One small step towards self-regulation

February 6, 2010

How to teach your teen with autism to request a break

Self –regulation is a needed life skill not practiced by most teenagers. Often teens on the spectrum need sensory breaks to help them self-regulate, yet some are unable to communicate the need for one. If you are a parent or an educator, you may want to consider teaching the teen to request a break using a “ I need a break” card. This may be helpful in preventing meltdowns or compliance issues. Teenagers need to be given more control over their time and need to be able to request necessary breaks  in an appropriate manner.

Let’s say you have a student that you work one-on-one with for a one hour slot of time. Every time you sit down to work with him, after about 20 minutes he gets up and leaves the worktable and there is no holding him back. What you need to do is teach him to communicate to you when he needs a break, and allow him to have those needed breaks within reason. Here is one way to do that: Continue reading »

Temple Grandin: The HBO Movie starring Claire Danes

January 13, 2010

Temple Grandin, a world-renown designer of livestock handling facilities and a professor of animal science at Colorado State University, is arguably the world’s most famous person with autism. Temple has written many books about autism, others about animals, and even more about both. Last week I called Temple (who wrote the forward to my first three books) to get her input on my latest book, 41 Things to Know About Autism. Temple told me that the long-awaited “Temple Grandin” directed by Mick Jackson is finally premiering on HBO on February 6. The screenplay by Christopher Monger and William Merritt Johnson is based on Temple’s book “Thinking in Pictures,” as well as “Emergence” by Temple Grandin and Margaret Sciariano.

For Emily Gerson Saines, Executive Producer, this movie has been a labor of love for nne years. A parent of a child diagnosed at three, she was given Temple’s autobiography, “Thinking in Pictures,” by her own mother. The book became a source of inspiration for her in raising her own child.

Temple is well-known for her ability of thinking in pictures, and I was therefore curious as to how she would react to seeing her life in images created by others, not necessarily the same pictures she has in her mind about her life. Temple discussed her thoughts with me about the movie.

How much input did Temple have on the making of this movie?

“I gave input into the screenwriting, spent a good amount of time, four days, with the writers and two days with the director. I think they did a great job. They built a cattle dipping vat based right on my original, off of my drawings. My drawings are all over the movie; I really liked that. In a scene near the end of the movie, I am selling a job to one of the meat plants, my drawings are out on the conference room table. Well, not my originals, I copied them at Kinko’s! They did really cool animations of the conveyor system for handling cattle at the slaughter plant from those drawings – really cool animations taken form my drawings – they really emphasized my projects. The cattle stuff was very accurate. They showed all the sexual discrimination I had to put up with in the livestock field. Women did not work in the yards back then just the office. It’s a lot better now.”

What was it like for Temple to see Claire Danes playing her?

“Weird. It was weird to see me on the screen. It was like going in a weird time machine, going back in a time machine into the 60’s. They put a wig on Claire and dressed her up in clothes and she had to wear these ugly false teeth apparatus. She looked like me, except she was shorter than me and we couldn’t do anything about that, but she sounds and moves just like me. She does accurately portray how I would act in the 60s and 70s. Claire did a great job.”

How did Temple help Claire prepare for the role?

“We met in New York for a half a day and I gave her all my tapes of me, of old lectures from the late 80’s, early 90’s and an old Larry King show I did. I only had still photos from childhood; they didn’t take video in our house then. Claire had a voice and movement coach.

Did the film attempt to portray how Temple’s mind thinks in pictures; and if so how did they do that?

“The movie is great. They really showed how my mind works. They have a neat scene where they show how I think in pictures, very effective. I love how they showed that. They showed sequentially pictures of ‘shoes’ that is exactly how I think – like snapshots of different types of shoes: high heels, flats, all different types and shapes and colors.”

What was Temple’s favorite aspect of the movie?

“The visualizations and they way they used my drawings. They showed the optical illusion I built, the science teacher challenged me to do that, the Amesʼ “Distorted Room. They built a working squeeze machine I designed and the gate at my aunt’s ranch.”

What was it life for Temple being on the movie set, watching them put her life story into pictures?

“I only watched a small part of it being filmed. I watched it through a monitor because I didn’t want to make Claire nervous. What really interested me was the number of people on the set that had Asperger’s Syndrome. Smart people. Let’s just say they weren’t sweeping the floor. They are all part timers. There are a lot of technical jobs in production and it was like a big construction project.”

What message does Temple want people to take away from seeing this movie?

