Preparing for The Real World of Work

February 2, 2009

“Jeremy does not like jobs with physical activities but likes to work with ideas and be able to tell others what to do…. As the case manager, I see Jeremy’s strong assets like working data, communicating with people to purchase/buy/manage a business. He is able to do gross motor activities, but often finds fine motor activities difficult and frustrating. Jeremy needs more opportunities exploring jobs and finding out what he would do to have fun and earn money.  These last two ideas are very important to Jeremy.”

– Allan Gustafson, Interview with Jeremy Sicile-Kira, Transition Year 07-08

Like all parents, my husband and I worry  about our son, Jeremy, and what his future will look like. Jeremy is now 20 years old, and with  the economic situation being what it is, we are doubly concerned about the financial aspects of Jeremy’s  life as an adult. But as the saying goes, worry gets you nowhere – fast. Preparing, planning and creative thinking is a better alternative to wringing our hands.

When thinking about employment for your child or student  on the spectrum, there are a few  aspects that need to be focused on:  the life skills he or she needs to learn; a clear understanding of what employers look for in an employee; the interests and strengths of the person on the spectrum; the usefulness of mentors; and the different employment structures currently available.

Necessary Life Skills

In my latest book, Autism Life Skills : From Communication and Safety to Self-Esteem and More – 10 Essential Abilities Every Child Needs and Deserves to Learn, the ten skill areas covered are important for all aspects of life, whether  at school, at home, or in the community. Some of the skills  such as self-regulation, independence, social relationships,  and self-advocacy are  important  for getting and keeping a job. The topic of earning a living is the last chapter in my book, because being able to get and hold a job  is really a culmination of  all the life skills  hopefully learned during the school –age years, whether a person is on or off the spectrum. For example, for someone to be accepted in a workplace, they must be able to control their emotional and sensory meltdowns. A certain amount of independence is needed at most jobs. Understanding that you should speak to your boss differently than you would to  a colleague is important to know in most work situations. Self advocacy skills are  necessary in order to request what you need to get the job done.

Life skills in general  should be broken down and translated into IEP goals and objectives, especially during middle school, high school and  transition years. Obviously, everyone is different and the skill level reached for each of these skills is different depending on the person, but every student needs to learn a minimum in order to live and work in the community.

What Employers Look for When Hiring

Too often,  when  looking for a job placement for  a person on the spectrum, people take the approach of asking for handout, or a favor. We need to  approach this differently. I took a look at the top 10 skills and attributes most employers  look for as identified by the Bureau of Labor (Job Outlook, 2003) and I discovered that many of those attributes are attributes people  on the spectrum have, yet rarely do we sell those attributes to prospective employers. Here’s  the top ten of what  employers look for: honesty and  integrity; a strong work ethic; analytical skills; computer skills; teamwork; time management and organizational skills; communication skills (oral and written); flexibility; interpersonal skills; motivation / initiative.

Now, many of you reading this are probably  focusing on the skills in this list your child or student does not have. Look at it again, and think about what attributes your child does have. For example, most people on the spectrum are honest to a fault – they are usually  the ones in the store saying “yes” when a woman trying on a dress says “Does this make me look fat?”  They are not the employee who will be caught with his hand in the cash till.  That’s a positive point to sell. A strong work ethic applies to most of our guys – the ones who do not like a change in routine and are going to be there rain or shine. They will not be calling in sick because they had one too many martinis the night before, or leave early because they have an event to attend.  Analytical skills are really ‘obsessive attention to detail,’ and many of our children have that. The child who likes to line up blocks and trains probably has good organizational skills. Teamwork and flexibility are difficult areas for many, but we should be teaching flexibility at school (there are ways of doing that), and teamwork can be handled by ensuring the person on the spectrum has one person on the team that he is in contact with for all needed  information. Many of our children with Asperger’s are good communicators, and some have become journalists, speechwriters and professors.

The point is, when people are selling a product and/ or service,  they market the positive attributes,  not the negatives. And that’s precisely what we need to be doing with any prospective employees on the spectrum.

The Child’s Interests and Strengths

It is extremely important to consider what your child or student likes or is passionate (ie obsessed) about and figure out how that can help him earn money. In most cases, people on the spectrum can be difficult to motivate – unless it involves something they are really into. For some, it is quite obvious what they are particularly interested in because they don’t let you forget. The trick is to figure out how to use that interest and turn it into a moneymaker, or to find a career field that can use that particular interest or talent. That’s where mentors come into play (more about that later).

For most on the spectrum, a job will be their one connection to the community, and their main activity. If a neurotypical hates his job, he usually has another aspect of his life that is bringing him pleasure – his family, his church, athletic activities. However, most on the spectrum do not have family or friends or many outside groups they belong to, so it is important to help them find work that will fulfill them in some way.

There are those for whom it is fairly obvious what they are passionate about. For many like my son, Jeremy, it is a much less obvious. There doesn’t seem to be anything he is particularly obsessed about  that could lead to employment.  He used to love to spin tops (physics researcher?), and to follow the patterns in carpets and floor tiles (carpet checker in a rug factory?), now he is mostly focused on communicating about girls with his support people (beauty contest judge?). However, by having different people work with him or observe him in different environments, we have been able to come up with ideas to try out, and jobs  to avoid.

When thinking about Jeremy’s future money- making potential (either in a job, customized employment, or self-employment), we thought about the different strengths and weaknesses Jeremy had.  The questions we asked ourselves  are the same that most people should consider when helping someone on the spectrum who is considering employment. For example, we asked:

  • What is Jeremy usually drawn to?
  • Is there a particular  subject area or skill area that  Jeremy excels in?
  • What, if left to his own devices, does he like to do most?
  • What motivates Jeremy to do what he does?
  • How successful is Jeremy at  self-regulating? Does he need to work in a place with low sensory stimulation?
  • What kind of situations cause Jeremy to feel anxious?
  • What do Jeremy’s organizational or multitasking skills look like?
  • Does Jeremy do better in crowded environments or when there are fewer people around?
  • Does  Jeremy like moving around, or staying in the same place?
  • How many hours a week of work can Jeremy handle? Will he be ok with a 40 hour a week job, or does he need a part time job?
  • Does Jeremy like routine and the stability of  doing the same thing every day, or does he like change?

