Praise for A Full Life with Autism

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

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

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

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

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

Q & A Webinar: Temple Grandin, Chantal & Jeremy Sicile-Kira : A Full Life with Autism

Temple Grandin and Claire Danes

On Saturday, April 7 th from 8:00am PST to 9:30am PST (11:00am EST to 2:00am EST), Visiting Professor Temple Grandin will answer questions with Chantal Sicile-Kira  moderating. Then, for those who want to stick around,  from 9:45am PST to 11:15am PST (12:45pm EST to 2:15pm EST) Chantal and Jeremy Sicile-Kira will be answering questions in regards to their new book, A Full Life With Autism for which Temple wrote the foreword.

This is an opportunity to ask Temple Grandin questions, and get insight as to what is important for preparing our children for life as successful adults. Chantal and Jeremy will answer any questions you may have about raising a child with autism, and the transition to adulthood.  Register for our newsletter to sign up. (If you are already signed up, you will be receiving instructions shortly).

What questions do you have? Let us know, we’ll answer them!

Temple Grandin, PhD, is a doctor of animal science and professor at Colorado State University, bestselling author, and consultant to the livestock industry on animal behavior. As a person with high-functioning autism, Grandin is also noted for her work in autism advocacy and is the inventor of the squeeze machine designed to calm hypersensitive people.  Grandin is listed in the 2010 Time 100 list of the 100 most influential people in the world, and the subject of the Emmy award winning  HBO documentary, “Temple Grandin.” Temple is the author of many books including, The Way I See It, Developing Talents, and Animals in Translation.

Chantal and Jeremy Sicile-Kira

Jeremy Sicile-Kira was diagnosed severely autistic as well as mentally retarded when he was born in 1989. In 2010, he gave a commencement speech at his high school graduation.   Jeremy  co-authored a book A Full Life with Autism ( Macmillan, March 2012) as a  guide for parents and educators helping those on the autism spectrum transition  into meaningful and independent lives.  Jeremy writes for  autism magazines, and his new website, www.JeremySicileKira.com.  He is one of three national Youth Advocates of the Autistic Global Initiative, a project of the Autism Research Institute. In 2007, Jeremy was highlighted on MTV’s documentary series True Life in the episode, “I Have Autism,” which won a 2007 Voice Award. Follow him on Twitter.

Chantal Sicile-Kira is an award-winning author, columnist, and autism advocate, as well as the founder of of AutismCollege.com which provides practical training  to parents and educators. Her latest book, is  A Full Life With Autism, co-authored with her son, Jeremy.  Their  story has been covered by a wide variety of media, including NPR, PBS, MTV, The Chicago Tribune, Newsweek, and Fox News.

 

What is sensory processing disorder, and how is it related to autism?

Although a sensory processing disorder is not considered a qualifying characteristic for a diagnosis of autism, I have yet to meet a  person on the autism spectrum who does not have a challenge in this area. In interviewing adults and teenagers of different ability levels for my book, Autism Life Skills (Penguin 2008), most of them stated sensory processing challenges as the number one difficulty for them, regardless of where they were on the spectrum.

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.

For those interested in knowing more about auditory processing, Autism College will present a free live Q & A on the topic on Tuesday, July 19, 2011 from 6:00 to 8:00pm  PST with visiting professor Terrie Silverman, MS, and with Chantal Sicile-Kira moderating. You may sign up here.

Sensory processingmaking sense of the world – is what most adults conveyed to me as the most frustrating area they struggled  with as children, and this impacted every aspect of their lives – relationships, communication, self-awareness, safety and so on.  Babies and toddlers learn about the new world around them  by using their senses. At first they put everything in their mouths, they grab your finger with their little fists, then they start using their eyes to look at all those cute baby mobiles hanging over the crib. They learn to recognize the sound of their mother and father’s voices and  other noises.  They start putting meaning to what they are hearing and seeing. The lesser known senses that have to do with balance and body position (vestibular – where are heads and bodies are in relation to the earth’s surface;  and propioceptive -where a certain body part is and how it is moving) are also necessary in order to making meaning of the world around. If  these  are not working properly and are not in synch, they acquire   a distorted view of the world around them and also of themselves.

