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

Johnny Depp and My 2012 Goals

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

Someone I met recently commented that they noticed I had not posted a blog here since May 2011.  I can’t believe it’s been that long but  I’ve been busy co-authoring a book (yes, another autism book!).

But I’m back here today – because I woke up this morning from a really weird dream brought on by my daytime worries.  Even if the dream involved Johnny Depp (more on the dream, later),  obviously I am overwhelmed and stressed  – probably like many of you reading this. And I wanted to share something I hope will be helpful.

After I woke up from my dream (and got over the initial excitement of having visited with Johnny Depp while still in my own bed) I decided enough was enough, and that I had to start walking the talk I give autism parents about taking care of themselves.

So I decided to follow the advice of  Chris Brogan. I received an email describing how in the last few years Chris has skipped the tradition of creating New Year’s Resolutions (soon forgotten) and instead he  creates  three words that describe what he wants to focus on for the coming year.  I thought that was a great idea and could help my stress level.

Here are my three words: (none of which are Johnny or Depp):

Produce:  I have great ideas, and I follow through when there are clear-cut deadlines ( for a publisher or a speaking engagement), but my own professional projects (AutismCollege.com)  and  personal ones (exercise,  develop my personal relationships, mentor my autistic son Jeremy in reaching his life goals) don’t get completed in a timely fashion.  So this year, I will produce the projects I have identified as crucial and dear to my heart. Which takes me to my second word…

Flow: In order to have more time to produce, I need to eliminate distractions and clutter in all areas of my life. I’m interested in so many things and I easily get distracted so I am learning to have blinders like a racing horse does and focus on the finish line. Horses can still sense what they may not necessarily see, and I hope I have the same instincts when necessary.

Collaborate: Often I am so busy with outside deadlines that I don’t make the effort to spend time with people who I could effectively partner with to reach mutually beneficial professional and personal goals.  This year, I will focus on collaborating with like-minded people who have similar goals.

Hopefully, what I’ve shared is helpful to you. However, I know most of you just want to hear about my dream involving Johnny Depp (rated PG). So here it is:

I dreamt I was visiting my daughter, Rebecca, who was staying with a musician friend, helping him break into the music business. (Rebecca is a volunteer DJ at the UC Davis radio station).  Johnny Depp was staying there as well (big surprise!). While I’m there Johnny asks Rebecca to help him with the computer to hear an on-line training course that is discussing streams of income and sales funnels and handling your wealth.  I am nervous meeting Johnny, so I try to make conversation  about how Rebecca could use information  like that because she is having such a tough time finding a part time job (reality) while at college, and could use money, and as I continue talking I realize that I sound like I am asking Johnny Depp for money and for a job for Rebecca, which I am not. I’m just having a bad case of  foot in- mouth disease.  I feel really stupid. Only my daughter was more embarrassed than I was.  We climb into a small boat to reach the small stage where Rebecca’s musician friend is playing, and getting out of the boat I splash my husband’s best friend from New Jersey, and his wife and practically drown them. Embarrassment after embarrassment. You know the feeling.

That’s my dream. So this morning I woke up, wrote PRODUCE, FLOW, COLLABORATE on a piece of paper and put it on the dining room table (center of the house) and every time I do something now I ask if it fits in with my goals. I’ll keep you posted on how my three words work out.

What are you focusing on this year?

If you are still reading this far and you know Johnny Depp, tell him I’m not asking for money, but if he needs info on autism, tell him to check out my books and websites, and to call me if he has time for lunch. We could collaborate on something. Hopefully, his good looks won’t be too much of a distraction.

Best wishes  to you and your family for 2012!

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.

 

What IQ Tests Really Tell Us About Children with Autism

By Chantal Sicile-Kira |  March 20th, 2011 |  Print Print  | 

How to better administer psychological assessments to children with autism

This blog was first published on PsychologyToday.com on  March 19, 2011

In the past nonverbal children with autism were considered mentally retarded, and those who had difficulties in communication were considered intellectually slow. Now it has become more widely recognized that autism has nothing to do with intelligence.

Studies show that often children who are performing at grade level or above in school, have IQ scores that show them to have below average or even mentally deficient intelligence levels. IQ scores of children on the autism spectrum may not be accurate reflections of their innate intellectual potential.

For a child to perform to their ability on a standard IQ tests such as the WISC-IV and the Stanford-Binet, they must be able to quickly respond to verbal questions and have well developed motor skills. However, these are areas that are difficult for those with autism. In effect, these IQ tests do not tap the true cognitive ability of many children on the autistic spectrum, but rather tell us more about their communication and motor difficulties.

Children and teens with autism spectrum disorders are impacted by sensory processing challenges, and this as well can effect test results. A student may not be able to respond in a room with bright fluorescent lights or in an environment not conducive to someone with sensory processing issues.

