Parent Perspectives

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

At The Huffington Post, Catherine Pearson presents thoughts from autism parents:

The most difficult thing, for me, was getting all of my son's therapies set up. It's very time consuming to wait both for evaluations and openings. Jackson has apraxia of speech along with ASD, and he sees several private speech therapists, as well as the one from his school. With our first speech language pathologist, it only took about two weeks for an evaluation and we were scheduled to start therapy the next week. But with the second, it took three months to get evaluated and get a spot. It's so hard to search for the right help, the help that actually works. And staying strong for your child is a constant challenge. But being completely in love with them is not. -- Amanda, 32, Nevada

My son was just diagnosed as having autism spectrum disorder. I have a degree in special education, and I did my student teaching with seven boys who were all on the spectrum, and were all non-verbal. Leading up to his diagnosis I thought I would be fine. (We had suspected it for about a year.) But when I heard the words "Your son fits the criteria for an autism spectrum disorder diagnosis," I felt like I had been hit by a freight train. I was not okay. And I was not okay that I wasn't okay! I called insurance the next day to start the process of getting him ABA [applied behavior analysis], speech and OT [occupational therapy]. After I got off the phone, I thought about how I cannot imagine navigating that system not knowing what to ask for -- without knowing all the terms and who the good providers in the area are. -- Holly, 27, Washington

As I write in the book:

For children under three, the first stop is an Individualized Family Service Plan (IFSP), which maps out Early Intervention (EI). After age three, children get an Individualized Education Program (IEP) from their local education agency (LEA), that is, their school system. The IEP explains how children will receive a free appropriate public education (FAPE) in the least restrictive environment (LRE) The program may include speech therapy (ST), occupational therapy (OT), physical therapy (PT), adapted physical education (APE), and applied behavior analysis (ABA) interventions including discrete trial training (DTT). Depending on which state they live in, official agencies or insurance companies may also subsidize services from NPAs (nonpublic agencies). As attorney Gary S. Mayerson observes drily: “Given the confusion that all these unhelpful acronyms are causing for parents and professionals, it is not without irony that autism is associated with communication dysfunction.”

Another Study Debunks Autism-Vaccine Link

In The Politics of Autism, I discuss the many, many studies that have debunked the notion of a link between autism and vaccines.

Here is one more.

At Proceedings of the National Academy of Sciences, Bharathi S. Gadad have an article titled "Administration Of Thimerosal-Containing Vaccines To Infant Rhesus Macaques Does Not Result In Autism-Like Behavior Or Neuropathology."  The abstract:

Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder. Some anecdotal reports suggest that ASD is related to exposure to ethyl mercury, in the form of the vaccine preservative, thimerosal, and/or receiving the measles, mumps, rubella (MMR) vaccine. Using infant rhesus macaques receiving thimerosalcontaining vaccines (TCVs) following the recommended pediatric vaccine schedules from the 1990s and 2008, we examined behavior, and neuropathology in three brain regions found to exhibit neuropathology in postmortem ASD brains. No neuronal cellular or protein changes in the cerebellum, hippocampus, or amygdala were observed in animals following the 1990s or 2008 vaccine schedules. Analysis of social behavior in juvenile animals indicated that there were no significant differences in negative behaviors between animals in the control and experimental groups. These data indicate that administration of TCVs and/or the MMR vaccine to rhesus macaques does not result in neuropathological abnormalities, or aberrant behaviors, like those observed in ASD.

Feld to Step Down from Autism Speaks

In The Politics of Autism, I discuss advocacy groups, particularly Autism Speaks. Michelle Diament reports at Disability Scoop:

Autism Speaks said Monday that Liz Feld will stay on as president through June 2016 and the nonprofit is now searching for her replacement.

“When I was named president of Autism Speaks, I committed to serving until 2016,” Feld said in a statement. “I am making this announcement now in the interest of providing the board of directors and the organization the opportunity for a responsible and successful leadership transition. I remain focused on ensuring solid success for our critical projects and initiatives in the months ahead.”

The organization’s board said it has hired Spencer Stuart, an executive search firm, to hunt for a new leader.

Feld joined Autism Speaks in 2012 as executive vice president of strategic communications and was quickly promoted to president in an abrupt change that year.

Induced Pluripotency

In The Politics of Autism, I discuss medical research.  A recent post explains that a shortage of cadaver brains is an obstacle, but drug companies may be finding a way around it.

Simeon Bennett reports at Bloomberg:

Scientists have found a way to peer into the brains of people with autism: grow them in a dish.

Aided by stem cell technology that earned Japanese researcher Shinya Yamanaka the Nobel Prize in Medicine three years ago, companies including Novartis AG, Roche Holding AG and Johnson & Johnson are gaining new insights into the triggers of a social disorder that afflicts one in 68 people.

The technique known as induced pluripotency has spurred drugmakers to fund a quest for treatments, a sea change for a disease previously viewed as too elusive to tackle.

Thanks to Yamanaka, scientists can now harvest skin samples from the inner arms and legs of patients and grow them into small pieces of brain-like tissue, allowing them to study how genetic mutations affect brain behavior and gauge the response to drugs.

"The first mover in this space is really going to transform the company that gets it,” said Rob Ring, the former head of Pfizer Inc.’s now-disbanded autism research unit. “It’s worth the shot.

...
While drugmakers don’t disclose how much they devote to autism research, the U.S. National Institutes of Health is spending $190 million this year, a sum split between 480 different grants whose topics range from anxiety management to better ways of measuring treatment outcomes. Two decades ago, the amount the NIH allocated to autism research was $11 million, according to Ring, who is now chief science officer at New York-based Autism Speaks.

Brains for Research

Uncertainty is a major theme of The Politics of Autism.  The Wall Street Journal, Barbara Sadick writes of a major reason for this uncertainty, and about efforts to address it.

One reason autism research hasn’t made more progress is a shortage of brains available for study. Brain scans can only take researchers so far—they need to work with donated brains to gain a deeper understanding of the condition. 

That’s why four research institutions have formed the Autism BrainNet to reach out to potential donors. 

The Centers for Disease Control and Prevention estimates that about one in 68 children in the U.S.has autism spectrum disorder, or ASD, which involves impairments in social communication and repetitive behaviors, and is often associated with general intellectual disability and other medical conditions. 