Most parents and educators are familiar with how auditory and visual processing challenges can effect learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated  and far reaching than that. For example, Brian King, Ph.D, a licensed clinical social worker who has Asperger’s, explained that body and spatial awareness are difficult for him because the part of his brain that determines where his body is in space (propioception) does not communicate with his vision. This means that when he walks he has to look at the ground because otherwise he would lose his sense of balance.

Temple Grandin, Ph.D, (Thinking in Pictures, Animals in Translation) is an animal scientist, and successful livestock handling equipment designer. Temple designed and built a deep touch pressure device ‘squeeze machine’ when she was a teenager as she needed the deep pressure to overcome problems of oversensitivity to touch, and helped her cope with feelings of nervousness.

Donna Williams, Ph.D, bestselling author, artist, musician, had extreme  sensory processing challenges as a child and still has some, but to a lesser degree.  Donna talks about feeling a sensation in her stomach area, but not knowing if her bladder is full, or  if it means her stomach hurts because she is hungry.  Other adults mentioned that they share the same challenge especially when experiencing sensory overload in crowded noisy areas.  They shared that they set their  cell phones to ring every two hours, to  prompt them to use the restroom,  in order to  avoid a potentially embarrassing situation.

Many adults on the spectrum find it difficult to  tolerate social situations. Meeting a new person can be overwhelming –  a different voice, a different smell and a different visual stimulus – meaning that difficulties with social relationships are not  due to just  communication, but are about the total sensory processing experience. This could explain why a student can learn effectively or communicate with a familiar teacher or paraprofessional, but not a new one.

Many difficulties shared to varying degrees include:

  • Many  on the spectrum are mono-channel – meaning that they can only process one of their  senses at a time. This means that if they are listening and processing the information through their auditory sense, they cannot ‘see’  or process what they are looking at,  and vice versa.
  • Being overly sensitive to noise is a common feature. A baby or toddler may not respond to voices and other sounds or cover his ears every time there is a sound. Parents or the doctor may think the child is deaf and request hearing assessment. Other challenges include the inability to filter what is being heard so that if a person is speaking to them, they are unable to focus  just on the voice.  They hear all the background noise (ie, the hum of the refrigerator) at the same level as the voice.
  • Lights may be too bright to the point of being painful, especially fluorescent lights.  This effects the  visual processing of  what  they are looking at in that they may not see the whole picture, but pieces – kind of like some of the portraits painted by Picasso. A child may be looking intently at a book cover, but actually only ‘seeing’ the tiny little flower in the grass and not the whole scene of the farmhouse setting.
  • The feel of anything on the skin may be irritating to the point that it feels like sandpaper to some. Clothing and tags and socks and shoes can be unbearable for some; others may be able only to tolerate loose clothing made of really soft cotton. For some, brushing up against another person in the street or school hallways can be excruciating.
  • A heightened sense of smell can be a problem for some. Smelling something unpleasant and strong with no knowledge of what it is or where it is coming from can be very scary.
  • Overactive taste buds or underactive taste buds can create challenges in getting a child to eat. Add to that  the inability to tolerate certain foods because of the sensitivity to texture in their mouths, and you can imagine why many on the spectrum start out as picky eaters.
  • Many children on the spectrum have  challenges  in coordination and motor planning  tasks in one area or another, such as tying their shoes, or playing sports.
  • When there are too many sensory challenges at once, the person can  experience sensory overload, resulting in a behavioral meltdown. For some this may mean running away to escape for others, for others a tantrum, and still other extreme rocking and self- stimulatory behavior.
  • Many see the detail, but have a hard time seeing the whole. First example, they may see the eyes, nose and mouth like a Picasso painting, but not see the whole face.
  • Some may crave spinning and / or rocking,   the vestibular system that has to do with balance.
  • Some adults report that they do not have awareness of where they are in space and need to look constantly at the ground  in front of them to keep their balance even when walking.
  • Adults have described how many of the problems they face such as social relationships to be in large part due to sensory processing.

