Author, Speaker, Autism Expert

What is Sensory Processing Disorder and How Is It Related to Autism?

By Chantal Sicile-Kira |  March 3rd, 2010 |  Print Print  | 

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.

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Posted In: Autism Life Skills, PsychologyToday.com
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Modern Love

By Chantal Sicile-Kira |  February 9th, 2010 |  Print Print  | 

My son is pining for a girlfriend. He’s on Facebook.

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

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

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

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Posted In: Adolescents and Teenagers with Autism, Adults on the Autism Spectrum, Love and Relationships, Spectrum Magazine
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I am an adult and I think I may have Asperger’s Syndrome (AS). How and why should I get diagnosed if in fact I do have AS?

By Chantal Sicile-Kira |  February 2nd, 2010 |  Print Print  | 

This article originally appeared in The Autism Advocate blog at PschologyToday.com

Usually I write mostly about children or adolescents on the autism spectrum. However,  I’ve been getting quite a number of emails lately from adults wondering if they have Asperger’s Syndrome or not, so I decided to share some information from my book to be published March 25, 41 Things to Know About Autism. Asperger Syndrome (AS) is a high functioning form of autism that has only been an official diagnosis since 1994. Adults with AS who seek help with challenges they face are sometimes misdiagnosed with depression, bipolar disorder, or other mental illnesses. It is important that adults questioning whether or not they have AS, seek the services of a professional experienced in assessing AS in adults (see resources below).

If you are an adult with characteristics resembling AS, why does it matter if you get a diagnosis or not? If you are functioning well and have a job, and are happy with the life you have, then there is no reason to get a diagnosis. On the other hand, if you are struggling in important areas in your life, a diagnosis can provide a framework for understanding and learning about behavioral and emotional challenges that have seemed unexplainable until now. Although challenges in sensory integration (the ability to organize sensory information for use by the brain) are not considered diagnostic criteria, I have yet to meet a person with Asperger’s who does not have a sensory challenge of one kind or the other.

Some areas of difficulty where Asperger’s Syndrome could possibly be a factor:

  • Do you have a tough time making and/or keeping friends, and don’t understand why? Or perhaps your friends are only interested in you when you’re engaged in an activity or interest that you share, but you have not built a personal relationship.
  • Are parties not your thing because you feel uncomfortable or overwhelmed? Social events are a great way to meet people and they can be essential for business, dating, and even marriage. But if you are uncomfortable because you are unsure of what to wear, how to start conversations, you have a hard time reading body language, then these supposedly fun events can be torturous.
  • Do you avoid social events because you can’t hear the person next to you over the hum of the crowd, you don’t like the touch of shaking people’s hands or having people pat you on the back? Do you a problem focusing on what people are saying while looking at them?
  • Have you ever met someone special that you wanted to get to know better, but didn’t have a clue as to how to go about asking him /her out on a date?
  • Has someone you are very fond of pointed out certain behaviors that drive them crazy and suggested that you might have Asperger’s Syndrome. Maybe there is something to their suggestion.
  • Do you have a passionate interest in a certain subject or topic? Perhaps you’ve been called obsessive but you think you’re just very interested in one incredibly fascinating subject matter. This passionate topic could help you in other areas of your life, if only you knew how to use it.
  • If you are a college student , do you have trouble keeping up with coursework and finishing a degree? Perhaps you could use some help in getting and staying organized and planning your time.
  • Do you have trouble in getting and keeping a job that reflects your abilities even though your credentials look great on paper? It could be that you are very talented but don’t have a clue as to how to do the sell your self during an interview. Maybe the office politics are just something you don’t get, so you are routinely passed up when it comes to promotions.

Why you should get a diagnosis, if indeed you do have Asperger’s Syndrome:

  • You can begin the process of learning to live more adaptively with an Asperger’s brain.
  • Getting a diagnosis may help you find the strategies you need to be more successful in the areas where you are facing challenges
  • It may also help others in your life understand why you are the way you are, and respond to you differently.
  • There is a whole community of people who get who you are, how you think, how you feel, and that you can share experiences with.
  • There are autism and AS support groups out there (on-line as well as in person) who can help you in many ways so you don’t have to feel isolated and figure everything out for yourself .
  • You may be eligible for service services in areas of need thanks to having a diagnosis – perhaps help with finding a job or a place to live.

