Report on Community Living

From a release earlier this month by the Senate Health, Education, Labor, and Pensions (HELP) Committee: 

[Fourteen] years later, many states are failing to live up to the integration mandate of the Americans with Disabilities Act. The Supreme Court ruled in Olmstead v. L.C. in 1999 that the unnecessary segregation of individuals with disabilities in institutions is a violation of the Americans with Disabilities Act, thus directing states to enable community-based long-term care services for these Americans.

The report, titled “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act,” is the result of requests for information sent by Chairman Harkin to all 50 states on the progress made to transition individuals out of institutions. 

Key findings:

• In the years since the Olmstead decision, nationally there has been a fundamental rebalancing of spending on individuals with disabilities in institutions as compared to spending on home and community based services (HCBS) that allow Americans to be part of their communities. Between 1995 and 2010, states reduced the share of Medicaid spending on institutions, including nursing homes, mental hospitals, and institutions for people with intellectual and developmental disabilities from 79 percent to 50 percent.

• However, only 12 states spent more than 50 percent of Medicaid LTSS dollars on home and community based care by 2010, and the population of working age Americans with disabilities in nursing homes actually increased between 2008 and 2012. This is true even though 38 studies over the past seven years have clearly demonstrated that providing HCBS is more cost-effective than providing services in an institution.

• Widespread inequities in access to HCBS still exist across states. In 2009, the percentage of spending on HCBS LTSS varied from more than 80 percent to less than 20 percent, and 38 states spent less than 50 percent of LTSS costs on HCBS. Hundreds of thousands of people with disabilities remain on waiting lists for community based services.

• Studies show that from 2000 to 2007, nursing home use actually increased among adults age 31 to 65 in 48 states. Current data shows that there are still more than 224,000 individuals younger than 65 in nursing homes—almost 16 percent of the total nursing home population.

• Perceived uncertainty about the potential total cost of providing HCBS to every eligible individual in the state may be preventing states from exercising new federal options for HCBS. Many states have focused more on enrolling people that are currently living in community settings into HCBS programs than on transitioning individuals living in institutional settings back into the community.

• When individuals are transitioned, it remains unclear whether they are transitioned to the most integrated setting possible or merely to a “less” institutional setting, and each state defines specific settings very differently.

• Many states’ Olmstead implementation efforts have not involved meeting specific benchmarks designed to transition people with all types of disabilities out of institutions and into the most integrated setting consistently in a way that is cost-effective. No clear reporting system for HCBS programs exists to make it possible to analyze and compare how effectively states are meeting the Olmstead mandate.

Case on Special Needs Trusts

Autism Speaks reports on former New York Judge Kristin Booth Glen, who ruled that banks and other special needs trustees must determine the needs of people with disabilities and spend the money to improve their lives.  (Also see Village Voice article.)

The ruling stemmed from a case in which the attorney who had created a discretionary trust for Mark Holman, a severely autistic orphaned teen who was left a multimillion dollar trust fund by his adoptive mother Marie Holman, petitioned to become the teen's guardian in an attempt to fulfill Marie's dying wish. Glen took the attorney as well as co-trustee JP Morgan Chase to task for failing to visit Mark Holman, determine his needs, notify the residential facility in which he lived of the trust, or spend any of Mark's trust funds on improving his life, all while collecting thousands of dollars in commissions.

“The history reveals a severely disabled, vulnerable, institutionalized young man, wholly dependent on Medicaid, unvisited and virtually abandoned, despite a multimillion dollar trust left for his care by his deceased mother,” Glen wrote in her opinion. “It's not sufficient for the trustees to simply safeguard the Mark Trust's assets; instead, the trustees have a duty to Mark to inquire into his condition and to apply trust income to improving it.” In her opinion, Glen described her decision as a “clarion call” for all special needs trustees. “Courts will intervene not only when the trustee behaves recklessly, but also when the trustee fails to exercise judgment altogether,” she wrote.

In an interview with Autism Speaks, Glen elaborates:

The problem is if the trust is for a person with a significant intellectual disability and the person who created the trust, the parent, or whoever, is dead, and the trustee is not acting appropriately, who is going to challenge it? 

....
Two things could happen. One thing that could happen is that banks look at this and say, ‘You know, it's true; either we should put ourselves in a position to do what we need to do for people with special needs or we shouldn't take on these trusts, and if we decide that we're going to do what we need to do, we need to hire people like social workers to monitor these trusts and to make sure that the beneficiaries are getting what they need and that we're spending the money appropriately.'

... 

The other thing that can happen because except by fluke the courts are not going to be involved in this is that there is a new concept called ‘trust protectors.' I don't think we have a statute yet about it in New York; some states do. While you appoint A to be the trustee to manage the money and spend it, you appoint B to make sure A is doing it right. 

For the ruling itself, see:

Matter of JP Morgan Chase Bank N.A. (Marie H.)[*1] Matter of JP Morgan Chase Bank N.A. (Marie H.) 2012 NY Slip Op 22387 Decided on December 31, 2012 Sur Ct, New York County Glen, J. Published by New York State Law Reporting Bureau pursuant to Judiciary Law § 431

Employment of ASD People Who Have Been to High School

Hsu-Min Chiang et al. have an article in The Journal of Autism and Developmental Disorders titled "Factors Associated with Participation in Employment for High School Leavers with Autism."

High school leavers with autism from low income families are less likely to participate in employment compared to those from medium and high income families. The odds of participation in employment are 17.37 times larger if a high school leaver with autism is from a high income family compared with low income family, holding other variables constant. This finding suggests that the professionals who work with individuals with autism should be aware of the needs of the individuals with autism from low income families and provide extra support to meet the needs of these students. Because these students may not have the resources, job opportunities, and other supports that the students from high income families may have, the inadequate resources and supports available to students with autism from low income families may unfortunately lead to a low employment rate in this population. Thus, we want to call for more resources and supports (e.g., transportation, vocational training, job coach, job finding) to be provided to individuals with autism from low income families.

ASD Technical Adviser

A number of posts have discussed depictions of ASD in movies and TV shows. In Australia, David Dale writes at The Age:

he latest exponent of Aspergacting is Diane Kruger (best known until now as Helen of Troy). She plays Sonya Cross, the detective in a US series called The Bridge, showing on the pay channel FX. Sonya is modelled on Saga Noren, the detective in a Swedish series called Bron, which showed last year on SBSTwo.

