In 2007, my son Jeremy walked the graduation ceremony at the local high school along with the other seniors from his severely handicapped class. On June 18, he will be walking the graduation ceremony again, in the same gold and scarlet robe he wore three years ago. This time however, he will have earned and will receive a full academic diploma. He has a GPA of 3.5. For me, this is unbelievable. Graduating high school was not one of the goals I had for Jeremy. The goals I had were mostly those based on functional living skills.

When Jeremy was diagnosed, I was told to find a good institution for him. I don’t think the medical professional who diagnosed him meant “college,” but that is where he is headed. People ask me how Jeremy made it to this point, and the truth is, there is no short answer. Like most parents, I started out hoping to find that “one thing” that was going to make a huge difference in Jeremy’s life, that would improve his chances of overcoming the challenges he faced. But I soon realized that there is no magic bullet.

Jeremy, now 21, has received numerous treatments, therapies, and educational strategies (some of which he still continues) with acronyms such as ABA, TEACCH, OT, SI, AIT, VT, RPM, and some biomedical interventions including methyl B12, HBOT and more. All of them have helped somewhat, some more than others. But the most important ingredient to Jeremy’s success has been the same that it is for all of us: having the right people as teachers and mentors – people who believe in you, who motivate you to do your best. People who see beyond the label and who are willing to see the person. People who are willing to try different ways of reaching and connecting with the student, when the traditional ones do not appear to be working.

Any tasks requiring motor planning and sensory processing have always been extremely difficult for Jeremy. My office is full of binders that include Jeremy’s task analysis and data sheets for all kinds of skill acquisition such as fastening pants and brushing teeth. When he was younger, many educators and other professionals took Jeremy’s inability to respond as a lack of intelligence, rather than as challenges due to visual processing issues and difficulties in initiating and controlling his motor planning. Teaching methods based on visual strategies did not work with Jeremy. He is not a visual learner, and his visual processing was not working correctly, but no one recognized that at the time.

When he started high school, Jeremy attended a class for the severely handicapped at the local school. When Jeremy’s teacher, Rachel Page, came to our house for a home visit and saw how I was teaching Jeremy to point to letters to spell words. Jeremy had been taught by Soma Mukhopadhyay twice a month, over a period of 14 months, using the Rapid Prompting Method she had developed, and I continued to work with Jeremy using this method of teaching. Rachel tried what she had observed at school and was successful. By then, I had had enough battles with the powers that be to even consider asking them to use an unknown method to try and teach Jeremy. (The year before, Jeremy had come home from the middle school with rug burns on his chest and back inflicted unknowingly by an inexperienced occupational therapist, and had ended up filing for due process when the school district refused to provide training. At the IEP meeting I had requested, the OT said she didn’t need anymore training. No comment.) I had decided to do what I did at home and to just focus on Jeremy having a safe environment at school and coming home unmarked.

Rachel then invited me to the classroom to show her and Jeremy’s paraprofessionals how I was teaching Jeremy at home. At an IEP meeting, it was decided by the IEP team to allow Jeremy to attend one general education class on a trial basis. This was a major victory for Jeremy at this school district at that time.
Jeremy’s most important growth period came over the next three years, thanks to Allan Gustafson. Allan was Jeremy’s second teacher in the SH classroom and is the best teacher that Jeremy has ever had. He helped Jeremy—and all his students—grow not only intellectually, but emotionally as well. To give you an idea of the type of teacher Allan is, read Allan’s assessment of Jeremy for an Individualized Transition Plan (ITP) meeting in 2006. It says it all about the type of person he is:

“Jeremy is a complicated young man who people cannot judge on appearance. A good metaphor would be to describe Jeremy like as an artichoke. Each leaf on the artichoke has to be taken separately, each having its own characteristics. As you go through each layer of the leaves, it becomes more apparent that there might be something inside, something worth getting to. It takes time to get there, but there is a heart inside, worth the time and effort to expose, as some people say is the prize for the patience of delving through the layers of leaves. Jeremy is this man.”

In June 2007, Jeremy was technically a senior and it was time for him to attend the off-site transition program, thus his participation in the high school graduation ceremony. By that time, Jeremy had made it clear that he enjoyed learning, and wanted to continue learning even if he was no longer on a high school campus. Some of his IEP goals by then included preparing him for taking the GED sometime down the line while attending community college. It was clear that he was capable of doing that, although I would never have though that possible a few years earlier.

However, Jeremy did not handle the transfer out of high school into the transition program well at all. Meanwhile, my father was dying from lung cancer and I was traveling a lot to helping him and my mom, who lived two hours away. I wasn’t able to work towards changing the situation. Bruce Cochrane, an administrator new to the school district (now head of Pupil Services), became concerned about the complete change in Jeremy, from a model special education student to a non-compliant, unhappy and disruptive person. Bruce started asking questions, studying Jeremy’s school records, interviewing teachers, observing Jeremy. Jeremy, still considered a transition student, was moved back to the high school where his behavior improved. He continued on a couple of workability projects, but started taking general education classes again.

