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.
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.
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
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
By Chantal Sicile-Kira |
October 16th, 2010 |
About a year ago, this book arrived on my doorstep and although I was intrigued by the title, I wondered why I was being sent a book about economy by my publisher. I was busy writing 41 Things to Know About Autismso I put it aside. Today, heading out the door to catch a plane for a speaking engagement in Grand Junction, Colorado, I grabbed it to read on the plane. I thought it would be nice to read something different from my usual repast of autism books.
Create Your Own Economy: The Path to Prosperity in a Disordered World, is a misleading title because this book doesn’t seem to have much to do with economy but does talk a lot about how as individuals we organize information these days and how this relates to autism in the writer’s mind. Tyler Crowen, a behavioral economist, writes about how people with autism organize and manipulate information, how our consumption of information is changing, and how the way we organize these information bites are reminiscent of autistic thinking. A very interesting read, Tyler has many positive things to say about autism and how it should be discussed not as a disability, but rather as an ability and an asset to society. Although I agree in principle, I only have to think about how much help my son needs at 21 due to his autism and how much it is costing the state and the family for him to live due to his need for 24 hour supports. That’s the reality of his economy – and mine – at the moment.
That being said, I agree with much of what Crowen has to say, and it would be nice if society had more his viewpoint when looking at some of the ‘quirkiness’ or ‘obsessions’ of those on the spectrum. Crowen became interested in autism when a reader of his blog wrote telling him he sounded like he had a lot of Aspie or autistic traits. So Crowen began to read about autism. He states at the beginning of the book, “As I read more, I began to see that the autistic mind-set about engaging with information is a powerful way to understand the whole world around us. Especially now.”
Read it for a fresh look at autism, and how the way we use and analyze information now is more like our loved ones on the spectrum.
The program is “The State of Things” on North Carolina Public Radio station WUNC. Longtime NPR correspondent Frank Stasio hosts the program, which this time focused on autism.
The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:
“… Jeremy is almost 22 now and he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.
I was on a panel that will include Autism Society of North Carolina spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter. TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.
By Chantal Sicile-Kira |
March 20th, 2010 |
Tips for general education teachers
Back in August, I wrote this post for my Autism and Adolescence column in the Examiner.com, and I’m re-posting it here because I’ve received a few emails with questions recently from general education teachers. Maybe there are others who could use these little nuggets of information.
Often junior high and high school teachers have teenagers with Asperger’s Syndrome included in their classrooms, and are not given much in the way of useful information. This column will provide a few practical tips that may be helpful to educators with no practical knowledge about students on the spectrum. For more information, check out this webpage.
Asperger’s or High Functioning Autism (HFA) is often described as an ‘invisible disability’ because students on the spectrum do not look different frorm most students. Most teachers expect them to act like everyone else, but often the student gets in trouble for behaving in a way that seems rude, disruptive or non-compliant. A diagnosis of Asperger’s or HFA is based on challenges in the areas of communication, and social relationships, as well as what appears to be an obsession or passion for a particular area of interest.
Here are some tips that may help the school year go a little easier for you and your student on the spectrum:
It’s a good idea to have a hard copy of the homework assignment to hand to your students on the spectrum, because most of them are mono-channel. This means they cannot look at the assignment on the board, write it down and still be able to focus on what you are saying. By the time they have finished copying down the assignment, they have missed your intro to that day’s lesson. This mono-channel aspect makes it hard for a student to multi-task, and by only requiring him/her to do one thing at a time, it will be much easier for the student to stay focused. Read More »
By Chantal Sicile-Kira |
March 15th, 2010 |
Auditory Integration Training / Photo Rebecca Sicile-Kira
In my last Psychology Today post I discussed sensory processing disorder, and received comments and questions from readers. I had mentioned an article in The Boston Globe that mentioned that a group of professionals and parents was lobbying to get sensory processing disorder included in the next Diagnostic and Statistical Manual of Mental Disorders. Reader Dr. Joshua Feder wrote in to give us the link where people can provide input: “Remember, the public commenting on the upcoming DSM-V is still in process and the addition of SPDs is in flux, so if you think it is important you can make your voice heard. Go to http://www.spdfoundation.net/dsmv.html to learn more!”
Sensory processing challenges is a hot topic at autism conferences and this provides me the opportunity of asking adults on the autism spectrum what we could do to make the sensory aspects of life easier for them, as well as children who may be unable to discuss what they are sensing. I have written up the answers in my book, 41 Things To Know About Autism, and I am mentioning some of them here. Read More »
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.
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.