Rachel Kenyon

Rachel Kenyon, the autism mom whose appeal to Rep. John Larson (D-CT) led to the TRICARE amendment, is the American Military Families Autism Support person of the year:

The Shooting: Reactions Continue

The purported link between ASD and the tragedy in Newtown keeps inspiring pushback.

Connecticut's medical examiner has asked scientists to study Lanza's DNA even though there is little reason to believe it will yield useful information.  Business Insider reports:

So far, the strongest evidence that genetics play a role in violent behavior comes out of research on MAOA, a gene that produces a substance called monoamine oxidase. Studies from the early '90s showed that abused children with certain variations of this gene had problems regulating their aggressive impulses. But University of Pennsylvania criminologist Adrian Raine questions how crucial MAOA is in determining who actually becomes violent. University of California San Francisco geneticist Robert Nussbaum also worries about the potential for genetic discrimination:

It’s a shot in the dark that’s unlikely to show anything. If they find something associated with autism, I’m afraid that it might have the effect of stigmatizing autistic people. I can see a whole morass coming out of this

.Richard Farley writes at The Daily Beast that the linkage could hamper efforts to secure employment for people on the spectrum:

“Shooter Reportedly Had Autism.” As soon as it scrolled beneath the “Breaking News” banner on television, I knew our work had just gotten quite a bit harder. At Birch Family Services, where I serve on the board of directors, we have spent the better part of the last year trying to develop partnerships with financial services companies and others to employ—even for no pay—higher-functioning young people with autism spectrum disorders (ASDs), including Asperger’s syndrome (AS). It is, even in the best of times, a tough sell, and even before the Newtown shooting, these were not the best of times. Financial firms are downsizing, and employees with ASDs have special needs. Usually these needs are not much more than tolerance and understanding of social deficits that often make their interactions with us a bit odd and uncomfortable until we get familiar with them. “Is he dangerous?” was not a question we had addressed in the PowerPoint slide deck we pitch employers with.

Jo Ashline writes at The Orange County Register:

This is my son Andrew. He loves the ocean, bounce houses, garbage trucks and his brother Ian. He's been known to say "Yay," "Woohoo," and "Whee" in the same sentence. He's taught me more about life and love than I ever thought possible. This is autism.

This is the first time I'm truly afraid for him.

Afraid of what may happen to my son with autism at the hands of a stranger; a stranger who has chosen to buy into the media-fueled misinformation that individuals diagnosed with an Autism Spectrum Disorder are dangerous and capable of horrendous acts of terror and violence.

 I have felt a palpable shift in the air toward people with autism on the heels of the tragic events in Newtown – especially since news reports began to surface irresponsibly linking the shooter's possible Asperger's diagnosis with the horrendous acts he committed that fateful day.

Unfortunately, many people choose to let the media do the thinking for them, and this means a lot of misguided individuals will now consider my son – and others like him – as a threat to their safety.

From The Stamford Advocate:

Andrea Leonardi, director of special education and pupil services in Fairfield, also worries about the fallout. She said, though her district's major goal in light of the shooting has been ensuring the safety of students, she's also been concerned about the negative image being portrayed of those with special needs.

"We're concerned about students with Asperger's who might be thinking `What does this mean about me?' " Leonardi said. 

From The Maine Sunday Telegram:

Peggy Schick of Topsham was furious when she heard early news reports describing the Connecticut school shooter as having Asperger's syndrome.

"It made me sick as soon as I heard it," said Schick, whose 16-year-old son was diagnosed with Asperger's, a mild form of autism. "People who aren't informed about autism are thinking, 'Oh! That's it! That's why this happened.' (But) it's like saying 'He was tall,' or 'He had red hair.' It's an irresponsible, uninformed response.

...
 Schick said she worries that her son will take away the wrong message from the shooting stories.

"It makes me worry that he's going to think that he's more prone to violence," Schick said. "He has enough to contend with, and now he has this to contend with?"

Ohio Lawsuit on Early Intervention

AP reports:

The parents of an autistic toddler are suing the state Department of Health and others, alleging denial of federally mandated treatment. The case could affect how other autistic children are cared for in the state.

The lawsuit, filed last week in federal court in Cincinnati, accuses the state of discriminating against children with autism and their parents by failing to provide a type of intensive treatment known as applied behavioral analysis.

The lawsuit was filed by Robert and Holly Young, of Williamsburg, about 25 miles east of Cincinnati. The Youngs’ 2-year-old son, Roman, was diagnosed with moderate to severe autism a year and a half ago.

“It’s been a living nightmare,” said Holly Young, a Miami Township police officer. “It’s heart-wrenching to know what you need to give your son and you can’t provide it, and no one will help. And the people who are supposed to help seem to be turning their backs.”

Under the Individuals with Disabilities [Education] Act, states are required to provide early-intervention services for children with autism, a developmental disorder characterized by difficulties communicating, emotional detachment and excessively rigid or repetitive behavior, among other symptoms. States get federal money to provide the treatment, with the goal of turning children with autism into self-sufficient adults who won’t have to depend on public resources.

The Cincinnati Enquirer reports:

Ohio Gov. John Kasich addressed the importance of early intervention in autism cases Friday when he said it soon will be required in state employee health insurance plans, private insurance plans and insurance sold through the upcoming federal insurance exchanges. 

"When we have the chance to do the right thing, we better do it," Kasich said. "Helping kids with autism get the services they need, and helping their parents get the financial lifeline of insurance coverage, that's something I support."

Kasich's plan, however, would not make autism services mandatory until 2014, which Ganulin said is too late to get Roman the immediate help he needs.

He said the federal lawsuit is an attempt to get help now, while the treatment still has the best chance to do the most good. Judge Michael Barrett will hear arguments Jan. 2 about whether he should require the state to take action.

The lawsuit says the state's handling of Roman's case violates his constitutional rights and several federal laws covering the care and treatment of people with disabilities.

Young said she went to court because she was out of options. She said she's seen first-hand what intensive therapy can do for her son, and she knows he's suffering without it.
"I can't afford to give him what he needs," she said. "It's excruciating for me.

Abuse and Death in Southern California

As many posts have shown, people on the spectrum can be vulnerable to abuse by those who should be caring for them. In San Diego, KNSD reports:

The mother of a severely autistic man gave an emotional testimony Thursday at a hearing in Vista for two caregivers accused of abusing her son.

