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Tuesday, May 24, 2016

"Communication Impediment" on Texas Driver Licenses

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly. Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”
Isis Romero reports at KSAT-TV, San Antonio:
A San Antonio family is helping the Texas Department of Public Safety to launch an awareness campaign, about getting a special notice on the back of Texas driver's licenses, for those with speech impediments, autism, or other disabilities.
Sam Allen, and his mother Jennifer, are also working with the Texas DPS to train troopers and other law enforcement officials, on how to recognize and understand autistic drivers.
Sam was diagnosed with Asperger's Syndrome, a form of Autism, at the age of 10.
...

Although he's never been pulled over by law enforcement, Sam said he feels confident having the notice on the back of his license, if he ever does.

"I have kind of a safe feeling with me, knowing communication impediment with me on the back of my driver's license," Sam said.
From the Texas Department of Public Safety:
Texas Transportation Code §521.125 allows the Texas Department of Public Safety to include a notice on the driver license or identification card of those who indicate they have a health condition that may impede their ability to communicate with a peace officer.
The health condition must be supported by a written statement (Physician’s Statement form DL-101) from a licensed physician and presented at the driver license office before the communication impediment notice may be included on the back of the driver license or identification card.
From Aspergers101:

Monday, May 23, 2016

Push for Full Funding of IDEA

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Senator Charles Schumer (D-NY) has written the chair and ranking Democrat of the Senate Appropriations Committee:
Dear Chairman Blunt and Ranking Member Murray,
I write today on behalf of children with autism spectrum disorder and other developmental disabilities to urge you to increase funding for Part B of the Individuals with Disabilities Education Act (IDEA). This program serves one of our country’s most vulnerable populations, yet has never received full funding. Children living with autism and other developmental disabilities have the right to receive the high-quality, comprehensive range of services provided by IDEA.
As you know, the majority of educational services provided to children with developmental disabilities fall under IDEA Part B. This program authorizes grants to states based on the state’s number of children between ages 3-21 and the number of children within that age range living in poverty. When passed into law, Congress authorized IDEA funding equal to 40 percent of the national average per pupil expenditure (APPE) multiplied by the number of children with disabilities served. Unfortunately, IDEA has never received the full appropriation to help ensure that children and families receiving services and supports thrive.
In Fiscal Year 2016, federal funding for IDEA Part B only covered 16 percent of APPE. This means that appropriations fell short of the full funding by approximately $17.85 billion dollars. As the full funding estimate continues to rise, it is critical that we work to close the gap between this and the annual appropriation.
It is important that educational services and resources are available for families and children with autism spectrum disorder and other developmental disabilities.
Unfortunately the ongoing lack of funding for IDEA does not reflect the current need for services. A recent report issued by the Office of Autism Research Coordination and the Interagency Autism Coordination Committee found that only about seven percent of funding for autism research went to the development of services and less than one percent of research funding went to issues that follow people with autism throughout their lifetime.
In order for our nation’s children to thrive, we must invest in services that set them up for success. For this reason, I urge you to decrease the funding gap between the estimated need and the actual funding by increasing appropriations for IDEA Part B. I know you have been working on these issues for some time and I appreciate the opportunity to work with you in supporting this critical funding situation.
Sincerely,
Charles E. Schumer
United States Senator

Sunday, May 22, 2016

In California, Autism Up, Intellectual Disability Down

While many people with autism received the tag of “mentally ill,” even more fell into the category of “mentally retarded.” Again, the reasons for the label are easy to grasp. Some people on the spectrum do have low IQs, though not as many as researchers once thought. More important, poor attention to task may cause intelligent people with autism to stumble on standardized tests. “Mental retardation” was a convenient catchall category for people with low scores and unusual behavior.
At Left Brain/Right Brain, Matt Carey looks at data from the California Department of Developmental Services.  He finds support for the idea that diagnostic substitution accounts for much of the apparent rise in autism prevalence:
You see I also graphed intellectual disability. I got autism counts, intellectual disability counts and “unduplicated” (total, each disabled person counted once) by birth year. I also got census data by birth year. And I graphed them. And anyone claiming CDDS data show an autism epidemic needs to do the same and to explain this graph, complete with the sharp peak for birth year 1993. (click to enlarge):

