After the Cliff

At WBEZ in Chicago, Camille Smith writes about autistic people who age out of services, such as Josh Stern of Wilmette.

Josh’s mom Linda Stern is all too familiar with what many parents refer to as “the day the bus doesn’t come.”

“They put so much effort and wonderful work into the school experience and for most people all that work all that effort all that wonderful enriching experience just disappears,” Stern said. “They don’t even understand it, it’s like how come I’m not going to school and I’m sitting at home with mom watching TV all day long.”

The transitional period out of the school system in Illinois starts at age 14 ½. During that time, families work with the school to create post graduation goals based on the child’s interests and skills.

Though federal law requires that every child receive a transition plan, parents like Bill Casey feel the system can leave parents frustrated and confused.

“Parents don’t understand what’s offered to them by the community service organizations,” Casey said. “You really have to start digging to figure what’s available. You really need friends like Julie and Michael Tracy [of  Growing Solutions Farm].to help guide you in some ways to find the right avenues.”

...

More than half of people with autism struggle to find work and often don’t seek higher education opportunities.

For those who do, they can turn to Jennifer Gorski. Gorski runs the Autism Clinic and TAP Training Center at University of Illinois, Chicago.

“We are hearing about these needs from people in our community quite a bit,” Gorski said. “We formed the ASPiE group which is a support group geared toward supporting college students that are on the spectrum.”

ASPiE (Adults Spectrum People in Education) meet once a week to have frank conversations that every college kid has such as, what’s in store after college, questions about careers and managing course load.

Autism ID Cards

At WBRC in Birmingham, Christy Hutchins reports:

The Alabama Department of Public Safety and the Autism Society of Alabama are partnering to bring certification cards to state.

These cards would be issued to people diagnosed with autism to help clear up any confusion there could be when dealing with emergency personnel.

The cards will be similar to ones that state a person has been medically diagnosed with autism spectrum disorder and that their medical condition impairs that person's ability to communicate with others.

Bama Hager, with the Autism Society of Alabama said Alabama is one of the first states to sign this into law.

"We had families that really reached out to the state legislature and asked for some sort of identification," said Hager.

This law went into effect on January 1. The card will also have contact information on the back so emergency personnel can call family members.

In 2014, Virginia Governor McAuliffe signed "JP's Law, providing for a voluntary designation on licenses and other state identifications   At the Ashburn Patch, Greg Hambrick wrote:

Just a few days into the law, Dr. Michael Oberschneider describes a very mixed response on it from his patients with autistic spectrum disorders. And within his outpatient therapy practice in Northern Virginia, he has already identified a trend in which adult and younger patients appear to have concerns about the law for themselves, while the parents of younger patients appear to be embracing it.

More specifically, several adults on the autism spectrum in Dr. Oberschneider’s practice have expressed fear that the law could become discriminatory for them. One adult patient shared, “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?” And Dr. Oberschneider himself shares some of the same concern that JP's Law could also create moments for profiling or discrimination to occur. Dr. Oberschneider asserts, "Even though autism is more in the public eye today than ever before, that does not necessarily mean people understand it. To the contrary, 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." Adequate education should, however, serve to dispel incorrect beliefs about autism for law enforcement agents. 

In July, Annette Galagher reported at the University of Miami:

Imagine that you are an adult with autism who at times has difficulty communicating and are sensitive to both flashing lights and loud noises. You get pulled over for speeding, or another traffic infraction, by a law enforcement officer who is unaware of your disability.
Watching your reactions to the siren and flashing lights, the officer mistakenly thinks you are impaired by drugs or alcohol.

Imagine you’re a teen with autism, waiting for a friend in a public place, and you begin pacing. A lot. A store manager sees you pacing and assumes that you’re up to something and calls security. They don’t understand that pacing is just what you do when you’re bored or stressed, and they want you to leave immediately.

Now imagine both of those situations defused by a piece of paper, a simple identification card that explains the nature of the holder’s autism and how it manifests itself. The police officer turns down the lights and gives the person she pulled over more time to answer questions. The security guard explains to the store manager that there’s no mischief planned, just a teenager waiting for a friend.