To play Saga, the actress Sofia Helin read books on Asperger Syndrome. To play Sonya, Diane Kruger went one better and asked the support organization Autism Speaks to send someone to coach her in the mannerisms. Kruger says of her adviser, Alex Plank: “I’ve spent -- I’m not kidding -- more time with him in the past four months than I have with my partner and friends. I sleep easier at night knowing that he watches over everything I do.”

And this is how she plays the detective: “She is very good at her job because she’s obsessive when it comes to murder and serial killers. Part of that is because she is on the [autism] spectrum and crime is her passion ... She is very literal. She doesn’t really understand jokes. She’s very honest. She doesn’t understand why people lie. People look up to her because she has the ability to focus.”

A discussion between Plank and Kruger:


The Bridge - Alex Plank Interviews Diane Kruger about Asperger's & Sonya Cross from Alex Plank on Vimeo.

Shortage of Special Ed Teachers in California

Previous posts have talked about shortages of special education teachers.  San Francisco's KGO-TV reports on the situation in California:

Autism Speaks TRICARE Analysis

Autism Speaks reports on a purported TRICARE policy change:

Last year Congress directed TRICARE to launch an ABA pilot program to improve and expand its coverage for non-active personnel. TRICARE published its ABA Pilot policy last month for non-active duty family members -- but along with it camesignificant and drastic changes to existing ABA coverage for all beneficiaries with autism, including active duty military families.

Last week, TRICARE stepped back, but not away, from this ill-conceived change in the policy for ABA. After a tremendous outcry from military families, service providers, and advocacy organizations, Dr. Jonathan Woodson, assistant secretary of defense for health affairs and director of the TRICARE Management Activity, assured military families that services under the TRICARE Basic program and the Enhanced Access to Autism Services Demonstration (ECHO Autism Demonstration) will not change.

As of this writing, however, the new policy itself has not been modified.Our summary here is based on Woodson’s verbal assurances that the ECHO Autism Demonstration and the TRICARE Basic Program will not change. We will update the summary as developments warrant – please check back.

Autism Speaks, meanwhile, remains concerned about the ABA Pilot for non-active duty family members. Specifically, these issues need to be addressed:

• by requiring specific psychometric testing, including the Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2), as a baseline measure before services can be provided, access to treatment for children may be delayed, possibly for several months

• by using the Vineland Adaptive Behavior Scales, 2nd Edition (Vineland-II), to confirm progress in treatment – a function for which the test has not been validated – needed care could be denied to children who could benefit from ABA

• arbitrary age and duration limits

• discharge criteria

• proper coverage of Assistant Behavior Analysts

Autism Documentary Airs Monday

PBS is airing a documentary titled "Neurotypical."

Broadcast: Monday, July 29, 2013
Check local listings >>Online Streaming: July 30, 2013 – Aug. 28, 2013

Neurotypical is an unprecedented exploration of autism from the point of view of autistic people themselves. Four-year-old Violet, teenaged Nicholas and adult Paula occupy different positions on the autism spectrum, but they are all at pivotal moments in their lives. How they and the people around them work out their perceptual and behavioral differences becomes a remarkable reflection of the "neurotypical" world — the world of the non-autistic — revealing inventive adaptations on each side and an emerging critique of both what it means to be normal and what it means to be human.

 

Another Apology

The Huffington Post reports on another apology:

Just a few days after J. Cole apologized for a lyric about autism that many labeled offensive, Drake has stepped up to do the same. The two collaborated on the latter's "Jodeci Freestyle," with J. Cole rapping the verse in question.

Drake took to his site to issue the mea culpa:

J.Cole wrote a beautiful and moving apology to individuals and families affected by autism who were understandably hurt by a verse in "Jodeci Freestyle". I share responsibility and offer my sincerest apologies for the pain this has caused. Individuals with autism have brilliant and creative minds, and their gifts should not be disparaged or discounted. This was a learning lesson for both of us, and I’m grateful for the opportunity to try to right this wrong. J. Cole and I believe that it is the right, responsible, and respectful decision to remove the lyric from the song.

J. Cole's divisive lyric -- "I'm artistic, you n----s is autistic, retarded" -- prompted a petition from the Anti-Bullying Alliance prior to the rapper's apology. He is part of a slew of hip-hop stars who have recently backtracked on offensive lyrics, including Lil Wayne and Rick Ross. J. Cole said in his blog-post atonement that he doesn't agree with the trend but felt he overstepped decorum with this particular lyric.

TRICARE Rally

In Virginia, WAVY-TV reports on a rally to improve TRICARE benefits:

Families fight for TRICARE services

Autism Speaks adds detail:

The rally was in response to new policies announced by TRICARE imposing restrictions to ABA care under a pilot program for retired and non-active personnel. The policies, which take effect July 25, originally would have applied to all TRICARE coverage, including the ECHO program for active duty members, but was revised after an uproar from military families and members of Congress.

Legislation that would have required ABA coverage for all military members passed both houses of Congress last year, but was amended down to the pilot program in conference committee. Similar legislation this year has passed the House and awaits action in the Senate.

Rapper Apologizes

Previous posts have discussed demeaning comments about autism appearing in popular culture.  AP reports on the latest case:

Rapper J. Cole is apologizing to those with autism and their families for an offensive lyric.

Cole says in a blog post Sunday that he doesn’t agree with the recent trend of pressure rappers have faced to apologize when they step over a perceived line, but in this case he feels he went too far in a verse he contributed to Drake’s “Jodeci Freestyle.”

“To the parents who are fighting through the frustrations that must come with raising a child with severe autism, finding strength and patience that they never knew they had; to the college student with Asperger’s syndrome; to all those overcoming autism,” Cole wrote. “You deserve medals, not disrespect. I hope you accept my sincere apology.”
...

Cole has been in the spotlight this summer after his recent album “Born Sinner” jockeyed with Kanye West’s “Yeezus” when released last month and reached No. 1 on the Billboard 200 the following week. That album also contains moments that some might consider offensive. In Drake’s song, Cole raps that he’s “artistic” while his rivals are “autistic, retarded.”
Cole wrote that when he first heard a backlash from those who deal with the developmental disorder he immediately realized he went too far.

Utah Pilot Program -- Implementation

The Salt Lake Tribune reports on problems with a pilot program in Utah:

The Kavas had high hopes in November when Jason became one of 277 Utah children picked in a lottery to receive free applied behavior analysis (ABA) therapy through a Medicaid pilot program.

