Tag: adulthood

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Disability

Autism, Siblings, and the Art of Unconditional Love: An Interview With Lindsey Nebeker

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Lindsey Nebeker is one of our community’s most visible activists, speaking out on topics ranging from autism and dating in Glamour magazine, to the need for more safety and support measures for individuals with autism at a recent Interagency Autism Coordinating Committee meeting. Lindsey was diagnosed with autism at the age of two, and began to speak around age four. She grew up in Tokyo, Japan with her younger brother James, who shares the same diagnosis but faces more challenges. She recently spoke with TPGA about her experience growing up as one of two siblings with autism. Tell us a little bit about yourself. How old are you, where do you invest your greatest energies, and when did you first receive your autism diagnosis? I am a pianist/songwriter, photographer, public speaker, and advocate currently residing in the Washington, DC metro area. As a woman in my late twenties, I have…

Disability

Autism Acceptance for Autism Awareness Month

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Leah Jane quixoticautistic.blogspot.com It is April, and that can only mean one thing to this autistic blogger: Autism Awareness Month is here for the whole 30 days of the month, and without a time machine, there’s no escaping it. Autism Awareness Month has been a thorn in my side for as long as I’ve been an adult. I am at heart an attention-seeker, so you would think having an entire month devoted to people like me would be a joy to behold. But that’s the problem behind Autism Awareness Month. It isn’t about me. It’s not about me—the autistic person. The entire conception of Autism Awareness Month doesn’t even revolve around autism, not the kind I have or the kind that anyone I know lives with. The ‘autism’ of Autism Awareness Month is a mysterious, esoteric, silent force, which magically swoops into the homes of unsuspecting families, and replaces regular,…

Disability

Planning for the Transition from IDEA Protection to Adulthood

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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,…

Disability

Penny Foolish and Pound Cruel

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Susan Senator www.susansenator.com A new era has begun for me. All the past years I’ve been going to these state hearings on proposed cuts to special education in Massachusetts. I’ve been one parent out of many parents, professionals, and students protesting cuts to programs that have never been fully funded to begin with. But today I testified at a state hearing on Massachusetts’ proposed cuts to the Adult Foster Care program (AFC), the first time I’ve spoken as a parent on Nat’s behalf — for his adulthood. I’ve written recently about the AFC program, which is funded through MassHealth and Medicaid, about how this program is part of the new movement to keep those with disabilities in their communities and homes, rather than sending them to nursing homes and institutions; The part AFC plays is that it provides a small stipend to a caregiver (usually a parent, a foster parent,…

Disability

On Snowstorms and Planning for the Future

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Elise aka aspergers2mom  asd2mom.blogspot.com As I sit here at my desk and stare out at our sixth major snow storm since Christmas, I have been contemplating our life’s next adventure: my son HSB’s entrance into college. And just the other day hubby — that Wise Old Sage — reminded me of some things he feels are important, things he wants parents of young children on the autism spectrum to know: Trust your instinct. If things are not right, they are not right. Whether at school, or just in general. Don’t listen when the school tells you how great your child is doing socially, academically, or emotionally. Watch what is really going on, don’t just take their word for it. Children make improvements, sure, but are they really improvements that would allow them to be independent when that yellow bus stops coming to your door? The schools also provide terrific support,…

Disability

For Physicians: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays

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Dr_Som www.pensivepediatrician.com/ This is a follow up to a previous post, Who Wins When Parents Spank? at the Pensive Pediatrician I certainly do not mean to trivialize the behavior issues that erupt as typical children develop, but the problems of atypical kids are more difficult and less likely to be fully addressed by general pediatricians, family practice physicians, and society at large. The 10 things pediatricians and family practice physicians can do to help families affected by autism or other developmental delays in their in their practices: 1. Understand the ABCs of behavior A= Antecedent = What happened immediately before the behavior? B= Behavior = A description of the behavior (not “he got angry”) C= Consequences = How did the parent or teacher respond and/or what kind of reinforcement did the child receive? For example, when David, my autistic son, was three, every time I fastened or unfastened his car…

Disability

Roots and Wings

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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…

Disability

On Autonomy and Establishing Guardianship for My Adult Son

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Kim Wombles http://kwomblescountering.blogspot.com/ http://www.science20.com/science_autism_spectrum_disorders My husband and I obtained guardianship of my bright boy when he was approaching 18 years old — the legal age of adulthood in the US. Bobby has a blood clotting disorder which lead to a stroke at aged nine, which left him with significant cognitive disabilities. Bobby’s certainly an adult, but he has a cognitive impairment; he can’t spell more than a few words despite many long years of working at it, can’t do double digit math. He is my son, my bright boy, and while I accept and celebrate that he is an adult, the truth is that he is an adult with a cognitive impairment that requires he have assistance. We work very hard to find a balance that allows him the opportunity for growth, to reach his potential. We work very hard to allow him as much autonomy as he is capable…

Disability

Rethinking Employment Opportunities for Adults with Autism

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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…

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Disability

For the 85% of Us Who Can’t Work

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Clay http://cometscorner-clay.blogspot.com I can’t say I’m surprised to learn that most autistics have a great deal of difficulty getting, and maintaining a job for more than six months. I believe it, because I know just how hard it has been for me. I saddled myself with a wife and two kids before I even got out of the Navy, and for quite a while, the subject of my wife getting a job wasn’t even discussed, because our generation wasn’t much into that. Instead, I took whatever job I could get, starting as a low paid parts clerk, until I accepted my stepfather’s offer of helping me get a job at an iron ore mine, (which paid much more). After I recovered from a huge accident, I returned and worked there for another three years. They gave me some hard and nasty jobs for awhile, such as wrestling with 55 gallon…