Then, at an IEP meeting, Bruce brought up the question – was Jeremy interested in working towards obtaining his diploma? According to Jeremy’s official transcripts, Jeremy needed more credits in certain subject areas, and he needed to pass the California High School Exit Exam, which is routinely given to tenth grade students. Students are allowed six chances to pass this test. The IEP team recommended that the test be given to Jeremy the first time as a baseline, if he was interested in trying to get his diploma. Jeremy surprised us all by passing on his first attempt all the parts of the test he was given. However, for some reason, the school did not administer the essay part of the test, and Jeremy had to retake the complete English section of the test a few months later. Again he passed. Since then, he has steadily been taking two classes a semester towards his diploma.

This June, I am doubly blessed. Not only is Jeremy graduating from Torrey Pines High School, his sister, Rebecca, is graduating from the other high school in our area, Canyon Crest Academy. I am proud of both of them, and thankful for the educators that have crossed their paths, not to mention the army of paraprofessionals, therapists, support staff and other professionals who have joined us on our journey. Clearly, there is not one magic bullet. Rather, it takes an army, and we will never forget them.

This article was first published in Spectrum Magazine, June/July 2010 issue.

When my father passed away in 2007, we moved my mom to a skilled nursing facility near our home. Caring for my son Jeremy and caring for my mom—one affected by autism and the other by Parkinson’s—I’m continually reminded how similar their brain processing challenges are. One glaring difference, however, is that my son is gaining in skills (albeit slowly), while my mother is losing them.
As an older parent (I won’t say how old – a lady is entitled to her secrets), I’m now sandwiched between caring for my children, and caring for my elderly mother. The balance of time has shifted, and now it is my turn to look after Maman who once looked after me. In the trunk of my car I carry a change of clothes for my son and adult diapers for my mom.

Both Jeremy and Maman require high levels of support and are nearly the same in terms of stress, worry, and time commitment. Soon after moving my mom down here, I was overseeing my mom’s caretakers, as well as my son’s in-home support staff. That pile of insurance papers I already hated filling out for my son looked small in comparison with all the paperwork following my dad’s death and all that needed to be done for Maman. The number of phone calls I had to make to health professionals, therapists and agencies suddenly quadrupled. And then there were the Interdisciplinary Care Plan meetings in regards to Maman and the Individualized Educational Program meetings for Jeremy.

Sometimes, it feels like I’m not doing right by either of them. Meanwhile, I still have my work to do, with deadlines looming. “Squeeze as much as you can into a 24-hour day” seems to be the mantra around here. Because of course there are the financial worries that having a “Jeremy” entails.

The other day I took Jeremy to visit my mom. When we got there, Maman was sitting in the communal living room, where there is not much living going on. Maman was slumped in her wheelchair, staring blankly at the TV screen. We walked in and greeted her, but she did not respond. Maman was ignoring us.
“Maman, what’s going on?” I asked.
“I’m mad because you didn’t come yesterday,” she replied, refusing to look at me.

The day before, Jeremy’s tutor had called in sick, so I’d had to stay home and supervise Jeremy getting his homework done. Maman doesn’t get that sometimes I have to choose between her needs and my children’s needs. Tough situation to be in, but it is the reality of those of us in the sandwich generation.

I apologized for my absence, but Maman was still pouting. “And Monica didn’t come today.” she stated. Monica is my sister in L.A., a two-hour car ride away.
“Maman, Monica is coming tomorrow, Friday. Today is Thursday. But I’m here now, do you want to play cards with me?” I asked. Maman loves to play cards.
“Non,” she replied.
“Fine, then I’m going to play a game of solitaire by myself.” I pulled out the cards and set up the game to play. Maman didn’t react at first, but after I played a few rounds, she slowly moved her hand, picked up a card and moved it to where it belonged. Good, I thought, I got her interested.

Meanwhile, Jeremy sat at the table, quietly stimming with one of Maman’s little stuffed animals. She keeps them in a bag hanging off her wheelchair, along with the playing cards and a book. As he was stimming, he rocked, and his chair started to slide backwards. Not a good thing considering that very old people in wheelchairs were right behind him. I asked him to budge, but he ignored me, so I got up and pushed his chair back in closer to the table. I sat back down, and Maman was back to staring at the TV screen. I tried to get both Maman and Jeremy interested in the card game, but nothing doing. I pulled out one of Maman’s Paris Match magazines—they both like to read those—but they just sat there unresponsive, each in their own little world. I continued my game of solitaire. There I was with two of my closest family members, and I had never
felt so alone.

Back home, there was a reminder email from Rebecca’s high school about an upcoming meeting. This is Rebecca’s senior year, and there are all these things I am supposed to be doing in order to help her choose, apply, get into, and pay for college. Things are much more complicated now than when I was in high school. Although I know all the ins and outs of special education, I am at a loss when it comes to college prep, and I feel like I am already behind in helping my daughter to navigate through all that she should be doing. Gosh, have I been spending so much time taking care of Maman and Jeremy that I have seriously messed up my daughter’s future? Something else to worry about, and now I will have to skip a visit with Maman to attend this meeting. It’s tough having to choose between being there for your child and being there for your parent.

Every one of these people whom I love and cherish requires and needs my attention. Sometimes I feel overwhelmed and I think, “How did I get here? How did I become the primary caretaker for so many needy people?” And of course just asking the questions makes me feel guilty.