Autism BrainNet is a consortium of the Icahn School of Medicine at Mount Sinai in New York, Beth Israel Deaconess Medical Center in Boston, the University of Texas Southwestern Medical Center in Dallas and the University of California, Davis. It has launched an “It Takes Brains” campaign aimed at potential donors of both autistic and healthy brains.

Grandin and Carley on Employment

In The Politics of Autism, I discuss education and employment.

At the Huffington Post, Michael John Carley talks with Temple Grandin.

For those spectrum kids with average to above-average IQs, whose main challenges have to do with socialization, a university education will probably be the best fit. But for individuals without these advantages, yet who are kids who like to build and fix things, their chances for true independent living might skyrocket if they abandoned the classes of their peers and learned a trade. Temple and I agreed that this would be a wonderful change in school programming. 

Oh, and lastly; neither of us hear from many spectrum folks who say they love dress clothes, or small talk at the water cooler.

Autism Speaks Donations Down

In The Politics of Autism, I discuss advocacy groups. Michelle Diament reports at Disability Scoop:

Fundraising totals are down at the nation’s largest autism advocacy group, according to newly released financial data.

Autism Speaks took in more than $57.5 million in 2014, some $6.2 million less than the group netted the year prior. 

The figures were made public this month in the organization’s tax filing for the 2014 calendar year, which the nonprofit is required to disclose under federal tax rules. 

Documents show that Autism Speaks doled out $15.7 million in grants and spent $23 million on compensation for its 277 employees. The group claims 450,000 volunteers. 

CJ Volpe, a spokesman for Autism Speaks, attributed the decline in donations to fewer major fundraising events in 2014.

Effort to Bring Down CA Vaccine Law

In The Politics of Autism, I discuss anti-vaccine activism.

Jeremy B. White reports at The Sacramento Bee: that opponents of Senate Bill 277, the California vaccine law, are trying to get enough signatures for a referendum to overturn it.

Qualifying a referendum for California’s statewide ballot is difficult, and few supporters of SB 277 believe referendum backers have the resources to collect 365,880 signatures by Sept. 28...

Former gubernatorial candidate Tim Donnelly is helping lead the effort. Donnelly says that organizers are getting help form chiropractors and churches.

Both make natural allies. During the SB 277 fight, the California Chiropractic Association offered opponents the sole source of institutional support, seeking to counter formidable groups like the California Medical Association by testifying against the bill, collecting donations and lining up witnesses in opposition.

Now chiropractic offices across the state have agreed to help distribute petitions. About 700 different offices are participating, said San Diego chiropractor and organizer Jennifer Lovern.

“Our clientele tend to be naturalistic. They look at health in a more holistic way rather than just running to Kaiser to get a prescription,” Lovern said. “It’s kind of a no-brainer to have the petitions in that type of office.”

Eliminating California’s personal belief exemption will also prevent parents from skipping vaccines for religious reasons, making California one of just three states to do so. While few organized religions explicitly bar vaccines, opposition to SB 277 has resonated with faith groups around the state, with places of worship also becoming signature-gathering centers.

Chiropractors are not physicians.  Some of them peddle quack autism cures. 

ad more here: http://www.sacbee.com/news/politics-government/capitol-alert/article36312792.html#storylink=cpy

Services for Preschoolers

In The Politics of Autism,  I discuss early childhood education.

At The Journal of Autism and Developmental Disorders, Lucy A. Bilaver, Lisa S. Cushing, and Ann T. Cutler have an article titled "Prevalence and Correlates of Educational Intervention Utilization Among Children with Autism Spectrum Disorder."  The abstract:

This study examined the prevalence and correlates of educational intervention utilization among U.S. preschool aged children with autism spectrum disorder (ASD) prior to recent policy changes. The analysis was based on a nationally representative longitudinal survey of children receiving special education services during the 2003–2004 school year. All children with parent or teacher identified ASD over a 3-year study period were analyzed. Outcomes included utilization of speech therapy, occupational therapy, behavior therapy, and mental health services by service sector. The analysis revealed low rates of behavioral therapy and mental health services. Parents reported that the overwhelming majority of services were received inside school only. This study identified gaps in the provision of services for young children with ASD.

From the study:

Prior to policy designed to increase access to ASD services, the vast majority of children with ASD receiving preschool special education services did not receive behavioral therapies or mental health services either inside or outside of school. We find that only 5.6 % of 3-5 year olds with ASD received behavior therapy and 11.3 % received some mental health or social work service during the 2003–2004 school year. In contrast, we find that large proportions received speech and occupational therapy and did so predominately at school. The low rates of behavioral therapy are particularly troubling given that these services, particular early intensive behavioral interventions (EIBI), are the most widely recommended evidence-based treatment for ASD (Lovaas 1987; McEachin et al. 1993; Rogers 1998; Smith et al. 1997; Vismara and Rogers 2010).

...
Receiving service outside of school was relatively rare prior to state insurance mandates. The highest percent of children receiving service both inside and outside of school was just 13 % (speech therapy at wave 3). At the time of data collection for the PEELS, only one state had an autism insurance mandate in effect. Given the very low rates of service use outside of school, how much would mandates need to increase access to reduce unmet need for services? Research on the causal effect of autism insurance mandates
is in its’ infancy. To our knowledge, a recent analysis by Chatterji et al. (2015) is the first to use national data to address this question. Using multiple years of data from the National Survey of Children with Special Health Care Needs, the authors find no statistically significant relationship between state ASD mandates and financial burden,access to care, and unmet need for services. Because the survey captures nformation about unmet need for children with all types of special health care needs, questions onservices do not specify ABA or other behavioral therapies. Instead, the authors examined whether state ASD mandates were associated with unmet need for speech, occupational,or physical therapy or unmet need for mental health care or counseling due to costs or insurance issues. They find no effect.