How to find out if you have Asperger’s Syndrome or not:

  • Typically you need to see either a clinical social worker, a licensed professional counselor, a psychologist, a psychiatrist or neuropsychiatrist. It is important to see a professional who specializes in autism spectrum disorders or Asperger’s Syndrome, who is familiar with Aperger’s Syndrome in adults.
  • One way to find the right person in your geographical location is to contact The Global and Regional Asperger Syndrome Partnership (GRASP), http://www.grasp.org/and the Autism Society of America (ASA). These organization may have chapters in your area. If not, they can provide you with the names of professionals who would know someone to refer you to, in your geographical area.
  • if you know parents of children with autism, ask them about the professionals in your area familiar with autism. If those professionals cannot help you, they will refer you to someone in your area familiar with AS in adults.

To find out what some adults have to say about growing up with AS, read Autism Life Skills.

Posted In: Adults on the Autism Spectrum, People with Asperger's Syndrome, PsychologyToday.com
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I think my child may have an autism spectrum disorder (ASD). What do I do?

By Chantal Sicile-Kira |  January 21st, 2010 |  Print Print  | 

This article originally appeared in The Autism Advocate blog at PschologyToday.com

Getting a diagnosis – if indeed a child has an autism spectrum disorder (ASD) – as early as possible is important because research shows that early intervention is the best intervention. Yet, not all pediatricians recognize the early signs of a possible ASD.

Although diagnosis rates of autism are up, this does not mean that all doctors or medical professionals are aware of the different signs of autism in different types of babies and toddlers. A diagnosis is made by observing the behavioral characteristics in three areas : communication, social interactions, and imaginative play or thought. As there are no physical characteristics that are shared by those in the spectrum, and there is a wide range of abilities and disabilities – it is not always easy to identify.

The difficulty is that right now, there is no medical test that can be given to tell if a person has autism or not. Not all children with autism develop in the same way. For example, my son as a child, never reached his developmental milestones, had to have physical therapy to learn how to sit up on his own, crawl and walk. By age two, he only had two words. He would spin the same toy over and over if left to his own devices. He never reached out towards other children when in group situations. Another child I know who also has the label of autism hit all his developmental milestones as a baby, but never slept through the night, and had chronic diarrhea. Around 18 months he began to stop speaking, he began to line up toys over and over and no longer initiated social interaction with his parents or siblings . As a toddler, he was very active and had a hard time staying still for any amount of time.

Often it is the mom who has a concern, because her baby boy is not going through the developmental milestones at the usual pace, and so she will discuss it with the pediatrician. If the pediatrician is not very knowledgeable about autism, he may tell mom to wait a few months and come back, saying that boys don’t always develop as quickly as girls.
What ASD’s looks like at the different ages and different places on the spectrum is variable. Thus, choosing the right professional is important. For example, a baby may go through all the developmental milestones, but at around age 8 or 9 there may be concerns about how he is relating to other children his own age, or he may start having problems with the organizational aspects of the homework when projects over time are given has homework. This child may have Asperger’s Syndrome, which looks different than your typical classic autism (non-verbal, no social skills at all) which is apparent much earlier.

In the past many children, teens and adults with Asperger’s Syndrome (AS) were mis-diagnosed as having mental illnesses or learning disabilities, thus impeding there access to the information and strategies that would be most helpful to them. It is important when getting assessments for a child or teen for possible diagnosis of Asperger’s that the professional (usually a psychologist) observe the person in different environments as well as assess in an office. This is because a person with AS may very well recite the correct answers to questions of what to do in specific situations, but when it comes to the reality, they have not internalized the information to be able to apply it to themselves.
My advice : follow your instincts. If you are the parent, you know your baby or child best because you spend the most time with him or her. If you think there is something wrong, there probably is. The important thing is to find the right person who can tell you if your baby, child, or teen has an ASD. Remember, in all that you do, you are not alone. There are many people in your situation, looking for answers. Take the first step and see a professional who can help you.
If you are a parent wondering whether or not your baby is reaching his developmental milestones, there is a list of them on the First Signs website: http://www.firstsigns.org/healthydev/milestones.htm

Keep in mind that some children have regressive type autism – they develop in the usual way and then lose skills previously learned. Also, this checklist does not include the gastrointestinal challenges that many babies suffer from, so keep those in mind as well.