Jeremy is interested in the concept of self-employment and did well in two self-employment experiences he tried in high school.  He had a lot more control over his environment and what his daily tasks consisted of then he would have had in a regular employment situation. However, if he were to apply for a job, there are  many questions he would need to ask an prospective employer (or someone would have to ask for him)  during the interview process to ensure a good fit between himself and the job as well as the work environment.

The Importance of Mentors

Mentors can help figure out how to turn an interest into a job, or  into a means to earn money. Temple Grandin (Thinking in Pictures; Developing Talents) speaks often about the importance of mentors in helping to turn interests into marketable skills.  That is what helped her become the success she is today.  Temple had mentors  from her science teacher at school to her aunt, from family friends to colleagues who were crucial to her success. If your child appears to have skills or  a real interest in a specific area,  someone  who works in that field   can help  the child  realize the application of his interests.  Parents may realize their child’s talent, but not know all about a certain employment area.

For example,   a child may enjoy spending hours on the computer, but  his parent who is a taxi driver or a school teacher or an attorney, may  not know anything aobut the field of computers and employment possibilities. Someone who works in computers – perhaps a tech guy the family knows-  can give insight to what is  applicable  to someone with  that child’s talents.

Mentors can also help a student feel valued as  that person will be interested in the same topic he is and will enjoy hearing what the child has to say, whereas family members  may be tired of hearing about a topic they have no interest in.

Different Employment Structures

There are different employment structures currently available and by analyzing a person’s strengths and weaknesses, likes and dislikes, and by asking some of the questions above,  a clearer idea of what could be a good match with the person on the spectrum is possible. There is full-time work, part-time employment, seasonal work, year round employment and so on.

Other less traditional structures  are becoming more popular, and this is probably in response to the realization that most adults with disabilities are unemployed. In 2002,  unemployment figures for disabled adults hovered at 70% and had done so for the previous 12 years (2002 Report by the President’s Commission on Excellence in Special Education).   This report showed us that besides needing to do a better job of preparing our students for employment, meant we also had to start looking at other employment structures more conducive to individual employee needs.

One  less traditional structure  is customized employment, which  means that the work is tailored to the individual, not the other way around. It can mean job carving, where one job is carved up into different tasks  and shared by several people, giving each employee the part of the job they enjoy or excel at the most. Another type of customized employment is self-employment, which is sometimes referred to as micro-enterprise and  which basically means having your own business or being self-employed.  This can be a good  option for those who are having a difficult time fitting into  regular paid positions, or when there is no position available. This option is gaining popularity in the US as well as in the UK.  For some examples of self-employment initiatives by people with developmental disabilities,  visit http://www.incomelinks.biz/projects.htm.

Self Employment as an Option

Although I would encourage Jeremy to try  an employment opportunity that seems like a good fit, I am not holding my breath waiting for that job to show up on the horizon. I am not convinced that that much has changed since 2002 in the job market in regards to hiring disabled people, and certainly with all the neurotypicals now jobless, I don’t anticipate a huge rush of employers looking to hire my son.

I became interested in the concept of self-employment or micro-enterprise  when Jeremy was not offered any  work experiences during his first few years of high school, about 5 years ago. The workability person at the time felt that Jeremy was not ready for any of  the job options she had in the community.  His teacher, however, felt everyone, including Jeremy, had potential, and was open to creating a self-employment experience under workability. At that time, Jeremy could not communicate as readily as he can now, and so we had to  come up with ideas based on observations that people who knew  Jeremy made about his strengths and weaknesses, his likes and dislikes, and then ask him yes or no questions.

I had heard of people with developmental disabilities having their own business.  When the opportunity came, I  attended a workshop on the process and how it could work, and it made sense to me for someone like Jeremy.  It was clear that if workability was telling me there was not   a work experience opportunity for  Jeremy, I was going to have to create something for him  to learn “on the job” skills.

Jeremy’s teacher came up with the idea of starting a sandwich delivery service for the teachers, based on Jeremy’s strengths and likes, and the fact that by the end of the week, the teachers were sick of the on-site lunch option, and so there was a need for such a service.  Jeremy’s second experience was providing  a needed product (selling flowers to peers at school where no flowers were available on campus). By actually doing these businesses, Jeremy learned valuable business lessons.  These lessons were complimented by general education classes he took those semesters, such as a class on marketing and another one on economics. For his class projects he had to write papers on how he applied those principles to his job. Some of these lessons were:  the cost of doing business; the difference between a profit and a loss;  how marketing, location and  price affected the numbers of customers he was able to attract and keep. Jeremy also learned that if  he could not do all aspects of his job,  he had to pay someone else to do the parts he could not. In reality, it is these kinds of business lessons all neurotypical teens should be learning in the current economy.

That being said, self-employment is not for everyone and necessitates a business support team. The business support team can be made up of a teacher or parent, a paraprofessional, a mentor , a friend, someone who has business experience. Each person brings their knowledge to the team.   The business team helps to advise in areas the person needs help with, and also does parts of the business the person cannot, just as in all businesses (ie I pay a tech guy to take care of my website because I can’t). There are free resources, available on-line for those who are not experienced in starting up a business.

Looking at   self employment as an option sometimes leads to an actual job. The process of discovering a person’s strengths and weaknesses, can lead to discovering  areas of traditional employment that  had not been   considered for that person previously. Sometimes it leads to a job offer  from a business in the local community that  the person had visited  to  get more  information about his area of interest.

Conclusion

Teaching children and teens on the spectrum needed life skills is a necessary  preparation to  life as a money-earning adult. Analyzing the needs of both the potential employee and employer, as well as looking at the different options in employment structures is necessary to ensuring a good match. Finding a mentor can help with a successful  transition to gainful employment.

This year, Jeremy is benefiting from two workability experiences while he is studying to earn his high school diploma. Twice a week he works at the local library (which he has visited on a regular basis for the last 10 years). Once a week he helps develop the business and marketing plans for the micro-enterprise experience that some of the other students are working on through workability. Jeremy  has come a long way thanks to all the different team members along the way who believed in his potential. It takes a village….

This article first appeared in The Autism File February 2009 issue.

Dads with autistic children get a place to learn, brag and vent

September 15, 2008

Husband noticed that no men showed up at an awareness group started by his wife

This article originally appeared in the Chicago Tribune
By Rex W Huppke
September 15, 2008

James Harlan quickly saw good coming from the autism awareness program his wife started in west suburban Proviso Township. But as the group—aptly named The Answer Inc.—grew larger, Harlan noticed something missing at its meetings.