“I hope one of the things they get from it is the importance of a good teacher and mentors. Mr. Carlock (David Strathairn) saw that I had some areas of strength and he developed that. He spotted my ability with science; mentors are attracted to ability. Sometimes you find the mentors in the oddest places. In fact, the first meat plant I ever went to, I got in because I met the wife of their insurance agent, because she liked my hand embroidered shirt.

People are going to hire you because of your skill not your personality. You need to have a portfolio to show them what you can do. When I first went into the American Society of Agricultural Engineers, they thought I was weird, they didn’t even want to talk to me. Then I whipped out the cow dip vat drawing and that made them respect me.

Also, it’s important for people with Asperger’s to understand they need to make things that people want in order to make a living. Like the opening gate at my aunt’s farm – I would get upset at my aunt, but I ended up building the gate my aunt (Catherine O’Hara) wanted. I figured out how to open the gate without getting out of the car. This gate – it solved other’s people’s problems. That’s something you can make money from. The gate was an early project at age 16 before I made the squeeze machine. I hope this movie inspires a lot of parents.”

What is it like for Temple to know that there is a movie of her life out there?

“Well, I’ll never get a fat head. I’ll go on the movie tour, and go on my book tours, and then I’ll come back here. I never forget what my real job is, which is my livestock stuff. Today, I’m having lunch with one of my students to discuss a project we are working on together. That’s my real job.”

A few days after talking to Temple about the movie, I was given the opportunity to see it. I have to agree with Temple. It’s a great movie and not just for people interested in autism or cattle, because It’s a wonderful, inspirational, and entertaining story. The messages that Temple hopes people will take away are true for everyone, not just those with Asperger’s, especially in this economy. As a friend of Temple’s I was impressed with Claire’s interpretation of her: she really sounds and moves like Temple. As a former production professional, I appreciated the effort and care with which they took words on a page and translated them into sounds and images that accurately portrayed a person who is a hero to many of us – not an easy thing to do. As a parent of a child with autism, I could not help but relate to Temple’s mother, Eustacia Cutler (Julia Ormond), and was moved to tears during the final scene. Watch this movie, you’ll be glad you did.

This article was first published on HuffingtonPost.com, January 13, 2010.

Episodes

October 3, 2009

New book written by teen with autism offers different perspective

If you’ve ever wondered what it is like going through the wonderful adolescent years for a teen with autism, I recommend you read this new memoir, Episodes: My Life as I See It. Blaze Ginsberg, who has high functioning autism, tells us what life from his perspective looks and feels like. But Blaze doesn’t just tell us about his life, he presents his world to readers in a highly unusual format inspired by the movie-based Web site IMDb.com.

I love this book. Disclaimer: I have known Blaze Ginsberg for many years. In fact, he used to ride the special education school bus with my son, Jeremy. Blaze has always had a special place in my heart because of his unique personality, and because of my friendship with his mom, best-selling author Debra Ginsberg, (she chronicled Blaze’s early years in Raising Blaze).

But it is not just because of our friendship that I love this book. I love it because I have seen where Blaze was before, and how he has grown to be the wonderful, thoughtful, constructive person he is today. His memoir not only offers his unique perspective, but is an inspirational testimony to the necessity of advocating for your child and the importance of a close-knit group of extended family members and friends. More importantly, Blaze’s memoir offers a unique insight into what life and school is like for a teen on the spectrum, and we rarely get to hear that perspective. Watching Blaze as he matures through all his episodes,  I  feel hopeful that  my teenager –  and the rest of the family – will survive at least one pilot season.

Episodes has received  excellent reviews by actress Jamie Lee Curtis and esteemed authors such as Daniel Handler (A Series of Unfortunate Events), as well as by Publisher’s Weekly and the School Library Journal . Suzanne Crowley writes that “…Ginsberg gives readers a unique glimpse into an adolescent mind that is simply wired differently. He says, “At times being autistic is not easy; it is known for getting in the way of things. Sometimes it stops you from doing things like everyone else because you don’t understand something or it’s difficult to figure out what people mean. Also you think about things differently from other people and that can be difficult.”

Blaze’s life is still in syndication, with no predictable end; I can only wish him the best and hope to see more episodes.

This first was posted on Examiner.com on October 3, 2009

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.

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).

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

As Independent As Possible

October 12, 2006

This is an article written by Liz Breen  following the publication of my book Adolescents on the Autism Spectrum, and was published in Spectrum magazine.