That is the goal of a new ID card that is a joint venture of theUniversity of Miami Center for Autism and Related Disabilities(UM-CARD), the Coral Gables Police Department, and theDisability Independence Group (DIG).

Diane Adreon, associate director of UM-CARD, said that the ID card concept was truly a collaborative idea that grew out of the group’s work with Coral Gables Police and DIG to conduct Miranda rights training for teens with autism spectrum disorders (ASD) and their parents, as well as adults with autism.

An Arrest in South Carolina

In Greenville, SC, WYFF reports:

The South Carolina Autism Society, which had already scheduled training seminars for law enforcement agencies in the Greenville, Columbia and Charleston-areas, has invited Greenville police to attend after the controversial arrest of Tario Anderson.

"I sent (Greenville Police Chief Ken Miller) an email the other day to sort of introduce myself and I haven't heard back from him yet. I hope we'll be able to meet up and be able to get some of his officers to come," said Kim Thomas, the group's executive director.
Anderson, 34, was arrested just before midnight on Christmas Eve, as police were investigating possible shots being fired near Sullivan and Burns Streets.

Officers said they saw Anderson walking on the sidewalk and tried him to question him. They said when they put a spotlight on Anderson, he put his hands in his pockets, started walking the other way and eventually started running from them. He was shocked with a Taser and arrested because he didn't follow the officers' commands.

Thomas said she doesn't blame the officers for not recognizing Anderson was autistic. But she said his reaction that night raised several red flags.

"I know the officers tried to talk to (Anderson) and get him stop and he would not stop or answer back. If someone isn't making eye contact, isn't verbally communicating, I think that could be an indicator to them that someone may be on the spectrum," Thomas said.

Autism and Tech Employment

In Palm Beach, Florida, WPTV reports:

A marriage of software giant SAP and tech workers on the autism spectrum, SAP just launched a program it calls “Autism at Work.”

“One of the reasons we’re looking at people on the spectrum is they bring abilities we may not have. In order for us to accommodate some of the challenges, we have to provide a different platform,” said SAP’s Jose Velasco.

With the first group of employees in the program preparing for their first day at SAP, the company is also turning to outside experts for advice.

“The challenge for a lot of people is social interaction. They’re just as smart as other people in the workforce, but they may not enjoy the eye contact and face-to-face, interaction,” said Dr. Rosalind Picard, MIT Director of Autism Technology.

A Settlement in New Orleans

AP reports:

New Orleans public schools have agreed to ensure that students with disabilities are properly treated and educated while also being given the chance to attend the schools they want to attend, under a settlement announced Friday (12/19).

The Southern Poverty Law Center sued state and city school officials in 2010, alleging students with disabilities did not have equal access to schools in New Orleans and were not protected from discrimination. The law center sued on behalf of children with a variety of disabilities including autism, hyperactivity and bipolar disorder.

Under the settlement, the city's schools would set up a system to identify children with disabilities, place them in schools and help them achieve educational goals. Individual schools would also be required to do more to make sure they are handling students with disabilities properly. An independent monitor would be put into place to track efforts to meet the settlement's requirements.

The deal needs to be approved by U.S. District Judge Jay Zainey. The suit was filed against the Louisiana Department of Education and the Orleans Parish School Board. Since Katrina struck in 2005, most of the public schools in New Orleans were taken over by the state education agency and turned into charter schools.
...
In its suit, the law center claimed the state violated the Individuals with Disabilities Education Act and the Americans with Disabilities Act. Roughly 11 percent of the city’s students are considered to have disabilities, according to Leslie Jacobs, the founder of New Orleans-based Educate Now! and a former state school board member.

The original lawsuit outlined cases in which parents of children with disabilities were unable to find schools that could accommodate their children. In one case, the suit said, a parent was told a child “was no longer welcome to return to school because of a manifestation of his disability.” The child, then 15, had been diagnosed with bipolar disorder and attention deficit with hyperactivity disorders.

Chelating Doctor Agrees to Have License on Probation

The Chicago Tribune reports:

A Naperville doctor nationally known for offering alternative autism treatments has agreed to have her Illinois medical license placed on probation for at least a year after state regulators accused her of subjecting two children to unwarranted, dangerous therapies.