“Where are the men?” he asked his wife, Debra Vines. “Where are the fathers? It was all women.”

Continue reading »

The Affects of Autism in Families and in Partner Relationships

May 30, 2008

Family life is all about relationships and communication: relationships between two people in love, parents and children, siblings, extended family members. Yet, autism spectrum disorders (ASDs) are all about communication challenges, misunderstanding of social cues, and lack of emotional understanding, thus affecting every relationship in the family. In marriage, if one of the partners is on the spectrum, there will be more difficulties than the usual marital conflicts. Sibling issues are exacerbated by having an autistic sibling and/or a parent on the spectrum. Communication and social challenges can also impact the adult’s work situation. Before looking at how to best provide support, a better understanding of the particular difficulties autism infuses into the family unit is necessary.

Autism: It’s a Family Thing

It has been estimated that the divorce rate is in the 80% range in families with children who have autism (Bolman, 2006).  Despite high rates of marital conflict, many couples do not reach out for couples therapy. Lack of respite is a major reason. For most, finding a babysitter with whom then can safely leave an autistic child who has toileting issues, little communication skills, aggression and other inappropriate behaviors on a regular basis is difficult (Sicile-Kira, 2004). Another reason is their lack of belief that they will find a therapist understanding of their particular circumstance and offer any true guidance, thus preferring to use the precious time away from the child to confide in a good friend.

Marital stress around the child usually starts when one or both of the parents realizes the child is not developing properly. Couples who have a child who does not seek their attention in the usual way (i.e., eye contact, reaching out for or giving of affection, searching them for comfort when hurt) find it hard  not to feel rejected or unimportant to the child. For those whose child develops normally and then regresses around 18-24 months, there is the added loss of the child they knew slipping away. Consider also that a couple looks forward to having a child, and each person had his idea of what the expected child will be like. When the child does not match the expectation, or regresses, there is a loss and anguish felt by the parent not unlike the stages of grief that people who lose a loved one experience (Sicile-Kira, 2004).

Other stages of added stress are: getting a diagnosis (family physicians are reluctant to make a diagnosis on a condition once rare for which they have no set treatment plan to prescribe); getting services (a constant struggle); dealing with adolescence (sexual development appears, uncontrolled tantrums can be dangerous as the teen gets bigger); and post high school (the realization that few adult services are available) (Sicile-Kira, 2006).

From the fires in San Diego

October 27, 2007

Tuesday morning:    Here in San Diego, life continues to be surreal. We’re hunkered down in my niece’s tiny one bedroom apartment as parts of the county continue to burn. We are the lucky ones. We sit in comfort, eating chocolate, eyes glued to the TV, each with our own laptop, communicating to people on the other side of town. Our house is still intact, and we have a place to stay out of the danger zone. On the TV, we see homes burning. We don’t really want to watch this destruction, but on the bottom of the screen they are scrolling the names of the neighborhoods that people are allowed to return to, and we hope to see ours listed. It isn’t, although they are allowing people in a couple of miles away. We discuss whether or not we should head back to our home anyway.

My husband wants to go. I don’t, I figure there is a reason they have not released our neighborhood. We live in Carmel Valley, and with the Santa Ana winds our little valley can become a wind tunnel channeling the fire right to the ocean, which is why they evacuated us in the first place. Besides, when I was growing up in Ohio I lived through too many tornados to feel the danger is over. No matter what the prognosis, mankind still has no control over wind patterns, as far as I know.

Outside my niece’s apartment the sky is orange and ashes are falling and it smells like a forest on fire. Not surprising. We have lots of free time to go walking, but it’s not a good idea to breathe in air that you can see. Meanwhile on the tube, they announce that schools will be closed all week in all school districts in the county. Rebecca, my daughter who is a high school sophomore, is thrilled. She is less thrilled when she finds out that the concert we have tickets to go to tomorrow night at the House of Blues is also cancelled. We were supposed to see Boys Like Girls, All Time Low and The Audition. This is the third time Rebecca attempts to see The Audition with no success, at this point she thinks this fire is part of a conspiracy. My 18 year old son with autism is happy enough, he’s got his favorite book and his ribbon. When asked how he is doing he spells out on his letter board “GREAT I’M WITH FAMILY. I’M HAPPY WE ARE HERE.”

I am still worried about friends I have not been able to reach in some areas I am seeing highlighted bright red fire zones on the TV. A conference on self-employment for developmental disabilities that my son and I were supposed to speak at in a suburb of San Diego on Thursday has been cancelled. Meanwhile I am getting emails from people in other parts of the world asking for answers on projects I am working on and expecting me to meet certain writing deadlines. This makes me realize how although we San Diegans may feel like our lives are on hold, and we are consumed with thoughts about essentials such as food and shelter, to the rest of the world, it is life as usual and the fires are just another item on the evening news. And really, when you think about the fact that 2.5 million people have been driven from their homes in Darfur, Sudan and that millions of others face murder, rape, torture, malnutrition, and disease over there, my little situation here doesn’t seem so bad.

Tuesday afternoon: Back on the tube, Gov. Arnold Schwarzenegger is on screen along with both Homeland Security Secretary Michael Chertoff and FEMA Administrator David Paulison. President Bush has sent them to get a first-hand view of the disaster. To be honest, I don’t feel comforted by their presence. Those of us watching can only hope the federal government has learned something since Hurricane Katrina. Arnold tells us how great the San Diego locals are being to their neighbors, pulling together to help each other and how the evacuation centers are overwhelmed with volunteers and needed supplies. It is true that San Diegans are a very neighborly population, one of the reasons I like it here. In my 11 years of living here with a severely autistic child with weird behaviors, I have seen only kindness from strangers when we are out in public. Not so in other places.

Gov. Schwarzenegger tells us he has asked President Bush to declare a federal emergency for seven CA counties to speed disaster-relief efforts. This is good news. He tells us President Bush is coming on Thursday. I’m not quite sure I understand why. Perhaps he is going to open up some of the extra bedrooms in the White House to those who have been forced to evacuate and have lost their homes, and he is going to interview some appropriate locals to be prospective roommates. When Gov. Schwarzenegger and company are done speaking, the local newscaster jokes that Arnold must have bought a home here, he and President Bush seem so involved and touched with what is going on down here. I have a feeling it is really because San Diego County is a Republican stronghold. Call me cynical. I might add that much of the homes we see burning are in neighborhoods a bit different from the parishes devastated in New Orleans and most of them are owned by whites. I am not saying that this makes their devastation any easier – losing your home sucks no matter whether it is a shack or a mansion and irregardless of the color of your skin – but I don’t get the feeling that Bush and company are down with the brown.