But it took four months for them to complete paperwork, for the state to link families with providers and for Utah Behavior Services to find tutors willing to travel to southeastern Utah.

Then the company quit treating J.J. three months later, after his father questioned the quality of its care.

The tutors, both formerly stay-at-home-moms with no experience and minimal training, "would drive around town and go to Maverik and buy soda to see how he behaved. That was supposed to be social time," said Jason Kava, a single, working dad.

One woman "was hauling him 30 miles to her house, sometimes without notifying us," he said.

Except for an initial assessment, none of the sessions was observed by a certified ABA therapist, the Kavas said, and the tutors frequently failed to show up for the 15 hours of weekly therapy J.J. was scheduled to receive.

The same paper, however, reports on success as well:

 Not all rural families in the program have faced delays and struggles in finding reliable, qualified providers. The Kartchners live in Monticello, a tiny town in the far southeastern corner of Utah near the Navajo Reservation.
...
A board-certified behavior analyst regularly checks in via Skype, providing feedback to his tutor and parents, and tweaking his therapy plan.

In five months he has gone from being nonverbal to saying "momma" for the first time, said Kartchner. "He’s requesting things and no longer needs the communication app on his iPod."

In rural Utah, said Kartchner, "We have to be realistic. We have this great opportunity, and I’m going to do as much as I can to make it successful."

McCarthy and Vaccine

The Newark Star-Ledger editorializes about Jenny McCarthy:

McCarthy is careful to say she is not anti-vaccine on the Generation Rescue website. But she also introduces parents who blame vaccines for causing autism. She doesn’t dispute them. It’s disingenuous at best: She gets to disavow the vaccine connection, while lending her name to a group that promotes it.

The accusation has been debunked by science. Seth Mnookin, co-director of MIT’s Graduate Program in Science Writing, recently wrote “The Panic Virus: The True Story Behind the Vaccine-Autism Controversy,” and has reprinted the chapter on Jenny McCarthy’s crusade on his blog. It’s worth reading to get the full sense of her crackpot views of medicine, and the power she wields over parents desperate for answers.

The danger in abstaining from vaccines cannot be overstated. This is how we virtually eradicated epidemics such as smallpox and polio. And refusing a vaccination isn’t just a choice for your kid. It’s a dangerous choice for everyone else.

The Wall Street Journal provides a telling example from Wales:

When the telltale rash appeared behind Aleshia Jenkins's ears, her grandmother knew exactly what caused it: a decision she'd made 15 years earlier.

Ms. Jenkins was an infant in 1998, when this region of southwest Wales was a hotbed of resistance to a vaccine for measles, mumps and rubella. Many here refused the vaccine for their children after a British doctor, Andrew Wakefield, suggested it might cause autism and a local newspaper heavily covered the fears. Resistance continued even after the autism link was disproved.

The bill has now come due.

A measles outbreak infected 1,219 people in southwest Wales between November 2012 and early July, compared with 105 cases in all of Wales in 2011.

One of the infected was Ms. Jenkins, whose grandmother, her guardian, hadn't vaccinated her as a young child. "I was afraid of the autism," says the grandmother, Margaret Mugford, 63 years old. "It was in all the papers and on TV."

The outbreak presents a cautionary tale about the limits of disease control. Wales is a modern society with access to modern medical care and scientific thought. Yet legions spurned a long-proven vaccine, putting a generation at risk even after scientists debunked Dr. Wakefield's autism research.

From  the CDC:

Before measles vaccine, nearly all children got measles by the time they were 15 years of age. Each year in the United States about 450-500 people died because of measles, 48,000 were hospitalized, 7,000 had seizures, and about 1,000 suffered permanent brain damage or deafness. 

TRICARE Retreats

Following pushback from military families, the military has backed off from TRICARE eligibility restrictions. The Washington Times reports:

The Pentagon on Thursday eased some concerns among military families worried that a new pilot program would interrupt treatment for their autistic children.

Some active-duty families had feared the 12-month program, which will begin Thursday to provide special behavioral treatment for autistic children, would be unwieldy for service members who change duty assignments. The program requires testing every six months.

For “any active-duty family member currently enrolled in the [extended care program], there is no change in their requirements on July 25. They can continue to get the same care under the same rules going forward,” Dr. Jonathan Woodson, assistant defense secretary for health affairs, said during a conference call with reporters.

“For all of the existing programs, there is no plan to implement more rigorous requirements during the next year,” Dr. Woodson said. “We are apologetic to the autism community because we know there has been some controversy over the issue.”

The pilot program focuses on an intensive therapy for autism called applied behavioral analysis, or “ABA” treatment. It was mandated by the 2013 National Defense Authorization Act in order to study how ABA can be made available to military family members under Tricare, the military’s health care system.

Military family advocates say the Pentagon previously had issued eligibility restrictions for all members receiving ABA under Tricare, including active-duty family members, but buckled under pressure.

“It seems that Tricare has rethought the policy that it had announced previously,” said Karen Driscoll, associate director for government affairs and military relations for Autism Speaks, an advocacy group. “We think this is a positive step in the right direction, and we applaud their decision to rethink this.”

TRICARE Reports

KHON-TV in Hawaii reports that recent TRICARE changes could hurt some military families:

“Because of ABA therapy, we had a lot of hope and now I feel like that’s being taken away,” [autism mother Zebonee] Bongiorno said.

One of the major issues is the required waiver application if treatment exceeds two years.

“Our biggest concern is if there is going to be an interruption in services because we need the continuity,” mother Jennifer Frazier said.

TRICARE says, “Although ABA is not limited to a set number of years, additional ABA beyond two years requires approval by the regional contractor medical director.”

“We don’t know what we are going to do. Really, we don’t know,” Bongiorno said.

Some lawmakers in our nation’s Capitol have called upon TRICARE to review their new rules.

Phone calls to TRICARE officials were not returned.

WTKR in Virginia reports that some parents plan on demonstrating against the new policy:


See the Facebook page of Navigation Behavioral Consulting.

Reverberations of the Seattle Bus Ad

Previous posts discussed a now-withdrawn Seattle bus ad that spoke of wiping out autism. The Seattle Weekly reports:

... Arzu Forough of Washington Autism Alliance & Advocacy worries that the recent press coverage in Seattle could mislead the public about the nature of autism and obscure how serious the condition can be. Forough supported pulling the ad, and repeatedly calls for various autism groups to work together to advocate for support. But she says the points made by ASAN in many media over the last week are only part of the picture.

