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It’s Time to Prepare the World for Your Child

Photo: woodleywonderworks | Flickr/Creative Commons [image: Young white child with short dark brown hair embracing an enormous globe of the earth.] Maxfield Sparrow unstrangemind.com Ray Hemachandra recently published an essay on his blog that reads like a love letter to/about his adult Autistic son, Nicholas. In the essay, Ray muses about how quickly time slips by, and how suddenly it seems that his son is transitioning from school to adult life and all the possibilities and struggles that includes. “For an adult child, parents and families soon no longer have school IEP meetings to fight for rights, accessibility, and inclusion. But many of the same questions we wrestled with in the school setting extend into adulthood and society: Will he or she be isolated or included? How do we foster more inclusive communities broadly, but also more specifically take steps to ensure our child feels a part of the world,…

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Why Supported Decision Making Is a Better Choice Than Conservatorship

Image © Falashad | Creative Commons   [image: Smiling white woman with crown braids hugging a person with an auburn ponytail.] Many families or guardians assume that when high-support autistic teenagers transition to adulthood, they automatically need to be legally conserved for their own protection. But that’s isn’t necessarily true. We spoke with UCSF’s Dr. Clarissa Kripke about why Supported Decision Making can be a better choice than pursuing conservatorship, and the many reasons why. —- Dr. Clarissa Kripke: When people with disabilities and their families start to think about transitioning from child to adult services, they are often encouraged to consider conservatorship.  Conservatorship is a legal process where a court appoints an individual or organization to make decisions for an adult. Courts do this after finding that the adult is unable to provide for his or her own needs for health, food, clothing, or shelter. They must be found unable…

Autistic Adults: Late Diagnoses and Supported Transition: An Interview With Brent White

M. Kelter theinvisiblestrings.com Ala Costa Adult Transition Program (ACAT) is a non-profit organization serving students with developmental disabilities between the ages of 18 and 22. Its unique approach involves not only teaching vocational and living skills but neurodiversity and self-determination. Brent White, director of the program, was recently diagnosed with Autism Spectrum Disorder. I spoke with him via e-mail about the diagnosis and his thoughts on ACAT, bad therapists and more. —- M Kelter: When did you first became of aware of the autism spectrum? Did you immediately feel any sense of recognition? Brent White: I’m not sure at what point exactly I became aware of autism. I think I might have watched a news program many years ago that did a story about autism that left me with the [mistaken] impression that autism was kind of a disease that created strange feral children who didn’t love their parents. I…

A Letter To The Staff at My Daughter’s School

Ariane Zurcher emmashopebook.com All examples are misunderstandings or things that have been said and done to Emma by someone within a school setting. My daughter, Emma will be at your school this year. A few days ago, Emma told me she was “scared to go to new school.” Emma loved her teachers and friends from her old school. So I want to introduce you to her. I cannot speak for Emma, I cannot know if everything I write here is completely accurate, but these are things I have learned over the years, things that are specific to Emma and that may be helpful, at least that is my hope. Sometimes Emma does not look at you when you are speaking to her, but that doesn’t mean she doesn’t hear you. Her hearing is excellent. She may not know how to process what you’ve said or she may not know what…

Sam, at Nineteen: On Transitions and Autistic School-Leavers

Charlotte Moore www.ambitiousaboutautism.org.uk Charlotte Moore is an author, journalist and Parent Patron of Ambitious about Autism. Here she writes about her hopes and fears for her son Sam as he moves on from school and in to adulthood. We hope readers will share their own experiences and opinions about this transition period. My son Sam left school in July 2011. Sam has autism with learning difficulties. At 19, he has reached the age at which the government relinquishes responsibility for the education of people like him. I hope I won’t come to look back wistfully at Sam’s school years as a lost golden age. I hope that the home-based timetable I’m in the process of constructing will serve his needs. But I’m daunted to discover how much is down to me. For a long, long time — almost as long as he can remember — Sam has been in a…