Then it hits me. I don’t want to rush through any of this.  I want to savor the next few years. Spending time with Rebecca is a joy; I don’t want to miss a minute of my teenage girl’s transformation into a young woman. She will be out of the nest before I know it. Maman has only a few years left, and I want to be there for her the way she was for me when I was little. Jeremy is evolving into adulthood, and it is gratifying to see how mature he is becoming. I don’t want to miss a minute of any of it.
This sandwich generation stuff is tough. But soon, my husband and I will be all alone and I’m not sure I’m ready for that. I’m lucky to have all these people to care for, needing me, surrounding me. My plate is very full, and yet that is what gives my life the richness and flavor that makes it worth living.

Relationship Status: Single
Interested In: Women
Looking For: Friendship, Dating,  A Relationship, Networking.
Political Views: Go Obama!
About Me:  I like to listen to music and walk on the beach. I can type with one finger. I have autism.

Jeremy is quite a catch – he’s buff from working out at the gym,  has an endearing personality, and he starred in an award-winning episode of the MTV ‘True Life’ series.  Never mind that he is autistic,  and  needs help with everyday living skills, and probably always will. (In my opinion, he should be looking for a traditional wife who will take care of him, instead of a girlfriend, but I digress).

One night recently I woke up at 3:00 am to find that all the houselights had been turned on. Usually a sound sleeper, Jeremy had been making the rounds.  I heard him downstairs and decided to investigate. He was looking through my husband’s collection of architecture books. He found the one he was looking for, Las Vegas: The Fabulous 50’s, and flipped it open to the section on strip clubs and showgirls. “Why are you up, Jeremy, what’s going on?” I asked. “I’m thinking about girls,” he replied.

Oh, how I miss the prepubescent years when Jeremy was examining the guitars in the music magazines and not the beautiful models holding them. Although Jeremy has been showing an interest in females for some time, he is now communicating that  guitar magazines just don’t do it for him anymore. I long for the days when his choice of reading and viewing  materials ran along the gamut of Dr. Seuss’s ABC and Sesame Street when he wasn’t occupied with his school work.

The show that finally got his attention away from Big Bird is Entourage, which is basically a show about how four  good friends from the East Coast now living  in LA try to get laid and avoid relationships in between acting gigs.  There is a lot of eye candy for the guys on here (and the male actors are not so bad-looking either). Dusty, one of Jeremy’s tutors, nicely offered  us the DVD of the first season as a gift.  Jeremy got  hooked. When asked what he liked about it, Jeremy spelled out, “I like that they are good friends.” So  I bought him Friends, which I thought was a little tamer but still dealt with friendships, but after  watching two episodes, Jeremy  didn’t want to see anymore. Frankly, there isn’t enough female nudity to keep his interest. I guess it wasn’t the male bonding between the main characters on Entourage that he was focusing on.

My main concern for Jeremy up until now has  been where will he live, what can he do to earn money, what will happen when my husband and I  are no longer alive. Not a week goes by when I don’t think about this and research the possibilities and create possible scenarios in my mind. He is now 20 years old, the same age as the young adults  I worked with in a state institution for the developmentally disabled,  years before Jeremy was born (I guess you can catch autism by osmosis). It is one thing to help  people with autism and their families with the emotional detachment of a professional; it is quite another to be caring for and planning for your precious child. Because at the end of the day, it is the parents who are responsible, and it is difficult emotionally as well as practically to try and create a future for your loved one. Already just thinking of providing the basic necessities of  food, shelter and work for your loved one with autism is a constant worry (unless he is a trust fund baby). But loving caresses, physical intimacy, love, and a relationship with someone who is with you because they choose to be, not because they are related to you – are also  basic necessities, the kind you can’t pay for even if you have the money.  I am not immune to the  sadness embedded in the  emails  from  parents of young adults writing to me for advice, asking for answers; asking me  what they should do, how are they going to cope.  I feel their pain, my heart aches as it mirrors my own distress.  We  have barely enough energy to make it through an autism –filled day,  let alone plan for the tangible – and less tangible -  future needs of our children.

My son learned  to communicate by spelling out on a letter board and has been doing it now for about 4 years.  The way he  describes what autism is like for him,  it sounds like a less severe form of  “locked-in syndrome,”  similar to what  Jean Dominique Bauby, the editor in chief  of Elle suffered.  Bauby, had a stroke and lasped into a coma and when he woke up he could move only his left eye.  He wrote his  memoir The Diving Bell and the Butterfly, blinking out a code representing the letters of the alphabet presented to him on a letterboard.

Jeremy is clear about what he feels and thinks.  “Being severely autistic means being stuck in a body that doesn’t work well with no way to communicate.  People ask do I feel emotions. Yes I do, I just can’t show them. Like when my mom helps me I am really grateful, but I can’t get my face to move. You know autism is very different from being retarded and the difference is that  nothing seems different to me.  I am the same as you  inside.  I can’t control my body but I am smart.”

Before my son could communicate his feelings, I had no idea how he felt about people and relationships. To look at his body language, which he can’t really control, you would think he does not want to be around people. Yet, he wants to connect so badly with people his own age and he  struggles to find ways to communicate this. His quest to connect with friends was effectively documented on MTV:  Jeremy  masters assistive technology  in order to have  a voice, yet  has difficulty  staying in a room full of noisy people at his own party.

