so he can take Bonita to lunch.

The couple meet back at The Arc at the end of the day and travel to their separate homes. Donald lives at home with his elderly mom; Bonita lives in a group home.

In a perfect world, they’d get to go home together, but that’s not how the world works for many individuals with developmental disabilities.  While employment, education, health care and other supports are public priorities, the affordable housing that would give Donald and Bonita a chance to live together is out of reach.

Still, their relationship endures.

For Donald and Bonita, The Arc is a lifeline, providing employment, education, health care and a safety net of support.

The Arc San Francisco is a non-profit service and advocacy organization for adults with autism, Down syndrome, cerebral palsy, intellectual and developmental disabilities and their families living in San Francisco, Marin and San Mateo counties.

The Arc serves a varied group of over 550 clients who, despite their diverse backgrounds, ages and disabilities, are all similar in their desire to live a life of greater self-determination, dignity and quality, providing supports that enable people with developmental disabilities to maximize their potential, live meaningful lives and become integral members of the community.

“The capacity for people with developmental disabilities to live full, rich lives is often underestimated,” says The Arc San Francisco CEO Dr. Glenn Motola, “but love is found across the entire spectrum of  the human experience and includes us all, people with disabilities and people without disabilities.”

Bonita agrees.

“Donald makes me laugh and makes my worries go away.”

To learn more about The Arc of San Francisco, CLICK HERE.

***

Do you have questions? Contact me HERE and I will do my very best to help.

FOLLOW ME on FACEBOOK and TWITTER.

Read the first three chapters of my book HERE.

You’ll be hooked.

By the time my son Matthew was given the official diagnosis of autism at age 5, I already knew. This was almost 22 years ago, and I had only heard the “A” word to describe what Matthew probably wasn’t. Back then, autism was not nearly as prevalent as it is today, and it seemed that nobody wanted to be the messenger. Once the diagnosis was confirmed, it was up to me to figure out who to turn to for help.

What a difference TWO decades make. Specialists are able to detect the symptoms of autism earlier and earlier, and while it is never the diagnosis that parents want to hear, there are so many resources available now from the very beginning.  Here is list of 11 crucial things to help you get started:

1) Allow yourself time to grieve. Don’t let anyone rain on your denial phase. I found that stage to be one of my most productive.

2) Susan Woolner, mother of three boys including twins with autism(I always listen to a mother of twins with autism) recommends Autism Speaks 100 day kit, and the Asperger Syndrome and High Functioning Autism Tool Kit-both were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.I wholeheartedly agree. Autism Speaks has one of the best resource guides ever.I’m also very impressed with myautismteam.com, a social network for parents of children with autism that has partnered with Autism Speaks. The Autism Society of America’s resource guide is also excellent. But one my most recommended resource guides comes from The Thinking Person’s Guide to Autism. 

Speaking of THE THINKING PERSON’S GUIDE TO AUTISM, spend some time with their blog, and check out their book. There you will find great info from smart people just like you that you can trust.

3) Meet other parents and build community with them. Also, seek out parents who are “veterans” in the ASD journey. The benefits of being with other people who “get it” cannot be explained in words.

4) Educate yourself on your state law and school district policies. You are the best advocate for your child. Remember that they are children first and that they just happen to have autism.

5) Don’t blame yourself or your spouse.

6) Pick your battles. You already know that by now.

7) I am not an organized person, but I have learned that the best thing is to have some kind of a schedule each day so that your child knows what to expect. I am also not a tidy person, but have learned that clearing the clutter in the house helps. Think about how calm you feel when you walk into a staged home.

 

8) The internet can make you crazy! You will find a lot of support, but you can also find a lot of false promises.

9) Pray for patience. Patience helps a lot.

10) Even though you will occasionally feel like you’re losing your mind, do your best to keep your sense of humor. Autism itself is not funny but it DOES create some situations that are.

11) Don’t forget the other siblings. Move heaven and earth to give them the love and attention that they need.

12)”No matter the level of his or her challenges,” says’s Lindsey Nebeker, a pianist/songwriter and autism advocate who herself is on the autism spectrum, “your child has a place in this world. Your child has a voice.”

I am open to more pointers if you would like to share some.

One more thing. Need to vent? Want some help? Contact me here and I will do my best to help.

…

Read the first three chapters of Laura’s book here.

You will be hooked.

(don’t you love it when people talk about themselves in third person?)

 

It was a beautiful April afternoon in Lafayette. Matthew, who is now 26, was approaching his fourteenth birthday and painting with watercolors peacefully while his younger brothers Andy and John kicked the soccer ball around in our backyard. We had had our share of bumpy days lately, but this was not one of them.

The mail came, and in the midst of the catalogs and bills was an official-looking envelope addressed to Mr. and Mrs. Peter Shumaker that got my attention.

On letterhead from the offices of attorney Casper White, it read:

“I am writing you regarding the bicycle accident involving your son, Matthew, on March 8, 2002 (about a month before) blah, blah, blah, I am representing so-and-so who was injured in the accident, please contact me, etc.”

I walked into the kitchen where Matthew was painting and asked, “Did you have an accident on your bike?”

“Who told you?” Mathew replied calmly.

“Someone wrote me a letter about it. Were you hurt?”

“Not really.”

“Who else was in the accident?”

“A boy.”

Oh, my God.

“Was he hurt?”

“Probably.”

“Was he bleeding?”

“Pretty much.”

God help me.

“Matthew,” my voice quaking, “did an ambulance come?”

“I give up. I’m done talking about this.”

He resumed painting, at which point I lost it.

“Matthew! I need to know what happened! Where did this happen? Was there anyone there that you know? Did anyone ask you questions?”