To find a professional familiar with autism diagnosis in your geographical area, contact other parents who have gone through the diagnostic process in your area. You can find them by contacting local autism organizations in your area:

Autism Society of America (ASA) – You can find a chapter by going to this page on their website:
http://www.autism-society.org/site/PageServer?pagename=community_chapters

Talk About Curing Autism Now (TACA): http://meetup.tacanow.org/

National Autism Association: http://www.nationalautismassociation.org/localchapter.php

If you think your baby or child has an ASD, it is important to seek the advice of a professional who is knowledgeable about the behavioral symptoms as well as the diagnostic criteria – and the sooner, the better.

Posted In: People with Asperger's Syndrome, PsychologyToday.com
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Temple Grandin: The HBO Movie starring Claire Danes

By Chantal Sicile-Kira |  January 13th, 2010 |  Print Print  | 

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.

Posted In: Adolescents and Teenagers with Autism, Adults on the Autism Spectrum, Articles, Autism Life Skills, Employment, Huffington Post, Parents of Children with Autism, People with Asperger's Syndrome, Resources For, Siblings of a Child with Autism, Transitions
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Dear Santa

By Chantal Sicile-Kira |  December 24th, 2009 |  Print Print  | 

Dear Santa,

This year, I am not asking for a cure for breast cancer, or cures for world hunger, ignorance, the crappy world economy, homelessness, the negative aspects of autism, greediness, war, global warming, or any other crisis facing the world today.

This year, I am being purely selfish and asking for fulfillment of a few basic needs for my family. I realize that compared to others, we are a very fortunate family because we have a roof over our heads, and my husband and I still have work (although we are making only 2/3rds of what we were making the year before and the cost of living is way higher, but why quibble?).

At the risk of appearing greedy, here is my wish list for what I would like to find under the tree this Christmas :

1. $100,000 for a college education for my daughter, Rebecca. She is graduating from high school in June, and according to the local papers, she will be lucky if she graduates from a state college or university in 5 or 6 years, if she gets in at all. Our beautiful state is broke, so there will be less students admitted to the colleges in fall 2010. Rebecca is applying for scholarships, and working some, but it’s not going to be enough. There is not much in the way of student loans anymore. We have equity in the house, but we need to save it for real emergencies, like if our income continues to spiral downward (oh, and our son requires 24 hour support, and how are we going to pay for that?). Please, can you help us here? We’d be grateful even for a quarter of that amount.

2. A bigger iPhone for my son, Jeremy. I know this may sound like a weird request, but he can’t talk very much due to his autism, and Apple has this great program called Proloquo2Go which can give him a voice. Problem is, the iPhone keys are really too tiny for him. Jeremy uses another assistive technology device, but it is heavy, hard for him to push the buttons, and frankly looks very ’special ed.’ Not only that, but it costs a small fortune compared to the iPhone, and breaks down often. Communication is key to being an active part of society, and looking cool is important at his age. Please tell me you agree and grant this wish.

3. If you don’t have any pull with Apple re: the iPhone, another wish high on my son’s list is a girlfriend, because besides communication (and $$$) what is life without love or a warm body to hug? I’m sure living at the icy North Pole, you and Mrs. Santa can relate to that. Seems like something a mom shouldn’t have to ask for her son, but although my Jeremy is buff from working out at the gym and really cute, he’s not typical boyfriend material what with his autism and all. Funny thing is, Jeremy doesn’t understand why I just don’t run out to Costco and get him a girlfriend – I’ve been getting him everything else he needs all these years like occupational therapy, speech therapy, physical therapy, vision therapy; why not a little massage therapy? Maybe you can help with this one?

4. For my husband and I, my request is not that you give us anything, but we would like you to take back the 15 extra pounds each that we have put on stressing out on #s 1,2,3 above on our wish list. Feel free to re-gift them to someone else who could use a little fattening up. We would be happy to know that we are helping a family in need.