“A lot of people don’t understand what autism is, they don’t understand that it’s actually a disability,” says Forough, the Eastside mother of an autistic son. “Their perception is that these are individuals who may be quirky and they may just have some minor differences, and they really don’t understand the depth of support that some individuals with autism need.

“To that segment of the population, what played out with Seattle Children’s last week really won’t help them understand autism better.”

Back at Mary Gates Hall, the members of ASAN say they’ve heard it all before, and stick to their core message: If more thought was put toward accommodating autism rather than fixing it, autistic people would be far better off.

“People say ‘You’re too high-functioning to understand,’ ” Lyubov Steadman says. “You never met me when I was 10 years old. I was that kid.”

More on McCarthy

Several posts have dealt with "false balance" in media coverage of autism and vaccines. Brendan Nyhan writes at The Columbia Journalism Review:

ABC’s announcement yesterday that actress/comedian Jenny McCarthy will become a co-host of The View brought forth a torrent of condemnation from doctors, science journalists, opinion writers, and even entertainment commentators who oppose giving the anti-vaccine activist a high-profile platform to spread misinformation.

Unfortunately, however, the early coverage has generally failed to follow best practices for covering false or unsupported claims, giving greater reach to discredited claims that have potentially dangerous consequences for public health.

One problem was that McCarthy’s hiring was initially categorized as an entertainment story under the journalistic beat system and thus covered by reporters who don’t specialize in science or health. Predictably, some of them resorted to “he said,” “she said” style coverage that failed to make clear just how extreme and scientifically discredited McCarthy’s views are.

At The National Geographic, Susan Brink writes:

Maybe, just maybe, Jenny McCarthy won't even mention autism and vaccines from her new perch on The View. That's the hope of Paul Offit, chief of the Division of Infectious Diseases at the Children's Hospital of Philadelphia. "In a more rational world, this discussion would be un-reopenable," Offit says. "The answerable questions have all been answered." It's not the vaccine, or anything in the vaccine. It's not the number or timing of vaccinations. Scientifically, he says, we know that.

So what is causing an increase in autism? We don't know for sure, says Offit, but the best data are genetic, involving several genes required for brain development that may generate abnormalities even in the womb. Some researchers have found a connection between older fathers and an increased risk of autism in their children. Or the increase could be due to more awareness of autism and a broader definition of the disorder.

One quibble:  it is far from certain that there even has been a true increase in the prevalence of autism. Serious analysts agree that changes in diagnostic criteria and public attitudes account for much of the apparent change.

Jenny McCarthy and Barbara Walters

USA Today reports:

It's official: Barbara Walters confirmed on Monday's The View that comedic actress Jenny McCarthy will join the chatfest when its 17th season begins Sept. 9.
...
"We are delighted that Jenny will be joining us as a permanent co-host," Walters says, adding McCarthy "brings us intelligence as well as warmth and humor. She can be serious and outrageous. She has connected with our audience and offers a fresh point of view."

Not everybody shared Walters' delight. McCarthy, who has embraced the controversial claim that vaccinations cause autism, has drawn the ire of pro-immunization advocacy groups.

In her book Mother Warriors, however, McCarthy writes of meeting Walters before her first appearance on the show:

I turned the corner and walked into her dressing room. She was getting her makeup done when I said "Hi, Barbara." She whipped her chair around and sternly stared at me with cold eyes. All I could think was "uh-oh."

"People think you're crazy, you know that?" she said with words made of icicles.

"Um, no," I said softly. Then she lowered her chin and managed to lower an octave in her voice and yet raise the volume at the same time.

"MOST doctors do not agree with anything you are saying. Isn't that true?" she said in a wicked, scary tone. I was in shock. Truth be told, I never had anyone yell at me like that -- not since Scott Baio heard I called him Chachie [sic] in an interview...

Pediatric Training

A July 11 release by Vanderbilt University describes a new study in the journal Autism about a training program to enhance autism spectrum disorder (ASD) identification and assessment within Tennessee community pediatric settings.

After participating in training to learn strategies for conducting rapid diagnostic assessments following positive ASD screenings, pediatricians reported significant changes in their screening and consultation practices, with 85 percent reporting an increase in numbers of children with autism evaluated within their practice. The study also found that pediatric providers were nearly as accurate as specialists in their diagnoses, with agreement seen in more than 90 percent of all cases.

Despite screening initiatives, advocacy efforts and increased public awareness, the most recent Centers for Disease Control and Prevention data regarding autism prevalence suggest that the diagnosis is still not made until 4-5 years of age. The increased prevalence of autism and documented benefits of early intensive intervention have created a need for flexible systems for obtaining accurate, time-efficient diagnoses, the authors wrote.“Ideally, definitive early diagnosis of ASD would be rapidly accomplished by a team of developmental specialists, and children at risk for diagnosis would obtain services immediately after screening positive. The reality is that such diagnostic teams, or even individual professionals, are not available in most locations,” said corresponding author Zachary Warren, Ph.D., associate professor of Pediatrics, Psychiatry and Special Education and director of the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) at Vanderbilt University. “Even when available, the waitlists for diagnostic services are so long that children referred for evaluation wait extended periods of time for diagnosis. As a parent, I cannot fathom how stressful it would be to be told that your child may have autism, and we’ll let you know the answer to that question in six to 12 months.”

“Although the field has made great advances in early screening for autism, the steps taken after a positive ASD screening in community settings are much less clear and often problematic for clinicians, families and systems of care alike,” Warren said. “Essentially, more children are being referred for a very limited number of expert diagnostic assessment resources. Because of this, wide-scale screening for ASD at young ages may in fact increase wait times for diagnostic assessment. Given this context, it is critical to develop enhanced ASD-specific diagnostic training programs if we hope to shift the age of diagnosis and promote earlier access to early intervention.”

...

Key findings:

• Community pediatric providers were more likely to conduct independent autism assessments within their practice, rather than referring the child for outside evaluation.
• Community pediatric providers showed high agreement in ASD classification with expert clinicians.
• A dramatic shift was seen in pediatric providers’ sense of the appropriateness for a child to receive a diagnosis from his or her primary care provider, without or before a comprehensive evaluation.
• A dramatic shift in the comfort level of discussing ASD diagnoses with caregivers was seen.
• There was a significant increase in the number of diagnoses made within respective provider practices.