Another reason why it is hard to know how much a person on the spectrum understands is that many with Asperger’s Syndrome may do well in answering test questions, but not necessarily realize how the information relates to them personally. For example, a middle school student may be able to tell you what he heard in health class, but he may not not understand or realize how this information (ie sex education) relates to him personally. For this reason, it is important that parents and educators ensure that students really have processed the information on a personal level.

It is important to remember that just because a person cannot talk does not mean that they are not understanding what is going on around them, what they are hearing in class, or reading in books. Conversely, just because a person sits in a class and can repeat to you what was said, does not mean he has internalized and learned it.

Joshua D Feder, MD, Child and Family Psychiatrist has these suggestions to make about administering psychological assessments :

• Think of all the sensory processing difficulties a child may be experiencing. For one-on-one testing, make sure that the room is quiet, has few visual distractions, and is not too brightly lit.

• Consider the difficulties of transitions for those with autism. Sometimes, clear explanations of what you will be doing together, what comes next, and what comes after, makes a big difference. Frequent breaks may be needed.

• Pay attention to regulation and co-regulation issues. Do testing with the child not to the child. Pay attention to joint attention and engagement, and find the balance between having expectations and trying to build rapport.

• Recognize that one-on-one testing may not show a child’s difficulties with same tasks attempted in the classroom. Children with an ASD may have been taught the ‘right’ answers, but ability to utilize the information may is limited. This is especially true with tests of pragmatic language that ask about what to do in social situations. Careful classroom and recess/lunchtime observations are an essential part of the evaluation.

• For younger or nonverbal children, it is important to observe what they chose to play with, and what they initiate in their actions. This initiation is often the key to finding what motivates them and what we can capitalize upon to help a child co-regulate and connect and move forward in social and cognitive growth

• For more verbal children, we often do not do projective testing with these children, however, the rates of depression and other secondary mental health problems are very high, and projectives often give us a way to understand the child’s experience of the world.

• There may be a lot of scatter in the subtests, so that more refined neuropsychiatric testing may be needed

The reality is, It’s hard to know how much a person on the autism spectrum knows because of the communication, motor, and sensory difficulties they may have, as well as the ability some have to repeat information that has not been internalized. All these things need to be considered when doing psychological assessments.

For more general information on Autism, read 41 Things To Know About Autism, and visit Autism College.

New to Autism? How to Cope

By Chantal Sicile-Kira |  March 16th, 2011 |  Print Print  | 

Recently, I posted a blog on the Autism College website entitled : “My child has just been diagnosed with autism, how do I cope with this?” Parents new to the world of autism usually have a tough time after getting the diagnosis. Parents learning to cope  may find the following tips helpful:

• First, acknowledge your feelings, and allow yourself to feel the emotions that are there. These emotions, may come back time and again, but you will learn to cope.

• Know that the emotions you feel as a parent of a child with autism, has been compared to the stages of grief that  person goes through when mourning the death of a loved one.

• Recognize what you are feeling and try to use those emotions to your benefit. If you are angry, use that energy to find out all you can and advocate for your child (just be careful not to take out your anger on those that are there to help you). If you are feeling isolated, join a support group. If you are feeling powerless, go on the internet and do some research to learn about what options you have for your child, or which advocacy group exists in your state (every state has one) for the developmentally disabled community.

• Keep in mind you are not mourning the death of your child, you are mourning the loss of your expectations. The child you have may not be the child you were expecting, but he still needs you and loves you.

• Reach out and find an autism support group in your area that can help you feel less isolated and can help you with information.

• Find out all you can that can help your child so you can make the right choices. Empower yourself with the knowledge you need to help your child the best way that you can.

• Take care of your self. Just like in an airplane where the flight attendant instructs you in case of an accident, to put the oxygen mask on yourself before you help your child; you come first. If you don’t take care of yourself, you won’t be able to help your child.

At Autism College, we can help you as we help other parents coping with autism. Our Parent Empowerment Course can assist with some information such as how to know what will help your child, and the affects of autism on siblings and grandparents. Our free Library will  grow and we are adding information you can use. Two of my books might be really helpful to you at this time: Autism Spectrum Disorders (an  ASA Book of the Year) and 41 Things to Know About Autism.

 

“Geek Dad: Awesomely Geeky Projects and Activites for Dads and Kids to Share” Free copy available

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

Geek Dad book

I’m not trying to out any Geeky moms or Geeky dads for that matter (notice I haven’t mentioned autism or Asperger’s Syndrome). But I couldn’t resist posting this – my publisher offered to send a free book to  a person of my choosing -  and I thought it would make a great present for winter break – lots of time to try stuff out, right?

