Jan 31, 2012 0 Share

The Autism Speaks Transition Toolkit

Cover of Autism Speaks Transition Tookit
Artwork courtesy of Autism Speaks

Every day, for the past seven years, had begun more or less the same:  Daniel would wake up before anyone else and come downstairs to watch TV and play on his computer. He had recently started making his own breakfast (finally!), although he still often “forgot” until Mom or Dad came down to start their coffee machine. Sometimes he’d remember to let the dog out. But he always needed multiple prompts and reminders to move on from there to finish his morning routine—showering, shaving, brushing his teeth, combing his hair, dressing for school (and for the weather), and gathering his things so that he’d be ready for the bus. 

It wasn’t clear if Daniel really needed these cues from Mom and Dad to get his day started or if he was just waiting for them out of habit. But for nearly every single weekday morning since he first entered his high school’s “Life Skills” class as a 14-year-old freshman with autism, it had been a matter of routine. Like clockwork, in fact. And as usual, today Daniel was ready on time, standing by the door with his jacket and backpack slung over his shoulder at precisely 7:36 a.m., waiting for the school bus. 

But this day, as Daniel’s parents said their usual goodbyes and watched him walk out to the curb, was different—today was Daniel’s 21st birthday, and he would age out of school at the end of the year. Come the end of June, that old reliable school bus would no longer arrive. The team of teachers, paraprofessionals, administrators, and yes, bus drivers, would no longer be there for him. That morning routine that had become so ingrained in Daniel and his parents and that had seemed to set a steady, familiar tone for the rest of his day, would have to change. And while Daniel was blissfully unaware of this impending change, his parents worried constantly about his all-important transition from adolescence to adulthood. 

At the moment of Daniel’s diagnosis at age three, his parents felt afraid, lost and confused, and at times angry and hopeless. But before long, they had effectively become experts in the fields of autism and advocacy. They’d worked tirelessly to learn everything they could about early interventions, PECS, ABA therapy, RDI, and other possible interventions. Then they had to become master advocates for their child—and eventually for others as well—working hard and negotiating with their school district to obtain the services and supports Daniel needed in school in order to maximize his potential. In the end, they had essentially earned Ph.D.s in the subject of Daniel—experts in his strengths and weaknesses, his needs and his interests, and particularly in his rights as a child with autism in the public school system. 

But now, suddenly, they were being forced back to square one. Once again, they would be alone and without the requisite knowledge it would take to navigate a completely new set of challenges in a system that was completely foreign to them. The prospects were indeed daunting, and Daniel’s parents felt that same terrible feeling as when their son was first diagnosed: A fear of the unknown. 

But Daniel’s parents are not alone! It is important to remember that others have been down this road before them, and before you. They have blazed a trail. Just as there were experts for toddlers and school-aged children, there are experts as well in this Transition phase for young adults with autism. And there is a growing body of research and resources available to help parents of adolescents and adults with autism. As we know, this road from childhood to adulthood can be difficult and overwhelming for all families, but especially for those of individuals on the autism spectrum. So in February of last year, Autism Speaks launched the inaugural edition of the Autism Speaks Transition Tool Kit, a 100-page resource guide designed to help families navigate this often complicated journey. 

About the Transition Tool Kit 

At Autism Speaks, we regularly hear from families of Transition-aged adolescents and young adults about the worry and uncertainty they feel about the road ahead. These parents and family members find the idea of their children venturing out in the world to be daunting. They can’t imagine what will happen when school ends and the real world begins. In response to the concerns of our community, we created the Transition Tool Kit to provide suggestions and options to think about and explore as families set out on this journey. 

We know that every individual with autism is different. Each person has different likes and dislikes, strengths and weaknesses. We strongly emphasize that though the path will be different for each family, the goal remains the same: For adolescents with autism to lead fulfilling, healthy, and happy adult lives. The guiding principle that we used in developing this kit is that all individuals with autism, regardless of the level of support needed, should be able to live lives filled with purpose, dignity, choices, and happiness. This kit encourages individuals with autism and their families to be proactive in their approach to the transition process. 

A central theme throughout the Transition Tool Kit is the importance of self-advocacy. The most important place to start the transition process is with the adolescent. His or her hopes, dreams, and desires should drive the transition process. The transition process will take time. It is important that families work with their loved one to provide the communication, self-help, and self-advocacy skills that he or she needs in order to be an active participant in the process to the best of their ability. Helping adolescents with autism develop a “sense of self” will aid in the transition process and develop a skill that will benefit them throughout their lives. Each of the sections of the kit incorporates the principles of self-advocacy. In order to one day live as independently as possible, an individual with autism must have as much of a say as possible from the start in decisions guiding his or her future. 

How Families Have Responded 

Autism Speaks sends hard copies of the Transition Tool Kit to families of individuals with autism ages 14 to 22 free of charge. Since the launch of the kit, we have sent out over 2,500 copies, and over 11,000 people have downloaded the kit from our website. At Autism Speaks, we are constantly working to build upon and improve our resources to better meet the needs of families in our community. So in May 2011, we surveyed the families who received hard copies of the kit to find out what was helpful and what we could improve. We are happy to say that over 97 percent of these families were extremely satisfied or very satisfied. 

For the next version of the Transition Tool Kit, we are looking to incorporate the feedback we received. 

Interestingly, when we asked how we could improve the kit, half of the respondents wanted more in-depth information on each  topic, and the other half felt there was too much information. This epitomizes some of the challenges that individuals with autism and their families face during the Transition years. There are so many factors that need to be discussed, put into place and reviewed while the student with autism is still in school. On the other hand, all of this information can sometimes feel like too much to absorb at once. It is important that individuals with autism and their families break the many tasks down into more manageable steps. They may want to read one section at a time. For those who need more information, they may want to explore the additional resources at the end of each section. 

Families found the information in the kit to be extremely helpful in their transition planning. However, one recurring comment indicated the need for more information about how to actually implement the steps and recommendations we provided in their own lives and communities. Families wanted to learn more about how they can specifically advocate for services for their children and young adults. In response, we are currently working on an Advocacy Tool Kit that will go into greater detail about the importance of advocating on behalf of loved ones with autism, and provide families with tips and tools to successfully do so. In addition, along with the state-specific Transition timeline we send out to each family, we plan to include information from the Autism Speaks Resource Guide about the resources for young adults of transition age in their local communities. We are constantly looking to expand our Resource Guide to provide families with more information about local resources. The guide currently contains close to 45,0000 resources from across the country. 

Many families also mentioned how they wished they had had this Transition information sooner. Through the Autism Speaks field staff, Walk Now for Autism Speaks, other fundraising events, and our social networking sites, we are working to spread awareness about the Transition Tool Kit so that families of younger individuals gain access to this information sooner and can begin their Transition plans as early as possible. It is never too early to start planning! 

We are about to send out a second survey to families who received the kit since the last survey was released. We look forward to the feedback that we receive. Based upon the survey responses, we will continue to refine the kit and our resources to best meet the needs of our diverse community. It is our hope that with the Autism Speaks Transition Tool Kit, families will be able to successfully lay the foundation for the future of their young adults with autism.