NYT: An Oasis of Care for People With Intellectual Disabilities

LOUISVILLE, Ky. — A mother needs to get her son out the door. Thick white socks cover his contorted feet, a coat drapes his twisted shoulders, a water bottle with a straw nestles in the concave of his chest, and black straps on his wheelchair secure his wrists. He is 33 years old, and she has to get him to an appointment.

“I always forget something,” the mother, Mimi Kramer, says, looking about her small, immaculate house. “Oh. A change of pants, just in case.”

Her son, Trey, has intellectual disability, autism and cerebral palsy. He was a joy as a child, she says, but with puberty came violent acts of frustration: biting himself until he bleeds, raging against sounds as faint as a fork scrape on a plate, lashing out with his muscular right arm. He nearly bit her finger off one Kentucky Derby Day when she tried to swipe away foam that he had gnawed from his wheelchair’s armrest.

“But he’ll also definitely make you smile when he’s happy,” says Ms. Kramer, 52, a slight, divorced woman who has raised her son mostly alone. “His smile will light up the room.”

For years, parents like Ms. Kramer have struggled to find compassionate health care for their adult children with profound disability, among the most medically underserved populations in the country. They are told their children are not welcome: too disruptive in the waiting room, too long in the examining room — beyond the abilities of doctors who have no experience with intellectual disability.

“It’s been really hard to find anyone to even take him,” Ms. Kramer says. “Much less the experience when you go into a waiting room with someone as challenging as Trey.”

Now, though, Ms. Kramer has a place to go. A motorized lift raises her son into her customized Ford Econoline van, where a home care aide named David Stodghill keeps some fudge cookies nearby as positive reinforcement for Mr. Kramer. Continue reading NYT: An Oasis of Care for People With Intellectual Disabilities

NYT: Hoping for Smiles, Mother Gives Autistic Son a Spider-Man Party

The boy stood alone in the dim hallway of the housing project community center. He stared at a row of lockers, at a vending machine, at nothing.

In the next room, children and their parents and grandparents shouted and laughed over dance music booming from somebody’s speaker. The party was up and running.

The boy’s name was Jamel Hunter, and the party, on a Saturday night in East Harlem in November, was for him. He had just turned 8. His family did not notice him leave the party room and slip outside to the hall. They were used to that.

After a while, Jamel came back.

Every available surface of what, an hour earlier, had been an empty community room had been decorated in the colors and likeness of Jamel’s favorite superhero, Spider-Man. There were Spider-Man balloons, cupcakes, a spider made of frosting on the birthday cake, even a homemade pin-the-tail-on-Spider-Man game.

Jamel’s mother, Phyllis Atwood, 46, sat and looked around. A Spider-Man mask dangled around her neck. She was already wiped out. She had put a lot of work into this night, from reserving the room to finding the theme song to the Spider-Man television show to making her famous potato salad. The night was part party and part prayer, for it was a first for Jamel, and she wanted it to be perfect.

Jamel has autism, and slight variations from his routines can be jarring, sending him into screaming fits or silent retreats to his own thoughts. The party was a huge leap. The volume of the music, the rows and rows of trays of barbecue and soft drinks and desserts, the brightly colored balloons — it was as if Ms. Atwood were making up for lost time, throwing him three or four parties at the same time. Continue reading NYT: Hoping for Smiles, Mother Gives Autistic Son a Spider-Man Party

Daily Mail: ‘I have Asperger’s ‘ – Under the microscope with Dan Aykroyd

'I feel I've got two or three cat lives left,' said Dan AykroydThe 61-year-old actor on the Blues Brothers workout, always being tired and why he doesn’t fear death

‘I feel I’ve got two or three cat lives left,’ said Dan Aykroyd

How fit are you?

I’ve never cared for sports. I played some baseball at school in Canada and used to walk two miles there and back through the snow. My Blues Brothers shows require a lot of energy, but that’s the only exercise I do. I can still do the moves, except for knee drops because I’m not as flexible as I was.

What’s your diet like?

I like hearty and authentic, yet simple, food — lamb chops with roast potatoes and a glass of shiraz is a favourite. I’m a wine aficionado. I usually choose food to complement wine. Good food doesn’t have to be fancy. My day-to-day favourite is a sandwich made with black pumpernickel bread, Swiss cheese, lettuce, mustard mayo, Black Forest ham, a few sliced pickles and a dollop of grape jelly.

Any vices?

Macaroni and cheese, made properly with spice and truffle oil. When I’m with my wife, Donna, we open a bottle of pink champagne and complement it with pecorino cheese and red pepper jelly.

Any family ailments?