Intellectual disability has dropped. Off about 40% of the peak value.
If you think your idea for the rise in autism is correct, let’s take the failed vaccine idea as an example, you need to also explain how that resulted in far fewer people with intellectual disability. Plain and simple. And none of these claimed causes of an “epidemic” can explain the drop in ID.
Why bother challenging the people claiming an autism epidemic? Because it denies the existence of undiagnosed autistic adults. We have very little effort to identify those who were missed in past generations. And the likelihood is that these people–our people–are not being supported appropriately because of their misdiagnoses. And not only are we abandoning the misdiagnosed, we are failing to learn. What worked for past generations, the adults of today? What failed? What are the appropriate supports for the various needs of autistic adults? We don’t know today. And are unlikely to know by the time my kid is an adult, especially if we aren’t even looking at autistic adult needs today.
And then there’s the whole autism causation question. People spending their time trying to correlate CDDS data–data clearly confounded by numerous social influences–are unlikely to ever find a real answer.
But, for those who want to keep trying, include all the data. Give an explanation for this and you may be on to something.

Saturday, May 21, 2016

Training for Special Education


On Thursday, the U.S. Department of Education today announced more than $13.4 million in grants to higher education institutions to fund quality personnel preparation programs to help improve services and results for students with disabilities.  From the release:
“We are committed to promoting equity and excellence at every level of the education system,” said Sue Swenson, acting assistant secretary for the Office of Special Education and Rehabilitative Services. “These grants will give special education teachers and leaders the skills to help America’s students with disabilities achieve their academic potential.”
Of the $13.4 million, more than $4.1 million is being awarded under the Personnel Development to Improve Services and Results for Children with DisabilitiesLeadership Personnel program. The funds will go to higher education institutions to prepare doctoral students for faculty and administrator positions in special education, early intervention and related services.

The remaining $9.3 million in support is being provided under the Combined Priority for Personnel Development to help address state-identified needs for highly qualified personnel in special education, early intervention and regular education programs that serve children with disabilities. The funds will help train teachers and direct service providers in such areas as early childhood, low-incidence disabilities, related services and transition services.
The Office of Special Education Programs is a primary source of federal funding for training in special education, early intervention and related services.

Friday, May 20, 2016

Yet Another Purported Risk Factor: Circumcision

In The Politics of Autism, I discuss various ideas about what causes the condition.
Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious peer-reviewed studies:
Pesticides;
Air pollution and proximity to freeways;
Maternal thyroid issues;
Autoimmune disorders;
Induced labor;
Preterm birth;
Birth by cesarean section;
Maternal and paternal obesity;
Maternal and paternal age;
Maternal post-traumatic stress disorder;
Smoking during pregnancy;
Antidepressant use during pregnancy. 
I also write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk.  News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. "  One recent example is the notion that too much folic acid may play a part.

Another involves circumcision.  Sarah Kovac reports at Time:
Dr. Morten Frisch is a Danish epidemiologist who led a study examining the link between circumcision and ASD. The study, published in the Journal of the Royal Society of Medicine, found that boys who undergo circumcision are more likely to be diagnosed with autism by age 9. “Considering the widespread practice of non-therapeutic circumcision in infancy and childhood around the world,” the study states, “confirmatory studies should be given priority.”
...
But Frisch’s study is not without its critics, one of the most vocal being Professor Emeritus Brian Morris of the University of Sydney. “The problem with Frisch’s fundamental premise is that circumcision causes pain in infants and boys… Sometimes observers believe that crying during a circumcision is because of pain when in fact it is more likely because of the baby having to be restrained.” Morris also points out that, in many circumcisions, the baby doesn’t even cry during the procedure, and may even fall asleep.
His argument is supported by statistics out of Australia, where circumcision rates have been dropping since the 1960s, but ASD diagnoses have been rising.

Thursday, May 19, 2016

Pathways to Early Diagnosis and Intervention

In The Politics of Autism, I discuss evaluation and diagnosis of young children.