On his 19^th birthday,  Jeremy let me know for the first time that he was unhappy with his birthday presents. When I asked him why, he spelled, “ I want a cell phone.”  “What do you want with a cell phone? You are nonverbal,”  I exclaimed. “I want to text my friends,” he spelled. He sees how adept his younger sister, Rebecca, is at connecting with her friends via text, and he was hoping to do the same. This cell phone business has been difficult. Those little keyboards are not easy  considering the  visual processing and motor problems my son has. And the only real friends he has (sadly) are his tutors. But, I know he is lonely and wants to connect. So he got a cell phone.

Since Jeremy keeps bringing up girls, I suggested  he join Facebook and work on his communication skills, as this is important for any kind of relationship. “Do you think I will really find a girlfriend on Facebook?” he asked. “It’s not that  simple, but you will meet people and you can connect with others right from your home and practice communicating,” I told him.  Now, he goes on Facebook about every other day with one of his tutors. He likes to see if he has any friend requests and to comment on what he is doing.

What are you doing right now?  Jeremy is thinking the girls at the gym are hot.

Mark,  one of his tutors,  suggested  that Jeremy start working out. He  took Jeremy  to check out  different gyms.  Once they had narrowed down their search, Jeremy and I went  to discuss membership terms. When it came time to ask questions, mine were the usual, “What is the initial membership fee? What will the monthly payments come to? ” I asked.  Jeremy’s questions at the first place were a bit different. “Are the girls nice here?” he spelled out. “Are they pretty?”

As we arrived at the second place, LA Fitness, the doors flew open and more than a dozen gorgeous, shapely young women came running out. Jeremy was all smiles. We walked in and the  receptionist said “You’ve just missed the Charger Girls! They just left.” Jeremy was even happier – a Charger Girls poster is  the only athletic memorabilia hanging  in his room.   “I like this place! This is where I want to come workout.” commented Jeremy.  Jeremy got straight to the point with the salesman. “Do the Charger Girls really work out here? Are they good at sports? What is their schedule?”

Jeremy joined LA Fitness, and goes regularly there with either Mark or Troy, another tutor. This past  Christmas,   Jeremy  spelled out “I want to buy a calendar with pictures of girls for Troy,”  he spelled. “Uhhh…. OK,  ask Janine to take you to the mall,” I replied. Jeremy is, after all, over 18.  Sure enough, Jeremy  came back with a calendar aptly titled “Hot Buns.” I’ll leave the rest to your imagination. I’m sure he was inspired by the Charger Girls.

When Troy  came over the following Wednesday as usual to take Jeremy to the gym, Jeremy gave him the calendar. Now,  Troy  is an ex-Navy guy, single dad of an 8-year-old girl, and works in a middle school classroom for students with aggressive behaviors. He is not your shy,  withdrawn type. However, he looked perplexed when Jeremy handed him the calendar. “Jeremy, thank you, and I’m honored you thought of me, but why are you giving me this calendar?” Jeremy rocked excitedly back and forth and spelled out, “Because you are the best tutor to help my mom understand she needs to find me a girlfriend.”  “Jeremy, I know you need a girlfriend, the question is how to find one,” I said. “Troy is the best tutor to help,” insisted Jeremy.

I asked Jeremy what he wants in a girlfriend. “When I think about having a girlfriend I am thinking about sex,” he explained.  I asked, “Is sex all you think about?” “That really is not the main thing. I want a relationship. I want to have someone to talk to and laugh with,” he replied.

We have discussed a lot about what it means to have friendships and relationships and the meaning of love and how that is different from just having sex. He is beginning to understand the complexity of how it is not that easy and that, yes, being autistic and all that entails for him, it will be difficult. But that even without autism, having a loving intimate relationship with another person is not a given. “I think finding love is not easy for anyone. What I mean is that most people greatly search for love but do not find true love. I know this because I frankly see that my aunt is not married and she is a great person.”

I ask him, “What does love mean for you?”  “Love for me means that someone likes my way of thinking about life and the same philosophy about living. Love is not a prisoner but it makes you realize that you care about this person more than anyone else.”  I could not have said it better myself.

While Jeremy  has his eye on Entourage for inspiration, I have my sights set on Big Love. Having three wives, a 3-house suburban home, an extended family and strong community ties  – it sounds like a better model for what Jeremy’s future should look like. With three wives, Jeremy would have the love and intimacy he craves, and the  women would have plenty of respite.  This arrangement would also solve the housing  problem and our worries about what will happen when his father and I are no longer alive. For now, I keep searching for ways for him to connect and relate with  people, and to keep alive the flame of hope he carries in his heart that one day, he will find true love.

This article first appeared in Spectrum Magazine February /March 2010 issue.

The first time I heard  Dr. Bernard Rimland’s name  was the  day after a visit with my son to a psychoanalyst  for the only treatment on offer for autism  in Paris at the time. The bookshelf in the  waiting room   included  a few copies of ‘The Empty Fortress’ by Bruno  Bettleheim,   who believed that autism was a reaction to bad parenting and expounded  the ‘refrigerator mother’ theory of autism.