• Chatterji, P., Decker, S. L., & Markowitz, S. (2015). The effects of mandated health insurance benefits for autism on out-of-pocket costs and access to treatment. Journal of Policy Analysis and Management: [the Journal of the Association for Public Policy Analysis and Management], 34(2), 328–353.
• Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3–9.
• McEachin, J. J., Smith, T., & Lovaas, O. I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal of Mental Retardation: AJMR, 97(4), 359–372. (discussion 373–391. Accessed 24 February 2011).
• Rogers, S. J. (1998). Empirically supported comprehensive treatments for young children with autism. Journal of Clinical Child Psychology, 27(2), 168. doi:10.1207/s15374424jccp2702_4.
• Smith, T., Eikeseth, S., Klevstrand, M., & Lovaas, O. I. (1997). Intensive behavioral treatment for preschoolers with severe mental retardation and pervasive developmental disorder. American Journal of Mental Retardation: AJMR, 102(3), 238–249. doi:10.1352/0895-8017(1997)102\0238:IBTFPW[2.0.CO;2
• Vismara, L. A., & Rogers, S. J. (2010). Behavioral treatments in autism spectrum disorder: What do we know? Annual Review of Clinical Psychology, 6, 447–468. doi:10.1146/annurev.clinpsy. 121208.131151. 

Carley Recalls the 2012 Hearing

At The Huffington Post, Michael John Carley recalls an infamous congressional hearing.  (In The Politics of Autism, I quote his testimony.)

We must understand: The comments of Obama, McCain, Hilary, Trump...etc. are mere reflections of the DC-area's widespread ignorance on this subject. That government can be so unintelligent seems like a painfully easy joke to make, but . . . it must be made! Ever seen the only Congressional Hearings ever held on autism (i.e. got 3-1/2 hours) from 2012? A plethora of Representatives espouse this lunacy. Watch for Rep. Dan Burton's (R-IN) movie "proving" a vaccine-autism connection by virtue of one of the most dogmatic and clumsy videos you'll ever see. Lastly, the meeting was Chaired by Darrell Issa (R-CA), an ally of The Canary Party, which pretty much does nothing other than support vaccine-causes-autism theories. If it wasn't so horrifying, you'd be dying of laughter.

I was one of two people on the spectrum who testified later on in those hearings (I got cut off too, partially because I was over time, but partially because I complained about the hearing's emphasis on vaccines), and as such I can promise you that many congressional reps that you'll see screaming at the CDC officials, should you so view these hours, left immediately after screaming/pandering for the crowd (C-Span cameras rarely want you to see how empty those seats are). And as you watch, think of how differently things might have gone--for our country--had the CDC officials being berated shown the slightest dignity or responsibility, and shouted back.

It's a polling game to Washington. Nothing more. So don't get worked up over it. Heck, the National Institute of Health (NIH) allowed this loud minority to bully its way into a $30 million dollar study on Chelation Therapy, when every scientist awarding them so much of our tax money knew perfectly well that they were pissing it away (and if you understand how Chelation works, you'll get that unfunny joke). The funding was later retracted, thankfully.

Mediation in Bay Area Nuisance Suit

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

Tracy Seipel reports at The San Jose Mercury News:

In a quickly dispatched hearing on Tuesday in a case that has riled Bay Area parents of developmentally disabled children, a Santa Clara County judge sent an autistic boy's parents and two Sunnyvale couples who claim the boy is a public nuisance back to mediation.

In the Civil Court hearing where Sunnyvale neighbors sought the boy's medical and school records, Superior Court Judge Maureen Folan admonished them, asking the two couples and the parents their ultimate goal: To find a solution or continue with litigation?

All the families said they wanted a solution so all agreed to the judge's suggestion that they arrange mediation with another judge, which is expected to happen in October.

...
Jill Escher, president of the San Francisco Bay Area Autism Society, and a parent of two autistic children, has called the lawsuit an outrage.

She and other parents say they fear that it the suit is successful, families with autistic children could be run out of neighborhoods everywhere, based on a "public nuisance'' claim.

In a blog post on the society's website Monday, Escher said that despite what the plaintiffs say, this case is very much about autism -- and discrimination.

"We all have a right to be protected from harm, I could not agree more,'' Escher wrote.

"But given that the family left the neighborhood a year ago, that no adverse events are alleged to have occurred for more than a year and a half, and that no actual injuries are even alleged as to the plaintiffs, this case is no longer about reasonable steps to ensure protection from a developmentally disabled child.

"By seeking draconian forms relief including a "public nuisance" declaration, the case has moved squarely into the realm of disability eviction and discrimination. This case is very much about autism.''

Autism and Presidential Politics

In The Politics of Autism, I discuss the issue's role in campaigns.

The Chicago Tribune editorializes:

Which candidate for president made the following statement about childhood inoculations? "We've seen just a skyrocketing autism rate. Some people are suspicious that it's connected to the vaccines."

Or this one? "It's indisputable that (autism) is on the rise amongst children, the question is what's causing it. And we go back and forth and there's strong evidence that indicates that it's got to do with a preservative in vaccines."

If you answered Donald Trump, nice try, but wrong. The first one was made by Barack Obama when he ran in 2008. The second came from his opponent, John McCain.

While running for president in 2011, Rep. Michele Bachmann, R-Minn., raised similar doubts about the HPV vaccine, recalling a woman who approached her after a debate. "She told me her daughter suffered mental retardation as a result of that vaccine," Bachmann said.

Maybe it's time for political parties to require a science course for anyone who wants their nomination. Misinformation about vaccines has become a stubborn, recurring feature of presidential campaigns.

Dr. Marc Siegel writes at Slate that Ben Carson and Rand Paul mildly disagreed with Trump:

Unfortunately, Carson went on to promote another fear-driven myth about vaccines. He added that “we are probably giving way too many in too short a period of time.” There is not a shred of scientific evidence to back this up. Rand Paul, an ophthalmologist and another candidate on the stage, echoed his fellow doctor’s concerns about bunching vaccines.

Both of these physicians have had great accomplishments in the medical world, Carson as a pioneer neurosurgeon and Paul as a successful eye surgeon. As a fellow physician it was unsettling to me to see them speculating wildly outside their areas of expertise, especially in the wake of Trump’s dangerous comments. They should have known better.

Scientists continually reassess whether a contagious disease is enough of a threat to prompt a national vaccination campaign. Vaccines and the way they are scheduled and bunched are rigorously tested for safety and efficacy. In fact, immunizations are some of the most-tested medical interventions in use today.

There is also simply no evidence that too many vaccines over-stimulate the immune system, a common fear among parents. In fact, young children encounter thousands of far more powerful immune-stimulating microbes in between vaccinations than during them.