Dr. Anjum Usman, whose treatment of a Chicago boy was featured in the Tribune's 2009 "Dubious Medicine" investigation, will continue to practice but will take extra medical education classes and will submit 10 of her patients' medical charts quarterly to Dr. Robert Charles Dumont, an integrative medicine physician who will assess them.

Tribune series: Dubious medicine

The Tribune investigation found that many alternative treatments for autism are unproven and risky, and are based on scientific research that is flawed, preliminary or misconstrued. The treatments, the Tribune found, amount to uncontrolled experimentation on vulnerable children. Some of these therapies were at the heart of the disciplinary case state medical authorities filed against Usman.

The Illinois Department of Financial and Professional Regulation, which will oversee Usman's probation, had alleged that Usman provided "medically unwarranted treatment that may potentially result in permanent disabling injuries" to the boy featured in the Tribune series and another child. In prescribing chelation, a hormone modulator and hyperbaric oxygen therapy, Usman subjected the Chicago boy to unproven treatments and demonstrated "extreme departure from rational medical judgment," state medical regulators originally had charged.

From a 10/13/11 post at Left Brain/Right Brain:

Usman is also associated with the 2005 death-by-chelation of five-year-old Tariq Nadama. According to court records, Usman diagnosed the boy with “high aluminum” and referred him to Roy Kerry, a Pennsylvania physician. Kerry, an ear-nose-and throat surgeon, inexplicably treated the boy for lead poisoning.

According to Kerry’s notes, which were published by the Pennsylvania Medical Board:

“We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding to other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults. We therefore checked him to it … But on testing for the deficiency indicator we find him only indicating the need for EDTA at the present time. Therefore we agree with Dr. Usman’s recommendation to proceed with the treatment. She recommends 50mg per kilo. He is 42 pounds today. So we’ll treat him with a 20-kilo child and give 1 gram of EDTA.

Nadama arrested and died in front of his mother during the third chelation round in August, 2005. A year later, Kerry was certified as a DAN doctor after completing an eight-hour training course. Prosecutors declined to charge Kerry for the death, and the state medical board suspended his license for six months and ordered extra training.

Housing in Minnesota

Abby Simons reports at the Minneapolis Star-Tribune:

Across Minnesota, families with children who have autism or other disabilities struggle to stay in rental homes in the face of disruptions or damage caused by the kids. The situation is particularly acute in the Somali community, where one in 32 children between ages 7 and 9 is on the autism spectrum, according to a University of Minnesota study. That compares to 1 in 48 for children of that age in the overall population.

The Minnesota Legislature tried in 2013 to help alleviate the problem by creating a $500,000 fund aimed at providing housing for families like Ahmed’s. But bureaucratic glitches have kept the money in limbo, with the families unable to access it.

The money initially was allocated to the Minnesota Housing Finance Agency, which finances housing for low- and middle-income families. MHFA then advertised for community-based organizations to apply for the money so it could be distributed to needy families. Although they initially showed interest, Habitat for Humanity and City of Lakes Community Land Trust never applied.

Twin Cities Habitat for Humanity spokesman Matt Haugen said that because the organization works both as a builder and a lender, it would risk violating fair lending laws if it took money tied to a specific goal, like housing for families of autistic children facing eviction. “It’s certainly not a matter of what we want to do; it’s a matter of how we do it,” Haugen said. City of Lakes did not respond to requests for an interview.

Anxiety

Rachel Zamzow reports at The Philadelphia Inquirer:

About 40 percent to 60 percent of people with autism have a diagnosable anxiety disorder or an atypical anxiety driven by irregular fears or unusual social anxiety, said [Dr. Connor] Kerns, assistant professor at the A.J. Drexel Autism Institute. 

Anxiety is a common concern for the parents of autistic children and adults on the spectrum. But major obstacles have prevented the accurate assessment of anxiety in autism, leaving treatments for this symptom lacking. 

For one, most standard anxiety measures are not designed for people with autism, said Kerns. And they can't deal with unusual anxiety symptoms, such as those caused by a minor change in routine. 