Dr. Rimland’s  book,  ‘Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior’(1964),  would have been a  better choice in this psychoanalyst’s  waiting room. In his book,  Dr. Rimland  lambasted  the then generally held view that autism was a psychological disorder, brought on by cold and unloving parents. His conclusion was  that autism was the result of   biochemical defects underlain, perhaps, by a genetic predisposition, but ultimately triggered by environmental assaults. This book grew out of the research he did searching for answers when his son, Mark,  born in 1956, displayed behaviors which are now easily recognizable as symptoms of autism but were rarely seen in those days.

The psychoanalyst I visited informed  me that  my son had autistic behaviors due to separation issues from breast feeding. This she  gleaned form watching my son play with two round objects, and  crawl across the floor  in an attempt to retrieve  one that he accidentally dropped.  Following this Allen Woodyesque moment, and looking for some  useful advice, I called an old friend and former colleague from a state hospital  for the developmentally disabled in California.   She gave me the telephone number  for  the Autism Research Institute, the non-profit  founded by Dr.Bernard Rimland in 1967.

Many  are familiar with  Rimland and know that his autistic son, Mark (now 50 and an accomplished artist),  was the impetus for Rimland making the field of autism his life’s work,  yet few know from where he got his unrelenting fighting spirit.  It most probably came from  one of his maternal uncles.  Rimland  once recounted to a journalist from the San Diego Jewish Journal, “My mother used to tell me about one of her brothers who was a mathematical genius. During the war [World War I], an elderly  Jewish gentleman was being harassed by German soldiers. My uncle interceded because he couldn’t stand the injustice. The soldiers beat him and left him there, bleeding to death. My mother would finish this story by telling me, ‘So don’t be like him!’ Instead, it inspired me to fight injustice.”

Dr. Rimland was born in Cleveland, Ohio in 1928. His parents were Russian immigrants who met in Cleveland, married and had a son and a daughter. World War I precipitated their move to the US, and it was another world war that precipitated their move to San Diego where his father had a metalworking job with Convair.   From the minute he  arrived  at age 12, Rimland fell in love with San Diego. He once told a reporter “Cleveland had been muggy and dirty. I got here and said, ‘This is heaven, I’m never leaving.”

Although a college education was not considered a necessary or worthwhile pursuit by  his blue-collar family, both Rimland and his sister went on to attend college and to earn graduate degrees. His sister earned a Master’s degree in education and Rimland earned a Master’s in psychology at San Diego State University. For those familiar with Rimland’s work and his fascination with research, methodology and the search for truth, it will come as no surprise that Rimland went on to earn a doctorate from Penn State in experimental psychology and research design.

In 1951, after college,  Bernard married Gloria, the sister of a childhood friend. In 1953, after he received his Ph.D. he worked  with the Navy at its Personnel and Training Research Laboratory in Point Loma, San Diego as the director of the Personnel Measurement Research Department.

When his son Mark was born, their tranquil  life changed. “From the moment Mark was born, everyone noticed he was different,”  Rimland  recounted to  a reporter. “He was always screaming at the top of his lungs and nothing would placate him. But no one knew what it was. The pediatricians threw up their hands.”

His wife, Gloria, remembered having read in one of her college textbooks about a child wandering around, staring into space, and appearing not to recognize people. Rimland’s first step into   autism  was into  their garage to find  that textbook  packed away in box with other college momentos. In the book he found the term ‘infantile autism’ that described the characteristics his son was displaying.  Rimland began studying the disorder, only to find that autism was blamed on ‘refrigerator mothers’  by most of the scientific community, mostly due to the work of Bruno Bettelhim.  Knowing that Gloria was an affectionate and caring mother  to Mark and his siblings (one brother and one sister) Rimland found this to be ridiculous. As a scientist, he decided to research everything that was out there on the topic.

For five years Rimland  researched  autism in the evenings after his Navy job, long before the internet and faxes, when even photocopy machines were not easily available. “When I started my quest, autism was no less than an obsession,” he once  wrote.  “I quickly read everything I could find on the subject and hungered for more. This was war. I envisioned autism as a powerful monster that had seized my child. I could afford no errors.”

At the end of five years he had about 400 pages of information amassed. He thought of publishing a paper, but his wife, Gloria, told him he had enough to write  a book. Although the  medical community for the most part ignored his book ‘Infantile Autism’ when it was first published, it is now considered a classic by doctors and psychologists (although perhaps not by French psychoanalysts). An interesting tidbit: ‘Infantile Autism’ was very popular with psychology students and Rimland was once told by a librarian that it was one of the most stolen books off the shelf.

After his book was published,  Rimland started   receiving hundreds of letters and  phone calls   from parents  searching  for answers concerning their children. After  work at the Navy every day, he spent hours  replying to  these queries.  He then started the nonprofit Autism Research Institute (ARI), originally named   Institute for Child Behavior Research,  in order to share the latest information on autism research with those interested. The ARI   became a worldwide network of parents and professionals concerned with analyzing the scientific data for diagnosing, treating and preventing autism.