Vaccines, Autism, and the Huffington Post

In The Politics of Autism, I discuss media coverage.

Julia A. Seymour writes at Newsbusters:

The healthy living editor for The Huffington Post reacted to the CNN GOP debate by criticizing Donald Trump and others for “peddling dangerous and bad ideas about health,” because of their remarks about vaccinations.

Criticism of “anti-vaccination” stances is rich coming from Huffington Post, which has repeatedly been a platform for anti-vaxxer opinions including actor Jim Carrey’s. In 2009, Carrey insisted that there was still uncertainty about the safety of vaccinations. Over the years, others also stoked fear about vaccination safety including David Kirby, Dr. Bob Sears and comedian Bill Maher. 

See also Huff Poi tems by Kirby  Jenny McCarthy, and RFK, Jr.

To its credit, however, the Huff Po has also run many responsible articles on autism.

Autism and the Presidential Campaign

This morning, The Hill ran the piece below, which deals with some of the topics I cover in The Politics ofAutism.

During the recent GOP debate, , Donald Trump suggested that kids are developing autism because they are getting too many shots too soon. “Just the other day, two years old, two and a half years old, a child, a beautiful child went to have the vaccine, and came back, and a week later got a tremendous fever, got very, very sick, now is autistic.”

Curiously, Trump used almost the same words three years ago. “It happened to somebody that worked for me recently,” he said on Fox News in 2012. “I mean, they had this beautiful child, not a problem in the world, and all of the sudden they go in and they get this monster shot…then all of the sudden the child is different a month later.”

Wherever this mysterious anecdote came from, Trump was talking nonsense. Multiple scientific studies have shown that there is no connection between autism and the vaccine schedule, or any individual vaccine. The idea of such a linkage has been circulating for years because of a 1998 study that turned out to be fraudulent. The British medical journal that ran the piece later retracted it, and its lead author lost his medical license.

Trump is hardly the first politician to spout misinformation – but in this case, it is downright dangerous. If parents take him seriously and delay vaccinations, their children could catch the diseases that the vaccines prevent. And some of these diseases can be deadly.

Trump also erred on the broader issue of autism. “Autism has become an epidemic,” he said. “Twenty-five years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control.” Trump unintentionally fingered a reason why we have to be cautious about declaring an “epidemic.” Thirty-five years ago was when the American Psychiatric Association’s manual first listed autism as a distinct category. And twenty-five years ago was when federal law first required the Education Department to gather national data on the number of students with autism.

When you start counting something, you usually find more of it. In this case, much of the apparent increase in autism involves better identification of people who previously would have gotten a different label. Scientists at Penn State University found no overall increase in the number of students in special education. As the number of students with an autism label has gone up, the number with an intellectual disability label has gone down.

Aside from improvements in reporting, has there also been any true increase in the prevalence of autism? Nobody knows for sure, in part because we lack good data from the past. Indeed, the most important thing for presidential candidates to know about autism is how much we don’t know.

Vaccines are one of the few purported causes that scientists have ruled out. Autism tends to run in families, so genetics probably has something to do with it. Beyond that, the possibilities include such disparate things as paternal age, maternal age, pollution, and immune responses to viruses. And until scientists know what causes autism, when and how it starts in the developing body, and how it expresses itself over time, they will have difficulty in devising medical responses. Studies show that certain behavioral and educational programs can help with symptoms, but there is little research showing how much these interventions can improve quality of life in the long run.

Information on the workings of autism policy is just as sparse. In a recent article, autism experts Paul T. Shattuck and Anne M. Roux asked us to picture a big company that tried to do business without financial statements, that is, without data on sales, spending, customer experience, or assets. Such a firm would fail. “Yet, this state of affairs is commonplace in many autism services. At a population level, we are almost completely unable to clearly describe the resources expended on services or measurable indicators of the population outcomes we hope to influence -- including the employment rate.”

So the major lesson is that we need more research – not just on biology, but on effective ways in which policy can help autistic people in the here and now. Presidential candidates should address this issue. Above all, they need to tell the truth.

Pitney, professor of government at Claremont McKenna College, is the author of The Politics of Autism: Navigating the Contested Spectrum (Rowman and Littlefield).

"Public Nuisance"

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

Tracy Seipel writes at The San Jose Mercury News:

When neighbors complained about Vidyut Gopal and Parul Agrawal's young son with autism pulling children's hair, biting a woman and other menacing behavior, the couple said they did what they could to make it stop.

They hired caregivers, gave the boy special medication, and put him in therapeutic classes. But instead of bringing calm to Arlington Court, the Silicon Valley couple got slapped with a lawsuit that called their son a "public nuisance" -- and ultimately drove them out of their home of seven years.

Now, Gopal and Agrawal find themselves in the midst of a legal battle that has sparked outrage among parents of children with autism everywhere, and raised troubling questions about how to coexist with neighbors with special needs kids.

"This has been pretty devastating for us, but we are doing our best to cope with it," Gopal, an engineer at a Silicon Valley company, said Thursday.

The lawsuit -- filed last summer by two couples who lived in homes that flanked Gopal and Agrawal's house -- alleges that the boy's disruptive behavior also created an "as-yet unquantified chilling effect on the otherwise 'hot' local real estate market" and that "people feel constrained in the marketability of their homes as this issue remains unresolved and the nuisance remains unabated."

Unfortunately, such things have happened before. 

The Autism Society of the San Francisco Bay Area reports:

Just recently, to support their contention that the young boy’s autism behaviors constitute a “public nuisance” that must be “abated,” the Plaintiffs issued third-party subpoenas seeking his private disability-related information from a variety of sources including school district records, private therapy records, regional center files (from the San Andreas Regional Center, the agency charged with serving people with developmental disabilities in the county), and even records from a special-needs summer camp and a parent support group.

A hearing on Defendants’ motion to quash those highly invasive subpoenas is scheduled for September 22, 2015 at 9am. Details:

Case: Flowers v. Gopal, Santa Clara County Superior Court Case No. 114CV266515
Hearing: Motion to quash third-party subpoenas
Date: Tuesday, Sept 22, 2015
Time: 9:00am
Location: Department 8, Santa Clara County Superior Court, 191 North First Street, San Jose, CA 95113
Presiding Judge: Honorable Maureen A. Folan
[Please note it is unclear when these motion will come up on the court’s calendar, it may not be heard until well after 9:00am.]