 

 

Autism College to co-sponsor free on-line conference April 9th and April 10th

We are excited here at Autism College to be co-sponsoring  “Get Educated About Autism” with momsfightungautism.com in celebration of the Autism College launch and in honor of Autism Awareness Month. Temple Grandin will be one of the keynote speakers. We will have experts on different aspects of autism including communication, inclusion, the use of medications, adolescence,  relationships and other  areas of interest for parents coping with autism and experts. We’ll be sharing more information over the coming weeks.

Today  I’m delighted to tell you about one of our speakers,  Lauren Henry, the founder of With a Brush of Love.   Lauren’s mission is to transform the lives of children diagnosed with autism or other special needs through their surroundings. Lauren is a color expert and designer, and has honed her skills over several years developing techniques for designing environments that improve both the emotional and physical well being of these children and their families. In addition to helping directly, her methods also increase the effectiveness of other therapies and treatments. The scientific principles of how sensory information, particularly color, affects the   psyche have long been recognized.

Lauren’s passion is applying these principles to help children diagnosed with autism and special needs.  Lauren has been  featured on HGTV’s “kidspace” and ABC’s ”Extreme Makeover: Home Edition.”  Her work has also received international attention, she has been invited by the U.S. Military and The Exceptional Family Member Program to Camp Foster in Okinawa to work with their families as well as by the volunteer organization, Hands On Tokyo to oversee the renovation of a Nursery/Orphanage.  Lauren’s  first book, “Unique Kids. Unique Surroundings.” was published in September  2009, and in October of 2010 Lauren was invited to  host the Inaugural International Naturally Autistic People Awards in Vancouver, B.C..

Don’t forget to sign up and invite your friend – this conference is free and you can attend from the comfort of your own home. PJ’s and bunny slippers allowed. For more information, and to sign up, go here:

Free Online Autism Conference 2011 – Sponsored by Autism College and Mom’s Fighting Autism

Temple Grandin and Jeremy Sicile-Kira to Keynote on-line Autism Conference

No-Cost Virtual  conference and new book highlight Autism Awareness month.

In honor of Autism Awareness month, momsfightingautism.com is offering a free virtual conference with 17 different presenters over two days on Saturday, April 10th and Sunday 11th from 8:00 to 5:00 PST.

Temple Grandin, PH.D., subject of the recent HBO movie: Temple Grandin starring Claire Danes, will be the keynote speaker on Saturday April 10 at 8:00 am PST. Dr. Grandin is a designer of livestock handling facilities, Associate Professor of Animal Science at Colorado State University and a bestselling author (Thinking in Pictures). Dr. Gandin will be discussing Teaching Through Specific Examples, and will also discuss the Importance of Sensory Processing Disorder and it’s place in the DSM V which is currently being updated.

Temple Grandin and Chantal Sicile-kira

Acknowledging that autism is a spectrum with different abilities and challenges, the keynote on Sunday April 11 at 8:00 am PST will be given by Jeremy Sicile-Kira who was highlighted in the MTV award-winning True Life episode, “I Have Autism.” Jeremy will present on Learning With Autism: A Personal Viewpoint using power point with voice output. “Jeremy has experienced home schooling, special education and inclusion, and many types of therapies in California, France and the UK. It’s not often we get to hear from someone as impacted as Jeremy about what it is like to be on the receiving end of therapies and treatments,” explained Chantal Sicile-Kira, autism advocate and award-winning author who will be moderating both keynote presentations. Her latest book, 41 Things to Know About Autism, has just been published by Turner Publishing. Continue reading »

HBO: A Mother’s Courage: Talking Back to Autism

International Autism Awareness Day is on Friday, April 2nd and what better way to celebrate than by watching an HBO documentary about a family from Iceland that travels to the United Kingdom, Denmark, and many different states in the US to find ways to help their child with autism?

