A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence
256
A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence
256eBook
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Overview
A guide for helping our children lead meaningful and independent lives as they reach adulthood
In the next five years, hundreds of thousands of children with autism spectrum disorder will reach adulthood. And while diagnosis and treatment for children has improved in recent years, parents want to know: What happens to my child when I am no longer able to care for or assist him? Autism expert Chantal Sicile-Kira and her son Jeremy offer real solutions to a host of difficult questions, including how young adults of different abilities and their parents can:
*navigate this new economy where adult service resources are scarce
*cope with the difficulties of living apart from the nuclear family
*find, and keep a job that provides meaning, stability and an income
*create and sustain fulfilling relationships
Product Details
| ISBN-13: | 9780230393615 |
|---|---|
| Publisher: | St. Martin's Publishing Group |
| Publication date: | 03/27/2012 |
| Sold by: | Macmillan |
| Format: | eBook |
| Pages: | 256 |
| File size: | 282 KB |
About the Author
Chantal Sicile-Kira is an award-winning author, columnist, and speaker on autism. The author of four other books, Sicile-Kira writes for The Huffington Post andPsychologyToday.com. Her story has been covered by a wide variety of media, including NPR, PBS, MTV, the Chicago Tribune, Newsweek, and Fox News.
Jeremy Sicile-Kira was diagnosed as severely autistic when he was born in 1989. In 2010, he gave a commencement speech at his high school graduation. Jeremy writes for autism magazines, AutismCollege.com, and was featured in Newsweek. In 2007, Jeremy was on MTV's True Life in the episode, "I Have Autism," which won a 2007 Voice Award.Temple Grandin is the bestselling author of Animals in Translation, among others.
Chantal Sicile-Kira is an award-winning author, columnist, and speaker on autism. The author of books including A Full Life with Autism, Sicile-Kira writes for The Huffington Post and PsychologyToday.com. Her story has been covered by a wide variety of media, including NPR, PBS, MTV, the Chicago Tribune, Newsweek, and Fox News.
Jeremy Sicile-Kira was diagnosed as severely autistic when he was born in 1989. In 2010, he gave a commencement speech at his high school graduation. Jeremy writes for autism magazines, AutismCollege.com, and was featured in Newsweek. In 2007, Jeremy was on MTV’s True Life in the episode, "I Have Autism," which won a 2007 Voice Award.Temple Grandin is the bestselling author of Animals in Translation, among others.
Temple Grandin, Ph.D., is a prominent author and speaker on both autism and animal behavior. She is a professor of Animal Science at Colorado State University and has a successful career consulting on both livestock handling equipment design and animal welfare. In 2016, Dr. Grandin was inducted into the American Academy of Arts and Sciences.
Read an Excerpt
A Full Life With Autism
From Learning to Forming Relationships to Achieving Independence
By Chantal Sicile-Kira, Jeremy Sicile-Kira
Palgrave Macmillan
Copyright © 2012 Chantal Sicile-Kira and Jeremy Sicile-KiraAll rights reserved.
ISBN: 978-0-230-39361-5
CHAPTER 1
TRANSITIONING OUR YOUNG ADULT, TRANSITIONING OURSELVES
Rome was not built in a day. I need time to build the Eiffel Tower that my life will become.
—Jeremy
Jeremy's educational experience has run the gamut from typical nursery schools in Europe, to behavior-based home programs, to special education and general education classrooms in the United States. Over the years he learned to say simple three-word sentences—such as "I want ..."—but could not verbalize more than three or four syllables at a time due to motor challenges. When Jeremy entered his local high school, at age fourteen, he was placed in a classroom for the severely handicapped. He began to learn to spell and type at home, and he eventually attended general education classes. Jeremy had a paraprofessional aide and received both occupational therapy services and speech therapy. When he was twenty, he passed the CAH- SEE, the California High School Exit Exam—a requirement in this state at the time—along with passing a certain number of units, and he graduated with a full academic diploma in June 2010 at the age of twenty-one.
