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Prompted By Chance Encounters

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Chance Encounter #1

Although there are many authorities in the field of autism, the two individuals who helped me the most were parents, who just happened to be there at the right time.

In January 1990, my Doubleday editor asked me to copyedit Sound of a Miracle, by Annabel Stehli. It was a mother’s memoir about raising her autistic daughter and how the girl was helped immensely by a French auditory therapy. I vaguely remembered a Life magazine article about an autistic boy who would only eat White Castle hamburgers, but that was the extent of knowledge about the disorder.

I was not prepared for the gripping, heart-wrenching story of a mother’s struggle to help her daughter, and although copy editors are discouraged from writing personal comments about an assignment, I couldn’t help adding to my final memo: “The book is so powerful that even this jaded copy editor cried throughout most of it.”

Autism, according to Annabel, often shows up around eighteen months of age, and at one point, I tearfully bent over my peacefully sleeping seventeen-month-old son James and whispered, “Thank God you don’t have that horrible condition.”

About three weeks later, James underwent a complete personality change. I remember the exact day. For the first two weeks of his swimming lessons, he was bold and joyful, jumping fearlessly into the pool and splashing me with abandon. But when we entered the pool area for the third lesson, James screamed and ran back to the locker room. When I insisted that he return, he threw himself on the tile floor and started banging his ear. The teacher told me to force him to stay in the water, and he screamed for a half hour then gave up and went limp in my arms. He repeated this pattern during the next seven weeks. He also refused to go anywhere without a fight, sometimes just sat in his stroller for hours facing the wall, would shriek if I took him to a play date with his former friends, and always seemed listless and out-of-touch. When I took him to the pediatrician and asked if James could have autism, the man shook his head and said, “That condition is very rare. I’ve been in practice for twelve years, and I’ve never had a single autistic patient. Maybe he’s anemic.”

However, as the months passed, James developed more of the symptoms that Annabel described, notably hyperacute vision and hearing some of the time but a kind of deafness and a complete lack of eye contact and visual interest at other times. I took him to various doctors and therapists, who told me that I was spoiling him, I was too attentive, I was too impatient, etc. One speech therapist told me that a child develops language through frustration and need—the fact that I had learned to intuit and automatically attend to my nonverbal son’s every need meant that he had no reason to learn how to speak. I didn’t realize what utter BS that was until I had my second child, who absorbed language like the roots of a plant sucking up water and whose first words burst out like flowers in the spring. But if I hadn’t had that chance encounter with Annabel’s book, I might have actually believed all their nonsense.

By age two, James and I were undergoing what felt like the dark night of the soul. I couldn’t go anywhere; I lost all my friends. I watched in amazement as other people’s children spontaneously talked and played and lived. But the one thing that James did that other toddlers didn’t do was that he had apparently taught himself to read. In fact, the alphabet seemed to be the only thing that brought him out of the Twilight Zone. At first, he was able to correctly identify the letters on The New Yorker and other magazine covers (i.e., “Point to the N,” etc.), and sometimes he would do something phenomenal. For example, when we were watching a video of “The Farmer in the Dell” on the TV, he grabbed one of his small audiotapes and correctly pointed to words “Farmer in the Dell” in the song list printed on the label. Another time, one of the few visitors to our apartment said, “See you later, Alligator, after while, Crocodile,” as he was leaving. James raced over to the bookshelf, pulled out one of his books, and pointed to the title—The Enormous Crocodile. Despite this unique interest, his IQ was tested at 54, and no  preschool in Manhattan (where we lived) would accept him. Therefore, we packed up our stuff and moved to Northbrook, Illinois, which was near where my husband Doug grew up.

We enrolled James in a local preschool, but two weeks later, I was told that he was so noncompliant that they were kicking him out. “He needs special ed,” the teachers insisted. In the back of my mind, I kept thinking about autism and that French auditory therapy. Maybe I could take James to France, and he would experience the same “miracle” that saved Georgie Stehli.

 

Chance Encounter #2

The early childhood special ed program took up an entire floor of a former high school. I toured the place but was unimpressed. The kids were listless, uninvolved, stubborn, sleepy, or often ignored. When I was saying good-bye to my tour guide, she sensed my hesitation and said, “Would you like to talk to one of the parents?”