5. Last, but not least, For our dog, Handsome, and our cat, Gabe, a year’s worth of food would be helpful. We’ve had to start rationing and Gabe keeps trying to get outside to hunt for her dinner, and we really like the birds in the area – we don’t want them to end up in Gabe’s tummy.

I guess that’s it for what we’d like to see under the Christmas tree this year. I know there are people worse off than we are, and I feel guilty even sending you this letter. I hope you understand.

Thank you in advance, Santa. We wish you and Mrs. Claus, all the elves, and the reindeer, a very Merry Christmas and a Happy New Year!

Sincerely,
Chantal

Posted In: Adolescents and Teenagers with Autism, Communication, Huffington Post, Love and Relationships
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Then and Now: Reflections on Raising a Son with Autism

By Chantal Sicile-Kira |  November 1st, 2009 |  Print Print  | 

This article originally appeared in Autism- Asperger’s Digest, Nov-Dec 2009 issue.

My first contact with autism – 30 years ago – was at Fairview State Hospital in Orange County, California. I worked there two years, preparing young adults for de-institutionalization, teaching them self-help and community living skills using behavioral methods. I learned about discrete trials, prompting, rewarding and taking data. Little did I know years later I would be using these same techniques to teach my own son, Jeremy.

To this day I vividly remember my first contact with a young adult with autism. It was my first day at work, and I was waiting in the recreation therapy office for my boss. Gregg walked in. “Hi my name is Gregg Doe. I used to be a sports newscaster. Do you like baseball? Ask me about any World Series and I can tell you who won and what the score was.”  I was thinking how dedicated this man was to leave a job in television to work at a state hospital, until I looked at my clipboard and saw his name included in the list of people I was supposed to teach. Gregg could tell you all about sports, but couldn’t tie his own shoelaces.

Fast forward to today: I know a lot more about autism, and so does the general public. Then, I would take Gregg and his peers into the community to practice crossing the street or ordering food in a restaurant, people would stare and avoid getting too close. Now, when my son – who at 20 is about the same age as most of my Fairview patients back then – is out in public, people are more accepting, even when Jeremy is not on his best behavior. People smile at us, some stop to talk and ask questions when he has his assistance dog with him. People’s attitudes towards autism – and people with autism – have changed, in a good way. Services for kids have improved. Teachers are more knowledgeable about autism.

What has not changed over the years, however, is the devastation a parent feels when hearing the diagnosis of autism for the first time. Difficult then; just as difficult now. No matter how deeply inside you realize something is wrong, suspect it might be autism, the professional pronouncement still kicks you in the stomach and sends your head reeling. Today there are many different treatments and therapies, a good thing. However, there is still no know way of knowing which therapy or biomedical treatment will be helpful to your child. Then and now: we grieve, we live amidst uncertainty, we lie awake night after night searching for answers.

When Jeremy was born in Paris in 1989, autism was still fairly rare: The estimated diagnosis rate was 1 in 10,000. It’s still painful to think back to Jeremy’s early years. It was almost impossible to get any help for him at the time. I knew he was not developing normally, and I wanted to know why. I wanted somebody to tell me what to do to help him. Most of the medical professionals I consulted  told me to take him to see a psychoanalyst – this was the treatment of choice in France at the time. When Jeremy finally was diagnosed, at age three, the specialist handed me a box of pencils and said,  “If you are lucky, you will find a good institution for your son. He will eventually learn to package pencils into a box. That’s where these came from.” That was then. This is now: I have found an institution for my son: it’s called “college.” Jeremy is headed there after he graduates from high school in June 2010 – with a full academic diploma. He passed the California High School Exit Exam (one of the requirements), without modifications, only accommodations. He now needs to take and pass one year of algebra and one semester of science to earn his diploma.

My son’s success is not a miracle, rather the result of years of blood, sweat and tears (on his part and mine), and the hard work of many educators, home tutors, Jeremy and myself. I’m not especially talented, but I am very stubborn. I never asked the school for anything I had not first tried with Jeremy myself, experienced success and results, and had the data to prove it.

