RFK Wants to Pry into Our Medical Records

 In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

 Amanda Seitz and Darius Tahir at KFF Health News:

U.S. health secretary Robert F. Kennedy Jr. is pursuing federal government access to most Americans’ medical records, in a quest to research a link between vaccines and autism — a connection the medical establishment studied for decades and flatly rejects.

The Department of Health and Human Services is seeking data from little-known state systems that allow hospitals and clinics to exchange detailed, identifiable patient information, KFF Health News has learned.

In private meetings, some public health leaders have objected to giving Kennedy’s team access to such data, raising doubts that it’s legal or that the information would even be useful.

They have also expressed concerns about allowing the federal government to peer into the minutiae of Americans’ medical records, which could mean viewing anything from doctors’ notes to prescription history. HHS has offered no insight into how it will protect or handle the personal health information it obtains.

But Kennedy told KFF Health News that medical records are key to investigating the cause of autism, vaccine safety, and chronic diseases. And millions of dollars in grant money has poured into a Nebraska nonprofit that has assisted Kennedy’s effort, according to state records.

AI and IEP

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

Ariana Aboulafia at the Center for Democracy and Technology:

The use of artificial intelligence (AI) in schools is becoming more commonplace, including the use of generative AI models to develop individualized education programs (IEPs) for disabled students. A recent poll from the Center for Democracy & Technology (CDT) found that 57% of teachers reported using AI to develop an IEP or 504 plan during the 2024-2025 school year — an 18 point increase from the previous school year. But there are legal concerns with using these tools, including compliance with student privacy laws (like the Family Educational Rights and Privacy Act (FERPA)) and disability rights laws (like the Individuals with Disabilities Education Act (IDEA)).

This brief provides background information on how AI plays a role in IEP development, highlighting the importance of ensuring that IEPs are properly individualized and accurate for disabled students. It analyzes the benefits and legal risks of using AI in IEP development, and discusses other concerns including accuracy and bias. Finally, it provides recommendations for teachers, school and education administrators, disabled community members, and tool developers, notably:

• Teachers should be mindful of whether their school has an agreement with a particular AI tool vendor — if not, teachers should not input any personally identifiable information into AI tools, and should exercise caution around use in general.
• Schools and school districts should engage in proactive communication to students and parents regarding use of AI tools in IEP development; provide trainings to teachers; create policies for the use of AI tools in IEP development that includes a requirement for human oversight; and consult compliance offices regarding any legal risks of using AI in the IEP development process, including risks under IDEA and FERPA.
• Disability community members should raise awareness to others in the community on the use of AI tools in the IEP development process, educate themselves and others on their rights under statutes like IDEA and FERPA, and take advantage of opportunities to voice concerns over the uses of these tools, including at school board meetings.
• Developers should conduct pre-and-post deployment audits of their tools, prioritize privacy, create policies that prohibit their models from soliciting personally identifiable information from users, ensure disabled people are included in their development process, and be transparent about their data practices.

By incorporating these recommendations, stakeholders can work together to ensure that any use of AI tools in the IEP development process is done in ways that are legally compliant, privacy protective, and respectful of the rights and needs of disabled students.

Read the full report.

RFK v. Privacy

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.  Because Trump and RFK Jr. have a long history of lying about autism, we have to assume bad faith.

Emily Largent at MEDPAGETODAY:

Most recently, HHS announced the creation of "a real-world data platform" combining data  insurance claims, electronic medical records, and consumer wearables, and enabling research into the "root causes" of autism.

It is not just autistic people who should be worried by these developments.

If you have autistic patients or an autistic person in your family, you should worry. Research can harm people not directly involved in it and should be conducted with attention to minimizing such harms. For example, autism is thought to be caused by a combination of genetic and environmental factors. Given the strong role of genes, research into the root causes of autism -- or into related conditions like attention deficit-hyperactivity disorder (ADHD), depression, or learning disabilities -- could generate important insights while also revealing sensitive or stigmatizing information about research subjects' family members and other social groups. This concern is acute, as Kennedy's hurtful comments have already perpetuated stigma. Those affected by research should have a voice in what the research looks like.

If you are among the three-quarters of U.S. adults who report having one or more chronic conditions, you should worry. Autism is the first but not the last condition that will be studied using the real-world data platform. Longer term, HHS plans to study other chronic diseases. Autistic people  that it is not clear whether this research will be conducted with individuals' consent, and they have raised important concerns about data privacy.


Research into chronic conditions is needed, but for it to be ethical, questions of consent and privacy -- flagged by the autistic community but relevant to all research participants -- must be resolved. The obligation to protect participants always exists but the stakes are heightened given this administration's willingness to trample privacy norms, placing people at risk of identification and harm if their information is mishandled.

Pritzker and the Privacy of Autistic People

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.  Because Trump and RFK Jr. have a long history of lying about autism, we have to assume bad faith.

A May 7 release from Illinois Governor JB Pritzker:

Today, Governor JB Pritzker signed Executive Order 2025-02, affirming Illinois’ commitment to the civil rights, human rights, and data privacy of autistic residents. The order protects individuals from unauthorized data collection and sharing by state agencies and ensures that autism-related information is handled only when necessary and with informed consent. The order comes in response to rising national concerns about efforts to create federal autism registries or databases without clear legal safeguards or accountability.

“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” said Governor JB Pritzker. “As Donald Trump and DOGE threaten these freedoms, we are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities.”

“We are rejecting stigma and standing with families, educators, and self-advocates across Illinois,” said Lieutenant Governor Juliana Stratton. “This order reinforces our belief that neurodiversity is a strength and that civil rights must evolve to meet emerging challenges in data and privacy.”