Dr. Rimland was often at odds with the medical establishment and in the middle of controversy. He was  one of the first  to  conclude that the United States was undergoing an epidemic of autism, that diagnoses rates were climbing, and one of the first to state that mercury and vaccines as well as other environmental and dietary triggers could be a primary culprit in autism.

One of the first treatments investigated by Dr. Rimland was high dose vitamin B6 therapy, and he did this based on reports from parents of autistic children. Stephen Edelson, Ph.D,   Dr. Rimland’s close friend and colleague for many years and now Director of ARI,  told a reporter, “One of the most remarkable things about Dr. Rimland is that he realized in the early days that parents held many of the keys to solving the mystery of autism. From day one he listened to them and respected them – and he followed their lead.”  He went on to say that  ‘It’s a key reason why ARI has always led the way in identifying treatments and uncovering the roots of autism.”

Rimland  was always  putting people he knew in touch with one another if he thought they had something in common besides autism.  After a while, I got used to receiving interesting calls from people  in different time zones telling me  Bernie had given them my phone number.  Whenever  I  heard my fax machine after 10:00 pm, I knew it had to be Bernie sending me a document with some comments scribbled in the margins, either a sardonic remark or an observation about  the contents of the document.  I knew the phone would ring next, and it would be Bernie, wanting to discuss the fax.

One of Rimland’s major talents and accomplishments  was  taking an idea,  getting people together, and putting  that idea  into action.  In the 1960’s he started what is now the Autism Society of America with a few other parents in order to share information, provide moral support and, in large part,  to promote applied behavior analysis – then known as behavior modification.  In the 1990’s Rimland brought together leading researchers from different fields and created a think tank from which grew  the now  worldwide Defeat Autism Now! movement.  Today, DAN! conferences take place a few times a year providing information to parents and training to medical professionals. Currently there are  hundreds of DAN!  trained physicians experienced in biomedical interventions. The idea that ‘autism in treatable’   is an off shoot of the DAN movement and part of Dr. Rimland’s  legacy to all  impacted by autism and their family.

Another of his many accomplishments is serving as the technical advisor to the Oscar-winning film Rain Man (1988). Although it is true that not all individuals with autism have an incredible talent as depicted in this movie, the film created much  awareness about autism in an era when few people had ever seen a person with autism.

Despite all his long hours and importance  in the autism community, Rimland   was always available to   provide encouragement to others, including unpublished and unknown authors.  Although I had contacted the ARI a few times since I was given his  phone number those many years ago in France,  Bernie did not know me personally. Yet, when I sent him my book proposal for  ‘Autism Spectrum Disorders’ hoping for  some encouragement, he called me as soon as he received it and read it. It wasn’t late at night, but it was a Saturday ( the day after I had mailed it), and I remember my disbelief as I heard on the other end of the line “This is Dr. Bernie Rimland.  Are you Chantal? I just got your book proposal and I had to call you right away. This needs to get published. What can I do to help?”

When I first visited Rimland in  his office  in San Diego, I walked  by it a few times before realizing that this dusty  old storefront is where he waged  his daily battle against autism. The storefront  is on Adams Street which is a gentrified and trendy part of town.  ARI fits right in with  the antique book stores,  the vintage   movie theater  and  hip restaurants. Trendy, Rimland was not, but his ideas, the work he generated, the research he supported and published, were. This is where new educational therapies, biomedical treatment and dietary interventions were discussed and where Defeat Autism Now! (DAN) had it’s beginnings.   Inside, the disarray – piles of documents and boxes that covered every inch of floor and desk space -  made me wonder how a man whose office  looked so rumpled and disorganized  could produce such detailed and exacting work. Perhaps the answer lies in what he told a reporter  at the San Diego Union Tribune in 1988, “I will never stop until I have found the answer or die, which ever comes first. I will find the answer, and if living to be 150 is what it takes – I’ll do that, too.” Obviously, Bernie was a man on a mission to defeat autism, and he had no time for the details of every day life such as filed papers and a clean office..

If San Diego feels a little empty  now that Bernie is no longer here, I take comfort in knowing that  his family and ARI are. It is thanks to Gloria, his dedicated wife who took care of Mark,  his siblings and the household schedule,  that Dr. Rimland was able to devote so much of his waking time to research.     At ARI, autism research and sharing of information continues.  Dr. Stephen Edelson,  who   relocated  to San Diego in May 2006,  is now Director of ARI, and    Matt Kabler, Rebecca McKenney,  Mallie Odle, and Sue Field  continue to keep  ARI operations going.

In Paris, this past December, for the fist time, an international conference covering both biomedical treatments and applied behavior analysis took place, organized by the only DAN doctor in France. I miss Bernie, but I take comfort in knowing that before  he passed away, he knew  that his work  was reaching and helping families in this country where the   ‘refrigerator mother’  theory of autism is still  accepted. Marian Wright Edelman,  Founder of the Children’s Defense Fund, once said: “You really can change the world if you care enough.”  Thank you, Bernie, for caring enough, not only for your son  but for all of us.

This was first published in Spectrum Magazine,  January 2007

Author explains making the transition  from school years to adulthood

BOOKS   by Liz BcBreen

The unemployment rate among the special needs population

has been at 70 percent for the past 12 years. This

is according to a study that was conducted by the

President’s Commission on Excellence in Special

Education in 2002. The commission gathered this data as

it was researching what works and what does not work

when it comes to transition programs.