When Jeremy was 14, I took him to see Soma Mukhopadhyay, now Educational Director of HALO (Helping Autism through Learning and Outreach). I met Soma while doing research for my first book, Autism Spectrum Disorders. It was then I realized Jeremy was an auditory learner. All the years of using visual strategies, myself and educators thinking he was not “getting it,” finally made sense. Fifteen  years ago visual strategies were the new kid on the block. Today a huge assumption exists in our community that all or the majority of students with autism are visual learners. It is simply not true. How many kids who “don’t get it” with visual strategies are really auditory learners, making marginal success because we’re not teaching to their learning style?

Soma started to teach Jeremy using the Rapid Prompting Method. It involved a lot of work, but slowly he began to make progress. That year I also realized how much he was “stuck” in his body. He could spell out and describe the steps needed to complete a sequence, but he could not move his body to do it without physical prompting.

Jeremy’s challenges (see sidebar) were, more often than not, a result of sensory processing issues and movement disorder. When I interviewed adults on the spectrum for my third book Autism Life Skills, I asked each what was important to them growing up. It surprised me to learn the great impact sensory processing challenges had, even on those with Asperger’s Syndrome.

My views about autism and autism treatments have changed over the years. Then, I was a die-hard behaviorist; I only used treatments scientifically proven to be effective. Now, I embrace different types of therapy as adjuncts to using behavior-based strategies (shaping, prompting, rewards, etc.). After witnessing Jeremy’s success with RPM and pointing to letters, having it validated in different ways by different educators, I believe parents should try a therapy or educational strategy that makes sense for the child and family. See if it works; there are ways of validating on an individual level.

While working with young adults at Fairview  before I had Jeremy,  and even while he was little, my face scrunched up in disbelief when nonverbal people severely impacted by autism were described as “locked up” in their body, with no way of reaching us. Now I know exactly what they mean; this is Jeremy. I strongly believe there are different types of autism. I believe that for some, like my son, autism is a movement disorder. They cannot always control their movements or use their muscles (needed for speech and other important skills). Many, like my son, have problems initiating and stopping movement,  yet are capable of learning nonetheless.

Then and now, autism remains a multi-layered condition with no clear answers to guide parents and professionals. Then, treatment options were limited…so very limited. Now, options range from behavioral to biomedical, from sensory to social skills, and everything in between. Then, parents were told to expect the worst, to institutionalize their child, move on with the lives. Now, thankfully, we hold a brighter vision for our children’s future. Then and now: our children are gifts in our lives and our love endures. That will never change.

Sidebar

by Jeremy Sicile-Kira

Jeremy tells us…

When I was little, I had no real way of knowing what was going on around me. My body would not move even when I tried. Life was just chaos with light and sound but with no meaning. Then a physical therapist helped me learn to use my body. My mom helped me make sense of what I was seeing and hearing. I had tutors my mom hired that taught me with ABA. Then I had hearing therapy and lenses to help me see. It took a lot of effort on my part and the tutors to help me learn. Then my mom found Soma and RPM. This changed my life. I did not believe I could be so kindly taught by such a tiny woman. It is still lots of work and it is still difficult when I meet new people.

Having a way to communicate only makes life livable, but I need some nice relationships, which are not easy when you are like me. I plan to continue to learn, and to tell people to never give up.

Posted In: Autism-Asperger's Digest Magazine, Communication
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Open Letter to Governor Arnold Schwarzenegger

By Chantal Sicile-Kira |  August 24th, 2009 |  Print Print  | 

Dear Arnie,

I hope you don’t mind me calling you Arnie, but I feel like we have a lot in common. My family also immigrated from Europe to follow the American Dream, and a couple of years ago I had the pleasure of meeting one of your wife’s relatives — Anthony Shriver — when we were both invited to speak at the Shafallah Center for Children with Special Needs in Qatar. Also, your oldest daughter, Catherine, was born the same year as my son, Jeremy, and my daughter is a few months younger than your Aurelia. And did I forget to mention? We live in the same state. So, I feel close to you.

Arnie, I’m writing to you today in regards to a topic I know you are sick of hearing about. I promise, I’ll keep it short. It’s about the budget. I just want to know, have you forgotten the nice things about living in the old country? I’m not sure about Austira, but I know from personal experience that in France, Germany and the UK, they take care of their young, their sick, their old, and their disabled — those who are now who are suffering the most from the budget cuts here in California. By the way, I’m still trying to figure out how we got into this position; I heard that if California were a country, it would rank among the ten largest economies in the world, interesting, huh?