Producer Margret Dagmar Ericsdottir decided to film her search to find help for her son, Keli, who is ten years old and severely effected by autism. Directed by Fridrik Thor Fridksson (the Oscar nominee Children of Nature), and narrated by Oscar winner Kate Winslet, the film takes us to different places where Margret interviews parents, advocates, scientists and professionals. Temple Grandin, Ph.D., whose life story recently aired on HBO, provides insight, as does Dr. Geraldine Dawson, chief science officer of Autism Speaks. Dr. Simon Baron-Cohen director of the Autism Research Centre at the University of Cambridge, and Dr. David G. Amaral, research director, Mind Institute also provide food for thought.

This documentary does not sugarcoat autism, or celebrate it, or cure it. The movie’s strength lies in that it shows the heart-wrenching reality of what families have to go through to get assessments, diagnosis and advice; it shows the reality of the pain parents feel when their bubbly, verbal child regresses and becomes autistic. We visit with families who have more than one child with autism. A Mother’s Courage does not try to cover all the autism treatments and therapies (i.e., biomedical interventions); it would take a series to do that, not just one film. Instead, the last half part of the film focuses on what Margret has found that works with her child, the Rapid Prompting Method (RPM).

This HBO film is a good resource for promoting community awareness that families can share with their relatives and neighbors. They will gain a better understanding of what families effected by autism go through every day (the motivation behind my writing the recently published book, 41 Things to Know About Autism).

A Mother’s Courage shows us how caring and concerned professionals are; they don’t have all the answers though they wished they did. Joseph E. Morrow, Ph.D., BCBA
and Brenda J. Terzich-Garland, M.A., BCBA founders of Applied Behavior Consultants (ABC ) in Sacramento say that 40 % of the children who attend ABC school at an early age (where they receive intensive therapy based on the principles of applied behavior analysis, ABA) are able to be integrated in their neighborhood school after two years. We are left thinking, but what about the other kids — the kids that make some progress with ABA but never learn to communicate past the “I want” step with the Picture Exchange Communication System (PECS) or never get past three-word sentences?

In the film, we find out that luckily, Portia Iverson and Jonathan Shestack, co-founders of Cure Autism Now, wondered the same thing, and brought Soma Mukhopadhyay to the United States after hearing about how Soma had developed a method to teach her son, Tito.

Margret visits Soma, now the Educational Director of HALO (Helping Autism Through Learning and Outreach) based in Austin, and meets Linda Lange, founder of HALO and other parents and their children. For parents of children with autism who are not familiar with the Rapid Prompting Method, this is the part of the movie that will enlighten them to another possible method for teaching academics and communication. RPM is not a miracle cure, it’s a way to try and reach children using the learning modality that works best for them. The footage of Soma working with Keli gives a good overview of RPM.

My son Jeremy was taught by Soma for a year and a half on a bi-monthly basis when she lived in California. Recently Jeremy wrote an article on How The Rapid Prompting Method Gave Me A Voice. After watching A Mother’s Courage he spelled,

“I am really glad to see people talking about people like me. The fact is, there are many of us. I think there needs to be more understanding. I get frustrated by people not realizing I am smart. But I know I am one of the lucky ones because my mom found a way for me to learn and communicate and the school continued.”

I wish there would have been a better choice made for the final scenes of the movie. Whereas Soma is down to earth and logical, the music took on heavenly tones and rose to a crescendo with angels singing in the background. The symbolic last scene of mother and son walking though a fog with the sun and heavenly music breaking through was heavy-handed.

Much better to have ended on Soma’s words — realistic and inspirational in a practical manner:

“What we have to do now is to educate him so he becomes aware of what he is capable of and lives according to his capability.”

Isn’t that what all parents strive for and want for their children?