Unfriendly Consequences: What Competition for Limited Resources Does to the Autism Community and Autism Families

Autism and Oughtisms Autism and Oughtisms What happens to a community of people facing the same challenges, forced to compete for limited resources (particularly government resources)? The effects I’ve seen at a local level – here in New Zealand – appear to be replicated overseas, according to what I’ve seen in debates and conflicts in the online communities. There are various government provided supports (in terms of finances and services) that require you to prove your child’s autism is more severe than other children’s autism. Sometimes this is done in direct competition; a specifically limited number of packages of assistance are made available within the country, to the point that if your child qualifies for the support, there is one less assistance package available for another family. Other types of support are available to every child on the spectrum, but the level of support you receive, or how long you…

On “Social Blindness”

Sarah Seymour www.allkidshavespecialneeds.net Two Facebook friends who I am blessed to know (and who happen to be on the autism spectrum) made the following comments: “[Simon] Baron-Cohen says autistics are ‘mind (socially) blind” … but… who is blind?… according to Temple Grandin, neurotypicals are “sensory blind”… seems we are all pretty blind… but at least many of us autists are making great efforts to see outside ourselves… how many of you neuro…typicals can claim to match our efforts????” “I agree. 🙂 See more in the article Q&A: Temple Grandin on Autism & Language on NPR. Autistic people can be isolated, Temple Grandin says, not only because they have difficulty making a connection with so-called “normal” people, but because normal people find it difficult to put themselves in an autistic person’s shoes and see the world from their perspective.” I thought the differences they pointed out were so interesting. Having a…

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Interview: iAdvocate’s Alan Foley on Empowering Parents of Children in Special Education

Syracuse University professor Alan Foley developed iAdvocate, a free iPhone app that helps parents of school-age children with special needs “share and develop specific strategies with parents for working collaboratively with a school team to improve their children’s education.” We’re grateful to Dr. Foley for talking with us about how iAdvocate can help our families, his development process, and how his app is setting a advocacy precedent. We recommend reading Syracuse University Magazine’s excellent Spring 2011 Access and Opportunity article for more information about Dr. Foley’s work. Your app is remarkable, and is filling a role a lot of people hadn’t anticipated — when it comes to autism and other developmental disabilities that can have a language component, folks tend to focus on iPods and iPads in an AAC (Augmentative and Alternative Communication) capacity. Apps like iAdvocate clearly demonstrate that these devices can be so much more. What inspired you…

A Little Helps a Lot: Donate $1 to Autism Research.

Autism Science Foundation is featured on Philanthroper.com today giving us a simple way to donate.   The Autism Science Foundation provides funding to scientists and organizations conducting, facilitating and promoting autism research, and has our shared desire to seek evidence-based therapies. ASF was the initial support behind the grant that allowed TPGA editor Shannon Rosa to go to IMFAR, and helps fill in the gaps that federal cuts have left in research budgets; sometimes it only takes a seed grant to get a driven researcher on their way. Today you have the opportunity to make a quick, small donation to a great organization, and Philanthroper makes it easy to do. Philanthroper has been described as the “Groupon” of the nonprofit world raising funds $1 at a time for a selected nonprofit and today that’s Autism Science Foundation:  https://philanthroper.com/deals/autism-science-foundation#/ Philanthroper is about group giving. If everyone gives a little bit it…

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Heeding Autism’s Aesop

Earlier this year we interviewed John Elder Robison, but today TPGA editor Carol Greenburg gives her unique perspective as she reviews Mr. Robison’s new book, Be Different. -The Editors Anyone who has ever tapped on the window of, but cannot open the door to the world of normalcy (wherever that is) owes it to themselves to buy Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachersby the luminously wise John Elder Robison, author of Look Me in the Eye, a 2007 memoir that well earned its place on the New York Times bestseller list. I’m on the autism spectrum, myself. Like Mr. Robison I was diagnosed in my forties, which means I was born long before Aspergers was generally recognized as a diagnosis, too early for effective intervention. For me Be Different, the follow-up to Mr Robison’s ground-breaking memoir Look Me in the…

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Summer Strategies for Autism Families

Shannon Des Roches Rosa www.thinkingautismguide.com www.squidalicious.com Summer. Now there’s a word that terrifies parents of school-aged kids with autism. We do not necessarily associate the word with “break.” For us, summer means potential implosion of carefully orchestrated school, services, and respite schedules — and the resulting scrambling and scraping to make new arrangements. My son Leo’s last day of fourth grade was Friday, and I am fretting. He is in such a beautiful space in his wonderful new school — progressing on his IEP goals, excited to get on the school bus every morning, arriving home trailed by email reports of successful, action-filled classroom days. Getting him to this point has taken months of routine-reinforced effort. I’m worried that summer will undo it all. Children with autism work hard to gain skills during the school year, and that learning can quickly slip away without ongoing, reinforcing learning opportunities. This means…

Some thoughts on Dads, IEPs, and PTOs

With love and respect for our dads with autism, and our dads of children with autism. Have a rewarding Fathers Day. -The Editors G. Brett Miller blog.gbrettmiller.com This is a repost of something I originally wrote in the summer of 2007. Three years old, but just as relevant now as it was then. Last summer (2006) in the post Men must attend IEP meetings, I quoted Charles Fox of the Special Education Law Blog on the important role men can (should) play in the IEP process. With the beginning of the school year and IEP season looming, I felt it appropriate to reprint Fox’s quote: Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that ‘men must attend meetings.’ [number 11] I was actually accused of…

But I Don’t Know What to SAY!

Kim Dull modernparentonline.com/never-a-dull-moment I realize that 99.999% of the people I talk to regarding my son’s special needs and diagnoses have good intentions–they just have no clue what to say or how to react. They’re trying to help, but unfortunately some of the most common responses are the most irksome. I want to acknowledge that quite often I am just as clueless about how to respond when someone shares news, like a new diagnosis, even though we’ve been through it ourselves. Everyone is different and reacts differently; that’s what makes it so hard. What works for ME may not work for the next person. And this is not intended to make you feel like you need to walk on eggshells when you get this news. Quite the opposite: it’s intended to make you feel comfortable in NOT knowing what to say. So here’s a quick how-to guide for navigating the…

Interview: Dana Commandatore of Rethinking Autism

Autism activist Dana Commandatore of RethinkingAutism.com is the mother of an autistic boy. She hopes for a better quality of life for autistic people and their families. Dana says, “Through acceptance and understanding we can make progress.” We agree, which is why we asked to interview her about her site, and the provocative and much-needed autism videos she creates. From the RethinkingAutism.com home page: All too often in the world of autism, celebrity and sex appeal are used to promote pseudo-science and personal agendas. RethinkingAutism.com wants to change minds, change the current media conversation and help give autistic people a more prominent voice in the conversation. Up to this point, certain celebrities and some parents of autistic children have dominated the media with their miracle cures and unsubstantiated theories on causation. This exploits autistic people, their family members and the public. Please join us. Share the videos, read the blog…

TPGA’s Mission Explained, on HealthCentral.com

During IMFAR, HealthCentral’s Jeremy Shane inteviewed TPGA editor Shannon Des Roches Rosa about the Thinking Person’s Guide to Autism. Shannon talks about why we created TPGA, how our site and forthcoming book provide the “crash course” parents of kids with new autism diagnoses need (and which doesn’t currently exist), as well as the importance of finding positive role models, community, and information as soon as possible after an autism diagnosis. Jeremy also interviewed Shannon about Accepting Your Child’s Diagnosis, and on iPads & Learning Devices for Teaching Kids With Autism.