This study builds on pilot findings from 2009 by presenting a more comprehensive evaluation of the training model and utilizing a broader sample of pediatric providers.

Terror Suspect with Autism

This week, AP reported:

A young New York man caught boarding a plane on his way to Yemen to fight with an al-Qaida affiliate is a mixed-up teenager who was diagnosed with autism and didn't understand the gravity of what he was doing, his attorney told The Associated Press.

Justin Kaliebe, 18, pleaded guilty in a secret federal court proceeding in February to a charge of attempting to provide material support to a terrorist organization. He was ordered to undergo a psychiatric evaluation before he is sentenced Sept. 27. His condition could be considered in determining his sentence; he faces up to 30 years in prison.

"Justin Kaliebe is a gentle, misguided, autistic teenager who does not have the ability to fully understand the magnitude and consequences of his actions," defense attorney Anthony La Pinta said in a statement to the AP.

La Pinta, who joined the defense team after the guilty plea was entered, said he has medical documents showing that Kaliebe was diagnosed with autism as a young child, but he would not release them.

Authorities have declined to say why the plea was entered in secret, though the move could mean Kaliebe was cooperating in the investigation when it was at a sensitive stage.

Autism Speaks reports:

"Planned violence is very rare in autism and certainly not characteristic,” says psychiatrist Jeremy Veenstra-VanderWeele. Dr. Veenstra-VanderWeele works with children and teens who have autism at the Autism Speaks Autism Treatment Network center at Vanderbilt University, in Nashville.
...
“As a spectrum disorder, autism is quite variable,” Dr. Veenstra-VanderWeele says. “But planned violence overall is less common, not more common, in people with autism. When stories like this emerge, it’s sometimes tempting to link a single person's actions to a larger group of people who share something in common.”

Most media reports have not made such implications – a possible reflection of increased awareness and understanding of autism spectrum disorders.

Silver Alert in Alaska

A July 10 release from Alaska State Senator Johnny Ellis:

ANCHORAGE – Today, the Governor signed House Bill 59, creating rapid response and notification plans for law enforcement to activate when a vulnerable adult goes missing. The bill’s protections would apply to senior citizens with dementia, adults with developmental disabilities, veterans suffering from PTSD, and other disabled adults.

House Bill 59 was introduced by Representative Max Gruenberg (D-Anchorage). Senator Johnny Ellis (D-Anchorage) cross-sponsored the bill and was the prime sponsor of its Senate companion.

“Much like the Amber Alert helps find missing children, the Silver Alert can save lives by coordinating efforts to find seniors and vulnerable adults, should they go missing,” said Representative Gruenberg.

The bill received overwhelming support from public, senior, and disability advocates in the Legislature. Silver Alert supporter Michael VanVleet, a disabled Iraq War veteran who works at Ft. Richardson’s Warrior Transition Unit, said it was a much-needed tool to address the problem of veterans with Post-Traumatic Stress Disorder.

“Creating a ‘Silver Alert’ in Alaska has been a top priority for numerous organizations that represent seniors, veterans, and the disabled,” said Senator Ellis. “The only concern I ever heard about this bill is ‘Why the heck haven’t we done this already?’”

Alaska now joins thirty-eight other states with “Silver Alerts” or related programs with demonstrated success in improving the outcomes of missing person searches for vulnerable adults. Alaska has a particular need for a “Silver Alert” program, given the state’s harsh weather and vast wilderness, coupled with its large number of active military members and veterans, as well as a growing senior population.

The program will be designed by the Alaska Department of Public Safety, in cooperation with the Department of Military and Veterans’ Affairs, to best incorporate the voluntary cooperation of media outlets in notifying the public of missing vulnerable adults through television, radio, and social media.

Please call Rep. Gruenberg’s office at 269-0123 with any questions.

Senators Question TRICARE Policy

A release from Senator Kirsten Gillibrand (D-NY):

The recent announcement of new federal rules to the military health insurance program (TRICARE) would put thousands of military children with developmental disabilities such as autism at-risk of losing critical behavioral treatment and care. Today, Senators Kirsten Gillibrand (D-NY), a member of the Senate Armed Services Committee, and Patty Murray (D-WA), a member of the Senate Veterans’ Affairs Committee, expressed their outrage over the new policy which cuts off care for children who do not show progress over a six month period. The new policy reveals a complete lack of understanding of the needs of children with developmental disabilities. The Senators urged the head of TRICARE to explain how the restrictive rules that require standardized testing, limit the eligibility of treatment, and set an age limit on receiving the care were determined and urged the agency to consult with experts before the new rules go into effect on July 25th.
...

The Senators wrote in a letter to Assistant Secretary of Defense for Health Affairs & Director of TRICARE Management Activity, Dr. Jonathan Woodson, “We are writing to express complete frustration and dismay over the recent changes to coverage of applied behavior analysis (ABA) for all TRICARE eligible beneficiaries with autism. Prior to last year, children with developmental disabilities other than autism were also receiving and making progress from ABA services. However, new policies last year resulted in these children losing access to ABA services. The policies we write about today are another step in the wrong direction... The apparent lack of understanding of the needs of children with developmental disability, including autism, when drafting the recent TRICARE policy changes is astounding. The departure from how TRICARE covers all other medical care is also very concerning. Before these new policies are in effect, we strongly urge you to consult with experts in developmental disabilities such as autism and ABA treatment practices.”

Under the new policy, key restrictions include:

• Discharge from care if military children do not demonstrate progress over a limited period of time
• Limits care to patients age 16 and under
• Limits treatment to 2 years (requests beyond 2 years must go through a waiver process)
• Requires standardized testing every 6 months to receive care
• Places significant administrative burden on the care provider which will impact the number of providers willing to accept TRICARE
• The Senators emphasized that children of military families often experience regression due to life events such as deployment, relocation, and new school environment and returning from periods of regression often take significant time and effort. The Senators also requested prompt responses to their list of questions, including on what basis these rules were determined.

Autism is the fastest growing developmental disability in the country, with over 23,000 TRICARE beneficiaries diagnosed with autism. Nationwide, this disease affects 1 in 88 children and 1 in 54 boys, according to the Centers for Disease Control.

Poll of Disability Community

The Youth Transitions Collaborative reports on a new survey:

The political engagement of the survey sample was based on U.S. Census Bureau reporting of voter registration within the disability and chronic conditions community. The best current Census estimates place voter registration for this community at 69 percent. The survey design set quotas to ensure a community with 74 percent self-reported registration, allowing for some measure of over-reporting in the sample.