Police say 50-year-old Michael Garritson and 27-year-old Matthew McDuffie were supposed to be caring for 23-year-old Jamie Oakley, a man with severe autism who can't verbally communicate, has to wear a diaper and tends to injure himself when he's distressed.

Kim Oakley said the caregivers were well aware of the fact that a camera was in her son's room and that she installed a motion operated camera before going on an overseas trip that spanned several weeks.
...
Oakley says the video shows both McDuffy and Garritson kneeing and hitting him, twisting his arms, and poking him in the eye to the point where it became infected.
...
A judge has yet to decide if enough evidence was presented for the defendants to stand trial. Both defendants have pleaded not guilty to their charges.

Sometimes, family members murder ASD children.  In San Diego, KGTV reports:

A woman who drowned her 4-year-old autistic son in a bathtub, then drove his lifeless body to a police substation where she admitted the crime, pleaded guilty Thursday to second-degree murder.

Patricia Corby, 37, sobbed as she admitted killing her son, Daniel, last March 31.
She will be sentenced to 15 years to life in prison on Jan. 28.

Popular Culture and the Spectrum

Previous posts have discussed depictions of ASD in television, movies, and novels.  The Canadian Press reports:

... Autism Speaks executive vice-president of programs and services Peter Bell emphasizes that autism is a spectrum disorder that takes many distinct forms. At one end, there are some highly functioning, independent people who can resemble those being depicted on TV. At the other end, there are people with much more significant challenges, some of whom need 'round-the-clock supervision. 

Bell points out that roughly 40 to 50 per cent of the autistic population has communication challenges so significant many are largely non-verbal, and that population is hardly represented on TV at all. ("Touch" casts Toronto's Kiefer Sutherland as the father to a mute son but doesn't diagnose the child). 

"It does run the risk of stereotyping what autism might look like," said Bell, an avowed "Parenthood" fan who even had a cameo on the show. 

"Because I think for the vast majority of people who live with autism, they do have very significant challenges that probably wouldn't play well on the screen."

Tom Angleberger is author of the Origami Yoda  books, a wonderful series of novels for older children.  In an interview with Monica Friedman, Angleberger says that he is on the spectrum, as is the central character of the books, Dwight Tharp.

Tom Angleberger: In many ways I feel like the kids that read the book are understanding Dwight, even if they don’t realize exactly what his condition is. In fact, a lot of kids identify with Dwight, rather than Tommy, which really pleases me.

It is a bit frustrating when a reviewer thinks the book was fluff, when in fact it is my heart and mind laid out for all to see. (But maybe my heart and mind are fluffy.) 

MF: Thirty years ago, there was no such thing as ASD: a kid was either too “special” for mainstream or else just weird. How does an Asperger’s diagnosis change things for weird kids like Dwight? How would you project his long-term prognosis? 

TA: Well, Dwight has NOT been diagnosed in the story. Not yet, at least. I know that he’s an Aspie, just like I know I am. But neither of us has been officially diagnosed.

Long-term...Dwight is awesome and will be just fine...unless Harvey and Darth Paper foul things up.

Autism Science Digest

Previous posts have discussed alternative medicine and organizations that support it. At Left Brain/Right Brain, Matt Carey writes:

Autism Science Digest was an effort by AutismOne to publish their take on autism science in a magazine format for a general audience. AutismOne is best known for their annual parent convention which focused largely on alternative medicine and vaccine causation.
...
That all said, while perusing the AutismOne website I noted that the cover for their “Autism Science Digest” hadn’t changed since my last visit. That was some time ago. The cover informs readers about the then upcoming 2012 AutismOne convention (last April), so my interest was piqued and I checked the page for the “Digest” and found this announcement: Autism Science Digest is temporarily unavailable. 

One is left wondering how “temporary” temporary is in this case. Autism Science Digest was launched in August 2011 so the lifespan (should temporary=permanent) seems a bit short.

Reverberations of the Shooting

In Hanover, PA, The Evening Sun reports:

Days after the Connecticut shooting, Jami Gladfelter said, a stranger approached her friend and asked how she felt raising a mass murderer 

he mom was wearing an autism ribbon, a multicolored pattern of puzzle pieces, that aims to raise awareness of the developmental disorders on the spectrum. 

...

Glatfelter, who has a 12-year-old son with autism, said many people don't understand the disorder and so stating that Lanza had Asperger's only creates more misconceptions.

"You're sort of pigeonholing this population, and you don't know anything about them," the Shrewsbury resident said.

The San Jose Mercury News reports;

 Like millions of people, Paul Bondonno searched in vain for an explanation for the deadly shooting at Sandy Hook Elementary School. But when early reports noted the gunman had Asperger's syndrome, the 34-year-old bolted into hyper-driven self-defense, and he hasn't stopped since. 

 "We don't want Adam Lanza to be our poster boy," Bondonno said at the Coffee Society in Campbell.  

The cafe is usually busy on weekends, but a pelting rain Sunday morning kept the crowd and noise down, a perfect setting for separating the facts of a mysterious disorder from the debate over guns, massacres and mental illness. A 13-year-old girl with Asperger's, Puja Uppalapati, and her father, joined the conversation as well.  

"It irritated me," Puja said about the initial Lanza-Asperger's connection. "I was like, why are you saying this? Is this what people will think of us?"

What might also irritate self-advocates is the online headline of the story:

Asperger's sufferers fear Adam Lanza will become their poster boy

Do not blame the reporter:  the word sufferers does not appear in the body of the story.  Journalists typically do not write their own headlines. Others on the newspaper staff do so to meet space requirements.

Harvard and the Limits of the Massachusetts Mandate

Previous posts have discussed the limits of autism mandates, noting that they do not apply to self-funded plans, such as Harvard's.  The Boston Globe reports:

It’s been nearly two years since Massachusetts passed one of the strongest laws in the nation mandating that insurers provide coverage for the diagnosis and treatment of autism, without any annual or lifetime limits on the amount of coverage. Yet some of the state’s biggest employers — including Boston University and Harvard — don’t provide coverage for therapeutic services that can cost families tens of thousands of dollars every year 

They don’t have to under the state’s ARICA law because they’re self-funded plans that are regulated by federal law and not subject to state law. The federal government added autism coverage to its benefits package for federal employees last June. 