Chantal Sicile-Kira is being proactive about bringing

this unemployment rate down among young adults with

special needs. Her company, Autism: Making a

Difference, is dedicated to preparing teens with developmental

disabilities for their futures. Every day, Sicile-

Kira is developing innovative ways to equip young adults

with the knowledge and skills they need to thrive in the

working world.

The special needs arena is familiar one for Sicile-

Kira. For almost 20 years she has been involved in the

community both as a professional and parent. While an

undergraduate, she took a job at Fairview State Hospital

working with autistic people. There she not only found

her professional calling, but she began gathering information

she would one day use in her personal life. Twelve

years after she took the job in California, her son Jeremy

was born. Eventually, Jeremy was diagnosed with autism.

Sicile-Kira had already become a strong advocate and

educator in the autism community, and she began to put

her own advice into action. Now she’s offering her years

of experience to others who do not have a handle on what

comes after early intervention.

The transition from high school to college or full-time

job placement is one of the most important in anyone’s

life. It is especially challenging for those with special

needs. Why then, do they receive so little transitional

planning? Sicile-Kira is trying to raise awareness about

this issue through the work of her company as well as

through her new book, Adolescents on the Spectrum: A

Parents Guide to the Cognitive, Social, Physical and

Transition Needs of Teenagers with Autism Spectrum

Disorders. According to Sicile-Kira, “we have to make

sure people have the right training and information out

there. People have to start thinking outside the box. We

have to start thinking about unemployment not from a

social worker mentality but from a business point of

view.” Sicile-Kira is concerned about what the lack of

training and options will mean for the “baby boom of

autism.” Currently, the largest group of children with

autism is ages 7 through 9 – about 10 years away from

attending college or entering the workforce.

Most of work that Autism: Making a Difference carries

out is based on finding a young person’s interests. For

many children with Asperger’s syndrome and autism,

there are work opportunities out there. The key is to find

what will interest the individual and then encourage the

interest in a constructive manner. Sicile-Kira cites Steven

Shore as an example of this work. Shore is a leader in the

autism community and an author. He also promotes selfadvocacy.

As a child, he was diagnosed with autism so

severe that doctors thought he should be institutionalized.

At a young age Shore began taking things apart and putting

them back together. This is how he passed many

hours. Eventually, he became so familiar with the

mechanics of certain objects that he got a job in a bicycle

shop during high school. “Somewhere along the way, he

learned to transfer these skills,” says Sicile-Kira. “I don’t

know if he had a mentor or did it by himself, but he was

able to use an interest and talent to get a job.” Sicile-Kira

has developed an effective strategy for achieving this

goal, even when it is difficult to find where a child’s

interest lies.

Jeremy, Sicile-Kira’s son has severe autism. She could

not pinpoint a certain interest Jeremy had, so she found a

need in the community. During the past school year,

Jeremy sold flowers to his peers and teachers at his high

school. In the process, he learned about profit and loss,

marketing and how to be an employer.

Every week, Jeremy collected his orders, which were

placed on Monday. Near the end of the week, he bought

flowers and prepared them for presentation. On Friday,

he delivered the orders. Because Jeremy has sensory

issues, it was sometimes difficult to work in the noisy

high school environment. When he couldn’t make his

deliveries, his aid assisted him. In essence, his aid

became his employee. The aid received payment, and

Jeremy learned that if he used the help of an employee,

he earned less money.

Sicile-Kira first came up with this idea for mentoring

towards talents when she came in contact with the creators

of IncomeLinks. Doreen Rosimos and Darcy Wilson

have developed a program to help individuals with developmental

developmental

and other challenges begin their own microenterprise.

When Sicile-Kira thought about this idea in

relation to Temple Grandin’s book, Developing Talents,

the entire concept began to take shape. When encouraged

by a mentor, someone with a developmental disability can

“find their niche” and at the same time, improve their

executive functions and build self-esteem. In fact, one of

the major impacts of her work so far is the increased selfesteem

Sicile-Kira is seeing in the people she mentors.

Her goal was to get young people into a suitable work

environment, and the increased confidence has become a

welcome by-product of her work.

Just as her company is broaching new territory, so is

Sicile-Kira’s new book. “There was a gap in information

in terms of hygiene, puberty, preparing for life. This fills

that gap” Sicile-Kira explains, “After early intervention,

the high school years are the most important and very few

people talk about it.” The author’s first book, Autism

Spectrum Disorders: The Complete Guide to Understanding

Autism, Asperger’s Syndrome, Pervasive Developmental

Disorders and other ASDs, included some information on

adolescence, “but then I realized there was so little out

there. Some kids are being cured and recovered, but the

vast majority are not.” Sicile-Kira wanted to give parents

and educators the tools they need to help children move

into the next phase of their lives after high school.

It was when Jeremy was in middle school and high

school, that Sicile-Kira found herself with little support

and few resources to assist his development. As Jeremy

moved up through grades at his school, she did not feel

he was getting the kind of guidance he needed. One of

the crucial factors in creating a future for a young adult

with developmental disabilities is to develop an

Individualized Transition Plan (ITP). These plans are discussed

in detail in Sicile-Kira’s book.

