Author, Speaker, Autism Expert

Praise for A Full Life with Autism

By Chantal Sicile-Kira |  May 20th, 2012 |  Print Print  | 

Lars Perner, Ph.D., Chair, Panel of People on the Spectrum of Autism Advisors for the Autism Society of America, and Assistant Professor of Clinical Marketing, USC, had this to say about A Full Life with Autism:

Each individual on the spectrum is unique and will need personally tailored supports.  At the same time, because of autism’s complexities and seemingly contradictory characteristics, it is often difficult to get a view of the “big picture” of a life on the spectrum and the challenges that it presents.  In their very comprehensive—yet highly readable—book, Chantal and Jeremy succeed in addressing both of these concerns.

Although ample resources for addressing the diverse needs of individuals on the spectrum are presented, the case Jeremy illustrates the types of challenges, surprises, and opportunities  that may come up as an individual develops.  Chantal talks about initially not expecting Jeremy even to finish high school and subsequently being able to help him not just graduate but go on to college.  An especially intriguing issue discussed involved helping Jeremy understand that a girlfriend is not something that can just be “hired” in the way that one can secure aides and support workers—an issue that only the most clairvoyant parent might have anticipated. Although optimistic and filled with humor, the book clearly acknowledges challenges that this family faced and those that will likely be faced by others—including obstacles to finding long term housing opportunities and healing from traumatic events.

Although much of the writing is done by Chantal, Jeremy is a consistent, creative, and innovative contributor, talking candidly about his own experiences that have led to the lists of tips that he presents.  I especially love his observation that rights of disabled individuals “are founded on the Fourteenth Amendment of the Constitution.”  The book’s extensive list of issues that may come up will unquestionable leave many families much better prepared for handling the challenges that will come up over the years.

More Rave Reviews: A Full Life with Autism

By Chantal Sicile-Kira |  May 13th, 2012 |  Print Print  | 

Elaine Hall,  creator of the Miracle Project, author of Now I See the Moon, co-author of Seven Keys to Unlock Autism and  subject of the movie “AUTISM: The Musical” has this to say about A Full Life with Autism:

A Full Life with Autism provides parents of teens on the autistic spectrum understanding, guidance, hope, and resources to navigate the uncharted territory of adult living.  Thank you, Chantal and Jeremy Sicile-Kira for responding to questions that so many of us parents are aching to know.  Thank you for brilliantly weaving  the parent perspective with Jeremy’s internal dialogue.  Thank you, Jeremy  for bravely articulating what is really going on inside the mind/body of someone with autism. I will use your words as starting points in my discussions with my own son, Neal.

A Full Life with Autism reminds us that the true “experts” on autism are our children; and that we, the adults, must listen to their wants and desires, then find the resources to help them realize their dreams.  I will be recommending this book to everyone I know.

 

 

A Full Life with Autism: Comments by Dr. Cathy Pratt

By Chantal Sicile-Kira |  May 9th, 2012 |  Print Print  | 

Unfortunately, many adults on the autism experience high rates of unemployment or underemployment.  Some of our most gifted live in poverty and have few options in life.   Chantal and Jeremy have creatively worked to create an engaged life for Jeremy and his family.   This book provides very practical ideas for transition planning and provides a template that others can use as they support adults moving into adulthood.   I highly recommend this for any family or individual as they  prepare for transition planning.

 

Dr. Cathy Pratt, BCBA-D, Director- Indiana Resource Center for Autism, Indiana Institute on Disability and Community; Former President of the Autism Society of America

Review of A Full Life with Autism by Dr. Joshua Feder

By Chantal Sicile-Kira |  May 5th, 2012 |  Print Print  | 

This marvelous book lays out in plain and readable language the challenges of transition to adulthood for persons with autism and offers practical advice from the inside perspective of a mom and her adult son teamed as partners in the enterprise of helping him achieve a meaningful life.

It is inspirational, almost a parable, in its effect of drawing you into their story and teaching important principles, and yet it is also comprehensive in the executive task of helping us think about our values, goals and objectives in our mission to give a real life to our adults with autism and related challenges.