Meanwhile we have to leave the house for a provision run to the 99 cent store down the street. We are running out of toilet paper. Some things you just can’t do without unless it is a matter of life or death, or you are unlucky enough to be homeless in Sudan. Since we have ventured beyond the front door, we decide to brave the haze and head for the local pier. The sun looks bright red and very eerie through the smoke and our sinuses are starting to act up. Looking down into the ocean off the pier, we see the surfers are out in full force. Surfers are a dedicated bunch and it feels great to see a bit of every day normalcy after all the images of doom and gloom on the TV and internet. It is nice to see so much water after feeling so much dryness.

Tuesday evening: When we get back to my niece’s apartment, I check my email. I’m still trying to find out what happened to a few local friends I can’t seem to reach. One of them has emailed me and she is safe with friends in Hillcrest, another San Diego neighborhood closer to the center of town. I read some emails from friends and family around the world who have come to realize that this is not just the usual California brushfire. Like Arnold, I am overwhelmed by the kindness. In particular, one seminar organizer who sends me around the country to speak on autism has offered to put my family up at a hotel, and when told none are available in San Diego, finds and reserves one in Orange County, about an hour and fifteen minutes away from here. It feels amazingly good to feel so much support, yet we are hesitant to leave in case the winds change and head for our neighbors and home. Right now, we are still the lucky ones. And in reality, we would have to cross other evacuation zones and fires and we would rather deal with the devastation in our own town than in someone else’s. But we are touched and grateful for the offered gift of privacy and a swimming pool.

People in the autism community are well aware of how a disaster such as this can create particular havoc for a child with autism because most of them cannot tolerate a change in their routine or a change in their environment. We are lucky because as long as Jeremy is with us and has his book or his favorite piece of ribbon, he is OK. No meltdowns here. In other emails I see that some autism organizations in the Southern California area are already looking to see what they can do to mobilize help for those whose kids with autism are not as easy going as Jeremy. Since the schools and day programs are closed and their routine has been disrupted, many of these kid are wigging out. Add to that the fact that many of them are now living in a relatives’s or a friend’s living room and they don’t have their stuff around them, and you can understand how painful this is for them and their families. Another concern is for those who are on special diets and can’t get access to the kinds of foods their systems can tolerate.

We sit back and watch Queer Eye for the Straight Guy, the perfect show to relax to. Visions of the Fab 5 redoing our house when we can move back in or if we need to rebuild are dancing in my head. I love these guys. One of them has a parent in Rancho Santa Fe, where the fires have headed instead of our neighborhood. I hope she is OK and her house is still standing.

My brother the cameraman calls, he has just landed at LAX. He is heading out with his camera and his soundman to shoot some footage in San Bernardino before coming down to San Diego. I tell him to be careful, not to get too close to anything burning. But that’s why he’s here, Good Morning America viewers want to see and feel up close what we are going through. I hope I will get the chance to see him while he is out here.

Wednesday early morning: It’s 5:30 here in San Diego, I wake up and it still smells like everything is burning, even worse than yesterday. My eyes are stinging, my sinuses are protesting. Soot is everywhere and I’m still inside the house. That hotel room in Orange County is looking pretty tempting right now. News on the internet tells me wireless service has been provided to those evacuated to Qualcomm Stadium and laptops have been donated to evacuees there. This is definitely not a Hurricane Katrina -style stadium evacuation going on here. Final numbers for yesterday’s devastation are at 500,000 people evacuated from their homes and 1300 houses burned to the ground. My neighborhood is still not listed as a place we are allowed to go back to, but I’m hoping there will be another update later today. Still, I feel lucky. My family is here, we are all alive and safe, we have family to stay with and our house is still up. Life is good. What more could I possibly want?

This post first appeared on the HuffingtonPost.com, October 23, 2007

What to pack

October 23, 2007

Sunday – It is amazing how little you care about stuff when you have flames licking at your heels. I flew back from a speaking engagement in New York on Sunday night and from the airplane, I could see three little fires out in the wilderness. Leaving the airport and driving to my home in Carmel Valley, the most northern tip of the city of San Diego, I felt like I had jumped out of the frying pan and into the fire. The closer I got to my neighborhood, the thicker the air. The fierce Santa Ana winds were blowing ashes all around. In the house, even with all the windows closed, there was a fine layer of soot on everything and the smell of campfire permeated our house. With hindsight it seems silly, but Sunday night we still went to bed thinking life would go on as usual.

Monday – When I woke up Monday morning and turned on the news, reality hit. This was not just going to go away. The three little fires had grown and split into larger fires, creating a virtual line of fires going north and south, east of the Interstate 15. The Santa Ana winds were blowing strong, and on the news we were told that they could not get the usual fire fighting aircraft up in the air because of the wind and smoke.

I sneaked into my daughter’s bedroom and turned off our alarm clock. There would be no school Monday. A few hours later we were told that our area was designated a ‘mandatory evacuation’ area. We were told to get out ASAP, while we could. This all felt very surreal. We are four miles from the ocean. How could brush fire come this close?

I contemplated driving up to my mom’s house in Pasadena, 100 miles to the northeast from here to stay for a few days. Ironically, she has been preparing to move out of her house to an assisted living facility a mile from my San Diego house so she could be near us. However, driving north meant driving through other areas that were being evacuated and I didn’t want to be toast on the freeway.

Time to pack. The first thought in my mind when I realized the house could burn down, was an enormous sense of relief at the thought of not having to get caught up on my filing, or cleaning out the closets or emptying the garage. The idea of a fresh start was appealing. After a few minutes of daydreaming, I realized I had to make some decisions, we had to leave. Interesting what different people want to take when it gets down to the wire.

My 15-year-old daughter, Rebecca, was instructed to pack three days worth of clothes, and whatever items she could not live without. Rebecca packed her stuffed bunny that she has had since the day she was born and is literally falling to bits although I’ve given it a new skin many times. She also took the ticket stubs to all the rock concerts she has ever been to, her computer, her cell phone, her new video iPod, one of her tennis trophies and last year’s freshman yearbook. She also took tickets to a rock concert she and I are supposed to attend at the House of Blues on Wednesday. She did not think to pack her contacts, her retainer or her school books.