“Sure,” I said.

The woman thought for a moment, looking at the floor. “Let me see,” she said, “who would be a good person to talk to? Gee, I’m not sure who. I wonder . . .”

Just then a well-dressed woman walked by us quickly, as if in a hurry to get somewhere. My tour guide was still thinking, but she looked up just as the other woman was disappearing around the corner. “Her,” my guide said, pointing. “That’s Rhonda. She’s the parent you should talk to.”

Sometimes I wonder what would have happened to us if Rhonda had not walked by at that exact moment and if the tour guide had not looked up just before the back of Rhonda’s body vanished out of sight. Our lives would have been different, at least in the short run.

I called Rhonda as soon as I got home. She asked me to describe James, and I told her about his autistic traits, his lack of verbalization, his social detachment, but his precocious ability to read and write, which by this time (age three) included carefully printing words  like “Oldsmobile,” “McDonald’s,” and “Sign Available.”

“Wait!” Ronda said excitedly. “I know what it is! I just read about it. Listen to this.” Then she read aloud a description of a rare, recently identified syndrome called “hyperlexia,” which was a form of autism that was accompanied by an obsession with the alphabet and self-taught reading. This was James! She told me that a speech clinic in nearby Elmhurst had experience with hyperlexic children, and that the condition stemmed from an auditory processing disorder which the child compensated for by overdeveloping their visual processing. Immediately, I thought about the auditory therapy that Georgie Stehli had undergone, and I brought this up to Rhonda.

“Unfortunately, it’s only available in France,” I signed.

“Not anymore,” Rhonda said. “It’s available in Carol Stream. And I’m planning to take my son.” Apparently, Annabel’s book had been such a success and had caused such a demand for the French auditory therapy that the Stehlis had brought the therapy’s inventor to America, and he had held training classes for American audiologists.

Because of Rhonda, I took James to the speech clinic in Elmhurst, and he also received a two-week session of auditory integration training in Carol Stream. I can’t say that his language burst forth like spring flowers, but the speech therapist told me that she had worked with almost 100 kids like James, and the prognosis was very good. They simply learned language through a different pathway, namely, by reading it. And the auditory training made James much less sensitive to sounds so he could pay greater attention to the auditory world. Because of Rhonda, I suddenly had hope.

 

Chance Encounter #3

Once it was established that James was using printed letters and reading as a gateway to language, I started writing everything down on a giant newsprint pad. “DO YOU WANT MILK?” etc. Then I would point to each word and say it out loud. But being a pretty emotional person, I didn’t want him to just learn the basics. I wanted him to be able to express his inner thoughts and feelings. What would James say, I wondered, if he had the words to say it? By then it was early 1993, and although home computers were relatively new, we had one, and Doug bought him the Sesame Street Writer, which enabled you to fill up 20 pages per file (with about 20 words per page) using a giant primitive type font.

Every afternoon, when my infant daughter Lauren napped, I sat James down next to me and I typed out the theoretical story of his day. I didn’t know if he understood a word, but I had his full attention, and I made sure to include some emotional language: “Today I woke up feeling lonely. I wish I could learn to talk so I could have a friend. Sometimes I get angry at Mommy for paying too much attention to Lauren, even though it can be fun to be an older brother.”

One day as we began our writing session, the phone rang. While I was talking, our second line rang, and I answered that call, too. When I returned, James was sitting in my chair—typing. He had a determined, almost crazed expression on his face. Had it not been for those two phone calls (a kind of chance encounter), my four-year-old would not have had the opportunity to write this (even the underlines are his):

 

After mommy was calling on the fone James said mommy get off

the fone and play computer Mommy Hurry up and play

I want my mommy playing not talking on the fone that is

unbleveable for mommy’s

Not again a fone call do the IBM computer

Why would mommy put that computer thing off

again Please do not do it mommy

That is a stupid thing to do

Why would mommy pack fragile boxes

That is a stupid thing

Don’t pack them saying fragile pack regaular boxes

not fragile boxes in house 1637

we have to pack at 1008 Keystone not 1637 Highland

why would Behdod’s present say inarium

Why do bees hum Because they can’t sing the song

 

I could go through and explain what each of the incomprehensible lines means (for example, we were packing to move from 1637 Highland to 1008 Keystone), but suffice it to say that it was not gibberish, and I was delighted to see that he included his feelings. “Not again a fone call” was undoubtedly when the second phone line rang. From then on, he typed out his own stories, and I still have a thick stack of them, along with the Sesame Street stories. Were it not for those two “fone calls,” I might not have discovered James’s ability to write until much later.