Perhaps one of the most important messages: behavior is a form of communication, and it is incumbent on the people around the person with autism to work to understand what that behavior is communicating without merely consigning it to a category of something to be gotten rid of.  Jeremy states: “I have oftentimes been the victim of ignorance.”  We must not be party to what Jeremy has suffered.  We need to be humble and helpful, persistently curious and ever respectful.  We cannot presume to know what we do not.  We must take the time to get to know the hopes and dreams of people whom we do not yet understand.

I was also intrigued by the undercurrent discussion of relationships that runs through the book in sections on friendship, sex, love, and support staff, as they all revolve around the quality and character of relationships.  How can we support, for the person and people around him, the development of more meaningful communication, relating, and problem-solving.  To the many thoughts already included I would add that it is often very helpful to support the person and caregivers by carving out regular reflective time to think through how things are going  - what is working, what isn’t, and what to do to try next to understand the situation better and try something different.

In all, this is a compelling, thoughtful, comprehensive and inspiring bible that belongs on the shelf of everyone who strives to help people with autism build a life in a complex world.

Joshua Feder MD, Director of Research of the Interdisciplinary Council on Developmental and Learning Disorders

Kirkus Book Review: A Full Life with Autism

By Chantal Sicile-Kira |  April 17th, 2012 |  Print Print  | 

A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence is my latest book co-authored with my son Jeremy (foreword by Temple Grandin) that was published on March 27 by Macmillan. The book has received many excellent reviews. Here is one by Kirkus Book Reviews, whose reviewers  are known as the world’s toughest book critics:

For readers already knowledgeable about autism and Asperger’s syndrome, a hands-on approach to transitioning into adulthood.

Sicile-Kira (41 Things to Know about Autism, 2010, etc.) and her autistic son, Jeremy, join forces in this guidebook to help parents and their autistic offspring move beyond childhood and evolve into an adult life. Although special-education services exist for children with autism spectrum disorder, once a child reaches adulthood the lack of adult services becomes apparent. As the mother of a severely autistic child, the author understands the needs of caregivers and children on the spectrum alike to shift to a quality of life that provides independence for all parties. “To create the future that you and your adult child envision will take perseverance and work,” she writes. “But good quality of life and peace of mind is worth it.” Based on her research, Sicile-Kira has compiled the majority of available resources into an accessible handbook that provides information on topics such as romantic and sexual relationships, finding appropriate living arrangements for true self-sufficiency and acquiring and keeping a job. The author breaks each large, seemingly overwhelming undertaking into small, doable tasks. Bulleted lists sum up each chapter and help readers remain focused and on-track. Equally as effective are the short essays and “top ten tips for parents,” written by Jeremy. His voice gives a personal, honest perspective on the daily life, expectations and hopes of someone with special needs who wants to become as integrated into adult society as possible. Additional resources include reading material and websites for care providers and people on the spectrum.

A proactive method for raising an adult child with special needs.

 -Kirkus  Book Review

Jeremy’s Graduation Speech

By Chantal Sicile-Kira |  May 13th, 2011 |  Print Print  | 

Some people have written to me to say that Jeremy’s graduation speech is difficult for them to understand on the U-Tube video, so here is a transcript:

I have spent seven years at Torrey Pines High School.

Three years ago, I walked the graduation ceremony. Today I walk the same path, in the same cap and gown, but I have now earned my academic diploma.

My education at Torrey Pines has been my greatest achievement. I was once diagnosed autistic and severely retarded. When I arrived at Torrey Pines, I could not communicate and I spent my days in a class for the severely handicapped. Now I am going to college. I am writing a book about my life. I have become an inspiration nationally to many parents and educators of children with autism.

My story is like Helen Keller’s, the deaf, mute, and blind girl. Helen Keller had a teacher, Anne Sullivan, who taught her and took her out of isolation. My first great teacher was my mom, then the high school teachers.