The ITP should become part of a child’s Individual

Education Plan (IEP) by the age of 16, Sicile-Kira

explains. “The ITP is the ‘business plan’ for the teenager’s

life. The mission statement should reflect the student’s

dreams and aspirations. The goals should tell you

how to get there and what is needed to make the dream a

reality.” The ITP should include plans for what students

are learning in the last years of high school and what

agencies will help him achieve his or her goals after high

school. “It’s important for parents to recognize that this is

a very important tool,” says Sicile-Kira. “I realized that a

lot of parents just didn’t know about it. When children

graduate, they might have a diploma, but many do not

have the life skills they need.”

Another facet of the ITP is living arrangements.

Parents need to consider the future and children need to

learn the life skills they will need to function in whatever

kind of living arrangement they choose for themselves,

according to Sicile-Kira. Ideally, every child should be

given the tools needed to become as independent as possible.

All of this information can be captured in an ITP, and

the goals of the IEP should be written towards the ITP.

It is also important to allow a child to have as much

input as possible when it comes to the ITP. If he or she

has any interests or hobbies that may lead to a job after

school, or has an idea as to what kind of job they want, it

should be noted in the plan. If a child does not know,

assessments should be done in order to pinpoint his or

her interests.

In addition to many parents not knowing about the

ITP, Sicile-Kira feels the ones who do often do not know

what question to ask. “Everyone talks about early intervention,

but people are not focused on the future. When

they are young, parents of course should be focused on

getting them better, but at some point, you might realize

that your child is not going to recover completely.” Sicile-

Kira adds that this is not to say that children ever stop

learning or that parents should give up. But, if recovery

never occurs, parents need to find a way to help their

children lead a fulfilling life.

Sicile-Kira says that feedback on the book has been

positive. Parents say they glad to finally have a resource

that deals with their main concerns. For many, these

include creating a meaningful ITP and planning for the

future. Another major concern for parents is how to

address hygiene, puberty and sexuality. In her book,

Sicile-Kira addresses these topics in a straightforward

and open manner. “All children nearing adolescence

need to have an understanding of what is going on in

their bodies and how to take care of themselves. Children

with ASDs need even more information and input from

parents at this time, and need to be taught specifically

about puberty and all it entails.” The author goes on to

explain how to teach your child about his or her body

while considering their chronological age and maturity

level. She offers areas of discussion that can be simplified

or built upon, depending on what your child already

knows and how he or she communicates.

An essential aspect of raising a child with developmental

disabilities is to teach them to be as independent

as possible, according to Sicile-Kira. An important part of

this task lies in teaching your child about good hygiene.

“Cleanliness is a contributing factor to self-esteem,” says

Sicile-Kira. “Most tweens and teens on the autism spectrum

do not independently learn what they need to know about hygiene

and self-care. Although it is best to start

teaching about hygiene, health, and self-care before

puberty, it is never too late. The goal is to teach teens to

be as independent as possible in these areas.” Sicile-Kira

suggests several ways to teach your child hygiene skills.

One is to make a schedule of when and where self-care

should take place. The author also discusses how to teach

these skills when your child has difficulty with sensory

issues. Another topic on which the author advises parents

is the necessity of teaching your child about relationship

boundaries. Often, children on the spectrum have

been taught to follow instructions – especially those

given by someone with authority. Children need to be

taught not to follow directions when they are dangerous

or inappropriate.

Whether they have a child with a developmental disability

or not, a discussion on sexuality is one that some

parents would rather leave to educators. Sicile-Kira urges

parents to take responsibility for this aspect of their

child’s upbringing. “It’s a sensitive subject because of all

the different religious, philosophical and ethical beliefs

that affect what our thoughts are on sex education and

what is taught in school and how it is taught. As parents,

you are responsible for your child’s ethical and religious

upbringing. Before teaching or explaining to your tween

or teen about sexuality, parents will need to reexamine

their own ideas and attitudes about sex, sexuality, and

what they believe teenagers should know.” Sicile-Kira

offers tips and additional resources that will help parents

have open and honest conversations with their children

about sexuality.

One of the ways Sicile-Kira is making her message

and strategies known to parents and educators is through

her Internet radio show, “The Real World of Autism with

Chantal.” The show discusses practical issues that face

parents and caregivers of autistic children every day.

Sicile-Kira interviews experts and community members,

takes audience questions and offers resources. The show

airs twice a month in English and once in French on

Autism One Radio. For more information, visit

www.autismone.org/radio. The author and advocate also

wants to start a non-profit organization that focuses wholly

on developing transitional plans for children with

developmental disabilities.

When she considers the success that she has

achieved with her son Jeremy, Sicile-Kira cites several

factors. Most importantly, she refused to believe that he

could not learn and never gave up on him. She learned

everything she could about autism, therapies and treatments.

She surrounded herself with people who

believed in Jeremy and who were interested in helping

him learn, and she never lost sight of the fact that it is

never too late to learn life skills and independence.

These tenets allow Sicile-Kira to carry out her mission

of helping her son and those she mentors to live a life

as independentl