Speaking about budget cuts, my friends are always picking on me about the French only working 35 hours a week and how the system over there is going broke. Well, now all my friends working for the different California state departments aren’t laughing anymore — they are being forced to work as little as the French (you know, those unpaid furlough days they have to take?) — and our beautiful state is still broke. Big difference — in France — the same workers are getting health care and 5 weeks paid vacation, nice pensions, can you beat that? Weird, huh?

Granted, Europe is not perfect and it was hard to be a self-made man back then in the old days, (easier now, so I have heard). When I was over there working in TV and film, I could not get an education for my autistic son (I hear that, too, is beginning to change). But when I was pregnant with my daughter, Rebecca, the French doctors realized from the pre-natal care that they had insisted in providing me,  that she was going to be born with a certain medical condition. Rebecca required shots, blood tests, medication and frequent monitoring. They gave her excellent medical care (all for free) for a year and continued to monitor her afterwards. Thanks to that preventative and early intervention, today she is healthy, and on her way to becoming a productive member of society.

My French grandmother lived in Paris till she was 96, bless her heart, and she did not have to worry about having a roof over her head and enough food to eat (what with rent control and all). Memere had health care workers visit once a day, and when she could not climb the stairs anymore she went to an old age home which was an old Victorian house — where many of her former neighbors lived. She enjoyed the last of her days without worrying about how she could afford to eat and sleep. Memere was a factory worker, and she had her pension, and medical care, too.

In comparison, my mom has Parkinson’s, she is stuck in a wheelchair and lives in a nursing home down the street from me, and believe me — you don’t want to now how much it costs. I’m not sure what we are going to do when Maman’s money runs out.

Meanwhile, I have raised my son, Jeremy, despite his severe autism as best I could, and he has become an inspirations to many in the autism community. You can see for yourself on MTV’s True Life, in “I Have Autism.” In fact, his story was picked as the one of the tops 5 most inspiring moments for overcoming challenges from a couple of hundred True Life Stories. Last fall, he passed the California High School Exit Exam, all by typing with one finger. Pretty amazing, huh?

Arnie, I love the whole self-made man and the “American Dream” that made you move here years ago in the first place — which is why I was so thrilled when the state of California started some self-employment projects for people with developmental disabilities. My son and I have been involved in a few of these projects; he is all for pulling his own weight. ‘Course now with all the budget cuts, I’m not sure what is going to happen to him and his American Dream.

Which reminds me — right now, my husband still has a job, although it is in construction project management, so who knows how long that will last. I kinda worry sometimes what will happen to our family — our nice middle class tax-paying family if the construction business completely dries up. And I’m sure we can’t be the only ones losing sleep and worrying over stuff like this.

Now, I know I am rambling here — I’m almost done — but did I tell you about my Rebecca? I’m very proud of her, too. She is going to be a senior in high school and we are going on a road trip next week to visit some University of California and State College campuses in California. I don’t have the heart to tell her it is probably a waste of time — with all the budget cuts I’m not sure she will get in (even though she is an excellent student) because they are admitting less people next year — what with the budget cuts. Even if she gets in, I’m not sure how we can afford it, seeing how Rebecca’s brother and her grandma are going to be depending upon us more and more this coming year.

Hey, I read yesterday in the Sunday New York Times that Tom Arnold says he is making a movie with you in 14 months — it’s going to start shooting the day after you leave office? He says there is no plot or script determined yet. He said, “It’s not going to be called ‘True Lies II,’ but it might as well be…” Well, that’s pretty funny, though I don’t think he meant it quite that way.

But actually I have an idea for your first movie when you leave office — it goes like this: you take a wealthy state like California, and you take away the social supports in place for the children, disabled and elderly; you force those who have government jobs to close their offices a few days a month and take a cut in pay; drive the unemployment rate up to 10%; you mix in a few natural disasters like wildfires in San Diego, Los Angeles and Santa Barbara; add an earthquake in San Francisco; and — but wait! Didn’t these things happen already? LOL — I guess it can be a reality TV show!

