Dear Chantal,

I am currently reading your book Adolescents on the Autism Spectrum,… I have a son who is 27 and throughout his entire life he has been different… Recently I have come to believe he is autistic. My girl friend who has a 13 year old autistic son, says she has always wanted to tell me that she feels the same way in the belief that he is of the autism spectrum, possibly Aspergers. He has almost all the symptoms. I am now in the process of trying to get my son into some doctors in Melbourne, FL who are specialists… He has been a struggle to raise with all of his illnesses and challenges. He has been with disabilities since he was 4. We have been seeing the same psychiatrist for 22 years and were going to the same pediatrician for 17 years. …Why has no doctor been unable to suggest this diagnosis? Help me please. I am very interested in knowing if you have any other books out for adolescents and young adults with autism and/or Aspergers?

Jamie in Florida

Dear Jamie,

It wasn’t until 1994 that Asperger Syndrome was added to the DSM IV (Diagnostic and Statistical Manual of Mental Disorders) which is used for establishing diagnoses. It is only in recent years that Asperger’s Syndrome (AS) has become more understood and recognized by professionals and parents. That is why many adults with AS were actually misdiagnosed as children, often with bipolar, schizophrenia, OCD, and so on. You are right to look for a specialist experienced with Aspergers to ascertain if your son falls on the spectrum. Being properly diagnosed is useful for knowing why someone is the way he is and what strategies can be helpful in the areas in which he may have challenges.

My latest book, Autism Life Skills, based on interviews with adults on the spectrum may be helpful to you and your son to find out what many people on the spectrum say has been helpful to them. As well, you and your son may find GRASP a useful resource for more information.

Chantal

This is why it is important that before they graduate form high school, students  know how to advocate for their needs. This includes having a good idea of what their disability is and how to describe it, what kind of learning style they have, their strengths as well as their weaknesses, and know what accommodations they will need. These students should know their rights, be able to discuss the accommodations, and know how to carry on a conversation and convince the college of their need. Some Disabled Student Services are knowledgeable and helpful to  students on the autism spectrum, others are still more comfortable with students that have a physically challenging condition, and have a difficult time with those who have an ‘invisible disability’.

All students on the spectrum need to learn self-advocacy skills,  but those heading to college need to learn them before they  graduate. If you are a parent or an educator of a high school student,  have self-advocacy goals addressed in the  IEP (Individualized Educational Program) or ITP  (Individualized Educational Program).  High school is the best place for him or her to start learning these skills, if he or she  has not already done so. For some information on transitioning from high school to college, check out  Catching the Wave from Grossmont College, a community college in the San Diego area. Some of the resources and facts may apply only to California, but there is a lot of good information for high school educators and parents to consider.

Jeremy Sicile-Kira

waiting

Here’s one way of teaching the concept of waiting:

• Make a nice- sized (4×4 or bigger) picture icon that has a figure sitting  in a chair, and the face of a clock on it. Put it somewhere convenient and noticeable, such as the refrigerator.
• Glue a piece of velcro  on the big icon for putting a smaller  icon of requested item on it.
• Have a timer available.
• Have small icons of the child’s favorite items that he likes to request.
• Have those items (food or toys) within his eyesight but out of his reach (but easily within yours).
• When child asks for item out of reach, show him the corresponding icon, place it on the bigger waiting icon, and say “we are waiting” and set timer for whatever his capability for waiting  is at this point (10 seconds, 30 seconds, 1 minute).
• As soon as the timer rings, give him immediately the requested item. Tell him “We are finished waiting.”
• Do this many times  whenever the opportunity arises and extend the amount of time until the child can wait longer and longer.

Each child is different in how long this will take or for how long he can learn to wait (and this will change as well over time).  Eventually when he is asking for a ride in the car and you can’t go right away, you can tell him “Not now, in 10 more minutes your sister will be ready. We are waiting,” and he will get the idea that he may not get what he wants now, but he will get what he wants eventually. This will lessen his frustration, and subsequently, yours.

Back in August, I wrote this post for my Autism and Adolescence column in the Examiner.com, and I’m re-posting it here because I’ve received a few emails with questions recently from general education teachers. Maybe there are others who could use these little nuggets of information.

