Newsweek reexamines anxieties surrounding autism, a mystery with no known cause. The uncertainty is fueling an ongoing vaccine debate and harsh divisions within the autism community about how to view and treat the disorder. While some feel that autism is a disease in need of a cure, others are calling for neurodiversity, the idea that differences in human behavior should be celebrated.

“Our feeling is that the autism spectrum is an intrinsic part of our personality that cannot be separated,” says [Ari] Ne’eman, [president of the Autistic Self-Advocacy Network and a 20-year-old university student with Asperger's syndrome.]

And he worries about research that might one day locate genes and other markers that could help doctors test for autism. Researchers say such knowledge would allow them to intervene early, during a critical window of development in the first year of life. Ne’eman’s fear? That autism will become like Down syndrome-essentially selected out of the population.

An accompanying chart of NIH research funding shows autism is expected to receive $128 million this year, or approximately $85.33 for each of the 1.5 million people diagnosed.

Of the conditions named, Down syndrome receives the smallest amount of research funds, both in the aggregate and on a per capita basis, with a total of $17 million or $48.57 per person diagnosed.

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In an interview on Wisconsin Public Radio, author Jonathan Mooney says our culture’s concept of normal is damaging to everyone, not just people who are identified as different.

Mooney, who had dyslexia and didn’t learn to read until he was twelve, is the author of “The Short Bus: A Journey Beyond Normal.” His book documents a four-month journey that he took around the country in a converted special-ed bus (the “short bus” of the book’s title.) Along the way, Mooney came to terms with his differences as he confronted his preconceptions about other people who have been labeled as disabled.

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Brownback and Kennedy do the right thing

By Wesley J. Smith in the Weekly Standard:

It is a bitter irony that even as we are enlarging our commitment to human equality in many areas, we are turning our backs on it in others. In particular, we may be about to eliminate from our society people with Down syndrome (DS) and other genetically caused disabilities.

With the development of prenatal genetic diagnosis, the drive toward eugenics has returned with a vengeance. Americans may heartily cheer participants in the Special Olympics, but we abort some 90 percent of all gestating infants diagnosed with genetic disabilities such as DS, dwarfism, and spina bifida.

… What Kennedy and Brownback hope to provide to parents of genetically disabled babies is the legal assurance that they will be provided information that is complete and informed — rather than counseling tainted by prejudice, ignorance, or fear. The Prenatally and Postnatally Diagnosed Condition Awareness Act may have a clunky name, but it is a noble and practical bill that deserves the support not only of those ideological opposites Kennedy and Brownback — but also of everybody in between.

Lisa Lavia Ryan’s friend Shelly is helping her 22-year-old son Jake move into his own apartment. It’s another major milestone for Jake, who has Down syndrome, and his mom is nervous. Ryan writes about it in the Des Moines Register:

… as I listen to Shelly wrestle with herself over letting Jake go, I wish I could soothe her with kind words and chocolate … But this is too big, and all the Little Debbie snack cakes in the world won’t work.

“Am I doing the right thing?” she asks. “It would be easy to keep him here. He’s fine here, and it’s not like he’s asking to leave.”

… I sit quietly and am reminded of how much I admire my friend, who, at only 23, had to face the reality of having a baby who was not the child of her dreams. I am reminded of how hard she and her husband have worked to encourage Jake to be the capable young man he has become.

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… a mother seeks more public consciousness

‘He’s more like everyone else than he is different’

From the Kokomo (Indiana) Tribune:

When the doctor handed Christie Taylor her newborn son, Joseph, he apologized.

Despite several ultrasounds, the doctors never picked up on her son having Down Syndrome, a condition that delays development.

His twin, Jackson, was in perfect condition.

But Christie and Shawn Taylor weren’t sorry.
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Writing in the [Brisbane, Australia] Courier-News, Liberal Senator Sue Boyce calls for a global celebration of World Down Syndrome Day on March 21st. Boyce has an adult daughter with Down syndrome. An excerpt:

The world would be a much, much poorer place without people with Down syndrome. Forget the stereotypes – they aren’t “all so loving” and while all the people with Down syndrome I know “really enjoy music and dancing” so do most of the non-DS people I know.

But most people with Down syndrome I know demonstrate an ingenuousness, an ability to cut through to the basic humanity of others and a delight in simple things that enriches my world and the world of everyone who knows them.

The theme chosen for this year’s World Down Syndrome Day is “Aim High Enough”.

It’s from a piece of advice that an old villager gave Langdon Down and that he passed on to his medical students: “My lad, you take your aim; be sure you aim high enough. That’s the thing – aim high enough.”

As a society, we owe it to ourselves to ensure that we are never satisfied that we have aimed high enough in supporting people with Down syndrome into the mainstream.

From the Cleveland Plain Dealer: Policy Matters faults state’s autism scholarship program; Oversight is lacking, study says

A fast-growing state program that gives parents of autistic children up to $20,000 for private educational services lacks oversight and allows providers to exclude children based on religion and other factors, says Policy Matters Ohio.

The Cleveland think tank released a report today that gives generally poor marks to the “autism scholarship” program. The program allows parents to opt out of the public school system and use public school money to buy private services. Most private services don’t provide a school setting, which is another point of criticism in the report.

From the Columbus Dispatch: ‘All for some and none for some;’ A fix can’t come soon enough for Ohio’s wildly inequitable system of helping autistic kids

Under the current system:

• A private autism center in Franklin County consumed 50 percent of the public money spent on psychiatric treatment for autism last year even though it served just 4 percent of the children, state officials say. Step by Step Academy also billed $180,000 to treat one child while another family, waiting years for a Medicaid waiver to help pay for services, made do with $672.

• Ohio funds scholarships that provide up to $20,000 a year for families to purchase educational services for autistic children but offers nothing similar for those with cerebral palsy, Down syndrome or other forms of developmental disability.