Actually, I think we could all use a good, funny comedy when you are back in Hollywood, don’t you, to take our mind off our troubles? Come to think of it, going to the movies is not in our budget anymore. Hope it doesn’t effect your children’s future if most Californians can’t afford movie tickets anymore, either. Actually, it probably won’t even make a dent a your finances. “Funny the way it is, if you think about it, somebody’s going hungry and someone else is eating out.” Dang! This darn Dave Matthews song keeps playing in my head! So annoying.

Now please, Arnie, don’t get the idea I’m blaming you for all this. I understand it takes more than a few years and a few people to get us into a mess like this. But, right now, you’re the top man — “the buck stops here.” Which reminds me — I read the other day in my local San Diego Union Tribune that LA City Hall paid an estimated $1.4 million on police protection and other services at Michael Jackson’s memorial, including $48,000 on sandwiches brought in for police from 70 miles away. Those must have been some sandwiches! (You know, sometimes I’ll go that extra mile for a cheeseburger from In-and-Out, but I digress). Anyhow, I’m a big fan of Michael Jackson, but where did all that money come from to pay for this?

Well got to go — need to write a letter to President Obama. Gotta let him know I can’t afford to volunteer for the community anymore. Got to spend every free moment earning money or taking care of my mom and son. By the way, I’ve spent money traveling around to advise different autism taskforces around the state these last few years — do you think I can get reimbursed for expenses? I could use the gas money now.

Please give my best to your lovely wife, Maria. I really do appreciate all that she and her family have done for the developmentally disabled — Special Olympics, Best Buddies. God knows we need these volunteer programs now more than ever.

Thanks for all you do,

Chantal

Posted In: Adults on the Autism Spectrum, Employment, Huffington Post, Transitions
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Autism and Adolescence 101: How do I teach my teen the concept of “private”?

By Chantal Sicile-Kira |  July 23rd, 2009 |  Print Print  | 

This article originally appeared in Examiner.com’s Autism &Adolescence Column

It is extremely important that teenagers understand the different behaviors and conversations that are appropriate in public,  and the kind that are meant to be private. For example, touching certain parts of your body in public is inappropriate, and can even get the eighteen and over adolescents in trouble with the law. Having conversations at school that are appropriate to have at the family breakfast table but are  inappropriate  in a peer lunchroom setting, can get a teen labeled weird at school and  prevent friendships from developing.

One way of teaching the concept of “private” and “public” that can be used with different ability levels is to use two picture icons, one of a fully-clothed  figure labeled with the word “public,” and one of a figure clothed only with underwear labeled “private.”  A good time to start teaching this is when your tween is attempting to have “private time” (the euphemism in our house for masturbation) in the living room, or is still insisting on running around the house with no clothes on.

Show your tween the icons, and explain which behaviors are private and should be done in his room only, and which are public and OK everywhere in the house. For those more impacted by autism, putting the private icon inside his or her bedroom door, and the public one outside his bedroom door is helpful. Then, you can remind your tween when inappropriate private behaviors are occurring outside his room, ‘That is a private behavior you do in the privacy of your room,” and take him to his bedroom and show him the icons.  Same with appropriate and inappropriate conversations.  An adolescent female may need to be reminded that is  OK to discuss her menstrual cycle at the breakfast table at home (private conversation), but not at the school cafeteria at lunchtime (public place).

Teaching the concept of private and public  is crucial  to helping  your teen understand what is appropriate and  what is inappropriate behavior in public – a concept that will be invaluable as he or she becomes more independent.

Posted In: Adolescents and Teenagers with Autism, Examiner.com, Parents of Children with Autism
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Travel Tips for Families with an Individual on the Autism Spectrum

By Chantal Sicile-Kira |  July 1st, 2009 |  Print Print  | 

Transitions are usually difficult for many on the spectrum, and traveling is really a series of transitions. Preparing the person – child, teenager or adult – as much as possible will make any trip a more enjoyable experience for all involved. Some advance planning of specific steps of the trip can be made ahead of time. Below are tips for both preparing the person (1), and preparing the environment for a better travel experience (2).

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Posted In: Autism Speaks Website, Parents of Children with Autism, Transitions
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