Some Boston-area companies with self-funded plans such as Partners HealthCare, Tufts University, Iron Mountain, the Lahey Clinic, State Street Corporation, and Ocean Spray have opted to include autism coverage in their health plans. Others, though, seem to be dragging their heels. 

“Places like Harvard and BU don’t provide coverage for their employees, but they were part of the [Autism] Consortium that testified in support of the state legislation mandating coverage,” said Judith Ursitti, director of state government affairs at Autism Speaks, a nonprofit advocacy and research group. “It’s ironic hypocrisy.”

The Shooting and the Media

At On the Media, Bob Garfield talks with the Columbia Journalism Review's Curtis Brainard about the Connecticut shooting and the perils of  inaccurate coverage linking violence to the autism spectrum:


 

At CNN, Sarah Darer Littman writes:

When my son was diagnosed at age 5, I had many feelings of my own to sort out, a process made infinitely more difficult by others rushing to judgment. Like that 30-minute, long-distance haranguing from a member of my ex-husband's family asking me why I was "damaging" my child by "labeling" him. Imagine how much more reluctant families will be to accept a diagnosis now if there is a link in their minds with being a potential mass murderer -- even when there is no evidence whatsoever this is the case.

"We're very concerned about families feeling stigmatized and being afraid to seek services for fear that their child will be seen as a possible 'monster,'" said Sara Reed, director of advocacy and family services for an autism resource center in Connecticut. "We've done so much work in the last few years trying to reduce stigma and isolation -- to help families get the support and services that they need and deserve. It's difficult enough to raise a child with a disability. We don't need misinformation and community 'rush to judgment' to make it worse."

Journalists, please be responsible. Don't just roll out the celebrity doctors. World-renowned autism expert Dr. Fred Volkmar of the Yale Child Study Center is right here in New Haven. Your shoddy work impacts our children's lives.

Meanwhile, we parents will continue to explain to our kids, who have already grown up trying to overcome feelings of isolation and difference, that what Lanza did has no more to do with them than if he were diabetic or left handed -- and I'll admire and love my son more every day for teaching me to think out of the box.

Deanna Pan writes at Mother Jones:

"We are a community that faces tremendous stigma and prejudice, and unfortunately when this happens, the mainstream media presents stereotypes and inaccurate information about autism and disability that only make that stigma and prejudice worse," says Ari Ne'eman, who is the president of the Autistic Self Advocacy Network and himself autistic.
...
"We want to hunt for explanations. We want reasons for horrible things that happen," saysSteve Silberman, a Wired reporter who's currently writing a book about autism and neurodiversity. "The problem is that people tend to go for these sort of pre-packaged, stereotypical explanations …and that's one way we make people who commit these acts seem not like us…and somehow less than human."

This shoddy reporting, particularly from influential and far-reaching news outlets, has real consequences in shaping the public’s perception of autism and other disabilities, Ne'eman explains.

"We're like anyone else. We're people who apply for jobs, look for places to live, apply to colleges. We're generally looking to be included in society and when there is a myth out there that we're people you have to be afraid of, that has a practical impact," he says. "We talk to a lot of people, for example, who are discriminated against in the workplace after they disclose their diagnosis."

TRICARE in the Conference Report

Previous posts have described the progress of TRICARE legislation in Congress. Autism Speaks provides an update on the defense authorization conference report:

Both the House and Senate had approved bipartisan amendments to the new defense authorization bill requiring coverage for military retirees, in addition to active duty members, and provided for recommended levels of care consistent with best practices. The Senate version went further by incorporating the Coast Guard, the National Oceanic and Atmospheric Administration and the U.S. Public Health Service.

When the House and Senate met in conference committee to reconcile their two bills into a final version, the members noted their awareness of ongoing litigation in which the U.S. District Court ordered TRICARE to provide ABA benefits to all service members as a medical treatment.

“The conferees understand that the plaintiffs and DOD have each submitted motions to reconsider the court order,” the conference committee reported. “The conferees have provided DOD this one-year authority in order to allow DOD to assess such coverage independent from litigation proceedings."

The one-year pilot program is to start within 90 days of enactment of the new DoD authorization bill. Within 270 days, DoD will then be required to report to Congress on costs and any recommended legislative remedies.

At Time, Jeremy Hilton is skeptical:

For those who don’t know, anytime the Defense Department is told to conduct a “pilot program” or to “study” an issue, the results will most likely not be in the interest of anyone but the Pentagon. The conferees cited an ongoing class-action lawsuit, seemingly as one of their reasons for wanting to put the pilot program in place (see page 123 of the conference report).

Stuff That Doesn't Work

Bloomberg Business Week reports:

April Hauge, a nurse practitioner in Weimar, California, spent $500 on a genetic test for her autistic son in 2009 that led to purchasing thousands of dollars in vitamins and supplements. Impressed with the results, she’s now selling advice on the approach to others.

There’s just one problem: the DNA tests and related treatments have scant backing from science and U.S. government officials. They’re untested, unproven, and may constitute “health fraud,” doctors, regulators and concerned parents said.

For alternative-medicine providers in general, the genetic tests are nothing but a “marketing tool” to sell unproven treatments, said James Laidler, a retired physician and adjunct professor at Portland State University whose 19-year-old autistic son has tried alternative therapies.

“You always hear the testimonials from the people who got better, not the people who stayed the same or got worse,” Laidler said. “They don’t want to hear somebody saying this is snake oil.”

Chelation doesn't work,either. Reuters reports on a study mentioned in a previous post:

Chelation gained traction as an alternative treatment for autism due to a theory that mercury poisoning might play a role in the developmental disorder. However, evidence hasn't supported that idea and it's been essentially discarded in the scientific community, researchers said.

The procedure also carries safety concerns, including risks of kidney damage and gastrointestinal problems.

Lead researcher Tonya Davis from Baylor University in Waco, Texas, said the study team's goal was not to tell parents which treatments they should or shouldn't seek for their children.

...

 Davis and her colleagues found five studies that tested the effects of chelation in kids with autism. Those studies each had between one and 41 children, from age three to 14.

Researchers had given the kids chelation therapy - sometimes along with vitamin supplements or other treatments - between one and 12 times a week for up to seven months. They used tests and questionnaires or anecdotal reports from parents to see how symptoms changed over time.

The study with only one child, a four-year-old boy, found chelation had positive effects on autism symptoms based on a parent report. The other four studies all showed mixed results, with some kids improving on some symptom measures.