My son, Jeremy, who is 18 and severely impacted by autism, needed help to get packed. He was standing in the hallway, rocking back and forth and flicking a piece of ribbon. This is his favorite self-stimulatory activity when he is stressed. Some of us drink vodka and smoke.

I asked him with his letter board what he wanted to take with him, besides his dog, Handsome. He spells out “U R NICE TO FIND MY BOOK” He wants his favorite book, an artsy black and white photography book on the metro in Paris. He was born in Paris and riding the metro in Paris is one of his favorite things to do. ‘Got it!,” Rebecca shouted down the stairs. “What else, Jeremy? You may not see or feel your things again. What can’t you live without?” I ask. “MY MUSIC, DAVE MATTHEWS’ Jeremy spelled. “I got him on my iPod, is that OK?,” “YES.”

I packed my jewelry, sentimental pieces that have not much monetary value but come from old friends and family since passed away, gifts from my husband, sisters and girlfriends. I took my favorite photo of my son and daughter — their first Halloween in California. Jeremy (seven at the time) is wearing turquoise Chinese pajamas. Rebecca is dressed as a witch. They are so cute , smiling and standing in front of the rental we lived in, before we bought the house we are now evacuating. I took pre-digital photos off the wall, photos of friends and relatives. We have paintings hanging on all our walls, a lifetime of collecting from flea markets around the world, but I didn’t give them a second thought. I took the two pieces of art nearest and dearest to my heart: my daughter’s fifth grade self-portrait that won a ribbon at the local San Diego County Fair, and a multi-media self- portrait my autistic son made with an art college student. I grabbed a few days worth of comfortable clothes and for some reason my leather jacket. I had not realized until then the importance of that jacket — it has been everywhere with me, a witness to my adventures in different places. I took my computer, and saved online once again the manuscript I am currently working on. Can’t be too careful.

My husband packed some clothes, a computer, flashlights, cat and dog food, our Very Important Papers which are always in a metal fire proof box. He packed water, food, the kids favorite snacks. I packed 2 cans of fois gras — souvenirs of a trip to France — a couple of good bottles of wine, and a bottle of champagne. Why let it all go to waste? We might as well enjoy one good meal before we get really depressed.

All the neighbors are out on the street packing up their cars. We hug and exchange cell phone numbers and the surreal became reality. We are taking our two cars, so we split up the teens, the 2 cats and the dog. We head to Imperial Beach, about 25 miles south where a niece and her husband have just moved into a tiny one bedroom apartment. When they first arrived to San Diego a month ago, they stayed with us till they found their new home. I never thought that one day, I would need to ask them to repay the favor.

Tuesday – Tuesday morning, everyone is asleep in the tiny living room. I check on the internet, looks like our house is still standing. There is little relief in knowing that, because if your house did not burn down, it just means someone else’s did, possibly someone you know. The fires haven’t stopped, they are still moving towards the coast. I get a call form my sister in New York, she tells me my brother, a cameraman based in Philly, is flying out to cover the story for Good Morning America. My brother has covered many natural disasters in the U.S., including Hurricane Katrina, other floods and fires. This time it will probably seem a bit more personal.

This blog first appeared on the Huffingtonpost.com on October 23, 2007

Back home after the fires

October 15, 2007

Wednesday morning – Everyone is still asleep in this tiny room in Imperial Beach where we have evacuated from our home in San Diego, but I want to know what is going on. I turn on the TV without the sound and see the same images of fire and brimstone on the screen but there is a noticeable difference though I can’t put my finger on it right away. Then I realize what it is. No wind! This is great. I am fixated on the scrolling words on the bottom of the screen until I see what I’ve been waiting for. ‘Residents may return to these previously evacuated areas: … Carmel Valley…Yes! We can go home! A little while later I call my friend Veronique who never left her house and I hear a strange noise in the background. “Oh my God,” she says “Planes! I hear planes!” This is extraordinarily good news because it means the wind has really died down at least in our area and they can get planes up to fight the fire burning east of us and hopefully everywhere else.

My husband is still thinking I should take up the generous offer of the hotel room in Orange County as the air quality is pretty bad, and take the kids and the dog up there. We find out the Interstate 5 is blocked because of fires in Camp Pendelton, so for now it is not even an option, and I decide to make a decision once we are back in our neighborhood. We pack up the car, and head north. We stop in downtown San Diego to drop off my 18 year old autistic son, Jeremy, at Dana’s place. Dana is one of his Afternoon Angels, college students who help me teach and take care of Jeremy as he requires 24 hour support. She hasn’t left town and Jeremy and Handsome (his dog) are going to hang around with her while we assess the situation back home. It is extremely difficult to get anything done and keep an eye on Jeremy at the same time and I know we are going to have a lot of clean up to do. I wouldn’t be able to keep him occupied and out of the soot. I hope Dana is going to be around the rest the week, because the rest of the Afternoon Angels have flown the coop and gone home to LA, and although he did well for a few days, he is going to start wigging out if this goes on for too long. My fifteen year old, Rebecca is on her cell phone, checking to see who is going back to our neighborhood that she can hang with when we get home. She is still thinking of this whole experience as a week’s worth of snow days. Wait till she realizes how much clean up we are going to all have to do.

Wednesday afternoon – As we get off the freeway and head down the street near our house, it is still pretty calm and quiet here, not everyone is back. Tree branches and leaves are scattered everywhere, some trees have been uprooted by the wind. There is a gardener mowing the grass along the sidewalks and it looks like he is just spewing brown ash into the air. We park in front of our house and see piles of soot and leaves along the door and garage, the winds have blown it all up against the house. Inside, everything is covered in a fine layer of soot that has blown in through the cracks.

We unpack our car, but leave everything near the door, because we know that the winds could pick up and the fire could still change directions and head back this way. I check the landline voice mail and call family to tell them we are back home. I try to call Jeremy’s instructional school aide, Maureen, one more time without success. I am concerned about her, as when I spoke to her last, she was evacuating and she could see the flames a half a mile form her house. I wonder if her home was spared.