When asked, 72 percent of participants said that they voted in the 2012 presidential election, compared to the 57.5 percent voter turnout recorded by Bipartisan Policy Center. A high percentage of this community said they plan to vote in the upcoming midterm elections, with 61 percent saying they will vote in the 2014 U.S. House and Senate elections.

The community considers a candidate’s record on supporting people with disabilities in their voting decisions, with 84 percent of respondents saying that having a record of supporting services and programs for people with disabilities is somewhat or very important.

Not only is a candidate’s record important, the community will actually vote against candidates they otherwise support if that candidate supports cuts to existing government services for people with disabilities. Eighty-seven percent of respondents said they would consider voting against a candidate they otherwise supported who was in favor of cuts to services (45% saying they definitely would).

Beyond going to the polls, the community is willing to “actively support” those candidates looking to strengthen services. Eighty-five percent of respondents said they would be very likely or somewhat likely to support a candidate working to strengthen government services and supports for people with disabilities or other chronic conditions.

The community is politically diverse, with party affiliation tracking closely to the general population (30 percent Democratic compared to 31 percent of the general population, 23 percent Republican compared to 26 percent of the general population, and 30 percent Independent compared to 41 percent of the general population).

A Possible Cause of Some Cases

A release from the UC Davis MIND Institute:

UC Davis MIND Institute researchers have identified the specific antibodies that target fetal brain proteins in the blood of a subset of women whose children are diagnosed with autism. The finding is the first to pinpoint a specific risk factor for a significant subset of autism cases, as well as a biomarker for drug development and early diagnosis. The researchers have named autism related to these antibodies “Maternal Autoantibody-Related," or MAR autism.

The study found that the mothers of children with autism were more than 21 times as likely to have the specific MAR antibodies in their systems that reacted with fetal brain proteins, or antigens, than were the mothers of children who did not have autism. In fact, specific combinations of MAR antibodies were not found in the blood of mothers whose children were typically developing.

The research, "Autism-specific maternal autoantibodies recognize critical proteins in developing brain," is published online today in Translational Psychiatry, a Nature journal.

The study was led by principal investigator and immunologist Judy Van de Water, a researcher affiliated with the MIND Institute. Earlier studies by Van de Water and her colleagues found that women with certain antibodies in their bloodstreams are at greater risk of having a child with autism and that their children exhibited more severe language delays, irritability and self-injurious behaviors than did the autistic children of mothers whose blood did not have the antibodies.

“Now we will be able to better determine the role of each protein in brain development,” said Van de Water, professor of internal medicine. “We hope that, one day, we can tell a mother more precisely what her antibody profile means for her child, then target interventions more effectively.”

To identify the exact antigens targeted by the mothers’ antibodies, Van de Water and her colleagues conducted the research in Northern California using blood samples from 246 mothers of children with autism and of a control group of 149 mothers of children without autism to examine their reactivity with the candidate antigens.

Seven antigens were significantly more reactive to the blood of mothers of children with autism than to that of the control mothers. The study found that the mothers with antibodies that reacted with any one of these antigens, either individually or in combination with other antigens, were more than three times as likely to have a child with autism spectrum disorder.

Several combinations of antibodies in the blood from mothers of children with autism were not found in the control mothers’ blood. Nearly 23 percent of mothers of children with autism had certain combinations of autoantibodies against the target antigens, compared with less than 1 percent of mothers of children without the disorder.

California Developmental Centers: An Audit

California's State Auditor has issued a report on the state's  developmental centers.  The release:

BACKGROUND

Approximately 1,600 Californians with developmental disabilities reside in and receive medical and other services from one of the California Department of Developmental Services’ (department) developmental centers. Each center develops and maintains policies for identifying and preventing abuse and neglect of residents. Officers from the department’s law enforcement division, the Office of Protective Services (OPS), are on-site at each center and respond to alleged abuse of residents. The California Department of Public Health (Public Health) licenses and certifies the centers as skilled nursing facilities, intermediate care facilities, and general acute health care hospitals. Public Health conducts site visits for required inspections, called surveys, of licensed facilities at each center and investigates complaints involving those facilities. 

KEY FINDINGS

During our review of resident safety at the department’s developmental centers, we noted the following:

• Health care staff did not always promptly notify OPS staff that an incident had occurred—in seven of 60 health care reviews we examined, staff took from two and a half hours to nine days to notify OPS.

• The quality of OPS’s investigative work frequently fell short of its standards, and investigations were not always completed timely. We found, in the 48 OPS investigations we reviewed, that:

 OPS often failed to collect the required evidence during its investigations: OPS did not obtain written declarations from witnesses and the subjects of investigations in 21 cases, did not photograph alleged victims’ injuries in 19 cases, and did not obtain specialized medical examinations for alleged victims of sexual assault in two cases.
 OPS completed only 24 investigations (or 50 percent) within 30 days with three taking 292, 436, and 585 days, respectively, to complete.

• The same investigator conducted both the criminal and administrative investigations in eight cases, even though a 2002 report by the Office of the Attorney General stated that when an incident has both criminal and administrative implications, two separate investigators should conduct separate investigations.

• The department has not addressed longstanding problems, many of which were raised in the 2002 report.

 In the last 10 years, the OPS chief has transitioned six times and the commander in each of the developmental centers have transitioned between eight and 10 times.
 The department has not provided sufficient specialized training to its law enforcement staff.
 Even though OPS has suffered high vacancy rates, the department has no formal recruitment process—in fiscal year 2011-12, OPS had a vacancy rate of 42.8 percent in its law enforcement positions.
 Developmental centers have allowed some employees to work excessive amounts of overtime. Sixty-two health care and OPS law enforcement employees doubled their pay during a five-year period–they were paid nearly $14.1 million in overtime pay and $11.4 million in regular pay.

• While Public Health has conducted most of the federal certification surveys on time for the developmental centers, it did not complete nearly 60 percent of the required state licensing surveys for fiscal years 2005-06 through 2011-12.

• Although Public Health promptly investigated developmental center incidents classified as most serious, we found significant variation in the time it took to initiate investigations for incidents considered to have lower priority.