While a court hearing is obviously not an appropriate place to voice community concerns, community members are free to attend if they would like to learn more about this matter or simply lend moral support for the Defendant autism family.

This legal battle is occurring against the background of dramatically increasing autism cases in our state and within Santa Clara County as well. Santa Clara County in 1990 counted just 147 Department of Developmental Services-eligible autistic individuals, but today has more than 3,200. California cases of more severe forms of autism (DDS-eligible) has soared more than 25-fold since the 1980s, and now surpass 80,000 individuals. Autism is now found in all our neighborhoods. But if discriminatory lawsuits like this—where community members can sue autism families for autism-related behaviors (particularly where the $25k jurisdictional threshold is clearly not met)—proliferate, the result could be profound:

• Autism families could be driven to homelessness and bankruptcy while they defend themselves against such suits.

• Almost any person with autism who displays aberrant behaviors (and that’s most of the DDS autism population) could be declared a “public nuisance” based on neighbor complaints, and barred from living in the community.

• Autism families would lose their rights to privacy, as any community member who feels aggrieved by autism behaviors could seek the disabled child’s most personal and private medical, therapy, school and disability records.

• It could empower a new breed of “private prosecutors” against the developmentally disabled. In this case, before filing their Complaint, the Plaintiff neighbors had asked the local police and Child Protective Services to intervene against the autism family. Those authorities declined to take action against them, as they found nothing warranting such action.

• Lawsuits like this could essentially nullify California’s nascent efforts to foster increased community-based, integrated housing for the developmentally disabled, including those with autism. Federal policy requires that individuals with developmental disabilities have full access to the community and that communities may not discriminate against them; the California Government Code mandates that municipalities plan for inclusive community housing for citizens with developmental disabilities; and the state’s Lanterman Act provides that individuals with developmental disabilities have a right to live in the community like any non-disabled person. Facile lawsuits such as this, if allowed to stand, could easily kill efforts to create more autism and disability housing in our communities.

• If permanent injunctive relief such as that sought by the Plaintiffs is awarded, it could turn autism families into criminals for minor behaviors of their children. Court-ordered mandates prohibiting a broad array of child behaviors means autism parents and caregivers would live in constant fear that “one false move” by their significantly disabled charges could turn them, literally, into criminals subject to contempt of court punishments, including imprisonment.

Finally, we would like to commend the autism family targeted by this lawsuit. They have handled this attack with incredible strength as well as a sense of responsibility to the entire autism community, knowing what is at stake.

Autism in the GOP Debate

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

Steve Sternberg writes at US News & World Report:

Three Republican candidates' assertions about childhood vaccines offered a revealing – and deeply dismaying – glimpse of how they'd perform in the White House, leading vaccine experts said Thursday after the second presidential debate.

"What you hear is so badly reasoned, so poorly thought out – it makes you wonder: 'Is that how they'll manage foreign policy?'" says Dr. Paul Offit, director of the Vaccine Education Center at The Children's Hospital of Philadelphia.

The discussion began Wednesday night when debate moderator Jake Tapper of CNN asked candidate Ben Carson, a former pediatric neurosurgeon, whether he believed real estate mogul Donald Trump should stop making statements linking vaccines to autism.

The question touched off a rambling exchange involving Carson, Trump and Kentucky Sen. Rand Paul, also a doctor. It not only resurrected the vaccine-autism theme, but also raised concerns about whether some vaccines are more important than others and about the spacing of the vaccines offered to children before they reach adolescence.

Trump has repeatedly declared vaccines safe while – often in the same breath – raising the specter of autism, an association that emerged in a flawed, and since retracted, 1998 research study. The connection has since been disproved in dozens of scientific studies. For instance, an analysis of 67 research studies released last year in the journal Pediatrics found strong evidence that the measles, mumps and rubella vaccine – impugned by the debunked 1998 study – does not cause autism in children and showed that vaccine-related side effects are rare.

Nevertheless, in remarks during the debate, Trump offered an account of an unnamed "child, a beautiful child" who "went to have the vaccine, and came back, and a week later got a tremendous fever, got very, very sick, [and] now is autistic."

He used the same language three years ago:

"It happened to somebody that worked for me recently. I mean, they had this beautiful child, not a problem in the world. And all of a sudden, they go in, they get this monster shot. You ever see the size of it? It's like they're pumping in—you know, it's terrible, the amount. And they pump this into this little body. And then all of the sudden, the child is different a month later. And I strongly believe that's it

Preschool Inclusion

In The Politics of Autism, I discuss early childhood education.

Michelle Diament reports at Disability Scoop:

Federal officials say that all children with disabilities should be able to attend preschool alongside their typically-developing peers.

Nearly four months after requesting public feedback on the issue, the U.S. Departments of Education and Health and Human Services are jointly issuing guidance to states, school districts and early childhood providers urging them to make a place for kids with special needs.

From the joint statement: 

Research supports the benefits of inclusion for young children with and without disabilities. Studies have shown that individualized evidence-based strategies for children with disabilities can be implemented successfully in inclusive early childhood programs. 7,8 Children with disabilities, including those with the most significant disabilities and the highest needs, can make significant developmental and learning progress in inclusive settings.9,10,11 Some studies have shown that children with disabilities in inclusive settings experienced greater cognitive and communication development than children with disabilities who were in separate settings, with this being particularly apparent among children with more significant 3 disabilities.12,13 Further, children with disabilities tend to have similar levels of engagement as their typically developing peers, 14,15 and are more likely to practice newly acquired skills in inclusive settings as compared to separate settings. 16 Likewise, research suggests that children’s growth and learning are related to their peers’ skills and the effects are most pronounced for children with disabilities.17 Highquality inclusion that begins early and continues into school likely produces the strongest outcomes. Studies have shown that children with disabilities who spend more time in general education classes tend to be absent fewer days from school and have higher test scores in reading and math than those who spend less time in general education classes, 18, 19 and spending more time in general education classes was related to a higher probability of employment and higher earnings.20 In addition to making learning and achievement gains, children with disabilities in inclusive early childhood programs also demonstrate stronger social-emotional skills than their peers in separate settings. 21 These social benefits are robust and can continue into elementary school and beyond.22 Studies have found that children with disabilities in inclusive classrooms demonstrated more social interactions with peers with and without disabilities, had larger networks of friends, and were more socially competent compared to children in separate settings. 23,24,25, 26, 27 Importantly, while studies indicate that inclusive services produce benefits for children with disabilities, these desired outcomes are achieved only when young children with disabilities are included several days per week in social and learning opportunities with typically developing peers, 28 and specialized instructional strategies are used to meet children’s individual needs.29 Systems supports such as resources for professional development, ongoing coaching and collaboration, and time for communication and planning are critical to ensure that programs and personnel can adequately meet the needs of individual children.30,31 Additionally, the developmental benefits of early childhood inclusion can be lost if children are placed in separate settings in preschool, kindergarten, and elementary school. 32 Inclusion in early childhood settings followed by inclusion in elementary school can sustain these developmental gains.