My favorite story about Torrey Pines is when my teacher, Allan Gustafson, realized for the very first time that I understood everything. He was really trying to learn how to communicate with me. He said “Jeremy, I know you are in there somewhere. I can’t know what you are capable of unless you tell me.” I looked at him and saw tears in his eyes. I really wanted to make him happy. My nice teacher continued to try and reach me. He said, “Give me a sign.” I looked at him and spelled with him for the first time. Great teacher Allan was so happy.

The teachers here gave me good advice on more than just the subjects they taught. They understood that I might be different on the outside, but that on the inside I was just like any other student. Other important people include the ladies in the administration building who always said “hi” to me, and told me they were happy to see me. My speech teacher, Dr. Palmer, was nice, even if she tried to convince me to become a Republican. An exciting memory from this campus is when an MTV camera crew followed me around campus for the show, True Life: “I Have Autism”.

I would like to thank Bruce Cochrane, Director of Pupil Services, for the chance he took and the faith he had in me. I would like to thank the administrators, the school staff, the educators, (including Maureen and Janine), for allowing my voice to be heard. Without you, my life would still be imprisoned in darkness.

Nicely I wish I had made more friends from my years here. Being autistic, that is the hardest part. It is important to include all students in general education classes so they can be with their peers.

When Helen Keller grew up, she graduated from college, became an author, and an advocate for people with disabilities. I hope to do the same.

My real message to you today is:

Teachers, never underestimate your students no matter how disabled they may appear or what difficulties they face.

Parents, believe in your children and encourage them to fulfill their dreams.

Students, give yourself the power to hear the voice inside telling you that you can create the life you dream of. Believe in yourself, and never allow anyone to discourage you.

 

1001 Tips for Parents of Autistic Boys and Autistic Girls.

By Chantal Sicile-Kira |  November 24th, 2010 |  Print Print  | 

Those who have heard me speak at conferences or who read my books know that I love information that is usable. When it comes to books on autism, practical rules. Two books have just been published that are full of useful tidbits that parents will appreciate, and these are 1001 Tips for Parents of Autistic Girls by Tony Lyons, and 1001 Tips for Parents of Autistic Boys by Ken Siri.

Like any book on autism, some of the tips in these books will apply to your child and your situation, and others may not. But with 1001 tips there are many to choose from. The book for parents of autistic girls is a great resource, as lately there have been a few books published on Aspie girls but nothing really for those on the other parts of the spectrum. When it comes to puberty and the teen years, parents of girls need information about how to handle the changes puberty brings (I think you get the picture).

On Thanksgiving Eve, I am grateful for the autism community of parents, professionals and support staff who have shared their wisdom as we search for enlightenment. In honor of the release of these two 1001 Tips  for Parents, I’m sharing my favorite tips for making it through the holiday season from my recent Psychology Today blog. Parents, you may find these useful in making it through the upcoming month and a half. I know how difficult it can be.

(If these tips don’t work, remember the three V’s – valium, vodka, vacation, but not if you are driving and certainly not for your child. – Disclaimer: The information appearing between these parenthesis was written to incite laughter, and is not to be taken as medical advice, please check with your doctor before self-medicating).

Why the holidays are so difficult for families with autism and what can help

Often parents in the autism community will joke that we become more religious during the holiday season that begins with Thanksgiving: we pray our children will behave while we are visiting relatives, we pray they will show interest in their gifts (and not just the ribbon), we pray they will sit at the dinner table, we pray they won’t hit the relative who tries to kiss them, and above all – we pray that we will have the strength to politely ignore the judgments passed upon us and our ‘misbehaving’ children.

Here are some areas of difficulties for children on the spectrum and their families during the holiday season, from my book, 41 Things to Know About Autism, published earlier this year :

The stores are full of noise, lights, lots of people, and winter holiday music that can create major overwhelm for those with sensory processing challenges.
• Social requirements such as relatives wanting a hug or a kiss that can fell painful.
• Holiday dinners where they are expected to try foods or sit for long periods of time with so many people and so much commotion.
• Many children are mesmerized by the colors and textures of the ribbon and wrapping paper and do not open the present but stim (get engrossed and play) with the wrapping
• The child does not understand personal space or have safety notions and so may run around the house or try to play with something breakable.
• Relatives may think that the child is misbehaving, and may try to discipline the child, not realizing that the child really can’t help it, and that discipline is not helpful when it comes to sensory overload and high anxiety.
• Parents have a difficult time because they know there are certain expectations of behavior that relatives and friends have and that the child cannot fulfill.