I call my mom in Pasadena, now that I am home, she wants to know when I am coming up to see her. I explain I have to clean everything up and the roads are still not clear heading north on the Interstate 5. The irony in all this is that we are in the middle of moving her down here, a mile from my house to an assisted living home. She has just lost her husband of 56 years, my father, and she requires 24 hour care due to Parkinson’s. Good thing we hadn’t completed the move or she would have been evacuated as well. I’m not sure I could have cared for her as well as my son through all of this, and I wonder how long now till I can move her down close to me with all that is going on.

We start cleaning the soot in the bathrooms and the kitchen; it has gotten into everything and it smells like damp soot, like a store having a fire sale. We keep the windows closed and put the air conditioning fan on to clean the air. We strip the beds and wash the sheets, everything is covered in ash. I feel so lucky to be alive and back in my home. I’m not sure if I will have help with Jeremy over the next few days, so I decide to take advantage of the fact he is not with me to see a girlfriend. My friend Veronique picks me up and we head to the beach. As we walk and play catch up with our stories we can finally breathe some semi-fresh air. I keep feeling how lucky I am. We stop at the Poseidon, my local Cheers which is right on the beach, and have a drink at the bar. Everyone is commiserating and telling evacuation stories. We are the lucky ones. Each of these moments feels like a gift, to be treasured and savored. I feel guilty that my home is still intact when others have lost everything.

Once back home, my brother the cameraman calls. He and his soundman have had no sleep, they have been covering the fires in Lake Arrowhead and have been covering the fires all night for Good Morning America. He is now headed to Rancho Bernardo and wants an update on the roads as he doesn’t want to get stuck, he is going to crash at a hotel in Rancho as that where he has to be ready to roll the next day. We hope we will get to see each other within the next day or so. Funny enough, he was planning to come out this week to help move my mom down here, instead he is now covering the fires.

Thursday morning – I wake up in my own bed, feeling luxurious. I make my favorite coffee and drink it out of my favorite coffee cup (the blue one with the chipped saucer I have had since my Paris days) which I thought I might never drink out of again. Life is great. The house is quiet, the kids are still asleep. I turn on the TV, the Santa Ana winds have settled down, the fires aren’t as bad , and there are none left in the city of San Diego. It is now over in the east and to the north. For many the fire and its aftermath will not be over for years to come. There have been ten deaths, thousands upon thousands of acres burned and at least 1500 homes gone.

I know we will have to deal with drought, and get this mess in and out of the house cleaned up and that soon I will have to deal with the reality of my life that was interrupted before the fires. I need to go visit my mom and help her prepare for a move, I need to work with Jeremy’s school to make sure they are getting back on track (new school placement) and find out which Afternoon Angels are still around to help out with Jeremy so I can get what needs doing, done. I need to make sure Rebecca gets caught up in her school work. Oh yeah- and I need to finish my manuscript due soon. But right now, I am enjoying the feeling of luxury of being in my own home, I am feeling on top of the world. My family and I are so lucky, we are alive, we still have a home. Our neighbors are OK. It doesn’t get any better than this.

This first appeared on the Huffingtonpost.com  October 25, 2007

Families seek autism answers

May 27, 2007

Conference brings parents together

By Rex W. Huppke
Chicago Tribune
Published Sunday, May 27, 2007

Shawn Dennis, the father of two autistic children, came from Ohio to Rosemont this Memorial Day weekend seeking what most parents affected by this enigmatic disorder hunger for: hope.

At a conference called “Roadmap to Recovery,” organized by the national advocacy group Autism One, hope came in a dizzying array of treatments and products, from portable hyperbaric chambers, omega oils and potent
vitamin supplements to acupuncture and infrared saunas aimed at sweating out toxins. There were booths offering sailing therapy, auditory integration training and tips on gluten-free cooking.

Continue reading »

Dr. Bernard Rimland 1928 – 2006

January 27, 2007

Dr. Bernard Rimland passed away just a few days before this past  Thanksgiving and will be mourned by many.  At times controversial, always searching for answers, he changed the way autism was viewed  worldwide. Those of us who knew him as Bernie will always feel a twinge of sorrow around this holiday, a reminder of how  much we have  to thank this pioneer who  played  David to the medical establishment’s Goliath.  As  research would prove, fighting Goliath  was not a lost cause  but a righteous endeavor.

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. Continue reading »

Growing Up With Autism

November 27, 2006

Teenagers and young adults are the emerging face of autism as the disorder continues to challenge science and unite determined families.

By Barbara Kantrowitz and Julie Scelfo

Newsweek

Nov. 27, 2006 issue – Chicken and potatoes. Chicken and potatoes. Danny Boronat wants chicken and potatoes. He
asks for it once, twice … 10 times. In the kitchen of the family’s suburban New Jersey home, Danny’s mother,
Loretta, chops garlic for spaghetti sauce. No chicken and potatoes, she tells Danny. We’re having spaghetti. But
Danny wants chicken and potatoes. Chicken and potatoes. His 12-year-old sister, Rosalinda, wanders in to remind her
mother about upcoming basketball tryouts. His brother Alex, 22, grabs some tortilla chips and then leaves to check
scores on ESPN. His other brother Matthew, 17, talks about an upcoming gig with his band. Danny seems not to
notice any of this. “Mom,” he asks in a monotone, “why can’t we have chicken and potatoes?” If Danny were a
toddler, his behavior would be nothing unusual. But Danny Boronat is 20 years old. “That’s really what life with autism
is like,” says Loretta. “I have to keep laughing. Otherwise, I would cry.”

Autism strikes in childhood, but as thousands of families like the Boronats have learned—and thousands more are
destined to learn—autism is not simply a childhood disorder. Two decades into the surge of diagnoses that has made
autism a major public health issue, a generation of teenagers and young adults is facing a new crisis: what happens
next?

As daunting as that question may be, it’s just the latest in the endless chain of challenges that is life for the dedicated
parents of children with autism. Twenty years ago, they banded together—largely out of desperation—to raise
awareness of a once rarely diagnosed, often overlooked disease. They are united by the frustration of dealing with a
condition that has no known cause and no cure. They have lobbied passionately to get better education for their kids
and more money for research into autism, a neurological disorder characterized by language problems, repetitive
behaviors and difficulty with social interaction. At the same time, more sophisticated epidemiology has revealed the
true magnitude of the problem. Autism is now estimated to affect from one in 500 to one in 166 children—or as many
as 500,000 Americans under 21, most male. That includes individuals with a wide range of abilities—from socially
awkward math whizzes to teens who aren’t toilet trained—but who all fit on what scientists now consider a spectrum
of autism disorders.