Idle Thoughts on a Son’s Transition to Autistic Adulthood

Susan Senator www.susansenator.com “Well, that was school. I learned a lot.” This is what my husband Ned once imagined our son Nat might be thinking as he rode home from his very first day of school, back in 1993. The school was located in a junior college in the adjacent town; it was a mixed-disability class, as well as having typically developing children. Ned told me that he had no idea what Nat might make of school — it was such a big concept to understand for a three year old, especially one with “Expressive Language Disorder and Autistic-Like Symptoms.” (This was his very first diagnosis; I almost like its quaint and evasive character, in the way that I can look back on almost anything from that long ago with fondness: awww, such a little innocent naive diagnosis.) Even though we prepared him with a Nat Book (known to most…

IMFAR 2011: What Parents Expect For Their Autistic Children, High School and Beyond

As Peter Bell (Autism Speaks’ executive vice president for programs and services) reported at the Autism Speaks Blog, While IMFAR is first and foremost a scientific meeting, the meeting has developed into a healthy blend of science and stakeholder perspectives. John Elder Robison reported This year many scientists who have family members on the spectrum proudly wore stakeholder ribbons on their name tags One such scientist/presenter/stakeholder was Matthew J. Carey PhD, known to many as “Sullivan”, who blogs at LeftBrain/RightBrain. While Matt’s day-to-day research has to do with computer hardware, his avocation is writing about autism science. One area in which he excels is analyzing published papers and public datasets bearing on autism. For the 2011 IMFAR meeting, Matt submitted an abstract on the data presented by the National Household Education Surveys Program (NHES) The NHES surveys cover learning at all ages, from early childhood to school age through adulthood.…

Planning for the Transition from IDEA Protection to Adulthood

Daniel Dage specialed.wordpress.com Note from the editors for readers from outside of the United States: In the US, educational rights for students with disabilities are covered by the federal Individuals with Disabilities Education Act (IDEA). Another piece of legislation, the Americans with Disabilities Act (ADA) also has educational implications. A third piece of legislation, the Family Education Rights and Protection Act (FERPA) transfers privacy rights to students when they reach the age of 18, unless the student grants rights to parents. In the US, the preferred term for substantial limitations in cognitive and adaptive functioning is “intellectual disability”, while “learning disability” is reserved for unexpected difficulty in acquiring specific academic skills. Elsewhere in the English-speaking word, “learning disability” is used in referring to people who have substantial limitations in adaptive and cognitive function. There is widely understood to be a continuum of disability (both in physical and cognitive areas): mild,…

Roots and Wings

Liane Kupferberg Carter www.huffingtonpost.com/liane-kupferberg-carter Editors’ note: While some of the referenced documents discuss parents who seek “cures” for their children with autism, it is our opinion that overall Autism Speaks advises those parents to seek evidence-based supports and therapies. If you ask our son Mickey what he might like to be when he grows up, he will probably say, “A librarian. Or a Pokemon Master!” There aren’t too many jobs for a crackerjack Nintendo player, but Mickey is learning other skills. At 18, he attends the Comprehensive Support Program at our local public high school. But no one program can ever be fully comprehensive. We also run a home-based program to address self-help goals, and send him three mornings a week to a vocational and life skills program at an A.B.A.-based learning center. At home and at both his schools, we work on such tasks as making a grocery list…

Rethinking Employment Opportunities for Adults with Autism

Scott Standifer Disability Policy and Studies Office School of Health Professions University of Missouri http://dps.missouri.edu/Autism.html standifers@missouri.edu Introduction from the editors: Many of our readers are from outside the United States, or have children with autism under the age of 16, and so are not yet fully aware of some of the elements of employment and employment planning for adults with disabilities in the US, including autism. The following brief summary is an orientation. In 1973, the United States passed a law that directed federal and state authorities to assist people with disabilities to find employment. In the same time period, the US mandated that children with disabilities must receive educational services, and to be provided with planning for transition from the school years to subsequent employment. In the subsequent years, transition from school to work has evolved in many ways. In the US, the system for helping people with disabilities…