For the autistic, how to get heard

Stephen Shore understands better than most that not all people communicate their needs in the same way. An autistic adult who functions at a high level, Shore has recently finished his second book that focuses on helping those with autism and Asperger's syndrome, a disorder which many identify as a form of autism, become better advocates for themselves.

He hopes the book, "Ask and Tell: Self Advocacy and Disclosure for People on the Autism Spectrum," will provide a resource for people with autism, parents, other relatives, friends, and educators. Shore says better education and self-advocacy are the keys to many problems faced by people with disabilities and their communities.

"I see so many people with disabilities who don't know how to advocate for their own needs," says Shore, 42, who has lived in Brookline about 15 years. Shore says his own experiences form the basis for his work as a lecturer at several area colleges, a writer, and music teacher, all of which he continues to do while working on his doctoral dissertation.

"Ask and Tell," which was released in July, is a book with six sections written by people from around the country with varying degrees of autism. Shore, the book's editor, wrote a chapter that focuses on individual education plans for special-needs students. He argues that autistic students should play an integral role in shaping these customized plans. "No time is too early to get a student involved," says Shore.

Shore argues that it's important to learn from the children themselves what makes them frustrated, able to understand information, or confused. Shore had no such plan while he was growing up, and he says his chapter is about "looking back and reflecting, and wishing I could have done this." As a youngster, Shore struggled through elementary school, endured a teacher telling him he would never learn math (although he now teaches statistics at the college level), and was ridiculed by peers.

Shore says he regularly faces one of the dilemmas discussed in the book: whether to disclose his disability. When teaching a class on autism, he says, he finds it relevant to talk about his situation. But when he's talking statistics, Shore merely tells students that he has a hard time remembering faces, so they won't be offended if he doesn't recognize them.

"It's difficult for me to recognize people," says Shore, who says he has trouble with facial recognition until he knows someone well. Recognizing his wife, family, and close friends isn't a problem, but a slew of new students can be challenging. "This is about the philosophy of people with Asperger's speaking up and asking for what they need," says Dania Jekel, executive director of the Newton-based Asperger's Association of New England. Jekel says the book could be especially useful for those who have been diagnosed at a young age, although she adds that it also provides insights for those who have been diagnosed with autism later in life.