No, my parents are 95 and 91 and going strong at the Aykroyd ancestral farm in Kingston, Ontario. But I was born with heterochromia iridum — different coloured eyes, one green, one blue. I also have syndactyly, where two or more digits are fused, I have two toes on each foot webbed almost to the top.

 

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Time: Jerry Seinfeld Says He Is Not on the Autism Spectrum After All

“I’m not on the spectrum”

Comedian Jerry Seinfeld has backtracked on recent comments he made stating that he was on the autism spectrum.

In an interview with Access Hollywood, Seinfeld said he does not fall on the spectrum, contrary to an interview with NBC a few weeks prior in which he said he did.

“I don’t have autism, I’m not on the spectrum,” theComedians in Cars Getting Coffee star said Wednesday. “I was just watching a play about it, and … I related to it on some level.”

The comedian was commended by members of the autism community after he told NBC’s Brian Williams in early November that he might be autistic. “I think in a very drawn-out scale, I think I’m on the spectrum,” he said, adding that he didn’t see being on the spectrum as dysfunctional but merely an “alternative mind-set.”

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BBC: Lesser-known things about Asperger’s syndrome

When people hear the words Asperger’s syndrome, they often think of children or Albert Einstein – even though he was never formally diagnosed. But here are some things about Asperger’s that are less well known.

Asperger’s syndrome, sometimes known as an autistic spectrum disorder, is a lifelong disability which affects people in many different ways.

While there are similarities with autism, people with Asperger’s syndrome have fewer problems with speaking and don’t usually have the associated learning disabilities.

They sometimes call themselves aspies for short. In recognition of the fact that their brains are wired differently, people with autism and Asperger’s say that they are “neuro-untypical”. They call people who don’t have either disability “neurotypicals”, or NTs.

And that’s just for starters. Here are some more lesser-known or misunderstood aspects of Asperger’s syndrome from those who know.

Is it mainly a boy thing?

Although Austrian paediatrician Hans Asperger thought it only affected boys when he first described the syndrome back in 1944, research since has found that there are likely to be a similar number of females on the spectrum.

The National Autistic Society says that because of the male gender bias, girls are less likely to be identified with autism spectrum disorders, even when their symptoms are equally severe. Many girls are never referred for diagnosis and are missed from the statistics altogether.

Asperger’s affects females in a slightly different way. Girls will have special interests but instead of building up an incredible wealth of knowledge on subjects like trains or dinosaurs – like boys with Asperger’s might – they tend to like the same things as neurotypical girls their age, albeit in a more focused way. Continue reading BBC: Lesser-known things about Asperger’s syndrome

WashPOST opinion: An autistic man caught in the criminal justice system

December 12

FOR THE apparent crime of wearing a hoodie in public, an 18-year-old black man was approached by a sheriff’s deputy in Stafford County four and a half years ago. A caller had reported that the man, sitting on the grass across the street from an elementary school, might be armed. As it turned out, the suspicion was unfounded; the man, Reginald Latson, who has an IQ of 69, was doing nothing more than waiting for a public library to open its doors.

Yet that unprovoked encounter between the deputy and the teenager, which culminated in the teenager’s arrest and felony conviction for assaulting the deputy, triggered a tragic sequence of events. As The Post’s Ruth Marcus has detailed in two op-ed columns, the story of Mr. Latson is a case study of how ill-equipped the criminal justice system is to handle people with mental, developmental and emotional disabilities.

Specialists who have examined Mr. Latson describe him as a boy in a man’s body, given to violent impulses and outbursts. State officials concluded last year that he belongs in a secure therapeutic treatment center, not a prison. They arranged for just such a placement, at a facility in Florida, and a judge signed on to that plan.

But a prosecutor in Stafford County, Eric Olsen, has pressed ahead to keep Mr. Latson in prison rather than at an equally secure facility where he could receive appropriate treatment. Last spring he brought a fresh assault charge after Mr. Latson punched a prison guard — the sort of incident that is sometimes treated as a disciplinary matter in prison, not a new criminal offense.

The effect has been to prolong a toxic cycle of incarceration, violent outbursts and criminal charges. All this for a young man whose problems would be better managed outside the prison system at a secure treatment facility.

No one is suggesting Mr. Latson should go free. But it seems clear that punishment — he has been segregated for long periods from other inmates, deprived of TV, radio, books and magazines and, at various times, Tasered (after punching the guard) and straight-jacketed into a chair — is doing no good. Since his arrest in 2010, Mr. Latson has cycled through 10 or so facilities in Virginia, including jails, prisons, group homes and psychiatric hospitals. He has had recurrent suicidal urges and has lost 40 pounds from an already-lean frame.

Yet as long as Mr. Latson faces pending charges, he cannot be transferred to the treatment facility in Florida.