However, none of the studies provided any certainty that those benefits were due to chelation itself, and not another treatment or just kids getting older, the researchers wrote in the journal Research in Autism Spectrum Disorders.

Insurance in Ohio

A release from Ohio Governor John Kasich:

Ohio children with autism and their families now will have access to needed services thanks to policy changes Governor John R. Kasich announced today for state employee health insurance, health insurance sold in the private market, and health insurance sold through the upcoming federally managed health insurance exchange.

Ohio already provides access to autism-related services to approximately 40 percent of Ohio’s children through its Medicaid program.

The General Assembly has been debating legislation that would make autism services a mandated benefit in Ohio’s private health insurance market, and Kasich made his decision to expand the availability of services for children with autism only after close consultation with legislative leaders and members of both chambers.

“When we have the chance to do the right thing, we better do it because we don’t want to live life with any regrets. We’re doing the right thing today. Helping kids with autism get the services they need, and helping their parents get the financial lifeline of insurance coverage, that’s something I support—for state employees and other families as well. With early intervention, kids with autism do better at school, find employment, and become more independent, connected adults in our communities,” said Kasich. “I continue to be inspired by the courage of so many committed families who work and fight to give their kids the best possible chance at success. We’re not going to turn our backs on them. In fact, we’re extending them our hands and are going to bring them along.”

Ohio will make autism services available to state employees and their 39,900 covered children after approval by the five state employee unions. Coverage details will be negotiated with the unions. Additionally, autism services will be defined as part of the “essential health benefit” package that federal law requires in every state beginning in 2014. Ohio’s coverage levels will balance the call for a robust, meaningful benefit package with the reality of job-creators’ economic and financial pressures and their need to keep premium costs low.

Additionally, this action helps provide job-creators protection from the uncertainty of possible future federal interference in 2016 when all state health insurance coverage levels will be reviewed and possibly revised. It is widely expected that states with no minimum coverage levels for autism or other habilitative services would be prime targets for federal intervention.

The Shooting: Day Seven

The shooting in Connecticut continues to generate commentary. At YouTube, a person with autism discusses the potential for stigma:



The concern is well-founded as Ariane Zurcher explains at The Huffington Post:

To add another layer of horror to something that is already unspeakable, targeting a group of people and making it about them instead of a lone gunmen is adding more pain and agony to more children's and people's lives. Don't we see that? Can't people see we're making it worse? We aren't ensuring our children will be safe with these beliefs. We aren't making the world a better place with more prejudice, bigotry, false assumptions, and fear. Fear is what drives us to conclude that we are fighting a false enemy. Fear is what compels us to segregate, lock up, institutionalize, condemn and torture. Fear is what causes us to commit acts of violence against those we've deemed violent. And when fear is allowed to fester unchecked it turns into something else.

This page was created by an unknown person. No one stopped them from creating this page on Facebook until it had gone viral and hundreds of thousands of people had seen it. It has since been taken down. I do not know what has come of the person who thought it would be a good idea to create such a page. I made the decision to post it because everyone I know who is autistic is living in tremendous fear. They are worried about leaving their homes, they are fearful of allowing their children outside. This page created by one sick person, represents a prejudice that is steadily growing, a prejudice that must end.

From New England Cable News:




Lisa Goring, Autism Speaks' vice president of family services, appeared on Dec. 17 on WVIT-NBC Hartford/New Haven.Goring to address misconceptions about a linkage between autism spectrum disorders and planned violence:

 

 In Raleigh, NC, WNCN reports:

 

The Shooting: Day Six

CNN reports:

CNN has not been able to independently confirm whether Lanza was diagnosed with autism or Asperger's, a higher-functioning form of autism. Both are developmental disorders, not mental illnesses. [emphasis added]

Many experts say neither Asperger's syndrome nor autism can be blamed for the rampage.
"There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence," the Autism Society said in a statement. "To imply or suggest that some linkage exists is wrong and is harmful to more than 1.5 million law-abiding, nonviolent and wonderful individuals who live with autism each day."

Dr. Max Wiznitzer, a pediatric neurologist and autism expert at Rainbow Babies and Children's Hospital in Cleveland, also said the gunman's actions can't be linked to autism spectrum disorders.

"Aggression and violence in the ASD population is reactive, not preplanned and deliberate," he said.

Bonnie Rochman writes at Time:

Calls and emails to Autism Speaks' hotline are up 130% since Friday's shooting as worried parents wonder how to channel their concern. In an effort to address possible backlash against people who have autism, this week Autism Speaks plans to release formal suggestions for how to educate school leaders, teachers and friends about the characteristics of children with the condition.

"We've had a number of families say their children's classmates have said, 'I hear the shooter has autism, and doesn't your brother or sister have autism?'" says Peter Bell, Autism Speaks' executive vice president for programs and services. "It seems like they're wanting to put the blame squarely on the fact that the shooter may have had autism. This rush to put a label on the situation has caused significant harm already."

...
 In a survey sent Monday to 31,000 parents who are members of MyAutismTeam, a social network that serves as a Facebook for parents who have children with the condition, 30% indicated that they're worried their children will be treated differently by teachers and other students in the aftermath of Sandy Hook.

They're also nervous that bullying -- kids with autism are already disproportionately targeted -- will increase. "To have this association to mass murder pinned to them is like putting another target on their heads," says Christine Pasour, the mother of an 11-year-old son with Asperger's.

Maia Szalavitz writes at The Atlantic:

One of my colleagues, Dr. Bruce Perry, is senior fellow at the Child Trauma Academy and a child psychiatrist who has worked with or consulted on cases involving both children exposed to extreme violence and young perpetrators. He consulted with authorities guiding the response to Columbine.

To be clear, no one can diagnose a patient from afar, and there are too many unknowns in this case to diagnose Lanza. Still, for academic purposes and to the point of accurate mental health discussion and addressing ideas about identifying at-risk individuals, Perry says of the shooter: "My first thought was that he might have had a psychotic break -- and that his odd, disengaged behaviors earlier in life -- reasonably labeled as something like an ASD by some -- might actually have been prodromal psychotic disorder."
...

And as for autism -- if it ultimately turns out to be what Lanza had -- that diagnosis is actually linked with reduced crime risk. People with autism tend to be extremely conscientious, often strictly following moral rules in ways that cause social problems; for example, by avoiding white lies. "From what we do know about ASD, [the shootings] would be pretty atypical," says Perry. "There's no risk in the diagnosis itself," agrees Dr. Harold Bursztajn, co-founder of the Program in Psychiatry and the Law at Harvard Medical School, who has reviewed the research.