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

Brave New World

September 10, 2006

13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

Living with a child on the autism spectrum day after day, parents often miss the little changes that are so typical of all kids’ development. One day I looked at my son, Jeremy, and realized he was already up to my chin. And what was that – facial hair? His behavior started to change as well. As a young child he’d always been compliant; we spent years trying to teach him to say “no” and mean it. So I was thrilled when he just didn’t want to do what we wanted him to do anymore.

Autism and adolescence: each on their own can be interesting and challenging, to say the least. Together, they form a volatile mix that can arouse daily anxiety in even the most prepared adult. If you live with or work with a pre-teen with an autism spectrum diagnosis, attention to the following 13 points can help you and your child navigate those years a little more smoothly. One caveat: it doesn’t matter the functioning level of your child with autism or Asperger’s; everything here applies. You’ll work them out differently depending upon his or her cognitive, emotional and/or communication abilities, but don’t overlook them, thinking they don’t relate to you child. They do!

  1. Noncompliance: it may not be autism, it may be adolescence. Whether or not they have autism, there’s a definite ‘shift’ in behavior and personality when children turn into teenagers. Wanting your attention changes to wanting their independence. For kids on the spectrum, this behavior change may look like non-compliance; they don’t follow through on your requests as before. But it’s actually a normal part of their development, entirely aside from their autism. As a parent it’s important to support your teen as he struggles to become his own person, and even though it may be hard to appreciate, this is a positive development. After years of being taught to do as he is told, your teen needs to start learning that it is acceptable at times to say ‘No,’ or he might find himself in dangerous situations with peers or others looking for an easy victim to prey upon.
  2. Teenagers need to learn to make their own choices. Giving choices to your growing teen will teach him about decision making and accepting the consequences of his choice (good and bad), as well as help him realize he will eventually have more control over his own life. This applies no matter what the functioning level of the child. Offer him choices, regularly, and abide by the choice he makes. Remember, as he gets older he will want and need to be more involved in his life and his transition planning. By letting him make choices now (within your parameters at first) you are teaching him valuable life skills.
  3. Chores teach responsibility. At any age, it’s good to teach children that being part of a group (whether it is a family, a work group, or a community) brings with it a certain level of responsibility. If your pre-teen has somehow been exempt from chores and group responsibility, let this slide no longer. Teens need to learn that living in a house with other people entails responsibilities as well as pleasures. Chores teach the teen to be responsible for himself, to live independently, as well as foster self-worth and self-esteem. ALL individuals with autism can be taught to contribute at some level. Do make sure your child has opportunities to do so.
  4. Watch out for seizures. One of every four teenagers with ASD will develop seizures during puberty. Although the exact reason is not known, this seizure activity may be due to hormonal changes in the body. For many the seizures are small and sub-clinical, and are typically not detected by simple observation. Some signs that a teen may be experiencing sub-clinical seizures include making little or no academic gains after doing well during childhood and preteen years, losing behavioral and/or cognitive gains, or exhibiting behavior problems such as self injury, aggression and severe tantruming.
  5. Talk to your child about his/her changing body. Imagine how scary it must be to realize your body is going through some strange metamorphosis, you don’t know why and there is nothing you can do about it. Whether your child has Asperger’s Syndrome and has sat through hygiene classes at school, or he is more impacted by autism and you’re not sure how much he understands, it is important to discuss the changing male and female body in a simple way he can understand. Otherwise, your teen may be overly anxious and agitated when she starts menstruating or when he has wet dreams. Visuals that include photos or drawings and simple words may be helpful, especially at the beginning. Be concrete and don’t overwhelm – this is certainly not a one-time talk!
  6. Masturbation: a fact of life. Let’s face it; masturbation is a normal activity that almost all teenagers engage in. Once discovered, it is an activity hard to stop, especially for individuals who enjoy self-stimulatory activities and can be obsessive compulsive, as are many people on the autism spectrum. The best approach is teaching your teen that this is a private activity to be done only in private at home, in a designed place such as his bedroom or bathroom.
  7. Relationships and sexuality: topics that need to be discussed. Sexuality is a topic that most parents are not comfortable discussing with their children, even their neurotypical teens. However, it is necessary to talk to your teen on the spectrum about sex and the many types of relationships that exist between people. It is naïve of parents to think that because their child has autism s/he won’t need this information. Teens talk, and invariably your child will be hearing about it from their NT peers at school. Whatever the functioning level of your child, he needs to be taught about appropriate/inappropriate greetings, touch and language when interacting with members of the opposite or same sex. Don’t leave this important part of his social-emotional development to locker room education.