Often junior high and high school teachers have teenagers with Asperger’s Syndrome included in their classrooms, and are not given much in the way of useful information. This column will provide a few practical tips that may be helpful to educators with no practical knowledge about students on the spectrum.  For more information, check out this webpage.

Asperger’s or High Functioning Autism (HFA) is often described as an ‘invisible disability’ because students on the spectrum do not look different frorm most students. Most teachers expect them to act like everyone else, but often the student gets in trouble for behaving in a way that seems rude, disruptive or non-compliant.  A diagnosis of Asperger’s or HFA is based on challenges in the areas of communication, and social relationships, as well as what appears to be an obsession or passion for a particular area of interest.

Here are some tips that may help the school year go a little easier for you and your student on the spectrum:

• It’s a good idea to have a hard copy of the homework assignment to hand to your students on the spectrum, because most of them are mono-channel. This means they cannot look at the assignment on the board, write it down and still be able to focus on what you are saying. By the time they have finished copying down the assignment, they have missed your intro to that day’s lesson. This mono-channel aspect makes it hard for a student to multi-task, and by only requiring him/her to do one thing at a time, it will be much easier for the student to stay focused.
• The student with Asperger’s or HFA usually takes things literally – this is part of the communication challenge. For example, if you address the class by saying “Please turn to page 12,” expecting the students to start doing the work on that page, the Aspie student may turn to page 12, and then just sit there, awaiting further instruction. Meanwhile, you may think he is being a smart-aleck, but I assure you, he is not. You need to say “Please turn to page 12 and write the answers to question 1-5 in your notebook.”
• This taking things literally means that also the student may not understand all the nuances of language or social customs, what we call ‘hidden curriculum.’ Think of what it is like as a foreigner in a new land and how they need to be explained the local customs- that is what it is like for a person on the spectrum.
• Students on the spectrum are often described as being obsessed with a particular topic or subject, for example, space travel, buildings, certain types of music, transportation. Actually, being passionate about a topic shows an interest in learning. If you know what your student is passionate about, you can relate your lessons or subject in some way to his area of interest and your student will excel.
• Many students on the spectrum are overly sensitive to noise and crowds, making transition times between classrooms difficult. By allowing the student to arrive or leave a few minutes early or late, you will make it much easier for that student to  arrive to class less stressed, and ready to focus on the lesson.

Students with Asperger’s Syndrome or HFA are usually very bright and eager to learn. Hopefully these tips will help the year be a more productive one for you and your student.

Auditory Integration Training / Photo Rebecca Sicile-Kira

In my last Psychology Today post I discussed sensory processing disorder, and received  comments and  questions from readers.  I had mentioned an article  in The Boston Globe that  mentioned that  a  group of  professionals and parents  was  lobbying to get sensory processing disorder included in the next Diagnostic and Statistical Manual of Mental Disorders. Reader Dr. Joshua Feder wrote in to give us the link where people can provide input:  “Remember, the public commenting on the upcoming DSM-V is still in process and the addition of SPDs is in flux, so if you think it is important you can make your voice heard. Go to http://www.spdfoundation.net/dsmv.html to learn more!”

Sensory processing challenges is a hot topic at autism conferences  and this provides me the opportunity of asking adults on the autism spectrum  what we could do to make the sensory aspects of life easier for them, as well as children who may be unable to discuss what they are sensing. I have written up the answers in my book, 41 Things To Know About Autism, and I am mentioning some of them here.

It was no surprise for me  to get answers such as   “Ban leaf blowers,” or “Don’t rev your Harley near me,” and “Add more water fountains to public places.”   The sound of water  can be soothing to many and can mask some of the painful sounds of the city.   There are different methods and treatments that  have helped many who have  sensory processing difficulties. However, there is not that much clinical research on all the diffferent treatments and therapies, so you need to choose widely what makes sense for your particular situation. The information here is not to be considered as medical advice; I am just explaining what others have said  reported as helpful for their situation.  Remember that what works for one person, may not for another.