...

Both the major autism charity, Autism Speaks and the Autistic Self Advocacy Network (ASAN) have issued press releases trying to prevent the Connecticut attacks from leading to increased stigmatization and fear of autistic people, noting the data showing no connection between the diagnosis itself and violence. Fears related to autism, however, remain. "Some popular perceptions are based in our own social anxieties in the face of such tragedy," says Bursztajn, "The quick fix becomes diagnosis instead of analysis."

Another reason many believe that autistic people are at higher risk of committing violent crimes may be a misunderstanding of what is meant by deficits in empathy, which are associated with autism in the public mind. Says Ari Ne'eman, who is autistic and is president of ASAN, "One of the most damaging stereotypes surrounding autistic people is the myth that we lack empathy. In fact, the research literature has confirmed what we've been saying for the longest time: we experience empathy at the same levels as the neurotypical population, even if the outside world doesn't always understand our ways of communicating it."

Prevalence in New Jersey

The Bergen Record reports:

New Jersey's autism rate nearly doubled in four years, according to new research published Monday that expands upon previous national studies.

Of the 8-year-old children in four sample New Jersey counties, one in 57 had autism in 2006, compared with one in 94 just four years earlier, researchers from the University of Medicine and Dentistry of New Jersey found.

The findings represent "the best data we have for knowing the accurate complete prevalence of autism in our region," said Walter Zahorodny, the study's lead author. They were based on an analysis of school and medical records for all children living in Hudson, Essex, Union and Ocean counties who were born in 1998, a total of more than 30,000. The sample provided a good cross-section of New Jersey in terms of ethnicity and social-economic background.
New Jersey's autism rate is among the highest in the nation.

"The question is, where does the trend level off?" Zahorodny said.

From the abstract in Autism:

 High baseline autism spectrum disorder prevalence estimates in New Jersey led to a follow-up surveillance. The objectives were to determine autism spectrum disorder prevalence in the year 2006 in New Jersey and to identify changes in the prevalence of autism spectrum disorder or in the characteristics of the children with autism spectrum disorder, between 2002 and 2006. The cohorts included 30,570 children, born in 1998 and 28,936 children, born in 1994, residing in Essex, Hudson, Union, and Ocean counties, New Jersey. Point prevalence estimates by sex, ethnicity, autism spectrum disorder subtype, and previous autism spectrum disorder diagnosis were determined. For 2006, a total of 533 children with autism spectrum disorder were identified, consistent with prevalence of 17.4 per 1000 (95% confidence interval = 15.9–18.9), indicating a significant increase in the autism spectrum disorder prevalence (p < 0.001), between 2002 (10.6 per 1000) and 2006. The rise in autism spectrum disorder was broad, affecting major demographic groups and subtypes. Boys with autism spectrum disorder outnumbered girls by nearly 5:1. Autism spectrum disorder prevalence was higher among White children than children of other ethnicities. Additional studies are needed to specify the influence of better awareness of autism spectrum disorder prevalence estimates and to identify possible autism spectrum disorder risk factors. More resources are necessary to address the needs of individuals affected by autism spectrum disorder.

The Shooting: Day Five

The Columbia Journalism Review has a brief summary of the bad journalism linking autism to the shootings.  Another egregious example popped up yesterday in The Washington Post

Nancy Lanza, who was 52, was close to [Mark] Tambascio and his family and frequented his restaurant My Place, befriending many regulars. Tambascio said it was his impression that Adam Lanza had Asperger disorder, a form of autism.

There you have it:  a restaurant owner had the "impression" that the shooter had Asperger Syndrome.  This passage from The New York Times explains why such reporting is both sloppy and irresponsible:

“The media’s continued mention of a possible diagnosis of Asperger syndrome implies a connection between that and the heinous crime committed by the shooter,’’ said Lori S. Shery, president of the Asperger Syndrome Education Network, an advocacy group in New Jersey. “They may have just as well said, ‘Adam Lanza, age 20, was reported to have had brown hair.’”

Many parents had a difficult time yesterday, as their children asked questions about the slaughter in Connecticut. Parents of children on the spectrum had an even harder time, as Michelle Cottle reports at The Daily Beast:

For parents like Hillary Toucey, this sort of primal fear is compounded by another, less far-fetched anxiety: What if someone gets it into his or her head that someday my child will become the kind of monster that would storm a school with an assault rifle?

A mother of three, Toucey has two sons who fall on the spectrum of autistic disorders. Her oldest, 12-year-old Jonah, has been diagnosed with Asperger’s syndrome, a “high-functioning” form of autism that received a burst of unfortunate publicity this weekend when it was reported that Sandy Hook gunman Adam Lanza also suffered from the disorder.

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“I sent the kids to school today a little nervous because I know Eli has had meltdowns in the classrooms before,” she says of her 8-year-old, whose disorder is more severe than his brother’s. Teachers without experience dealing with autism are already unsure of how to handle Eli, says Toucey. “Now, what if they think my kid is going to be a serial killer one day?”

The New York Times reports:

“Aggression in autism spectrum disorders is almost never directed to people outside the family or immediate caregivers, is almost never planned, and almost never involves weapons,” said Dr. Catherine Lord, director of the Center for Autism and the Developing Brain at NewYork-Presbyterian hospital. “Each of these aspects of the current case is more common in other populations than autism.”

Dr. Lord said that in an unpublished review of data tracking several hundred adults with autism over at least the past five years, she and fellow researchers had found no use of weapons.

Among more than 1,000 older children and adolescents in that study, only 2 percent were reported by parents to have used an implement aggressively toward a nonfamily member — fewer than in a control group. That finding was repeated in another set of data that she analyzed over the weekend at the request of The New York Times.

But some of the Twitter messages, electronic postings and media reports in the aftermath of the massacre that has horrified the nation have not reflected that characterization of autism.
"Try curing the real disease, Autism, not the N.R.A.,” wrote one individual on Twitter on Sunday night in response to calls for tighter gun control laws

The Brevard Times asks:

 Since it would take the diagnosis of a medical professional to distinguish whether autistic patient would have violent tendencies, should the mental illness gun control law be changed to require that those who have been diagnosed with autism or Asperger's disease obtain a letter from their doctor stating that the person be allowed to purchase a firearm?

