Extract

Introduction

Two years ago, at this time, my son Jeremy was 15, attending a class for the severely handicapped and the annual review of his Individual Educational Program (IEP) had just taken place. Jeremy’s classroom teacher, aide and speech therapist had just started using the Rapid Prompting Method (RPM) to teach my son. The IEP meeting notes read “Jeremy’s ability to recognize letters has been sporadic,” and went on to document my request that Jeremy participate in a mainstream core class at his high school, an idea which was not supported by the district-paid autism behavior specialist. Nonetheless, the team agreed to do so for a trial period. As we were all getting ready to leave at the end of the meeting, the autism behavior specialist turned to me and said, “You never give up, do you?” My reply to her was, “Give up? I’m his mother. Why would I give up on my own child?

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As our children grow and change, so do our expectations, hopes and dreams. For some, who had hoped for a ‘recovery’ or a ‘cure’ comes the slow realization that for their child, there may be none. For others, there may be the realization that although their child is growing and changing, their expectations and treatment of their child has not. For all parents, there is the realization that they must somehow balance acceptance of their child for who he or she is, while continuing to provide as much support as they can at home and at school to provide them with the skills they need to live as independent and fulfilling a life as possible.

Adolescence is a difficult time of life for everyone. Bodies are changing, hormones are raging, moods are swinging. Both teenagers and parents are in a state of flux. The adolescents on the less able end of the autism spectrum are dealing with their changing bodies and feelings they may not understand. For the more able teens, there is the added difficulty of trying to navigate in a social world where their peers are at a different emotional level. For parents, there is much worry and concern, and the need to inform their teenagers and to arm them with the skills they need in an environment that is not always supportive of their differences.

Most parents will find it hard, after so many years of advocating for their child in the educational system, to continue to do so. Our children are older, and so are we, and we are tired. The battles are harder at the middle school and high school level because the powers that be often do not have the same expectations for learning as when our children were younger. Often, the view is if he hasn’t ‘gotten it’ by now, he never will, so they are less willing to put resources into this age group. However, it’s vital for you to keep in mind that the human brain is pliable, and it is never too late to teach someone new skills, try biomedical interventions or traditional medications that may be helpful in certain cases. Don’t allow anyone to let you lose hope or write off your teen’s ’s potential to learn, cope, and progress.

In the year following the publication of my first book, Autism Spectrum Disorders (recipient of the 2005 Autism Society of America’s Outstanding Literary Work of the Year Award), I was invited to different parts of the country to speak about adolescent issues, including transitioning from school to work. Temple Grandin and Stephen Shore, both successful professionals on the spectrum, talked to me on numerous occasions about their concern that not enough was being done to prepare the more able teenagers for a successful and independent adulthood. At the same time, my son Jeremy was attending high school, and I realized that although legally he should be preparing for transition, there seemed to be a lack of knowledge and follow through about how to go about doing that for someone as impacted by autism as he was. This lead to much research and soul searching, and the realization that adolescence is a unique and crucial stage in a person’s development, as important as the early intervention years – yet not enough practical information was readily available to parents (or to educators) on how to teach these teens of all functioning levels or academic abilities – in all the areas important to all adolescents.

The most important thing a parent can do is to become empowered with the knowledge that can help their teenager. For this reason, this book covers areas such as puberty and hygeine as well as the more difficult topic of sexuality. The middle and high school years are discussed as well as the transition planning, with an overview of the different options currently available for adults after high school. Family life is also impacted by autism and those concerns are also addressed. Although our teenagers are no longer little, there are still many effective treatments, therapies and strategies that can be useful to them. I’ve provided an analysis of what is currently known and available. Not every idea suggested in these pages will be right for every family or individual, as every situation is unique and there is such a wide variability among the functioning and academic levels of tees on the different ends of the spectrum and in between. Yet with every topic discussed, I have included suggested books, websites and other resources to help you in your quest for useful information. As in my first book, Autism Spectrum Disorders, I have included ‘Food for Thought’ pieces written by authors on the spectrum as well as other experts.

This book is written not only as a guidebook, but also as a call to action, in the hopes of inspiring parents, professionals, and people on the autism spectrum to join together and create options for transition to real life for everyone on the spectrum. They are counting on us.

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Last year, Jeremy’s annual review included a WAIT II assessment by his special education teacher that read: “Jeremy was tested in two sections in English...It was not until he reached the high school level did he have trouble answering questions. Words such as negotiate, treacherous, and poise were missed on the test. However, these sections showed us something very important: Jeremy’s ability to understand courses at the high school level,. With the help of a staff member attending, the Case Manager believes that Jeremy can learn and will improve his knowledge through courses offered to the general education students... Jeremy can handle language at a high school level and if Jeremy does not know he can be easily taught.”

How could one short year show such a difference? The answer is that I never gave up on Jeremy. I never stopped believing in him, and searching for new ways to help him. I found a way, then worked hard to teach Jeremy. After that, it was my son who convinced everyone else that he had potential, that he could learn. The people who work with him and teach him saw his capability and believed in him.

It takes a village to raise a child, and as parents we need a village of individuals – teachers, instructional assistants, speech therapists, occupational therapists, community members and those able individuals on the spectrum – to believe in our children and help them grow and prepare for a future of interesting possibilities.

But as a parent, you need to take the first step -- no matter how small – and never give up.