 

Chance Encounter #4

James repeated auditory training at age five, and I wrote up my experience in the newsletter of the obscure American Hyperlexia Association, which probably consisted of a hundred parents, if that. He made significant improvement in auditory processing the second time around, and the audiologist said that hyperlexics often showed the most improvement. One day when James was typing up a storm on the computer, the phone rang. “Hi,” the person said, “this is Annabel Stehli. Someone showed me your article in the AHA newsletter, and I just had to call you.”

Annabel Stehli?” I almost shouted. “The author? I copyedited your book!”

There was a long moment of silence on the other end. Uh-oh, I thought, did she not like my work?

Then she fairly exploded, “You mean you’re the jaded copy editor?

“Wait, you read my memo?”

“Yes. My editor showed it to me. And for years I wondered, ‘Who could this person be?’ I conjured up images of a little old lady reading my book and leaving tearstains in the margins.”

We laughed and talked for about an hour, and I told her that if I hadn’t read her book, I wouldn’t have known about autism and I certainly wouldn’t have known to look for auditory training. We became friends, and I copyedited and indexed her next two books, which she self-published.

James, meanwhile, kept typing, and when he was eleven, we collaborated on an informal e-book. We e-mailed it or printed it out and mailed it to anyone who asked for it. Soon, there was an explosion in the number of autistic kids, but because James was born in 1988 and the autism baby boomers were born in the 1990s, he was always just a little bit older than most everyone else, so parents would ask me, “What did you do when . . .” Someone named Amy called me from Singapore 3–4 times a week for several months because her son was clearly hyperlexic, but nobody knew anything about that condition in her country. Finally, our little e-book was published in 2000 as The Self-Help Guide for Special Kids and Their Parents, and we became somewhat known in the autism community. Although there are now numerous treatments and interventions, many of which we tried along the way, and many authorities in the autism field, the two individuals who helped me the most were parents, who just happened to be there at the right time.

Profile photo of Joan Matthews Joan Matthews


Characterizations: moving, well written

Comments

  1. Laurie Levy says:

    Wow, Joan, your story of chance encounters really hit home for me. The preschool I founded (with a lot of help from my friends), Cherry Preschool in Evanston, IL included children on the spectrum from the start in 1992. Our Rhonda (Rhonda Cohen) by chance was a parent with special education training who became our Inclusion Director. When my twin granddaughter, and first grandkids, were born in 2003, little did I know they would become part of that program. Their journey, my daughter and son-in-law’s, and mine has been not so different from what you experienced. They are not hyperlexic, but we did have several children with that diagnosis at the preschool. While my granddaughters were twins, their autistic characteristics were almost yin-yang. We ran into trouble by second grade in public schools. One was unsuccessfully “included,” while the other languished in self-contained special education. Today, one thrives at Cove School, a private school in Northbrook, IL for students with significant learning disabilities. Her sister sadly ended up at Genesee Lake School, a residential program in Wisconsin. She is doing well there, but we miss her, especially because the school has been in lockdown since March.

    Sorry to go on so long, but your story touched a nerve for me.

    • Oh, Laurie, I can only imagine how difficult it must have been for your daughter and son-in-law to have two children on the spectrum. It’s so freaky that in 1988, autistic kids were rare, but starting in the 1990s, the number of cases shot up dramatically. Good for you for starting a preschool! I just looked at the website–very impressive. I wish I’d known about it in 1992. Kids have so many issues these days that early education and intervention are more important than ever. I often hear a statistic at autism conferences that 50% of today’s kids have a chronic illness.
      I know the Cove School well. It’s a truly enlightened place. James went to their summer programs a few times. Interestingly, we ran into a lot of trouble by the second grade, too. Inclusion for James meant that the other kids had a ready-made target in the back of their classroom. Now that there are so many kids on the spectrum, one would hope that typical kids have gotten used to atypical behaviors.
      Are you able to FaceTime with your granddaughter in Wisconsin? James says that autistic kids across the country are suffering from the abrupt discontinuation of their programs, their services, and social contact. This crazy time has to pass!
      Thanks again for your reply.