I am not considered a Geek, yet I have always loved cool activities to do with my kids. I have always completed activities, they just never looked or turned out the way they were supposed to.  Let’s face it, I’ve always been a geek wannabee.  This book, Geek Dad: Awesomely Geeky Projects and Activities for Dads and Kids to Share by Ken Denmead speaks to the inner geek in all of us. Ken is the editor of GeekDad, a blog on Wired magazine’s Web site.  A professional civil engineer, he lives near San Francisco with his two sons, who are both geeks in training.

Here is a great book and I can send you a free copy. Just write a comment below (or send me a private email if you are too shy) within the next 48 hours, and I will pick one of you to get a copy from the publisher for free.

Meanwhile, here is  an  activity from the book – making coloring pages:

Because there are levels to artistic ability and interest, I’ll show you two different coloring pages you can make. First, the classic dot-to-dot, then coloring sheets. They are all made from images you can find online or scan into your computer from sources at home.

Dot-to-Dot Coloring Page

To start, you have to pick the image you want to turn into the coloring page. For dot-to-dots, it’s going to be a lot easier to select simple images, though if you’re patient and want more detail, you can go for the gusto with more detailed pictures. But dot-to-dots are great for younger kids who are learning about staying within the borders. And they love to be amazed by what they can create by drawing a series of lines between dots.

For this example, we’re going really simple—an image of the sigil of the Rebel Alliance.

(Advisory: If you are reasonably experienced with graphics software and know what a layer is, you can skip down a couple of paragraphs to the one that starts “Select a pen . . .”.)

Assuming you’re a geek, we are going to figure you have some manner of graphics software, probably for touching up pictures from your digital camera. Common (and pretty good) examples of such software include Photoshop Elements (the cheaper, easier-to-use version of the industry standard Photoshop) available on Mac or PC; Pixelmator for the Mac; or GIMP, which works on PC, Mac, or Linux and is FREE FREE FREE. Maybe you haven’t played around with the software that much. If that’s the case, here’s a quick lesson about the first feature you’re going to use.

A layer is a standard concept in image editing software. Conceptually, it’s very simple. Imagine if you took a printed picture and laid a piece of tracing paper over it, and then copied the features by hand on that tracing paper. Well, a layer is just like tracing paper, only it works digitally on the computer, and you can have as many of them as you want.

Step 1: For this project, you open your base image in the editing software of your choice. Then you  add a layer. Most of these pieces of software have a menu actually called “Layer” from which you can “Add a Layer.” Once you’ve done that, there is a perfectly transparent layer of digital tracing paper on top of your image, upon which you can now trace, without affecting the original picture.

Step 2: Select a pen or pencil tool and a fairly small brush size to make your dots with. Draw black dots all around the edges of the image, at relatively even intervals. Straight lines need only one dot at either end. Curves need more so that, when they are connected, they will better re-create the curve.

Step 3: These programs should have a separate control window that shows all the layers in the current project. From this window, you can now “turn off” the layer with the original image on it so that you see only the dots.

Step 4: If you want to go all the way, you can also use the program’s text feature to add numbers next to each dot to give your artist a sequence to follow. Or you can just save this file and print as many of them as your kids want to color, letting them be creative and decide how to connect the dots.

Coloring Book Pages

Obviously, older kids and those with more advanced coloring skills are going to be hankering for something a bit more challenging than connect-the-dots. What’s great is that these graphics programs have filters that let you kick out coloring pages by the ream with only a couple of clicks. They require even less work than the dot-to-dots.

Pick an image. For this example, I used a snapshot I took of my classic Nauga (http://www.nauga.com/promoitems_nauga.html) in my office. I opened the image in Pixelmator and then used “Filter-Stylize-Line Overlay” to automatically find the edges in the image and drop everything else out, making a perfect coloring sheet (there are settings you can tweak to get it “just right”).

In Photoshop Elements, the process is nearly as easy. Open the image, and use “Filter-Stylize-Find Edges.” Then use “Enhance-Convert to Black-and–White” to drop out the colors, and you have much the same effect.

In GIMP, you can try “Colors-Desaturate,” then ”Filters-Edge Detect-Neon” and “Colors-Invert” to get a similar effect. You may need to play with some settings to get an optimal result (and you can save those settings for future uses). GIMP is just as powerful at the other programs in many ways, but it is not quite as user-friendly, so there’s a bit more of a learning curve.

Once you have the technique down, you can whip these out en masse and build your kids (or get your kids to build) their own coloring books, using images they find online (Google Image Search is excellent for this, though make sure you keep an eye out for inappropriate content; or try the Web sites for the cartoon shows they like—Disney or Nickelodeon) or scans from other books or sources.

One other way to do this—with slightly less creativity (and therefore less geek factor) but without the need for special software—is the Coloring Page Maker at the Crayola Crayons Web site: http://play-zone.crayola.com/.