At IMFAR 2016, Maria Martinez had a paper titled: "Pathways to Early Autism Diagnosis and Intervention." The abstract:
Background:

Families of children with an ASD have more difficulty accessing and using services compared to families with children with other mental health care needs (Vohra, Madhavan, Sambamoorthi & St. Peter, 2014). The Autism CARES Act of 2014 introduced legislation to reduce barriers to screening, diagnosis and treatment however little is known about pathways that lead to earlier diagnosis and intervention. The Anderson model of health care utilization (Aday & Anderson, 1975) provides a framework to organize and examine factors associated with earlier access to autism services.

Objectives:

The purpose of this study is to identify pathways associated with early screening, assessment and intervention that can be utilized to develop a system of service that provides early intervention for autism spectrum disorders (ASD) and other developmental disabilities in order to facilitate children’s ability to reach their maximum potential. The target audience includes researchers, stakeholders and policy makers.

Methods:

Data from the 2014-2015 North Carolina Needs of Young Children with Autism Survey are presented that represent over 450 families with a child diagnosed with an ASD. Descriptive statistics and logit modeling analyzed de-identified demographic, diagnostic and service use information using the Anderson health care utilization framework. Pathways to early intervention as well as models predicting early parent recognition of concerns, who first recognized concerns, time to diagnosis, and early intervention are presented.

Results:

Early parent recognition is associated with parents sharing concerns with more providers prior to a child’s initial ASD diagnosis (p < .005), ASD presentations with lower levels of functioning (p < .005), parents (vs. providers) first recognizing a concern (p < .005), and type of providers conducting initial autism assessment (p < .05). Who first recognized developmental concerns was associated with parent completion of an autism screener at their doctor’s office (p < .01) and minority child race/ethnicity (p <.05). Early diagnosis was associated with ASD presentations with lower functioning (p < .001), type of provider (p < .05) conducting ASD assessment, and autism screening (p < .05). Early intervention was associated with ASD presentations with lower functioning (p < .05) and type of providers conducting initial autism assessment (p < .05).

Conclusions:

Parents who recognized concerns early were more likely to enter a pathway to earlier child diagnosis and intervention, particularly in cases of prompt initial diagnosis. This appears to be associated with type of provider conducting initial autism assessment and severity of child functioning, reflecting quicker pathway entry for families who are swiftly connected with specialists as well as autism presentations with greater functional impairment that may be easier to identify. When providers initially recognized developmental concerns, families were more likely to enter a pathway to quicker diagnosis and earlier intervention.
It is important for policy makers to support and increase autism awareness among parents and providers, routine autism screening and follow-up, strategies to improve provider recognition for minority and higher functioning children, and availability of specialists trained to conduct early diagnostic assessments

Wednesday, May 18, 2016

Autism and Assets

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

Yuki Noguchi reports at NPR:
"Once you develop into an adult, those resources plummet," says Leslie Long, vice president of adult services for the advocacy group Autism Speaks. 
An estimated 50,000 people on the spectrum enter adulthood every year. Face-to-face job interviews can be a challenge for many, Long says, and some engage in repetitive behaviors, which can seem odd to the uninitiated. 
But those idiosyncracies sometimes mask hidden talents, she says — like intense focus, or a facility with numbers and patterns. 
"I mean, look at what happened with the housing bubble and the financial market," she points out. "It was a man on the spectrum who saw which mortgages were going to fall. And I don't think that's something an average person would have been able to do." 
That particular case — of Dr. Michael Burry, the physician and hedge fund manager featured in the book and movie The Big Short — is in many ways exceptional, Long admits. (Burry has a son with Asperger's syndrome, and has said he believes he fits thediagnosis, as well.) 
Still, with baby boomers starting to retire, and with talent in increasingly short supply, companies as varied as Microsoft, Walgreens, Capital One, AMC Theaters, and Proctor & Gamble are all starting to actively recruit people who have autism spectrum disorder. They aren't yet putting a lot more people to work, but their recruiting and training programs are becoming models for other firms.