Given Mr. Olsen’s insistence on further criminal charges, it appears that this senseless cycle can be broken at this point only by a guilty plea or conviction at a new trial for Mr. Latson, which is scheduled for next month. Once that happens, the judge could see that Mr. Latson is moved to the treatment facility after serving a mandatory minimum sentence in Virginia, or Gov. Terry McAuliffe (D) could immediately grant a pardon conditioned on Mr. Latson’s transfer to the facility in Florida. It’s not too late for Virginia to get its act together and recognize the distinction between disability and criminality.

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NYT: Separated From Brother, Left to Toil Far From Home

NEWBERRY, S.C. — A shabby bunkhouse sits just beyond the shadows of this small city’s colossal Kraft meatpacking plant. Inside live a few older men with nowhere else to go, and several younger men who pay to throw down a mattress.

There is also Leon Jones.

Mr. Jones, 64, has an intellectual disability and a swollen right hand that aches from 40 years of hanging live turkeys on shackles that swing them to their slaughter. His wallet contains no photos or identification, as if, officially, he does not exist.

And yet he is more than just another anonymous grunt in a meat factory. Mr. Jones may be the last working member of the so-called Henry’s Boys — men recruited from Texas institutions decades ago to eviscerate turkeys, only to wind up living in virtual servitude, without many basic rights.

That seemed to be the end to an outrageous but isolated Iowa story: men abused, rescued and reintegrated into the community. But a few lingering clues suggested that at least one other Henry’s “boy” was out there: a Leon Jones, living beside a South Carolina turkey plant.

So, on a recent autumn morning, I knocked on the door of this bunkhouse, sitting beside a mobile home with its door open in abandonment, not welcome.

“Hi,” said Leon Jones.

Tall and with an easy smile, Mr. Jones has been working turkey ever since he left a state institution in 1969. For decades, he hung live birds from shackles; now he works an evening shift, sweeping up and disposing of turkeys that arrive by truck already dead. D.O.A.s., they are called. Continue reading NYT: Separated From Brother, Left to Toil Far From Home

WPOST: Parents don’t cause autism in their kids: stop blaming them for it

Since the condition was first recognized in the 1940s, parents have been and felt blamed for their children’s autism. Today, most people no longer believe this, but a lingering doubt continues to niggle many parents.

Autism was first identified in the era of psychoanalysis, when professionals looked closely at relationships to explain disability and mental illness. Childhood “autistic withdrawal” was thought to be an emotional and relational problem.

Parents were blamed for their children’s autism because psychoanalysts thought cold, detached parenting must be the cause of their extreme withdrawal from the social world. Some parents were seen to interact with their children in ways that were interpreted as demanding and emotionally distant, rather than supportive and warm.

But the predominant psychoanalytic view has gradually been replaced with a biomedical approach to understanding autism.

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Two sides of disability housing debate

The debate that divides Delaware’s disability community, especially in matters of housing, has plenty of sharp edges.

Those edges have come into plain view since the federal agency that decides how to steer taxpayer support for disability services has changed the rule on how it will fund home- and community-based services.

The U.S. Center for Medicare and Medicaid Services (CMS) is increasingly steering money away from anything that looks or acts like an institution, like nursing homes, hospitals, treatment centers, and toward homes and services in community settings, with all plans centered around the persons with the disabilities.

The legal engines behind the shift are the same that have prompted systemic reforms in Delaware’s mental-health system – the 1990 Americans with Disabilities Act and the 1999 Supreme Court ruling known as Olmstead that said people with disabilities must be able to live in the most integrated setting appropriate for their needs.

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Supreme Court To Weigh Police Obligations Under ADA

The U.S. Supreme Court agreed last week to hear San Francisco’s appeal of a ruling allowing a mentally ill, knife-wielding woman to sue police for shooting her, a case that could set standards for police treatment of people with disabilities.

The Ninth U.S. Circuit Court of Appeals in San Francisco ruled in February that a jury ought to decide whether two officers should have waited for backup rather than charging into Teresa Sheehan’s room and shooting her when she lunged at them. The 2-1 ruling reinstated Sheehan’s damage suit, which a federal judge had dismissed.

The nation’s high court granted review of the case last Tuesday and will schedule a hearing for a ruling due by the end of June.

The central issue is how the Americans with Disabilities Act, which requires government agencies to make reasonable accommodations for those with disabilities, applies to police conduct toward a person with mental illness who may be violent.

“Police officers deserve clarity concerning their obligations under federal law, and public safety demands it,” San Francisco City Attorney Dennis Herrera, whose office represents the officers, said. “We hope the high court reverses the Ninth Circuit’s mistaken decision and restores reasonableness to this area of the law.”

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