The high school district continued to provide services until the semester he turned twenty-two, in January 2011, as it was decided that he was not ready to transition out of school services at that time. While Jeremy was in his last semester of high school, he took his first community college class, and the school district was an enormous support for this transition. Well aware of Jeremy's needs as well as his goals in life, we had started discussions years earlier with his case manager at our local Regional Center about adult services for Jeremy. Regional Centers are contracted with the Department of Developmental Services in California to help plan, access, coordinate, and monitor services and supports to individuals with developmental disabilities. Adult services include (in theory) day programs, work services programs, some education services, and assistance with different types of housing options.
For years I was told, "Don't worry. We understand Jeremy's needs. We'll figure it out." When the first wave of budget cuts became reality a few years back, the case manager and I started to panic, but then I was told there were some creative options that were working for others, and perhaps they would work for Jeremy. The Regional Center case manager had been present at most of his IEP meetings over the years, so they were aware of Jeremy's need for a one-to-one support person and of his goals of getting a four-year degree in communications, becoming a writer, and becoming an advocate for those with autism. Jeremy's plan is to eventually earn enough money to pay for the cost of the support person he needs in order to work. After graduating from high school while attending community college part-time, he became a staff writer on the community college newspaper, had some opportunities to earn money through writing, and was invited to present at autism conferences— which is to say, his goals were not unrealistic.
Six months before his twenty-second birthday, there was still no concrete plan proposed by our local Regional Center, and I was told that it was too early to plan. I did my homework and found the service provider that had the same philosophy and approach to people as my family's.
The ongoing "negotiations" with the Regional Center to provide the support person Jeremy needs for part of each weekday to continue working on his goals of learning at college while using his skills to earn money created much stress for our family. Although I had organized a backup plan so that nothing would change in Jeremy's day-to-day schedule, Jeremy became very agitated and developed symptoms of posttraumatic stress disorder. He could not leave the house, and I could not leave him alone with support staff. He missed the start of the new semester, eventually becoming able to attend after receiving treatment from a trauma therapist. Meanwhile, I developed some health issues, and I realized that for us to stay healthy, we needed to develop a game plan that would work for our family. Jeremy's goals to be fully included in society and to earn a living rested on principles that were ethical and sound, and I was not willing to let the systems in place and their budgeting issues in this economy dictate Jeremy's quality of life. There is freedom from stress in deciding that come what may, you will stick to your principles and find a way to reach your goals.
JEREMY:
Unlike for neurotypical people, when transition occurs for people with autism like me, the process is very difficult. When I left the high school at age twenty-two, my mom and I had a plan. My mom had organized this plan for a long time, but the Regional Center did not back up what they had been agreeing to in theory. They did not have another acceptable plan ready despite my mom and school team working with them for a long time. My mom was planning ahead, but the systems in the great state of California were not cooperating. Being very nervous, I felt like I needed lots of medication, but I knew medication was not a good solution. I was very upset because I felt my mom was doing everything.
Basically the people in power refused to give an answer to our request for a long time. They said they needed to plan for all young adults with autism leaving school before replying, even though we were supposed to have an Individual Program Plan for me. This created a lot of stress for me and my family.
The disturbing thing is, if I and other people with developmental disabilities did not exist, the people in power would have no job. People make money because we exist, but they have a hard time responding to our needs, citing the lack of money. The systems in place are not cost-effective if they have money for salaries for the persons in power, but not enough money for the supports that people need to live and be productive. I think the systems are like big machines and you get what you need only if you stand up like David did to Goliath. David won in the end. The lesson is be brave and stick to your principles.
THE PARENTS
Parents and educators often commiserate about how challenging transitions are for our loved ones on the autism spectrum. Rarely do we acknowledge that they are difficult for us as well.