Matthew’s lower lip quivered as he tapped his paintbrush nervously on the table. “Am I in trouble?”he whimpered.

I took a breath and said, “No, of course not. You just paint and we’ll talk about this later.”

I hugged him and he choked back a few sobs and continued painting.I went back to my bedroom and called the attorney, my eye on the blue bike in the backyard.

According to the attorney, his client and nine-year-old son were riding bikes at the middle school around the corner. Matthew crashed into the younger boy, stopped for a moment, then fled. The boy broke his leg. Badly. He would be in a wheelchair for six weeks. The family had no medical insurance.

“I understand your son has autism.”

My mind raced to the conclusions made by the boy’s family, the attorney, and our community. This thirteen-year-old autistic boy is riding his bike without supervision, collides with and injures a child, and leaves the scene. His parents are negligent. He is a danger to those around him.

“He wants to ride his bike at the playground like any thirteen-year-old. I can’t watch him every second,” I would counter.

But I knew that Matthew couldn’t manage these kinds of situations like most thirteen-year-old boys, so I’d hired after-school helpers to take him for bike rides and other activities. Still,  Matthew was not supervised every second. I tried to keep track of him, but he snuck out regularly.

But this accident had happened weeks ago–How did the attorney get Matthew’s name and address?

“From a neighbor who didn’t want to be identified.”

To this day, I wonder which neighbor it was, and wish I’d been more approachable back then. But I was so overwhelmed, which is why Matthew was riding his bike unsupervised in the first place!

What I didn’t know was that my neighbors were curious about Matthew and about our family. They wanted to know “what the deal was”. They wanted to help (or at least to understand.)

Give your neighbors credit. They, too, might have messy lives. But if they know what you are facing, they’ll do there best to help you. If you don’t feel up to running around the neighborhood and explaining things face to face, start by printing up a little information sheet with some particulars about your child. You can start with this list of the basics:

1) Autism is a neurological disorder; not a disease. It is a broad spectrum disorder, meaning that people with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic.

2) All share deficits to some degree in three areas: social interaction, verbal and nonverbal communication, and repetitive behaviors or interests. In addition, many have unusual responses to sensory experiences, such as certain sounds or the way objects look.

3) “They” are not all alike. Individuals with autism have unique challenges, quirks, and interests. People with autism can be hard to figure out. Don’t be afraid to ask their parents or caretakers questions.

4) There is no proven cure for autism-yet. Autism is a lifelong diagnosis. That’s not to say that people with autism don’t improve, because many improve radically with treatment. But even when people with autism increase their skills, they are still autistic, which means they think and perceive differently from most people.

5) No one is sure what causes autism. Theories range from  mercury in infant vaccines(a theory that has been hyped up by celebrities, not scientists who maintain there is NO link)to genetics to the age of the parents to almost everything else. At present, most researchers think autism is caused by a combination of genetic and environmental factors – and it’s quite possible that different people’s symptoms have different causes.

Another great way to educate you neighbor is with THIS video and the following links

What’s it like to have autism?

Autism and the wandering problem

Autism and Law Enforcement

Tribute to nice friends

 

You might keep a few bottles of wine and boxes of chocolate on hand –just in case!

 

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  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 Gerhardt, 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”.

Some of Peter’s 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.

“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.”

***

This story is an excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

1) My husband and I planned on having our first child after two years of marriage.Matthew beat us by 2 months.

2) I took Matthew on a job interview when he was eight weeks old because I couldn’t bear to leave him with a babysitter.

3) The first person that told me that Matthew, then three, was developmentally delayed was a speech therapist. She was also the first person who didn’t mention how adorable he was.

4) My husband and I coached Matthew before his next evaluation with a child psychologist. We read him Richard Scary’s Best Word Book Ever.

5) When the child psychologist confirmed that Matthew was developmentally delayed, I thought that meant he could catch up. I really did.

6) Matthew lined up toys and laughed too hard at sprinklers in the garden. None of the books mentioned this behavior in the milestone department. What was going on?

7) I was angry with Matthew for being stuck on the sprinklers, and the drains, and the lights, and I felt guilty that I was angry.

8 –    When Matthew’s baby brother Andy charmed family and friends with his personality and smarts, my love for Matthew deepened.

9) Andy is now 24. My most cherished childhood memories with him are the walks we took while Matthew was with speech therapist/psychologists/occupational therapists etc.

10) Matthew’s youngest brother, John, was one week old when we tried our first miracle cure, auditory training. He is now 20 and helps Matthew film “rock-u-mentaries”. More about that another time. He is even more patient with Matthew than I am.

11) Matthew is WAY more capable than I ever dreamed he would be. WAY. He’s hardest working person I know.

12) It used to ruin my day when people stared at Matthew, but it doesn’t anymore.  I get that my son’s behavior can be stare worthy, and that people are curious.

13) It ruins my day when Matthew tells me he is lonely….

14) …but that happens less frequently because Matthew has friends. Isn’t that great?

15)  The year I accepted that Matthew’s autism was lifelong was also the year I had a mini-breakdown. O.K., It was more than a mini-breakdown.

16) The best things I ever did was find a good therapist.

17) My sense of humor has saved me, and it gets better every year.

18) There is nothing more genuine than one of Matthew’s smiles.

19) There are more kind people in the world than there are jerks.

20) I cried at every IEP except for the last one.

21) I never blamed vaccines.

22) I’ve met some of the best people because of Matthew.

23)  My husband I have stayed together-I hear that is unusual.

24) I am luckier that most.

25) The lump in my throat will never go away.

***

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