"A lot of the atypical fears are much more closely intertwined with symptoms of autism itself," she said.
...
But among people with autism and their families, anxiety is hard to overlook. This symptom can become increasingly apparent as a person reaches adolescence and adulthood, when the demands of social situations are more complex, said Kerns. In 2020, the number of autistic adults receiving services in Pennsylvania is expected to top 36,000, according to the Pennsylvania Autism Census. 

About 20 percent of autistic children and adults in the state have co-occurring anxiety disorders, according to a 2011 state survey. And 20 percent to 50 percent report that their needs for mental health care, including anxiety counseling, are not being met.

Wandering: A Tragedy in South Carolina

Many posts have discussed wandering. Many youths with autism are attracted to water, so drowning is a major hazard. The Poughkeepsie Journal reports:

Jayden Morrison’s family is devastated after the 4-year-old autistic boy from White Plains was found dead Friday morning in a pond near the family’s second home in South Carolina, two days after being reported missing. 

“I’m hurt,” Carolyn Sumpter, Jayden’s grandmother told The Journal News on Friday afternoon. “My body hurts. My heart hurts. 

Police, first responders, K9 units, dive teams and about 150 volunteers had been searching for the boy since he disappeared from the family’s vacation home in Little River, South Carolina, about 5:30 p.m. Christmas Eve. His mother, Tabatha Morrison, had gone shopping and left her three children at the home with the grandmother 

Sumpter, who regularly watched the boy at his White Plains home, where she lived with his parents, said minutes after the mother left she noticed the front door was ajar and the boy was missing 

“We’ve always been in a gated situation,” Jayden’s father, Andre Morrison, told reporters Thursday afternoon after he arrived in South Carolina from New York. “We knew he was a wanderer when he was younger, but he was always in an enclosement. We never put him in a position to go out and freely wander.”

Employing ASD People in Silicon Valley

At The Bay Area News Group, Jeremy Thomas writes of ASD adult Joe Cintas:

Cintas' life changed in March when he was hired at SAP's Palo Alto office, along with six other employees, as part of the German software company's groundbreaking Autism at Work program. Developed with Danish company Specialisterne, a pilot project proved successful in India, so SAP brought it to the United States, first to Silicon Valley and later to Pennsylvania, and Germany, Canada and next year, Brazil. So far, 42 employees with autism have been hired at eight SAP locations around the world.

...

While company programs for hiring autistic employees are nothing new, they've usually involved low-wage, simple tasks. SAP is among the first to embrace the idea that some of those with autism can excel in skilled positions.

Initially limited to software testing, the program quickly spread to other areas, including software development, customer support and graphic design. Impressed with the early success, SAP is planning to bring the program to its other Bay Area offices in Dublin, South San Francisco and possibly Sunnyvale.

... 

While SAP is by far the largest company to push for hiring autistic employees, it isn't the first. For more than 25 years, Livermore's Ratermann Manufacturing has had a work site at the Morgan Autism Center in San Jose where about a dozen autistic men and women are paid minimum wage to assemble parts for use with compressed gas tanks. Ratermann provides supplies and faxes orders; the crew fills them and ships them out.

Drugstore chain Walgreens also has an initiative for hiring autistic workers at its distribution centers and is in the process of expanding it to its retail stores. With SAP paving the way, autism advocates hope more opportunities are on the horizon.

Organizing Parents in Simi Valley

In California, The Simi Valley Acorn reports on the No Education at Simi Group, consisting of parents who criticize the quality of education in the Simi Valley Unified School District. The group placed an ad in the paper:

“It is the opinion of this group that some students may not have received a ‘free appropriate public education,’” the Nov. 14 advertisement read. It asked parents interested in joining the group or sharing information to email NoEducationAtSimi@gmail.com. 

SVUSD has approximately 2,300 students in special education, or roughly 13 percent of all the district’s students. According to an informational flier provided to the Acorn via email, No Education At Simi’s goal is to bring “an awareness of some of the pitfalls” the members have experienced in the district.