It is one thing to change gun laws for everybody.  It is quite another to assert that a class of American citizens should need special permission to own firearms. Since there is no evidence linking autism to gun violence, such a requirement would violate the rights of autistic people under the Fourteenth Amendment.  

The Shooting: Day Four

Autism advocates continue to push back on the story that autism may have had something to do with the tragedy in Connecticut.

Laura Shumaker in The San Francisco Chronicle wasn't going to comment, but "for my son Matthew’s sake, and for the sake of so many individuals with autism, clarification is needed."

• Autism is not a form of mental illness, it is instead a neuro-developmental disorder.
• Studies show that individuals with autism have the propensity for reactive outbursts rather thanplanned violence.
• Former classmates described the suspect as socially awkward, friendless and painfully shy, but “Many significant psychiatric disorders involve social isolation,” said Catherine Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital. Autism, she said, has become a catch-all term to describe anybody who is awkward.
• People with autism are more likely to be victims of violence than perpetrators. Those who are bright often face bullying.
• Some wind up in trouble with the law because they are unaware of social convention, and quirkiness or attempts at being friendly get misinterpreted. This happened just recently with Matthew, who was friending and messaging many many people that he did not know on Facebook and received a warning.

From US News and World Report:

Despite media reports alleging that the gunman involved in the Connecticut school shootings had Asperger's syndrome, experts were quick to assert Sunday that there is no link between the condition -- a mild form of autism -- and violence.

"There really is no evidence that links autism or Asperger's to violence," said Geraldine Dawson, chief science officer at the nonprofit advocacy group Autism Speaks and a professor of psychiatry at the University of North Carolina at Chapel Hill.

More Pushback

Emily Willingham joins the pushback against the linkage between autism and the tragedy in Connecticut:

Empathic ability comes in two forms. One is the social ability to recognize the emotion someone is feeling by following social cues, subtle vocal fluctuations, and other nonverbal communications. Psychopaths, for example, might be quite good at reading people, at applying this cognitive empathy and then possibly exploiting it. Autistic people, on the other hand, generally tend not to be that great at this kind of recognition in non-autistic people. After all, the hallmark of autism is difficulty navigating this territory and registering the meaning of a nonverbal language that is unfamiliar to them. Worth noting, non-autistic people also seem to struggle with reading the nonverbal communication of autistic people. It can also be difficult for autistic people to automatically place themselves situationally in the other person's shoes and intuit the emotion the other person feels, although again, non-autistic people seem to struggle to do this for autistics. Autism does not, however, preclude a person from understanding a clear communication about emotion.

The other form of empathy follows on the recognition of the emotion, whether the message comes through verbally or nonverbally, intuitively or not. That's the form in which you not only can intellectualize the person's emotion but also can internalize and feel what they are feeling, known as emotional empathy. The gap for psychopaths comes in here: They seem to lack this emotional empathy. But whatever deficits autism might carry in terms of recognition, it makes up for in terms of the shared feeling. My experience has been that once an autistic becomes aware of the other person's emotion, the feeling comes without a social construct, naked and in full, unmodulated. Certainly, the expression of their feeling can be more intense. Research shows that people with Asperger's are not that great at cognitive empathy but that their emotional empathy does not differ from people without Asperger's, whereas children with conduct disorder show the reverse pattern.

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Planned, social violence is not a feature of autism. Indeed, autistic people are far more likely to have violence done against them than to do violence to others. No one knows as of this writing what drove the Connecticut shooter to kill 20 children and 7 adults, point blank, although obvious candidates are rage, hate, a huge grudge against humanity, and some triggering event. But if he turns out to have been someone on the spectrum, I'd like to remind everyone that autism is not an explanatory factor in his actions. And that autistic people like my son are fully, fully capable of empathizing with those who were the target of them.

At The Atlantic, Gabriella Rosen Kellerman, MD, writes:

Autism is a disorder characterized by difficulty with social interaction and communication, as well as repetitive and restrictive behaviors and interests. It is currently estimated to affect 1 in 88 children born in America. Diagnosis is usually made between ages 2 and 6. While children with severe autism can have violent outbursts, there is no known link between autism and premeditated violence.

The Shooting: Day Three

Previous posts have described sketchy media reports linking the Connecticut shooter to autism. (See Joe Scarborough's similar speculation about the Colorado shooter.) Alan Zarembo writes at The Los Angeles Times:

Among the details to emerge in the aftermath of the Connecticut elementary school massacre was the possibility that the gunman had some form of autism.

Adam Lanza, 20, had a personality disorder or autism, his brother reportedly told police. Former classmates described him as socially awkward, friendless and painfully shy.

While those are all traits of autism, a propensity for premeditated violence is not. Several experts said that at most, autism would have played a tangential role in the mass shooting -- if Lanza had it at all.

“Many significant psychiatric disorders involve social isolation,” said Catherine Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital. Autism, she said, has become a catch-all term to describe anybody who is awkward.

AP reports:

While an official has said that the 20-year-old gunman in the Connecticut school shooting had Asperger’s syndrome, experts say there is no connection between the disorder and violence.

Asperger’s is a mild form of autism often characterized by social awkwardness.

“There really is no clear association between Asperger’s and violent behavior,” said psychologist Elizabeth Laugeson, an assistant clinical professor at the University of California, Los Angeles.

 Autism organizations are pushing back on the story.

From the Autistic Self-Advocacy Network:

 Recent media reports have suggested that the perpetrator of this violence, Adam Lanza, may have been diagnosed with Asperger’s Syndrome, a diagnosis on the autism spectrum, or with another psychiatric disability. In either event, it is imperative that as we mourn the victims of this horrific tragedy that commentators and the media avoid drawing inappropriate and unfounded links between autism or other disabilities and violence. Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters.

From The Autism Society:

 There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence.   To imply or suggest that some linkage exists is wrong and is harmful to more than 1.5 million law abiding, non-violent  and wonderful individuals who live with autism each day.  Stereotyping an entire group of individuals because of the actions of one individual is wrong and unacceptable.

From Autism Speaks:

Our hearts go out to the families and town of Newtown, Connecticut in the wake of this heartbreaking event. Several media outlets are reporting that the shooter might have had an autism spectrum disorder. Some have also inaccurately reported that there is a linkage between autism and planned violence. We ask that blame not be placed on people with disabilities or disorders in the midst of these types of tragedies and that everyone keep the families of Newtown in their prayers.