  8. Self-regulation is important for life as an adult. An important skill for every teen to learn is the ability to control his or her reactions to emotional feelings and sensory overload. Hopefully, by the time they are teens your child or student has learned to recognize their feelings and impending emotional or sensory overload, and ways to handle the situation. In school this could mean practicing self-calming techniques or signaling to the aide or teacher they need a break and having a ‘safe place’ or quiet room to go to. At home, teens should have their own quiet spot to retreat to when overwhelmed. And parents: respect their need to do so!
  9. Self-esteem is the foundation for success. While children are young, start building this foundation by emphasizing strengths rather than weaknesses. If your child with ASD, no matter what his age, has low self-esteem pay attention to the messages he is receiving from people around him at home, at school and in the community. In all likelihood, the message he is hearing is that he can’t do anything right. Teens need to be told when they are acting, responding and communicating appropriately, as well as that their (considerable) efforts to do so are appreciated. Where there are challenges, it is up to us, as the adults in their lives, to help them find strategies to be effective. Teens can be at high risk for depression. Parents should ensure their teen knows they are valued and loved under all circumstances, not just when they ‘get it right.’
  10. Self-advocacy is required for independence. Eventually your teen will be living away from home and will not be under your protection. He needs to know how to speak up for himself. Start this training while he is in school. IDEA 2004 mandates that students be invited to participate in transition planning and this supportive environment can be good ‘training ground.’ Make sure your teen is aware of his strengths and weaknesses and how he is different from others. In this way the teen can gain a real-life understanding of areas he may need to improve upon or that require assistance from others, and areas in which he is proficient, or that are his strong points to build upon.
  11. Bullying is a serious problem and should be treated as such. Bullying can range from verbal taunts to physical encounters. At any level it is not an individual problem, but a school problem. Unless your child’s school strongly enforces a no-bullying policy from the principal on down, your teen may have a difficult time. Teens on the spectrum are poor at picking up social cues, understanding ulterior motives, sarcasm, and predicting behaviors in others. As such, they unknowingly put themselves in unsafe situations. At other times their unconventional grooming or dress, often stilted language and rule-bound obsessions can render them targeted victims. Ensure your teen learns the meaning of non-verbal behaviors and the hidden curriculum (i.e. the unstated rules in social situations). Enlist the help of a neurotypical teen or sibling when shopping for clothes or getting a new hairstyle so your teen has at least a semblance of ‘fitting in’ with his peer group.
  12. The Individualized Transition Plan (ITP) is your teenager’s business plan for the future. Second only to the early intervention years, the transition years in high school are the most important years in your child’s educational life. Skills your teen needs to learn to survive and thrive as an adult, in adult settings, should be the focus of this time in school. The ITP, mandated through federal special education law, is the roadmap for your teen’s future. Once your child graduates or ages out of high school, mandated services are few and programs have waiting lists that extend into years. Spend time (and include your child as much as possible) thinking about what he wants to be doing when high school ends, and 5-10 years from now. Then plan how he will get there and what skills will be needed. This “futures planning” should drive the goals written into his IEP.
  13. Parents, you need to take time out for yourself; it’s good for your child too. With all the responsibilities you have as a parent of an adolescent on the spectrum, you need to take some time out for yourself. Whether it is a short break you take every day to go for a walk, exercise or engage in a favorite activity, or a weekly evening out with your significant other, you need to recharge your batteries. This is also positive modeling for your pre-teen and teen. It teaches that life can be stressful and overwhelming at times for all of us, and that we need to develop ways to manage our stress, and enjoy life, not just l

Just the other day I was looking around the house for Jeremy, who is now 17. I knocked on his bedroom door. He opened the door a crack, one of his Guitar World magazines in hand. I could hear Panic at the Disco playing in the background. “Go away, Mom,” he said, and I did, with a little smile on my face. Jeremy is significantly impacted by his autism. Yet moments such as this remind me that he is first and foremost a teenager, with his own personality, his own wants and wishes. He’s on the road to becoming his own person, figuring things out in preparation for adulthood. I wouldn’t have it any other way.

This article first appeared in the Autism – Asperger’s Digest,  September/ October 2006 issue.