More Doubts About the GFCF Diet

As I explain in The Politics of Autism: Navigating the Contested Spectrum, questionable approaches such as the gluten-free/casein free diet and chelation fill the vacuum caused by the basic uncertainty surrounding the issue.

At The Journal of Autism and Developmental Disorders, Susan L. Hyman and colleagues have an article titled, "The Gluten-Free/Casein-Free Diet: A Double-Blind Challenge Trial in Children with Autism." The abstract:

To obtain information on the safety and efficacy of the gluten-free/casein-free (GFCF) diet, we placed 14 children with autism, age 3–5 years, on the diet for 4–6 weeks and then conducted a double-blind, placebo-controlled challenge study for 12 weeks while continuing the diet, with a 12-week follow-up. Dietary challenges were delivered via weekly snacks that contained gluten, casein, gluten and casein, or placebo. With nutritional counseling, the diet was safe and well-tolerated. However, dietary challenges did not have statistically significant effects on measures of physiologic functioning, behavior problems, or autism symptoms. Although these findings must be interpreted with caution because of the small sample size, the study does not provide evidence to support general use of the GFCF diet.

Life After High School in Texas

In The Politics of Autism, I discuss autistic adults and opportunities for higher education.

At The Valley Star in Harlingen, Texas, special ed teacher Pamela Gross Downing writes about what happens to autistic people after they turn 22.

For those children with severe and profound disabilities, the choices are more limited. Ideally, families with special needs children have registered their son’s or daughter’s name with Tropical Texas Behavioral Health early in their child’s life, certainly by elementary school.

Parents need to be aware of all the programs available for their children including DADS, Department of Aging and Disabilities Services. Blanca Gutierrez, at 547-5512, from Tropical Texas Behavioral Health, is a wonderful resource in helping families weave through the limited programs that are available to special needs individuals. The reason families should register early is the waiting list for some programs such as assisted living residences can be as long as 15 to 20 years. Plus, monies periodically become available for therapy assistance and respite care. It is important to have your child registered with Tropical Texas Behavioral Health to ensure that he or she receives the full possible benefits that become available over time.

For those students with mild to moderate cognitive delay, more and more options are becoming available once they reach adulthood. A wonderful program called “Aggies Elevated” at Utah State University in Logan, Utah was highlighted in the News 2 You newsletter recently. That program caters specifically to students with special needs with intellectual delays who want to go to college. About 200 colleges in the U.S. have similar programs including eight in Texas.

Aggies Elevated is a 2 year college program where children go to prepare for their future. The students learn about different jobs that might be of interest to them. Do they like working with animals, stores, food, plants or something else? They get an opportunity to work in internships for a while to find out what they like to do. They also get a chance to experience college life at their level just like other college students.

...
The ten programs in Texas vary including those that are similar to Aggies Elevated to others which are more geared to solely vocational training. The website www.thinkcollege.net provides a wonderful place to compare these 200 colleges for special needs children. The programs in Texas include Texas A&M PATHS, Texas Tech CASE, Austin Community College STEPS, St. Edward’s University GO Project; West Texas A&M WTLC; Lone Star College CCDEL; Houston Community College Central VAST and Houston Community College Northwest VAST. The first two programs have residential settings associated with the university. For more detailed information, search Think College to compare programs all across the country and their costs.

Legislation on Special Needs Trusts

In The Politics of Autism, I discuss special needs trusts.

A release from Senator Charles Grassley (R-IA):

The Senate has passed bipartisan legislation from Sen. Chuck Grassley of Iowa, Sen. Bill Nelson of Florida and Sen. Debbie Stabenow of Michigan to make it easier for individuals with disabilities to set up a special needs trust for themselves. Under current law, these individuals cannot set up such a trust. This bill fixes that discriminatory exclusion.

“Those who want and need to set up a trust to help pay for their care shouldn’t have to jump through hoops to do it,” Grassley said. “This bill allows individuals to act in their own interests with their own assets without having to rely on a family member or the courts.”

“Going this extra step to help persons with special needs is the right thing to do,” said Nelson.

“People with disabilities deserve to be treated with dignity, which includes having control of their own care,” said Stabenow. “This bill will help individuals manage their own finances while still having access to critical benefits like Medicare.”

The Senate passed the Special Needs Trust Fairness Act (S. 349) by unanimous consent this week. A companion bill is pending in the House of Representatives.

A special needs trust allows for a person with special needs to manage his or her assets without compromising access to certain government benefits, primarily Medicaid and Supplemental Security Income (SSI). To qualify for SSI, which helps low income people with special needs, an individual with personal assets greater than $2,000 is required to put those assets in a special needs trust. Under current law, the individual must rely on a parent, grandparent or the court to create such a trust. Court costs might consume assets that otherwise could be used for the individual’s care, and family members might not be available. The bill removes the unfair burdens on individuals simply seeking to manage their own assets.

The Finance Committee passed the Special Needs Trust Fairness Act in June. Grassley, Nelson and Stabenow serve on the committee. Grassley is a senior member and former chairman.

Regulatory Actions

In The Politics of Autism, I discuss the rights of autistic people.  Autism Speaks reports:

The U.S. Department of Transportation (DOT) has issued a new guide detailing rules for air carriers accommodating families and individuals with autism.

The Air Carrier Access Act details rules for airline accommodations and protects individuals with disabilities in air travel.