  2. Betsy Pfau says:

    Joan, amazing story! I’ve already shared some of my journey with my special needs child (born in 1989), who is on the spectrum (but very high functioning) and we couldn’t get properly diagnosed for the longest time. She is alone in San Jose during this lock down and has periods of severe depression, which really worries me. But, as you know, she graduated from Brown, went straight to Silicon Valley and has lived on her own these 8 years. I think you are doing a remarkable job and spreading the word, which is so important too. Great series of chance encounters!

    • The lockdown has been brutal for many children and adults on the spectrum. James says that there is a running debate on Facebook as to what’s worse—the coronavirus or the social isolation. One side feels that the social isolation can be just as lethal. You must be so proud of your daughter’s accomplishments, and let’s pray that this strange time period passes so she can back to work.

  3. Laurie Levy says:

    Inclusion in Evanston fell apart for a number of reasons. They had the misguided notion that it should be done in every school and team-taught by a general ed and special ed teacher, Year one, kindergarten, was the gold standard. By year two, the special ed teacher was shared by two classrooms. This proved to be too expensive, so they kept cutting services. By year three, she had an older teacher who sat four kids with IEPs at a table in the back of the classroom where she gave all of them the same “adapted” work to do while the chaos of the general ed classroom swirled around these highly distractible kids. Also, I think when the academic expectations ratchet up without appropriate learning strategies for the kids who need them, learning ceases and frustration increases. By third grade, these kids are lost. My granddaughter entered Cove in fifth grade, totally traumatized, having learned very little. She’s doing so much better now.

    • Have you ever seen the video “How Difficult Can This Be?” Richard Lavoie puts a group of teachers and educational specialists in rigged classroom situations that demonstrate what it feels like to be learning disabled. It doesn’t take long for these professionals to feel frustrated and to quit trying. I can understand how your granddaughter became traumatized and learned very little. Lavoie says that stress shuts down the brain’s ability to learn new things, and instead, the brain goes into survival mode, which is reactive rather than exploratory. I am so glad one granddaughter was able to enroll in Cove, but I feel sad that her twin couldn’t join her.

      • Laurie Levy says:

        M<e too,Joan. I have done versions of those rigged classroom experiments in teacher in-service at our preschool. You are so on target about anxiety causing a child's mind to shut down. There was too much of that happening in public school for her. One teachers actually punished her for her disability by forcing her into a highly anxiety-producing situation so she would "learn her lesson."

        • Oh, Laurie, I could tell you horror stories about well-meaning teachers who put disabled kids in a terrifying situation so they could “get used to it.” But to thrust a disabled child into a stressful situation to “teach her a lesson”? What lesson? That authority figures are heartless and mind-blind? I have to believe that educators are more enlightened these days, simply because there are so many disabled kids. When I went back to my daughter’s middle school, I was surprised to see so many boys who were clearly on the spectrum.

  4. Marian says:

    This is so moving, Joan. You have been blessed by these chance encounters, and I think you must have been sending signals to the world to get help for James. And to have closed the loop with Annabel? Incredible!

    • Thanks, Marian. Younger parents these days cannot fathom how we acquired information before the Internet. Yet somehow we found each other and got what we needed. I’m not sure how Amy from Singapore obtained my phone number, but she told me that she planned to pass on my advice to other parents in her country. Annabel used to call it our “mommy-net.”

  5. Joan, I too responded emotionally to your story. My nephew Michael, now in his late 20s, is severely autistic. Sadly my sister Laurie, his mother, died five years ago and his father was incapable of caring for him at home any longer.
    Thankfully Michael is now in a wonderful program in Rockville, MD , and has some degree of independence in the group home where he lives, altho the present Covid crisis is taking a toll.
    Wishing the best to James and your family.

    • I find it sadly remarkable how many of us have one or more autistic family members. “Rainman” came out in 1988, and there is that famous scene in which Charlie tells a receptionist that his brother is autistic. Perplexed, the receptionist says, “Artistic?” Nobody would question that word now. When the number of cases curved sharply upward in the 1990s and never came down, the hot topics at autism conferences evolved as the children matured: first it was toilet training, then picky eating, then socially inappropriate behavior, then learning disabilities, then school issues, then bullying and social rejection, but then suddenly these autistic baby boomers were young adults, and the world wasn’t ready for them. As their numbers keep increasing, though, more programs and housing opportunities are emerging. I’m glad that Michael is in a good program, and hopefully this crazy time will pass.