The transition into adulthood is probably the hardest. For the young adult, there is the loss of structure that school provided for six hours a day as well as the loss of contact with people he saw every day for years. For the parent there is the loss of regular access to and support from educators and therapists. For those whose children require continual supervision, there is the loss of six hours a day when a parent had coverage for their child.
As parents, we are facing transitions in other areas of our lives. Some of us have to care for our elderly parents. For those whose children are still living at home and require 24/7 supports, it can feel like we spend our life sandwiched between our parents and our children. Some of us are going through our own midlife crisis. Yet even though we need some space to figure things out about ourselves, we find our children need us more than ever.
It is important to note that the stress we feel as parents is not generated by our adult child with autism, but rather from the failings of the systems in place that are supposedly there to help us. There are caring people in the system, yet often the lack of options and foresight and inability to plan ahead or provide options for our loved ones are accepted as normal by the systems in place. This is what created the most stress in our family.
You Are Not Alone
The parent-child relationship is one of the most enduring social ties that human beings have. Over time, as the neurotypical child matures, the relationship shifts and progresses, and eventually the parent stops being responsible for them and their actions. Not so for parents of children on the autism spectrum.
Research shows that mothers of children with an autism spectrum disorder (ASD) continue to worry throughout their child's life span. A particular time of stress is the transition from public education services. Mothers of teens and adults on the spectrum experience chronic stress, struggling with frequent fatigue and work interruptions. Researchers have found that a hormone associated with stress was extremely low in these women, consistent with people experiencing chronic stress, such as soldiers in combat. Ongoing stresses include managing problematic behaviors and dealing with the losses of expectations associated with having a child whose development is not neurotypical.
Having an adult child with autism creates more financial stress. Families tend to have nearly one-third less income than those with typically developing children. There is likely to be one breadwinner because mothers of children with autism are less likely to work, and when they are employed, these moms tend to earn less than others.
Many parents worry that their adult children's basic needs for employment, housing, transportation, social interactions, recreation, health care, and financial security will not be met. And rightly so. According to an Easter Seals Survey carried out in 2010:
• Nearly 7 in 10 adults with disabilities (69 percent) lived with their parents (or their guardian); only 17 percent lived independently compared to more than half of adult children without disabilities (51 percent).
• Just 11 percent of parents of children with a disability stated their child was employed full-time.
• Only 6 in 10 rated their child's quality of life as excellent or good (61 percent), compared to 8 in 10 parents of adults without a disability (82 percent).
• Parents assessed their child's ability to manage their own finances at 34 percent, compared to 82 percent of parents of adults without disabilities.
• Parents rated their child's having the life skills necessary to live independently at 30 percent, versus 83 percent of parents of adults without disabilities.
All this is to say that our fears are well grounded, and we have company.
There are some positives associated with having our grown children still living with us. Studies show that mothers are agents of positive change in their child's life. The family helps the adult child develop and improve his behavior while the family also benefits from and enjoys the company of the adult child. The effect of having a sibling with autism has a wide range of impacts, both positive and negative, that continue into adulthood.
THE YOUNG ADULT
Many parents are apprehensive about the teen and adult years, and they fear that their adult child may "get worse" as they get older. However, the reality is that maladaptive behaviors, such as temper tantrums and self-injury associated with autism, generally subside with age. Research shows some improvement for many in verbal communication, and social reciprocity such as social smiling and eye gazing tend to improve. Other improvements include social and daily living skills, repetitive behaviors, and emotional responsiveness, such as offering comfort to a distressed parent. There is hope as well that the current young teens who have benefited from earlier intervention than the current adults with autism will show even more improvements.
However, research also reports that there is a high risk of depression in young adults with Asperger's Syndrome. In a Swedish study published in September 2011, 70 percent had experienced at least one episode of major depression, half of them had experienced recurring depression, and 56 percent met criteria for at least one anxiety disorder.