For many families and individuals with autism, traveling requires certain accommodations from the airline industry to provide safe, comfortable flight. For example, the guideline explains that airlines must provide accurate information about what accommodations they can provide individuals with disabilities. It also suggests informing the airline how it may assist you. The airline may be able to provide health, safety, dietary, or sensory accommodations to make travel easier.

In May, a 15-year-old with autism and her family were allegedly removed from a United Airlines flight after experiencing difficulties in accessing needed accommodations. The guideline details when an airline may deny boarding or remove a passenger with a disability.

Disability Scoop reports:

The Obama administration is taking new steps to ensure that people with disabilities don’t face discrimination at the doctor’s office.

The U.S. Department of Health and Human Services has put forward new regulations clarifying protections for people with disabilities when it comes to health care and insurance coverage.

Specifically, the proposal published Tuesday in the Federal Register mandates that health care providers “make reasonable modifications in policies, practices or procedures when necessary to avoid discrimination on the basis of disability.”

Optimal Outcomes Update

In The Politics of Autism, I talk about outcomes.

Siri Carpenter writes at Slate about the "optimal outcomes" study.

More evidence that some children can outgrow an autism diagnosis followed. In a 2014 study in the Journal of Child Psychology and Psychiatry, [Catherine] Lord and her colleagues reported results from 85 children with autism they had followed from ages 2 through 19. The team found that of the 32 children in the study who do not have an intellectual disability, eight—all boys, and just 9 percent of the original 85 children—no longer met diagnostic criteria for autism by age 19 and required no extra support. (Six of the eight boys in this “very positive outcome” group retained their diagnoses until they were at least 14.)

Fein’s and Lord’s studies don’t offer many clues as to why some children outgrow their autism. Those in Fein’s optimal outcome group had slightly milder social symptoms in early childhood than did their peers whose autism did not change, but their early profiles were otherwise largely the same. Similarly, Lord and her colleagues found that children who later lost their diagnoses were no less impaired than others at age 2.

* * *

Early access to treatment may have something to do with these outcomes: In an analysis last year, Fein’s group found that, on average, children in the optimal outcome group had received earlier and more intensive therapy than children who kept their autism diagnoses. About 40 percent of children in the optimal outcome group received ABA therapy between ages 2 and 2 1/2, compared with only 4 percent of children who did not lose their diagnoses. In Lord’s study, all eight children who no longer met autism criteria had received treatment by age 3, compared with only half the children who continued to have symptoms.

Because neither Fein’s nor Lord’s studies randomly assigned children to receive early intervention or not, it’s impossible to say whether or how much the therapy plays a role, however. “Most kids are not going to make this dramatic progress and lose the diagnosis, even with the earliest, most intense services,” cautions Fein.

One more time: The study does not use terms such as "outgrow" or "grow out of," which would suggest that the process is automatic, like losing baby teeth. The New York Times quotes lead author Deborah Fein:

Dr. Fein emphasized the importance of behavioral therapy. “These people did not just grow out of their autism,” she said. “I have been treating children for 40 years and never seen improvements like this unless therapists and parents put in years of work.” [emphasis added]

EXPANDability

In The Politics of Autism, I discuss employment of people with autism, citing Michael Bernick's excellent book on the topic.  Bernick writes at Fox and Hounds:

[W]hile the empowerment rhetoric of neurodiversity is finding an audience, there remains a big gap between the rhetoric of valuing adults with brain-wiring differences and the realities of the job market in California. Autism is the fastest growing of the neurodiverse conditions in California, and unemployment rates for adults with autism continue to be estimated at over fifty percent. Even as the economy continues to improve, there is a good deal of competition among job seekers for each opening. Neurodiverse adults are not faring well in the competition, and even when hired are not faring well in retention.

EXPANDability, based in San Jose, is one of the leading job training agencies in California serving adults with “disabilities”. Like other local employment agencies serving this population, EXPANDability’s population has shifted considerably in the past decade from individuals with physical disabilities to a larger percentage of individuals with neurological conditions.

EXPANDability is part of the “Autism at Work” program at software giant SAP (the recent Autism at Work hires are shown above) and at Microsoft. Both of these programs have well-developed recruitment and retention structures to employ and retain adults with autism in tech positions. However, despite the extensive publicity both programs have received, the numbers of participants remain modest—the first SAP cycle in 2014 involved nine trainees in the bay Area, while the Microsoft program is starting with 10 participants.

...
There is no quick path going forward to translate neurodiversity rhetoric into an employment reality. The next years will be slow building on a mix of efforts among local agencies, our community colleges and universities, advocates and parents.

Fortunately, there is a richness of thought and activity, already underway among each of these entities in California. EXPANDability is only one of tens of job training agencies in California—ranging from the ARCs and Best Buddies throughout the state, to Resources for Independence Central Valley, Positive Resource Center, and the Cerebral Palsy Center in Oakland –testing measures of placement, retention and workplace culture. EDD meanwhile has its own Disability Employment Accelerator, an applied research effort to place individuals and test approaches.

Oregong Settlement on Sheltered Workshops

In The Politics of Autism, I discuss employment of adults with autism and other developmental disabilities.

A Tuesday release from the US Justice Department:

The U.S. Justice Department announced today, along with private plaintiffs, that it has entered into a proposed settlement agreement with the state of Oregon that will resolve violations of the Americans with Disabilities Act (ADA) and will impact approximately 7,000 Oregonians with intellectual and developmental disabilities (I/DD) who can and want to work in typical employment settings in the community. The private plaintiffs were represented by the Center for Public Representation, Disability Rights Oregon and the law firms of Miller Nash Graham & Dunn LLP and Perkins Coie LLP. The proposed agreement resolves a class action lawsuit by private plaintiffs in which the department intervened. The parties’ proposed settlement agreement must still be approved by U.S. Magistrate Judge Janice Stewart of the District of Oregon, who is presiding over the lawsuit. The agreement will be filed with the court in the coming weeks.