  6. Such a remarkable series of events, Joan…thanks so much for suggesting this prompt, and now I see why you did.

    Far greater minds than mine, scientific minds, have written extensively on the idea that there’s more to chance encounters than mere chance, that there’s no such thing as coincidence, particularly those as meaningful as these. There’s so much we don’t know but are slowly learning, albeit painfully so.

    I have not had any firsthand experience with autism of any kind, so your story is truly enlightening (not to mention incredibly moving!), as are the comments you and others have shared here. It does feel like our younger and future generations are likely to be more and more embracing of differences…I like to think of it as evolution.

    • Hi, Barbara: I didn’t see your comment until now. Sorry for the delay in responding. Jung preferred to call coincidences “synchronicity,” which he defined as an “acausal connecting principle.” As I get older and look back, I see how many things twisted and turned and worked out for the best. I am also starting to see the wisdom in the statement that is attributed to John Lennon as well as several others: “Everything works out in the end, and if things haven’t worked out, then it’s not the end.”

      At one time, autism affected only 1 in 10,000 people. Imagine that. When James was born, it was 1 in 2500 individuals of all ages, not just children. Hardly anyone had had firsthand experience with autism. But now, as you can see from the comments, that has sadly changed. With greater awareness and early intervention, hopefully many autistic kids can live productive lives, and maybe we even need their intensity and focus in our messed-up times. Look at Greta Thunberg.

  7. Suzy says:

    Joan, I just loved this story SO much! Thank you for the prompt idea, and thank you for giving us this amazing story! Who could have imagined that all four of those chance encounters would occur, yet they were all necessary to get you where you needed to be. And I love that #4 brought you full circle back to Annabel, whose book had been #1. That is just too perfect!

    I admire you so much for all you went through with James, and also for how beautifully you wrote about it. I am going to be thinking about this story for a long time!

  8. John Shutkin says:

    An amazing and moving story, Joan. And, boy, do these encounters, and their results, meet any possible definition of “profound impact.”

  9. John Zussman says:

    Fabulous story, Joan, and weighing in late I was able to enjoy its continuation in the comment thread. It’s also perfect for this prompt. Of course, you positioned yourself for those chance encounters by relentlessly seeking the best for James and refusing to take medical advice for a final answer! I remember, in my psychology training, reading about the theory (by then fortunately debunked) that schizophrenia was caused by “refrigerator mothers.” What a burden to lay on parents trying desperately to do their best in a bad situation.

    I might also remind you of your role in my most important chance encounter. In our junior year of high school, I watched you as pianist for “The Fantasticks” and thought, “That looks like fun.” The next year, you graciously decided to audition for Rosie in “Bye Bye Birdie,” leaving the pianist role to me. Not only did I have great fun, but I also encountered the love of my life (a story I told here: https://www.myretrospect.com/stories/missing-out-on-aruba/). So thank you!

    • Thanks, John! I didn’t realize that refrigerator mothers had been blamed for schizophrenia, too. The late Dr. Bernard Rimland, a Ph.D. psychologist who was perhaps the first U.S. psychologist to debunk the theory of bad mothering as the cause of autism, started questioning the theory when his firstborn son displayed the classic symptoms. He knew for a fact that his wife devoted herself day and night to her infant, who sometimes cried for 16 hours straight, and as a professional, there was no way he could be dismissed as a crazy parent “in denial.” We’ve come a long way in our understanding of many disorders since then.

      Thank you also for referring me to your delightful story about meeting Patti. And you still have the program from our show! You were a far better pianist than I could ever be, and Patti’s choreography was fantastic. Interestingly, I once turned pages for someone who ended up being my boyfriend (although we married other people). I have to say that it was exceedingly stressful and required not only my full concentration but a sixth sense of the exact moment when the page was to be turned as well as the precise hand-eye coordination to make it happen. Bravo, Patti!

      It was great to see you at the Zoom meeting yesterday–along with Conrad Birdie himself.

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