What can you do? With some preparation, planning and information sharing, the holidays can be less stressful and more enjoyable. Here are some tips on how to prepare your friends and relatives whom you will be visiting:

• Explain the difficulties your child has with the holiday dinner environment, decorations, noise etc.
• Let them know he is not just misbehaving, and that he is learning little by little to handle these situations
• Explain about dietary challenges so they don’t expect him to eat what everyone else is eating.
• Ask if there is a quiet room (child -proof in terms of décor) where your child can retreat for some quiet time to escape the commotion and noise.
• Send them a short but sweet letter or email ahead of time explaining why your child acts the way he does and the difficulties of the holidays form his point of view. They will have a better understanding of why she won’t wear a dress or he won’t wear a necktie, and why as more and more people start arriving, he tries to escape the room.

To prepare your child:

• Make a social stories book about what will be happening and the behavioral expectations. If possible include photos of who he will be seeing, the house  decorated during last year’s holiday season. If he is going to church, do the same for that environment.
• Play some of the music he may be hearing at this holiday season.
• Practice unwrapping presents – wrap a bunch of boxes up with favorite treats inside and have him open them to get to them.
• Practice a handshake if he can tolerate that.
• Write rules together – ie how long he thinks he can tolerate sitting at table, and the expected behavior.

On the day of the holiday celebration:

• Remind your child of the agreed upon rules
• Pack some little toys he can play with in his lap at the dinner table
• Bring some foods he can eat, especially if he is on a specific diet.
• Arrive early so that the noise level builds up slowly for him.
• Do not let the expectations of others ruin your day. Do what you need to do to make it as comfortable as possible for you and your child.

Holidays can be difficult because of all the expectations, as well as the sensory challenges, but with planning and information sharing the holidays can be more enjoyable for all.

Self-Advocacy is a Needed Life Skill for Students on the Autism Spectrum Headed to College

By Chantal Sicile-Kira |  October 17th, 2010 |  Print Print  | 

Psychology Today blog, October 17, 2010 – Yesterday, as I was presenting on Autism Life Skills in Grand Junction, Colorado, I discussed the need for teaching self- advocacy to high school students with autism, including Asperger’s Syndrome..  At the end, a parent approached me and said she was shocked to learn that once their child on the spectrum graduates from high school, reaches the ripe old age of 18 and is planning to attend college, a parent is no longer the person responsible education-wise: the student is. This means that when they are  18 years of age and are college students, the college contacts the student, not the parent. If the student will be requiring any kind of accommodations, he or she – not the parent – will need to ask for them  and discuss the need with Disabled Student Services.

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

Jeremy Sicile-Kira

Back to School 101 : How parents of ASD teens can get prepared for the school year

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

Here’s a column I wrote for the Examiner.com and still useful for this new school year!

Aug 27   Holy Moly – can you believe the summer break is just about over??  In last week’s column, Back to School : How to prepare your teen, tips for preparing your teen on the spectrum for the new school year were discussed. In this column, some ideas on  how parents can best be prepared for the new school year  are covered.  These tips are from both the “Back to School Guide” put together by A2Z Educational Advocates based in Pacific Palisades, and from my book “Adolescents on the Autism Spectrum.”