More on the Shooting

The New York Times reports on the Connecticut shooter's high school classmates:

Several said in separate interviews that it was their understanding that he had a developmental disorder. They said they had been told that the disorder was Asperger’s syndrome, which is considered a high functioning form of autism.

Told?  Told by whom?  If officials at the school had made such a disclosure, they violated IEP confidentiality.  Or is this "understanding" just another case of unfounded  speculation?  The news media should be careful about associating autism and mass murder.

Tommy Christopher writes at Mediaite:

And so it begins. Following a sketchy report that Connecticut school shooter Adam Lanza may have had autism or Asperger’s Syndrome, CNN’s Piers Morgan Tonight booked a so-called expert named Dr. Xavier Amador to come on the air and slur people with autism. Dr. Amador, a media-friendly psychologist (a specialty that does not deal with autism) told Piers Morgan that “a symptom of autism” is that “something’s missing in the brain, a capacity for empathy, for social connection, which leaves the person suffering from this condition prone to serious depression and anxiety.”
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That’s right, Dr. Amador doesn’t know enough, because people with autism, people with Asperger’s, aren’t “missing something in the brain,” nor do they lack a “capacity for empathy” or “social connection,” and there has been grossly insufficient study of Autism Spectrum Disorders’ (ASD) relationship with anxiety disorders. People with ASDs are as capable of empathy as neuro-typical people, if not more, but can have difficulty perceiving nonverbal social cues, which can make people who don’t know any better think they lack empathy. A TV expert speaking about autism should know better, and should also know that people constantly accusing them of being mass murderers is likely to cause more anxiety than the autism. Ditto the fact that developmentally disabled people are much more likely to be the victims of violence than the perpetrators of it.

The Shooting

There are press reports that suspect in the Connecticut massacre may have been autistic.  Caution is in order.

1.  First reports are often wrong:  Five years ago, there was similar speculation about the Virginia Tech shooter, and it turned out to be false. In the Connecticut incident today, the initial stories even erred about the the suspect's name.  

2.  The reports of the suspect's purported autism appear to be second- or third-hand accounts of what his brother may have told authorities. At this point, we do not know if these reports are true.

3.  Even if the press is quoting the brother accurately, his language seems to be vague.  It is not clear whether he actually knows about a professional diagnosis or whether he is just using the word "autistic" and "Asperger" in an offhand manner.

4.  Finally, if it does turn out that the suspect actually was on the spectrum -- a very big "if" -- it does not follow that autism is associated with violence.  On the contrary, people on the spectrum are often the victims of crime.

License Issue in New York

Previous  posts have discussed licensing as a barrier to entry for behavior therapists. In New York, YNN reports on the latest incident, in New York:


A release from Summit Educational Resources:

Proposed emergency regulations from New York’s Department of Financial Services (DFS) will drastically limit the resources available to families in New York State seeking diagnosis and treatment for their children with autism. 

The regulations, proposed on October 31, the eve of the autism insurance law’s enactment, would require service providers to be New York State licensed psychologists, psychiatrists, or social workers as well as board certified behavior analysts. These DFS regulations exclude hundreds of qualified individuals from providing Applied Behavior Analysis (ABA) services, thereby drastically limiting the resources available to New York families as opposed to expanding them as the law intended.

“The design and intent of the Autism Insurance law was to provide insurance coverage for ABA treatment by certified behavior analysts and there are about 700 in the state,” said Dr. Stephen R. Anderson, Chief Executive Officer of Summit Educational Resources.  This regulation would make only 43 professionals eligible to provide this service state-wide,” Dr. Anderson said.

“Many of these individuals may not have experience with individuals with autism and therefore the number of qualified providers may be even lower. This regulation effectively nullifies the insurance law, since essentially no one is qualified to provide ABA in New York,” Dr. Anderson explained.  “The regulation will have a serious detrimental effect on families of children with autism by essentially eliminating their access to services protected under the law,” he added.

The autism insurance law covers diagnosis and ABA treatment for those with autism spectrum disorder, a developmental disability that affects communication, reasoning, and social skills.  ABA is an evidence-based approach that has been shown in research studies to be the most effective treatment for individuals with autism.  “The approach breaks complex skills into small steps to improve skills and to address behavioral and  medical concerns related to eating, feeding, sleeping, toileting and challenging behaviors,” explained Dr. Vicki Knapp, Chief Clinical Director of Summit and President of the New York State Association for Behavior Analysis.

Several other states have allowed Behavior Analysts to provide and/or supervise ABA services for persons with ASD under similar laws.  “Currently, there are nearly 750 Board Certified Behavior Analysts in New York State,” Dr. Knapp said. “The Behavior Analyst Certification Board has high standards for certification (coursework, supervision, and a certification exam) and this credential is accredited by the National Commission for Certifying Agencies (NCCA),” she added. “We are confident that our community will succeed in lobbying strongly enough to rectify this situation.”

As of October 2012, according to the New York State Education Department, there were 22,805 children between the ages of 4 and 21 that were identified with autism, a number that does not include preschoolers or adults with autism and  has certainly increased as the incidence of autism has skyrocketed.  The Centers for Disease Control reported in April 2012 that autism affects 1 in every 88 children, a significant increase over its previous report in 2009 that indicated that 1 in every 110 children were affected.

UN Resolution

A release from Autism Speaks:

Today the United Nations General Assembly (UNGA) unanimously passed a new resolution calling on governments to take urgent action to improve access to long-term healthcare, education, training and intervention programs for persons with autism spectrum disorders (ASD), developmental disorders (DD), and associated disabilities, at local, national and international levels. The resolution was drafted and tabled by the Mission of Bangladesh with the support of Autism Speaks, the world’s leading autism science and advocacy organization, and more than 70 co-sponsors.

The new resolution will enable UN Secretary-General Ban Ki-moon to bring ASD, DD, and other disabilities to the attention of all member states and UN organizations in advance of the High Level Meeting of the General Assembly on the realization of the Millennium Development Goals (MDGs) and other internationally agreed development goals for persons with disabilities that will take place in September 2013.