The culmination of much of this parental activism is the Combating Autism Act, which was pushed by a collection of
advocacy groups like Cure Autism Now, led by Hollywood producer Jon Shestack and his wife, Portia Iverson; Autism
Speaks, started by Bob Wright, CEO and chairman of NBC Universal, and the Deirdre Imus Environmental Center for
Pediatric Oncology. The bill unanimously passed the U.S. Senate in August but was blocked in the House by Texas
Republican Joe Barton, chair of the House Committee on Energy and Commerce. In a September meeting, Barton told
autism activists that he would continue to oppose their legislation, which earmarks $945 million for research over the
next five years, because it conflicted with his own proposal to reform the National Institutes of Health. As a result,
autism advocates began inundating him with faxes and phone calls and lambasting him in the press. To advance the
cause of research, radio host Don Imus joined in and pressured Barton on the air, calling the congressman, among
other things, “a lying, fat little skunk from Texas.”

Now that the Democrats have won the House, Barton will lose his chairmanship in January and NEWSWEEK has
learned that he is attempting to pass a compromise version of the bill before then. If passed, the House bill would
fund a new push for early diagnosis, which is critical to starting therapy as soon as possible. In a particular victory for
parents, the legislation specifies that the research oversight committee should include at least one person with autism
and a parent of a child with autism.

The House bill authorizes money for research into many questions, including whether environmental factors may
trigger autism. One point of contention: the Senate bill mandated a specific amount of money for the NIH to research
the role environmental factors might play in causing autism. But Barton resisted, and now the specificity about how
much should be spent and where has been lost in the compromise version. Still, a Barton bill could come up for a vote
as early as the first week in December and the legislation, says Alison Singer, the mother of a daughter with autism
and an executive at the advocacy group Autism Speaks, “is probably the single most important thing that could
happen besides the cure.”

A win in Washington may lift their spirits, but a legislative victory won’t really change much for the Boronats and
others like them. Some kids have made dramatic progress after intensive physical and behavioral therapy; many
others still struggle with basic activities. Often, when lower-functioning young people reach 18, their parents will
establish legal guardianship to protect them. But no matter what level they’ve reached, many will need help for the
rest of their lives. Most government-sponsored educational and therapeutic services stop at the age of 21, and there
are few residential facilities and work programs geared to the needs of adults with autism. “Once they lose the
education entitlement and become adults, it’s like they fall off the face of the earth” as far as government services are
concerned, says Lee Grossman, president and CEO of the Autism Society of America, a major national-advocacy
group.

According to the Harvard School of Public Health, it can cost about $3.2 million to care for a person with autism over a
lifetime. Caring for all persons with autism costs an estimated $35 billion per year, the same study says. Families with
limited financial resources are particularly hard hit. Other chronic diseases like diabetes are covered by insurance. But
parents of youngsters with autism “have to navigate a maze and, if they find providers, then they have to figure out
how to pay for it,” says Singer. Grossman’s early wish for the Combating Autism Act was that it would address the
dire needs of autistic adults, and he drafted 30 pages of service-related issues. But that part was never introduced
because a consortium of activists working on the bill concluded, for the sake of political expediency, that the bill
shouldn’t try to take on too much. In this light, restraint seems especially critical now, when the Iraq war has
siphoned off so much federal money. “It’s like a forest fire running through science and it burns a lot of trees down,”
says Dan Geschwind, a UCLA neurogeneticist. However, advocacy groups vow that the moment the bill passes,
government funding for adult services will become their next priority. Wright believes there is substantial
congressional support for this, possibly from Sen. Hillary Clinton.

Moving through adolescence to adulthood is never easy, but autism transforms even the most routine activities into
potential minefields. Recognizing the norms of teen behavior can be a Sisyphean task. Helen Motokane’s daughter,
Christine, 14, has Asperger’s syndrome, a high-functioning form of the disorder. She struggles to fit in at her Los
Angeles public school—and that means hiding parts of her true self. One secret: she loves Barbie. “She knows it’s not
cool to wear clothes with Barbie logos, so she tries to keep that at home,” says Helen, who gently prods her daughter
into developing more mature interests. “She says, ‘You’re trying to make me grow up, aren’t you? You want me to do
all these things right away.’ I go, ‘No, no, no.’ I reassure her that we’re not trying to push her.” But an hour or two
later, her mother says, Christine will ask, “Is it OK if I like Disney Princess even though other kids my age don’t like
it?”

Keri Bowers of Thousand Oaks, Calif., says her son, Taylor Cross, 17, seems perfectly normal at first. But sometimes
he’ll just blurt out what he’s thinking without any internal censorship. Passing a stranger on the street, he might say,
“You’re in a wheelchair!” “When you’re socially odd, people are afraid,” Bowers says. “They want to get away from you
and cross to the other side of the street.” Not surprisingly, Taylor had no friends at all in the public school he attends
until he began to meet other teens with autism—young people his mother describes as equally “quirky.”
In one way, he’s not quirky at all. “He’s attracted to girls,” Bowers says, “but he’s shy. He doesn’t really know how to
talk to them.” A few months ago, he asked out a girl from his school who does not have autism but who had been
friendly to him. Bowers had a psychologist friend shadow the couple at the movies. “Taylor only spoke about subjects
he was interested in,” Bowers says. “He wouldn’t do a reciprocal back-and-forth conversation on topics about her.”
Still, when Bowers later asked if he wanted to kiss the girl, Taylor surprised his mother with his sensitivity. “He said,
‘Yes, but she’s very religious and I would never do that’.”

As young people with autism approach adulthood, some parents can’t help but feel the huge gaps between their
child’s lives and others the same age. “It’s very hard, especially in our competitive society where people strive for
perfection,” says Chantal Sicile-Kira, whose son, Jeremy, 17, can communicate only by pointing to letters on an
alphabet board. The San Diego resident hosts “The Real World of Autism With Chantal” on the Autism One Radio
Internet station and wrote “Adolescents on the Autism Spectrum” (Penguin, 2006). Like many youngsters with autism,
Jeremy finds new environments difficult. “If he walks into a new store,” his mother says, “and there’s horrendous
fluorescent lighting, within 10 minutes I’ll look down and he’s starting to wet himself.” Despite such challenges, Sicile-
Kira plans to help Jeremy live on his own when he’s an adult—perhaps rooming with another young person with
autism.