Why was an ad necessary?  There is no public list of special ed students because IEPs are confidential.  Therefore special ed parents have a hard time identifying and reaching one another.  There are other organizational barriers as well:

First, parents might be leery of drawing public attention to their children's disabilities. In the case of high-functioning autism, the other kids will probably notice a difference without necessarily knowing the label.  Once the label is public, however, the child might be subject  to more bullying.

Second, special ed parents might be reluctant to share information with one another.  Those who get a "good" IEP might worry that others will want the same deal and create a "run on the bank."

Third, organizing takes time, which is one thing that the parents of autistic kids and other special-needs students do not have.

Fourth, special needs are diverse.  The things that paraplegic kids need (e.g., wheelchair ramps) are totally different from autistic kids need (aides, communications devices).  A dollar that goes to one need is a dollar not available to another.  Even within the autism spectrum, there are diverse needs that might make it hard for parents to form a community of interest.

Update on Neli Latson

Things did not go well for Neli Latson after he received a reduced sentence for assaulting a Stafford County deputy in Virginia.  In June, The Free Lance Star reported:

Latson was living in a group home in Winchester last August when he got into a scuffle with a deputy there. He was convicted of assaulting a police officer and attempting to disarm a police officer but was released on time served. 

He was then brought back to Stafford and charged with a probation violation. This time, he was ordered to serve another year and was serving that sentence when he picked up his latest charge on April 24. 

According to the evidence presented by Commonwealth's Attorney Eric Olsen, Latson was placed on suicide watch and was being escorted by three officers from one area of the jail to another. 

As one of the officers was instructing Latson to put his hands on the wall, according to testimony, Latson replied, "don't [expletive] talk to me that way." 

He later added, "I will rock your ass. I will rock your punk ass," and punched the officer three times in the head. 

A Taser was used on Latson to get him under control, according to the evidence.

Ruth Marcus has published inaccurate commentary on this case, as The Daily Howler explains.

A release from the American Civil Liberties Union of Virginia:

Today, the ACLU of Virginia sent a letter to Governor Terry McAuliffe asking him to review the case of Reginald “Neli” Latson, a young man with intellectual and developmental disabilities who has been held in solitary confinement in a state correctional facility for almost a year.  The letter urges the Governor to take executive action to allow and facilitate Latson’s transfer to a secure treatment facility in Florida, a recommendation that was made by the Virginia Department of Behavioral Health and Disability Services (DBHDS).

... 

“Unfortunately, Mr. Latson is not the only Virginia prisoner in solitary confinement, nor is he the only person with a developmental disability to be jailed rather than treated,” said Gastañaga. “That is why we have asked the Governor to undertake a comprehensive investigation of the use of solitary confinement and the treatment of people with disabilities by law enforcement and in our prisons and jails.” Gastañaga added, “As Governor, he is also in the best position to lead a broader conversation about how our law enforcement and judicial systems can respond more effectively to situations involving people in our criminal justice system and those in mental health crises.” 

The ACLU of Virginia has joined the Arc of Virginia, Autism Speaks, and others to ask the Governor to take whatever steps are necessary to transfer Latson to an appropriate facility, including granting him a conditional clemency. 

Latson currently is serving time on an assault conviction and has a trial scheduled on January 5, 2015, on another assault charge. Both assault charges were a direct result of the repeated and cumulative failures of law enforcement, prosecutors, and correctional officers to properly address his disabilities. 

Read the ACLU of Virginia’s letter to the Governor here.

Priorities

At The Huffington Post, Linda Mastroianni says that genetic research is fine but might not be the most urgent priority:

This research will hopefully benefit and improve the lives of the next generation but it will definitely not ameliorate the lives of children that are waiting to be evaluated for a possible Autism diagnosis or the kids that have been on a waiting list for an early intervention program, nor will it help the young adults that are aging out of the school system with no available work programs or resources waiting for them afterwards.

As important as research is, I truly don't believe this should be the number one priority when discussing how to improve the lives of people with autism. 

How is research helping the autistic individuals living in our society today? The ones that are stigmatized for who they are; the children who are on waiting lists for government funded therapy that unfortunately never comes and whose parents are forced to go privately, depleting finances at an astounding rate.