KEY RECOMMENDATIONS

We made recommendations to the department including that it amend policies and procedures for how OPS conducts investigations and that OPS provide the appropriate specialized training to its law enforcement staff. We also recommended that it promptly address OPS’s high number of vacancies, institute a formal recruitment program, and reassess staffing requirements to minimize the need for overtime. Further, to make certain that residents receive an adequate level of care and are protected from harm, the department should monitor closely the overtime approval process, attempt to cap the number of voluntary overtime hours employees can work, and distribute the overtime more evenly among staff.

More on the Seattle Ad Controversy

KCPQ reports on the controversy about a Seattle bus ad that called for wiping out autism:

Jamie Skorheim writes at MyNorthwest.com:

"Autism is a lifelong disability for us to adapt to, not a medical infection to be overcome with some kind of 'cure,'" said Matt Young, an autistic man who wrote a blog drawing attention to the ad. "Please remember this when creating ads that refer to autism, or when speaking publicly about autism. It is not okay to talk about autism as a purely negative thing to be eliminated or wiped out. Remember, when you talk about autism, you're not talking about a faceless, mindless disease, you're talking about autistic people."

KIRO Radio host Luke Burbank acknowledges this is a sensitive subject that impacts many people, but he believes work to eradicate autism can still be conducted while supporting those in the autistic community.

"It's a little weird to act as if seeking an end to autism is somehow hurtful towards people who currently have autism. I think you can both provide help to, and love, and support, and treat as equals people with autism, and recognize that it is a syndrome that has a very negative impact on the lives of a lot of people."

 ...

"There are people who grow into adulthood and are completely unable to function in this world, and I think the idea that that's just like, 'Hey, that is just them doing them,' that's their journey. I don't find that argument very convincing."

Ad Controversy

The Seattle Times reports:

Next to the adorable smiling face of a young boy read the words, “Let’s wipe out cancer, diabetes and autism in his lifetime.”

The last item in that tagline — “autism” — is what got these Seattle Children’s ads pulled from King County Metro buses last Friday.

The Autistic Self Advocacy Network’s Washington chapter (ASAN-WA) organized an online campaign objecting to the ad’s juxtaposition of autism with illnesses such as cancer and diabetes. Seattle Children’s had received dozens of emails, phone calls and comments on its Facebook page when it decided to nix the bus ads.

“Autism is a disability, but it is not a disease. It is not a life-threatening illness,” said Matt Young, co-leader of ASAN-WA. “The idea it’s a state to be wiped out has much negative impact on our lives.”

ASAN is a leading organization in the neurodiversity movement, which seeks acceptance of autism as a variation in mental function rather than a disorder to be cured.

The ad, and the reaction to it, highlight differences in the autism community between neurodiversity advocates who view autism as another way of being and other groups more focused on finding a cure.

On Friday, Seattle Children’s posted an official statement on its Facebook page: “We are sorry for the hurt and anger these ads have caused — that was never their intent.”

A Seattle-area blogger posted a photo:

 

The episode recalls a similar incident in 2007.  The New York Times reported:

The Child Study Center at New York University said on Wednesday that it would halt an advertising campaign aimed at raising awareness of children’s mental and neurological disorders after the effort drew a strongly negative reaction.

The note about autism, for example, read: “We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives.”The two-week-old campaign, created pro bono by the advertising agency BBDO, used the device of ransom notes to deliver ominous messages concerning disorders like autism,depression, bulimia and attention-deficit hyperactivity disorder.

Advocates for children with autism and for other special-needs children said the ads reinforced negative stereotypes.

“While many individuals spoke to us about the need to continue the campaign, inadvertently we offended others,” said Dr. Harold S. Koplewicz, the Child Study Center’s founder and director, who estimated that he had received 3,000 e-mail messages and phone calls. Thirty percent of those praised the initiative, he said, and 70 percent expressed anger and hurt.

More on Medi-Cal

At The Los Angeles Times, Chris Megerian reports on an Evan Kim, a child with autism:

Evan's therapy was a casualty of the state's effort to phase out its Healthy Families insurance program and shift the nearly 900,000 children it covered into Medi-Cal, the broader healthcare program for the poor. Despite officials' assurances that the transition would not jeopardize services, activists say hundreds of children are losing coverage for applied behavior analysis.

"Those are the families that fall through the cracks," said Julie Kornack, a public policy analyst at the Los Angeles-based Center for Autism and Related Disorders. "If they don't get the treatment they need, they won't be contributing members of society. And everyone will have to pay to take care of them."

Activists fear that other coverage gaps could surface as the state prepares to move the final 150,000 children into Medi-Cal in the next two months. Elizabeth Abbott, an official at the advocacy group Health Access, said she worried that dental resources could also become strained.

"This is potentially the tip of the iceberg," Abbot said.

Rene Mollow, a deputy director at the California Department of Health Care Services, said the transition has been mostly smooth. She said some children can get similar autism therapy through a federal program or local school district, but she conceded that those services won't be available to everyone.

Mollow's statement is not quite accurate. California's Office of Administrative Hearings has explained:

A school district is not required to address a student’s behavior problems that occur outside of
school when the student demonstrates educational progress in the classroom. (San Rafael
Elem. Sch. Dist. v. Cal. Special Educ. Hearing Office, supra, 482 F.Supp. at p. 1160.) A
school district is required to address behavioral problems extraneous to the academic setting
only to the extent they affect the student’s educational progress. (Id. at p. 1162.)

The Times article continues:

Applied behavior analysis is an intensive treatment in which therapists use positive reinforcement to improve a child's behavior and detailed instructions to make learning new tasks easier. It is used to teach a child, among other things, how to get dressed in the morning and play well with others.

Brown expressed skepticism of the therapy when he signed a 2011 bill requiring many private insurers — but not Medi-Cal — to cover applied behavior analysis.

"There are remaining questions about effectiveness, duration and the cost of the covered treatments that must be sorted out," he said in a statement.

Autism experts disagree, saying the therapy can be costly but is vital.

"They're taking away the only scientifically proven treatment for children who have a very significant medical condition," said Jonathan Tarbox, director of research and development at the Center for Autism and Related Disorders. The center provides applied behavior analysis through state-funded programs.

TRICARE Changes and Psychometric Testing

Autism Speaks spells out changes in TRICARE.  An excerpt:

Referral and authorization of services are required for all ABA care. We have outlined the following steps to help walk you through this complicated process:

1. Parents must get a referral for ABA from their Physician Primary Care Manager (P-PCM) or from a specialized autism provider.