The department alleged that Oregon’s employment services system unnecessarily placed people with I/DD in, or at risk of entering, sheltered workshops instead of in integrated jobs in the community, in violation of the ADA. As interpreted by the Supreme Court’s landmark decision in Olmstead v. L.C., the ADA affords individuals with disabilities the right to receive services in the most integrated setting appropriate to their needs. Sheltered workshops are segregated facilities that exclusively or primarily employ people with disabilities. They are usually large, institutional facilities in which people with disabilities have little or no contact with non-disabled persons besides paid staff. People with I/DD in sheltered workshops typically earn wages that are well below minimum wage, sometimes pennies per hour. By contrast, supported employment services assist people with I/DD to prepare for, gain and succeed in integrated employment at competitive wages. Approximately 450,000 people with I/DD across the country spend their days in segregated sheltered workshops and facility-based day programs. Approximately 1,900 Oregonians with disabilities currently receive services in sheltered workshops. Since the initiation of the lawsuit, approximately 3,900 Oregonians with disabilities have received services in sheltered workshops, and historically hundreds of students have transitioned each year from Oregon public schools to sheltered workshops.

As a result of the proposed settlement, over the next seven years, 1,115 working-age adults with I/DD who are currently being served in segregated sheltered workshops will have opportunities to work in real jobs at competitive wages. Additionally, at least 4,900 youth ages 14 to 24 years old will receive supported employment services designed to assist them to choose, prepare for, get and keep work in a typical work setting. Half of the youth who receive employment services will receive, at a minimum, an individual plan for employment through the state’s Office of Vocational Rehabilitation Services.

The proposed settlement resolves the first class action lawsuit in the nation to challenge a state funded and administered employment service system, including sheltered workshops, as a violation of the ADA’s integration mandate. The class action, Lane v. Kitzhaber (since renamed Lane v. Brown), was filed in January 2012, by eight named individuals and United Cerebral Palsy of Oregon and Southwest Washington, on behalf of themselves and other individuals with I/DD who are in Oregon sheltered workshops or have been referred to sheltered workshops. In March 2013, the Department of Justice moved to intervene in the lawsuit, seeking to vindicate the rights of thousands of individuals with I/DD across Oregon. The department’s claims included that Oregon violated the ADA by unnecessarily segregating adults with I/DD in sheltered workshops and by placing Oregon youth with I/DD at unnecessary risk of segregation in sheltered workshops.

The proposed agreement recognizes that Oregon has made substantial progress in providing employment services to and improving employment outcomes for individuals with I/DD since the filing of the plaintiffs’ complaint and the department’s complaint-in-intervention. In 2013 and 2015, respectively, Oregon’s then Governor John Kitzhaber issued Oregon Executive Orders 13-04 and 15-01 and the state developed Integrated Employment Plans committing to implement strategies for the Oregon Department of Human Services and Oregon Department of Education to improve Oregon’s employment service system for individuals with I/DD. These plans call upon the state to reduce its reliance on segregated sheltered workshops and increase its investment in supported employment services.

“Work is a fundamental aspect of most people's lives,” said Principal Deputy Assistant Attorney General Vanita Gupta, head of the Civil Rights Division. “People with disabilities deserve opportunities to work alongside their friends, peers, and neighbors without disabilities and to earn fair wages. We are pleased that the state of Oregon has fully embraced integrated employment services for people with intellectual and developmental disabilities and we look forward to the new ways people with intellectual and developmental disabilities will be able to contribute to their communities as this proposed agreement is implemented.”

“This proposed agreement not only realizes the requirements of federal law, but just as importantly, it embraces policies and practices to support both youth and adult community members with disabilities to successfully interact and work alongside non-disabled Oregonians,” said Acting U.S. Attorney Billy J. Williams of the District of Oregon. “The implementation of the agreement will bring all of our communities together in recognizing the work capabilities of individuals with intellectual and developmental disabilities.”

The Civil Rights Division enforces the ADA, which authorizes the Attorney General to investigate whether a state is serving individuals in the most integrated settings appropriate to his or her needs. Please visit www.ada.gov/olmstead to learn more about the division’s ADA Olmstead enforcement efforts and www.justice.gov/crt to learn more about the other laws enforced by the Justice Department’s Civil Rights Division.

Research Priorities and Screening

In The Politics of Autism, I discuss screening and medical research.

In fiscal 2013, NIH spent $186 million on autism research. That figure exceeded funding for cerebral palsy ($18 million), cystic fibrosis ($78 million), and Down Syndrome ($18 million).[i] The disparity has caused some resentment. “Why is Down’s syndrome funding low? Autism I think is a big contributor,” Jon Colman, the chief operating officer of the National Down Syndrome Society told Nature in 2007. “It’s dominating priorities.”[ii] Nevertheless, one should not make too much of the notion that autism is crowding out other categories. Autism research accounts for only about .06% of NIH’s annual outlays of $30 billion.

[i] National Institutes of Health, “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC),” March 7, 2014. Online: http://report.nih.gov/categorical_spending.aspx.[ii] Wadman, “Autism Speaks, the United States Pays Up.”

 At The New York Times, Dr. Aaron E. Carroll writes that the United States Preventive Services Task Force has cautioned against universal screening because of the shortage of evidence.  He disagrees.

In 2014, the National Institutes of Health spent $188 million on autism research. This was a fraction of the more than $30 billion spent by the N.I.H. that year. The N.I.H. doesn’t even have a “Fact Sheet” describing its research programs specifically directed toward autism. I searched theN.I.H. RePORT site for any grants given for autism from the Agency for Healthcare Research and Quality in the last five years and found two; I’m a co-investigator on the first.

Further, if you drill down into the autism spending, a lot of it (if not most of it) is directed toward basic science research. It’s looking at what might cause autism, how we could better predict who might develop autism, and what the mechanisms are in the brain that lead to autism. All of that is important work. But very little of the funding is directed toward studying how behavioral and developmental interventions affect children, let alone focusing specifically on those who “screen positive.” No study is coming soon.

The cost of caring for and supporting a person with autism spectrum disorder without an intellectual disability over a lifetime in the United States is $1.4 million. Adding an intellectual disability raises the price to $2.4 million. These are costs above and beyond that of raising a child in general, including special education in childhood and medical care, residential accommodation and productivity losses in adulthood. This means that autism costs the American economy about $175 billion a year.That’s more than the cost of cancer, strokes and heart disease combined.

The task force is trying to demand a high level of evidence before recommending a screening test be performed universally. But without the stamp of approval from the group, payment for screening is not mandated by the Affordable Care Act. And no studies satisfying the requirements of the task force are likely to be done soon. This means that less screening will be done, even though we know three things: Autism is prevalent, screening works, and early intervention seems to make a difference in those found to have the condition.