Adapting to Autism

April 2, 2006

Carmel Valley woman’s experiences and books help other families deal
with the disorder

San Diego Union Tribune – April 2, 2006

By Ozzie Roberts
When talking about her 17-year-old son, Jeremy, who copes with severe autism, Chantal
Sicile-Kira, the author of two books on the developmental disorder, often says: “Things
happen for a reason. We all serve a purpose in some way.”
Her husband, Daniel, a quiet, soft-spoken
guy, will give you a bit of a different take.
“Why was my son born with autism? Why
did this happen to our family? I don’t know,”
he’ll say. “It’s just random selection. But
(we’ve) got to play with the cards (we’re)
dealt. That’s life.”

Clearly, Chantal, 49, and Daniel, 53, have
gone ’round and ’round about their son’s
condition.

The Carmel Valley couple have been
married for more than 27 years and lived
together all over the United States, France
and Great Britain. And together, they’ve searched the two continents in often daunting
efforts to find effective help for their son through the years.
The Sicile-Kiras get past their differences and stay united on one major consideration:
They both want the best for Jeremy and his little sister, Rebecca, 13.
So while Daniel supports the family as an architect, Chantal, who worked awhile in
recreation therapy for kids with disabilities at a state hospital, stays at home to be a buoy
for her own young.

In the course, she’s joined the executive board of the San Diego Chapter of the Autism
Society of America; she’s a national speaker for the cause; and she hosts a weekly 30-
minute Internet radio program on Autism One Radio (www.autismone.com) at 10:30
a.m. Tuesdays. Every second Tuesday of the month, she hosts a program in French at 11
a.m.

Chantal also works as a volunteer for the Autism Society, helping coordinate such events
as the organization’s sixth annual gala fundraiser – “All Out for Autism” – set for 6 p.m.
April 15 at Sea World.

Chantal wrote “Autism Spectrum Disorders” and “Adolescents on the Autism Spectrum.”
They’re two books intended to help families of autistic children guide them into living as
independently as possible and making their own informed decisions.
The books teach people about autism and about where to go to get assistance for children
– keys, she says, to coping with the disorder.

“Adolescents,” published by Perigee, a division of Penguin Group, was released last
month. Chantal celebrated with a book signing that was part of a fundraiser for the
Autism Society. It was held at the Poseidon Restaurant in Del Mar.
“Autism Spectrum,” also published in the U.S. by Perigee, and in the United Kingdom by
Random House, in 2004, won the Autism Society’s Outstanding Literary Work of the
Year Award in 2005.

She tells you that she put together the two books primarily on the strength of the
education she and her family gained through their experiences with Jeremy. “I figured if I
had all this information amassed,” she says, “why not share it? (Most) people don’t know
how to (relate to) autistic kids.”

And if the books help others, she adds, it reassures her that her family’s trials are actually
parts of the greater plan.

Jeremy is breathing testament to the positives, Chantal vows.
A junior at Torrey Pines High, he speaks very little and has even less regard for
boundaries. He’ll walk right into your personal space – much the way he did last month
when I visited his family’s home for the first time.

Gangly, with deep-set eyes, Jeremy came nose to nose with me, snatched my hat from my
head and stood, twirling it around, smiling all the while. He likes twirling things.
He’s a major pain with that, says his sister, Rebecca, only because she’s had to put up
with him twirling things out of her room for so many years.
All of that behavior is characteristic of his disorder.

But uncharacteristically, he reads and comprehends at a high school level. He types,
appreciates artistic things and displays a keen sense of the way of things.
“I remain diligent about getting what he needs,” Chantal says, “and I never let him give
up on himself. And he learns.”

With help last February, Jeremy, who goes to school every day with an aide, wrote a 21-
line autobiographical poem for a sociology class that he calls his “I Am Poem.” It’s
insightful and concludes: “Pay more attention to me and less to the label of autism. I am
unique.”

He also likes to have fun, family members agree.
“I love when he and I play games together,” Rebecca says. “I love my brother. He’s really
very nice.”

Says Daniel, his dad: “I guess I’m still making peace with his condition. But I feel a lot
better about where he’s at in his development and in the systems available for him. He’s a
kid, and it’s just been positive seeing him develop over the years.”
Chantal says she sees her son someday living away from home in a supported-living
situation.

“And I’m OK with that,” she says. “It would signal that he’s ready for as independent and
self-determined life as possible – that’s my goal for him, for all kids” with autism.

SignOnSanDiego.com News Metro — Adapting to autism

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