2. The Managed Care Support Contractor (MCSC) will then refer beneficiaries for an “ABA assessment” to be conducted by an ABA provider.

3. The ABA assessment must include psychometric testing using the Autism Diagnostic Observations Scale, second edition (ADOS-2), and the Vineland Behavioral Scale II (VBS-II).

4. Based on the results of the ABA assessment, the referring provider must submit a referral to the MCSC for an authorization of ABA. Please note there are significant changes to the minimum information that the referring physician or psychologist must include as part of your referral. All authorizations are good for one year.

What if my ABA provider is not qualified to administer the ADOS-2 or VBS-II?

If the ABA provider conducting the ABA assessment is not qualified to administer the ADOS-2 or the VBS-II tests, your referring provider must provide you with an additional referral to qualified TRICARE provider that can administer the tests (such as a developmental pediatrician, licensed clinical psychologist, etc.).

What happens if there are wait lists for these providers or I am unable to find a provider in my area to deliver this testing?

The TRICARE policy is silent on this issue. Autism Speaks is aware there is a shortage of specialty care providers in many of our military communities, especially in rural areas. We are very concerned that the absence of available provides will impede access to care for children.

How often are these psychometric tests required?

The VBS-II must be administered every 180 days and the ADOS-2 is required annually.

Why are all of these testing requirements necessary?

TRICARE is now requiring psychometric testing to verify progress on a beneficiary’s treatment plan. Autism Speaks is very concerned about the new testing requirements and that TRICARE is using the results of the psychometric testing for purposes they were not validated for.

So, my child has to show progress on the psychometric tests to continue ABA services?

Yes. We understand that this represents a significant shift in how TRICARE covers all other medical services and fails to address the challenges and needs individuals with autism often experience.

Rubio on Autism Legislation

In 2011, the Florida Legislative Research Center interviewed Senator Marco Rubio (R-Florida) about his time as speaker of the state's House.  The Tampa Bay Times has published the interview, which includes a discussion of autism legislation:

I didn’t fully appreciate the fact that some people are willing ... to pass a bill on the last day of session and send it to you with no time left and put you in take it or leave it positions. There was a bill to help kids with autism and related disabilities, and it came up during my last session as speaker. And l knew that if I sent this bill to the Senate with enough time left that they wouldn’t take the bill. We sent it to them with about a day left, and they amended the bill, took out all the stuff we wanted to see made a part of that bill, put their stuff on it, named it after a senator, and sent it back to us as the very last bill of session.

And the choice that I had to make was do we pass this bill or do we let it die? And if we pass it, we weren’t helping nearly as many kids as I wanted to help. But if we let it die, we’ll be helping no kids at all. And it was the very last decision I really had to make, legislative decision I ever had to make as Speaker. Your pride would say, 'You know what? You know, let’s kill the whole thing.' The way the press covered it was, 'Here’s the Senate outfoxing Marco Rubio again. They sent him a take-it-or-leave-it bill. They even slapped him in face by naming it after some kid.' I remember a reporter in the kind of the wrap-up to session … and she was saying that it was a slam dunk in my face. And I’m here thinking, this is a bill. This is not a bill about whether we name a road or a post office after somebody. This is a bill about autism and children.

We passed it even though it wasn’t what we wanted because the mature decision was 'better helping someone than helping no one.' And in hindsight, I learned that. I wish I had known that, and maybe we could have you know, our strategy could have been a little bit better and ultimately gotten it done, but I don't regret the decision that we made. And, and you know, years later, I think at the next couple of years, the legislature actually came back and did a lot of the things we wanted them to do.

But I still think there’s too much of that. I think the legislative process is still played and covered by the media as some sort of a sport. Who won and who lost? And for this reporter to write, 'Oh, it was a slam dunk in the House’s face. Once again, being outfoxed and outmaneuvered.' We weren’t outfoxed or outmaneuvered. We knew exactly what we were doing. But for us, it was about the autism issue and actually being able to do something about it. Not being able to score some legislative points somewhere that the media said was so brilliant. So I wish I had I think I knew that, but I wish I had appreciated that more going in, but I still would have made the same decision.

A Murder

A number of people with ASD have become murder victims. At Babble, Joslyn Gray writes of Alex Spourdalakis, a 14-year-old ASD boy who died at the hands of his mother and godmother.

An opinion piece by columnist Eric Zorn in the Chicago Tribune offers sympathy for the two women, saying that “the tragic circumstances here suggest desperation, sorrow, confusion and helplessness in the hearts of these women.” Dozens upon dozens of comments, while not excusing the act, agree with the advice to “feel pity rather than rage…to seek to understand even as we condemn.”

I don’t. I don’t feel pity. Just the rage. I don’t understand this as desperation, because when you’re desperate, you take the help that is offered.

Both the National Council on Disability (NCD) and the Autistic Self-Advocacy Network (ASAN) have called for the U.S. Department of Justice to investigate Alex’s murder as a hate crime under the Matthew Shepard and James Byrd Jr. Hate Crimes Prevention Act of 2009.
“To do otherwise sends the message that the short life of Alex Spourdalakis was worth less than the lives of other children and reinforces the notion that killing one’s child if they are disabled, while regrettable, is understandable,” said NCD Chairperson Jeff Rosen in astatement. “This way of thinking should not go unchallenged, and the fervor with which we investigate and prosecute the perpetrators of crimes against people with disabilities should not be diminished.”

ASAN, an advocacy group run for and by autistic people, stated:

“In truth, Alex’s murder is about a reprehensible and repulsive ideology all too common within our society that preaches that it is better to be dead than disabled. As long as our society treats the lives of disabled people as worth less than those of the general population, more disabled children and adults will be subject to acts of violence and murder. As a result, we call for the prosecution of Alex’s killers to the fullest extent of the law.”

In contrast, Autism Speaks offered the following statement:

“On Sunday, 14-year-old Alex Spourdalakis was found stabbed to death in his suburban Chicago home. Alex was severely affected with autism and his mother and his caregiver have been charged in his death.

“We are deeply saddened by the incident involving Alex Spourdalakis. Our thoughts and prayers go out to everyone involved in this extremely unfortunate situation. In light of this tragic event, we encourage individuals with autism and their families who are experiencing a crisis situation to visit beta.samhsa.gov/find-help, or call 1-800-273-TALK (8255).”

With all due respect to Autism Speaks, the premeditated, gruesome, and cold-blooded murder of a 14-year-old is more than an “extremely unfortunate situation.”