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During the discussion of the resolution at the UN General Assembly, several of the co-sponsors spoke about advances in government support and service provision for individuals and families affected by ASD in their home countries. The representative from Israel said that their country is currently introducing a law that will provide individuals with ASD lifelong government support. Saudi Arabia spoke of the need to recognize the special talents of those with ASD and of the success of a new organization called The Charitable Society for Autism Families in Saudi Arabia, an effort led by Princess Samira bint Abdullah Al-Farhan. Indonesia highlighted the importance of capacity-building as well as support for not only affected individuals, but also their families.

From the General Assembly:

 [The] Assembly addressed the socio-economic needs related to autism and developmental disorders by adopting a relevant resolution without a vote.  By the text, the Assembly called on all States to enable persons with autism, developmental disorders and associated disabilities to learn life and social development skills to facilitate their full and equal participation in education and as members of the community.

Speaking before action on the text, the representative of Bangladesh said that Mozart, Beethoven, Albert Einstein, Bob Dylan, Bill Gates and Stephen Hawking, misunderstood as children, had been on the autism or Asperger’s spectrum.  Yet, all of those icons had achieved great success in later life.  Their minds worked differently than a traditional learner, but because they had been able to find their places in the society, they had engaged their strengths and they had enriched the world.  “We have a whole population whose talents go undiscovered and whose gifts go unshared, with their place in the world having only been carved out in niches,” he said.

He went on to urge all Member States to cosponsor the resolution, saying:  “We urgently need to remove the stigma that is associated with disabilities in general and neuro-developmental disorders specifically, and empower parents so that they can be partners in the treatment process and informed advocates for their loved ones.”

The delegate of the United States said “autism is no longer hidden”, noting that, as recently as the 1990s, researchers had believed that the condition was rare.  A recent big step forward in the United States had developed the new Affordable Care Act, which required insurance companies to cover autism screenings, and disallowed companies from denying care because of “existing preconditions”.

A Step Toward Prenatal Testing?

Time reports:

Would you want to know if your unborn baby is at risk of autism?

Researchers wrapping up a 4,406-patient study say that a new genetic test that analyzes fetal DNA in more detail than current prenatal tests, can detect additional abnormalities, including those associated with autism and other intellectual disabilities, making them a potentially more accurate way of predicting disease risk.

Chromosomal microarray analysis, which compares specific regions of an unborn baby’s DNA to that of a normal genome, should be offered to all expectant mothers, say researchers at Columbia University who led the study. The current method of prenatal testing for genetic diseases, known as karyotyping, involves a cruder analysis of DNA as it is packaged in chromosomes in fetal cells. Karyotyping can identify broad abnormalities such as changes in the number of chromosomes or structural aberrations; it is used to diagnose conditions such as Down syndrome, for example, which results from an extra chromosome. Microarray testing, which uses the same invasive methods as karyotyping — by sampling the chorionic villus cells from the placenta, or amniocentesis, which extracts cells and fetal DNA from amniotic fluid—can do that and more, says Dr. Ronald Wapner, director of reproductive genetics at Columbia University Medical Center and lead author of the study published in the New England Journal of Medicine.

“Karyotyping has been the gold standard for 60 years,” he says. “Microarray identifies everything a karyotype identifies and more, so why wouldn’t people want more information?

The article merely describes current research and does not suggest that prenatal testing is in the near future.  But the possibility of such a test, of course, could raise the issue of abortion.

Older Parenthood and Autism

Previous posts have discussed the association between parental age and ASD. Judith Shulevitz writes at The New Republic:

We have been conditioned to think of reproductive age as a female-only concern, but it isn’t. For decades, neonatologists have known about birth defects linked to older fathers: dwarfism, Apert syndrome (a bone disorder that may result in an elongated head), Marfan syndrome (a disorder of the connective tissue that results in weirdly tall, skinny bodies), and cleft palates. But the associations between parental age and birth defects were largely speculative until this year, when researchers in Iceland, using radically more powerful ways of looking at genomes, established that men pass on more de novo—that is, non-inherited and spontaneously occurring—genetic mutations to their children as they get older. In the scientists’ study, published in Nature, they concluded that the number of genetic mutations that can be acquired from a father increases by two every year of his life, and doubles every 16, so that a 36-year-old man is twice as likely as a 20-year-old to bequeath de novo mutations to his children.

The Nature study ended by saying that the greater number of older dads could help to explain the 78 percent rise in autism cases over the past decade. Researchers have suspected links between autism and parental age for years. One much-cited study from 2006 argued that the risk of bearing an autistic child jumps from six in 10,000 before a man reaches 30 to 32 in 10,000 when he’s 40—a more than fivefold increase. When he reaches 50, it goes up to 52 in 10,000. It should be noted that there are many skeptics when it comes to explaining the increase of autism; one school of thought holds that it’s the result of more doctors making diagnoses, better equipment and information for the doctors to make them with, and a vocal parent lobby that encourages them. But it increasingly looks as if autism cases have risen more than overdiagnosis can account for and that parental age, particularly paternal age, has something to do with that fact.

Not only are older parents more likely to have kids with autism and other neurological conditions, but they are also more likely to die earlier in their children's lives.  The death of a parent is tough for any child, but it's a calamity for a special-needs child.

All these problems will be exacerbated if we aging parents are, in fact, producing a growing subpopulation of children with neurological or other disorders who will require a lifetime of care. Schizophrenia, for instance, usually sets in during a child’s late teens or early twenties. Avi Reichenberg sums up the problem bluntly. “Who is going to take care of that child?” he asked me. “Some seventy-five-year-old demented father?”

This question preys on the mind of every parent whose child suffers a disability, whether that parent is elderly or not. The best answer to it that I’ve ever heard came from a 43-year-old father I met named Patrick Spillman, whose first child, Grace, a four-and-a-half-year-old, has a mild case of cerebral palsy. (Her mother was 46 when Grace was born.) In his last job, Spillman, stocky and blunt, directed FreshDirect’s coffee department. Now, he’s a full-time father and advocate for his daughter. He spends his days taking Grace to doctors and therapists and orthotic-boot-makers, as well as making won’t-take-no-for-an-answer phone calls to state and city agencies that might provide financial or therapeutic assistance. How does he face the prospect of disappearing from her life? A whole lot better than I would. (My lame-joke answer, when my children ask me that question, is that I plan to live forever.) “We’re putting money aside now,” he said. Into a trust, he adds, so that government agencies can’t count it against her when she or a caregiver goes looking for Medicaid or other benefits.