  • Perhaps it seems obvious, but contact your school if you have not been informed of your teen’s  schedule or the name of the teacher(s), classroom(s), bell schedule, district and master schedule for the new school year. Sometimes, these are not known till the last minute and the school administrators are dealing with many issues – budget cuts, union and staffing concerns, etc. But, by asking politely and reminding them that you need to ‘prime’ your teen about where he needs to be, who he will see, what the schedule is for the first day of school, you can reasonably hope to get an answer.
  • Review your teen’s  IEP document to refresh your memory about what the goals are. If you have any questions as to how the IEP will be implemented, get a list going to communicate your questions to the person responsible.
  • If your teen is to receive aide support as stipulated by the IEP, it would be a good idea to contact the administrator to insure that an aide has been assigned. If specific training has been specified in the IEP,   ask  if the aide has been trained or when the training will take place.
  • If your teen receives related services at school such as occupational therapy and/ or speech therapy, make sure you are aware of when and where he is receiving the services and that it is in line with the IEP. If the services are provided outside of the school day, contact the non-public agency providing the service to ensure an appropriate time is scheduled for your teen.
  • This is a good time to ensure any records regarding your son and his educational needs are in order. Filing everything (IEPs, assessments, correspondence) in one 3-ring binder in chronological order is most helpful as it provides easy access when you need to find a particular document.
  • If your child is fully included, or has a new special education or resource teacher, it is helpful to provide the teacher with a one-page positive overview about your teen, and ensure that the teacher is aware of the IEP goals and objectives. Your teen may wish to write his own note to the teacher.
  • Self –advocacy is a skill that should be developed in every teenager. When situations come up in regards to information that needs to be shared with the teacher and classmates, or situations arise that need to be resolved, think of ways   your teen take part in that process, and bit by bit, to take more ownership of it, depending upon his/her ability level.

In my next column, some strategies to help general education teachers who have students on the spectrum included in their class will be shared.

Back to School : how to prepare your teen for a new school year

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

It’s that time of the year again – school is starting up again soon, along with our hopes and expectations for a positive learning experience for our teens. Some maybe returning to the same school; others may be moving from middle school up to high school, or changing from high school to a transition program; others may only be changing classrooms or teachers. Whatever the situation, any type of transition or change can be stressful for a teen on the spectrum. The start of a new school year can also be stressful for parents and teachers.

I first posted this article on the Examiner.com last August (2009), but it is still useful information so I am reposting now.

On August 15th,2009, I presented at the annual “Back to School”  Autism / Asperger conference in Pasadena and had the opportunity to refresh my memory on some good readiness skills for the start of the new school year. A2Z Educational Advocates based in Pacific Palisades had some good tips to share in a “Back to School Guide” they were handing out. Following are some tips from both the “Back to School Guide” and from my book Adolescents on the Autism Spectrum to help the transition go smoothly for your teen or student:

  • If  your student is moving to a new school or classroom, take photos or videos of the new environment, including the areas he/she will be walking through. If possible, take the teen to the new location before school starts and practice walking around the empty campus. Have him /her notice some visual landmarks he/she  will be able to see when the campus is full of students, and explain to him/her how to use these as points of references when walking from one place to another.
  • Prime your teen by talking to him/her  about the upcoming school year, the teacher and expectations, as well as any fears or concerns your teen has. Creating a photo album together or writing social stories can be very helpful. Even if your teen does not have good communication skills or is non-verbal, he/she can  learn to  understand and make the connection, so it is worth the effort to take the extra time to do this. Going over the appropriate behaviors and social interaction for the school environment can also be helpful. Many students find having a set of ‘rules’  for school behavior helpful. Focus on the positive!
  • Help your teen get organized to prepare for the school year.
  1. Use color-coded folders to organize the work for the different classes.
  2. Get a planner for your teen. Many schools have a homework planner, and your teen can use this to keep track of homework assignments. Show him/her  how to write his assignments in the planner and reinforce him/her  for doing so through out the school year.
  3. Designate a spot in your teen’s backpack for forms, notes and so on that come home from school, and make sure your teen and the school staff know where that is.
  4. If your teen is fully included in a school that follows block scheduling such as in some North San Diego County high schools (one day is periods 1,3,5; the next day is periods 2,4,6) you may wish to consider having two separate backpacks for the two different block days days.
  5. If your teen needs assistance to organize himself and stay organized (as mentioned above), his / her IEP may need to include accommodations, strategies, and goals related to learning these skills. Being able to get and stay organized is an important life skill everyone needs to learn

In my next column, tips on how to make the transition back to school easier for parents and teachers will be discussed.