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.”