There are ways to help people who have sensitivities to light and sound. The cheapest and most immediate solutions include:

• Wearing a baseball cap or hat with a brim and sunglasses, can help with keeping bright lights out of the eyes in brightly lit environments.
• Headphones with music or white noise can cancel out noisy environment.
• Desensitization is a way to get a person de-sensitized or used to certain environments, for example  an overly-lit store, by going in a few minutes the first time and then increasing the time spent in that environment.

Some treatments that have helped individuals include:

• Biomedical Interventions in the form of diets and supplements: Donna Williams, author of nine books on autism, credits diets tailored to her specific allergies, as well as supplements, as having helped her overcome many of sensory issues.
• Auditory Integration Therapies: Individuals wear headphones and listen to modulated sounds and music, with certain frequencies filtered out. There are different methods, one developed by Dr. Guy Berard, another by Dr. Alfred Tomatis. Other types of listening programs include The Listening Program and Samonas Auditory Intervention.
• Vision therapy:  This therapy, which can consist of a combination of exercises and lenses, can be effective to help process incoming information for someone whose vision processing is not working correctly.
• Occupational Therapy: The aim of OT is to help a person meet goals in areas of everyday life that are important to them. OT’s canhelp with propioceptive and vestibular challenges as well.
• Sensory Integration Therapy: This specialty area of OT is carried out by occupational therapists specifically trained in this method. The term sensory integration refers to the way the brain organizes sensations and input received to then engage in the environment.
• Sensory diet: Often an OT will prescribe a sensory diet of activities to be repeated numerous times a day at regular intervals to help the child stay regulated. As a child gets older, he can learn some activities he can do to help himself. The child then learns self-regulation techniques as he gets older.

This post was published on PsychologyToday.com on March 14, 2010.

Earlier this week,  there was an article in The Boston Globe about sensory processing disorder. It stated that a group of researchers, families, and occupational therapists is aggressively lobbying to get sensory processing disorder included in the next Diagnostic and Statistical Manual of Mental Disorders, which is currently being drafted.

Many readers may wonder, what is a sensory processing disorder?

Sensory Processing Disorder (SPD) is a neurological disorder that causes difficulties with processing information from the five senses: vision, auditory, touch, olfaction, and taste, as well as from the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SPD, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SPD; the difference is that information is processed by the brain in an unusual way that causes distress, discomfort, and confusion.

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:

• Take data over a week or so on exactly how long he can work before he gets up and runs away.
• Establish the amount of time he can stay and work without getting up away from the table (ie 19 minutes).
• Make a bunch of break cards. They can be really simple – just take some index cards and write “break” on them. If the student needs a visual, use an icon or drawing of some kind, representing a break.
• Next time you sit down to work, have a timer ready, and the break cards in front of him. At 17 minutes (before he would normally get up and run away) prompt him to give you a break card (having another person to help prompt him is best), then allow him to have a break, telling him he has a 3 minute break, or whatever amount of time is appropriate for that student, and set a timer.
• Make sure he comes back (you may need help with this at first, or a favorite reinforcer back at the table). Keep doing this every 17 minutes and over as many days as it takes for him to get the idea that he gets a break every time he hands you the break card.
• Then, put a pile of break cards within reach of the student, and give him a break every time he hands you a break card, until you know he gets the connection between giving you the card and getting the break. For some this will happen the first day, for others it make take many days.
• Then, since you know he can sit for 19 minutes, put 3 break cards in front of of the student and tell him he will have only three breaks the whole hour. If he chooses to use the 3 break cards immediately, he is not allowed any more breaks, as you know how long he is capable of sitting and learning. You may need help keeping him seated, perhaps allowing him access to his favorite reinforcers. Eventually, he will pace himself to use the break cards on as-needed basis, meaning every 18 minutes or so. (Note: If the student does not ever want to return to the table, you may want to re-visit your lesson plans. Are you still working on the same lesson in the same way repeatedly? Perhaps the lesson is too easy and the student is bored).
Once the student has mastered using a break card, you can generalize to other environments and situations. It’s a great way to give the teen some much-needed control over his or her time, as well as teaching an appropriate communication skill and behavior.

First published in the Examiner.com February 6. 2010

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

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

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