Independent living is a major goal of many families and, with the help of therapy, thousands of youngsters who in
earlier generations would have been consigned to institutions are now going to college and looking forward to a
normal life with a job. But for every one who makes it, there are many more young people like Danny Boronat, who
has come so far and yet still faces much uncertainty. Once unable to utter a sentence, Danny now reads at a secondgrade
level, competes in the Special Olympics and willingly takes on household chores like loading the dishwasher.
But he also can spend hours playing with water. He picks obsessively at his cuticles, and sometimes cuts himself (his
mother tries to hide any scissors in the house). He has no close friends. Next year he’ll turn 21 and will no longer be
eligible for the workshop where he does simple assembly-line work three days a week. After that? No one knows, not
even his parents. “It’s terrifying,” says his mother, who started her own charity called DannysHouse to focus on
adults.

A few states like California and Connecticut, newly aware of the crisis, have launched efforts to meet adult needs. But
until programs are widely available, families are left to cobble together a patchwork of solutions—from informal day
care to hourly caretakers to private residential programs. But these are stopgap measures. Parents worry that they
will run out of money to pay for these services—and that they won’t be around forever to arrange them for their
children.

It’s understandable that these parents would feel distraught. Many adults with autism require so much special care
that it’s hard to imagine anyone but a loving family member willing to provide it. “My wife and I are concerned about
what’s going to happen to our son when we pass on,” says Lee Jorwic, whose son Christopher, 17, is unable to speak
even though he’s been in therapy since childhood. At 6 feet 4 inches and 290 pounds, Christopher is “our gentle
giant,” his father says. But because of his disabilities, even the most routine tasks require extraordinary preparations.
Two years ago, for example, Christopher got an eye infection. He couldn’t sit still long enough for the doctor to
perform an exam so he had to go under anesthesia twice “just so the guy could look in his eye,” his father says.
Grossman says the Autism Society gets hundreds of calls every day from families like the Jorwics. “The most
distressing, most disheartening, are from parents of older kids, parents who are at the end of life,” he says. “They’ve
been fighting this all their life, and they don’t have a place for the kid after they die.”

The natural successors to parents as caretakers would be siblings. Some families feel that’s too much of a burden;
others say that’s a natural part of life in a family with autism. When one sibling has autism, the needs of so-called
neurotypical children may seem to come second. Beth Eisman of Potomac, Md., recently sent her oldest daughter,
Melanie, 18, off to college. Her goal for her younger daughter, Dana, 16, is more basic: independence. Dana’s
tantrums limited the family’s participation in Melanie’s school activities. “The old days were pretty bad,” Eisman says.
“Melanie often took the brunt of it.” Now that Melanie is gone, Dana feels the loss. Eisman says Dana often goes into
her sister’s room and says, “I want Melanie.”

Many families are sustained knowing that, by raising awareness of autism, they have already given their children the
gift of a meaningful identity. “If this was 10 years ago, my daughter’s classmates might say she’s the one who talks to
herself all the time and flaps her hands,” says Roy Richard Grinker, an anthropologist at George Washington
University and father of Isabel, 15. “But if you ask these kids in 2006 about Isabel, they say she’s the one who plays
the cello and who’s smart about animals.” Inspired by his daughter, Grinker explored autism in different cultures for
his book “Unstrange Minds: Remapping the World of Autism” (Basic Books, 2007). “The more peers of the same age
group understand about autism, the more likely they are to be kind, caring and integrate them into community life.”

Twenty years ago, that kind of acceptance was inconceivable. Autism was considered rare and few physicians
understood it or were able to help. The disorder was first identified by Leo Kanner of Johns Hopkins in 1943. About the
same time a German scientist, Hans Asperger, described a less severe form of the condition. But with the ascendancy
of psychoanalysis in the postwar years, the predominant view was that autism was a psychological disorder caused by
a lack of love from “refrigerator mothers,” a term introduced by the controversial psychologist Bruno Bettelheim. In
the 1970s, parents started pushing back against this theory and encouraging researchers to look for neurological
causes. It wasn’t until 1980 that autism became an official clinical diagnosis, separate from childhood schizophrenia or
retardation. Since that time, as scientists have learned more, they have broadened the diagnosis to include a
spectrum of disabilities. Now, they are re-evaluting it even further, considering the idea that there may be multiple
“autisms.”

As knowledge about autism spread in the 1990s, families began to get more accurate diagnoses for children who
might in the past have been labeled mentally retarded or emotionally disturbed, and the number of cases
skyrocketed. Because of the Internet and extensive networking, parents around the country found allies and became
powerful and articulate advocates. Even longtime autism researchers say families have really led the way. “Beyond
raising awareness,” says Dr. Thomas Insel, director of the National Institute of Mental Health, “families have become
the real experts on this disorder. They have to figure out how to cope with a child who becomes explosive, disruptive,
who could have a meltdown at any moment. They become highly skilled at knowing what helps.”

Autism has set all these families on a unique journey and, while the road ahead is still unclear, they cherish small
triumphs along the way. Grinker has a Ph.D. from Harvard and, in his community, many parents dream of sending
their children to the Ivy League. He and his wife, Joyce, a psychiatrist, know that Isabel will never join them. But
raising Isabel has its own rewards. Isabel’s sister, Olivia, 13, is “like a third parent,” says Grinker. The family judges
Isabel not by the standards of others but by how far she has come. “When Isabel achieves something, I feel like we’re
a team, like we all did it, and I feel incredibly rewarded,” he says. For now, that is enough.

With Karen Springen and Mary Carmichael
URL: http://www.msnbc.msn.com/id/15792805/site/newsweek/from/ET/
© 2006 MSNBC.com

Woman shares experience with autism

November 3, 2006

The Coast News November 03, 2006
By Jeff O’Brien, staff writer

DEL MAR — The San Diego Chapter of the Autism Society of America is hosting their fifth annual conferences, Autism: Preparing for the Future, Today,” Nov. 3 and Nov. 4 at Marina Village.

Del Mar resident Chantal Sicile-Kira, an award-winning author, autism expert and mother of a 17-year-old autistic son, will be one of the guest speakers at the event.

Continue reading »

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