If the transition out of high school into adulthood is difficult for the parent, imagine how difficult it is for the young adult. For years he has been going to school for six hours a day and has had a regular schedule, and now his whole world changes. Even if your adult child can communicate, he is probably not good at communicating how he is feeling. Some may communicate the only way they know how: through behaviors that are inappropriate and make life difficult at home.
If your child is on the more able end of the spectrum and attends college, he may have difficulties with the lack of structure and with planning the use of his time to keep up with the workload. The person leaving the school transition program may have a volunteer position or a job ten hours a week but may have difficulty with the unstructured times.
It is important that as a parent you prepare your adult child for the transition. For those on the less able end of the spectrum, it is important to take the time to explain what is happening and what will happen. If social stories with pictures have been useful before, use them now as well. Even if they are unable to communicate with you very well, they probably understand a good portion of what you are saying.
Treating Them as Adults
This transition period is also a time to reflect upon how we view and treat our adult child. As parents, we need to acknowledge and accept that we will be parenting our loved ones on the spectrum a lot longer than our neurotypical children. We have to walk a fine line between being supportive and overly protective of our adult children. Our adult child is just that—an adult—and we need to acknowledge that and all that it entails. With neurotypical offspring, we remember to give them more freedom because they argue for it—as they get older, they express their desire for more independence. As your youth on the spectrum gets older, you will need to find ways to make them more independent of you. In many cases with an adult child who needs supports, the parent will have to do the pulling away. It is important to do this, but it is difficult as well. It depends on the particular circumstances when the parent should begin this process. But adult children need to experience other people and relationships.
One major concern for our children is safety, no matter where they are on the spectrum. We need to teach our children safety skills as much as possible. We can make decisions thinking of our adult children's safety, but we can't protect them too muchor they will not experience activities or situations that will help them grow. What we need to do over time is teach them how to make wise decisions and surround them with the right kind of people who will help them or advise them in their decision making, and some ideas will be discussed in Chapter 2.
Although for some the idea of having their dependent adult child live away from them is frightening, research shows that mothers whose adult children lived apart from them reported that the greatest positive impact of the move was on the child himself, as there was more opportunity for independence and continuing development.
QUALITY OF LIFE
Most parents would agree that the thing they most wish for their adult child—on or off the spectrum—is a good quality of life. This is defined as the degree to which an individual can enjoy the important possibilities of his or her life, based on the opportunities and limitations each person has. Quality of life also reflects the interaction of personal and environmental factors. In many respects, our psychological attitude defines our satisfaction with our life.
But what about those with autism who have little control over their lives and need supports, or those with Asperger's who may be independent but don't have a social network? According to a ten-year research study by the Quality of Life Research Unit at the University of Toronto, the quality of life of people with developmental disabilities is directly related to the degree to which they have the opportunities to make decisions, especially for those who are nonverbal. They also suggested that the quality of life of those with a developmental disability who live more independently would be enhanced by receiving more practical and emotional support.
(Continues...)
Excerpted from A Full Life With Autism by Chantal Sicile-Kira, Jeremy Sicile-Kira. Copyright © 2012 Chantal Sicile-Kira and Jeremy Sicile-Kira. Excerpted by permission of Palgrave Macmillan.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
Acknowledgments,Foreword by Temple Grandin,
Preface,
Notes About the Book,
1 Transitioning Our Young Adult, Transitioning Ourselves,
2 Creating Lifelong Community and Personal Supports,
3 Life Skills for a Life Span,
4 Social Relationships: Friendships, Shared Interests, and Enjoyment,
5 Love and Intimacy: Relationships, Romance, Partnership, and Marriage,
6 Living Arrangements: Housing and Home Skills,
7 Support Staff: Needed Qualities, Skills, and Beliefs,
8 The Adult Learning Environment: College and Adult Education,
9 Employment: Earning a Living,
Closing Comments: Finding Our Way Together to Create Positive Outcomes,
Bibliography,
About the Authors,
Index,