In February, Trump’s Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. incorrectly referred to autism as an “epidemic,” a stigmatizing narrative condemned by leading health experts and advocacy groups across the United States. Secretary Kennedy has threatened to create an autism database though the HHS, sparking outrage and concern from tens of thousands of people across the United States, from advocates, to parents, to individuals with autism.

Under this Executive Order, state agencies may not collect or disclose personally identifiable autism-related data unless it is required for care, legal compliance, or program eligibility—and must always follow strict privacy and data minimization rules. Contractors, vendors, and grantees who work with state agencies are also covered by this executive order, and shall not collect, store, or disclose autism-related data. All disclosures must be limited to the minimum amount of information necessary to meet the legal requirement, and should be anonymized where allowed and practicable.

Illinois now becomes one of the first states to formally restrict the mass collection or sharing of autism-related data absent legal or medical necessity.

“This is a strong, timely safeguard. As new threats emerge to the rights of people with disabilities, Illinois is showing what leadership looks like—proactive, principled, and inclusive,” said Representative Natalie Manley (D-Joliet).

“This is a win for privacy, inclusion, and progress,” said Stephanie Brown, Executive Director of the Southern Illinois Autism Society. “We’re grateful the Governor is listening to the autism community and taking concrete action.”

“Too often, policies affecting the disability community are made without us" said Karen Tamley, President and CEO of Access Living, a service and advocacy center run and led by disabled people in Chicago. "We must work to remove societal barriers and protect disability rights. Today, Illinois is taking an important step to protect the privacy of autistic people in our state."

“As the lead agency for The Autism Program of Illinois, a statewide network built by Hope to serve thousands of children and families, we’ve long upheld the principle that private health information must never be shared without informed consent,” said Clint Paul, CEO of Hope. “For more than six decades, Hope has championed the rights of individuals with autism—through care, education, and advocacy. We commend Governor Pritzker’s executive order for aligning with our values: protecting privacy, rejecting stigma, and affirming that every person deserves to be treated with dignity and respect.”

"At a time when certain federal officials are sharing dangerous misinformation about autistic people, and when members of our community are understandably concerned about whether the federal government has our best interests are heart, it is deeply gratifying to see Illinois affirming the value of our lives, affirming that autism is not an epidemic, and taking concrete action to protect our privacy and ensure personally identifiable information about us does not fall into the wrong hands,” said Colin Killick, Executive Director of Autistic Self Advocacy Network.

“We are thankful to Governor Pritzker and his cabinet for taking this strong stand and action to protect our rights to consent and be heard about decisions that threaten the progress made by advocates, family members, educators, legislators, and other champions serving the disability community,” said Kimberly L. Johnson, Chicagoland Autism Connection. “People living with autism and their family members are not just numbers in a research project! ​ Nothing about us, without us!

"As a mother of a ten-year-old on the spectrum and Executive Director of The Arc of Illinois, I’m grateful for this bold step to protect the rights and dignity of autistic individuals,” said Samantha M Alloway, Executive Director at The Arc of Illinois. “At a time when fear and misinformation threaten hard-won progress, Illinois is choosing inclusion, consent, and civil rights. Our voices are being heard.”

“My son is deserving of the same rights to medical and personal privacy as anyone else in this country, even more so in today’s climate. This order is a huge relief for families like mine,” said Mike Baker, a Schaumburg advocate and father of a teenager with autism. “We want our children to have equal rights—not be treated like data points or monitored without cause. His privacy is worth our protection.”

This executive order builds on a rich history of disability rights advocacy in Illinois. Just last year, Governor JB Pritzker signed the bipartisan Dignity in Pay Act, which will eliminate subminimum wage and expand employment opportunities for people with disabilities across Illinois. Additional efforts from the Pritzker administration to protect Illinoisans with disabilities include banning discrimination in housing selection based on non-employment income such as disability payments, and expanding accommodations for people with disabilities seeking to attend legislative meetings, hearings, and other government events at the Illinois Capitol Complex. Funding for disability services and supports have also reached record levels during Governor Pritzker’s time in office.

Nevada License Designation

  A number of ASD people drive cars.

In The Politics of Autism, I write:

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly.[i] 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.”[ii]

Michael Bell at KVVU-TV:

A bill being considered in the Nevada Legislature would require - under certain circumstances - the DMV to place a designation on a driver’s license for certain persons with autism.

AB161, acknowledges that current regulations with the DMV have symbols or other indicators of medical conditions on driver’s licenses. If passed, it would put such a designation if that person had autism.

The application for a license would include a statement from a licensed physician or an advanced practice registered nurse that the person does indeed have autism.

When cops encounter autistic people they may not respond in the same way as NT people, and things can get out of hand.  A letter of support for the bill makes this point:

My name is Troyce Krumme and I am the Vice Chairman of the Las Vegas Police Managers and Supervisors Association (PMSA). I am writing to express support for Assembly Bill 161.

If approved, this bill will help reduce the likelihood of harmful encounters between individuals with a communications impairment and law enforcement, primarily during traffic encounters. By creating a system where individuals with communication impairments can voluntarily advise the DMV of a communication impairment and the DMV can subsequently denote such on a driver’s license and vehicle registration, the likelihood of miscommunication during a police encounter is likely to reduce.

In policing, when officers have contact with citizens, we are always looking for indicators. Those indicators can go a long way in hinting to the officer how the contact will progress. Is the person going to be compliant? Is the person not going to be compliant? Why is the person not going to be compliant? Is the person showing signs of aggression? Why is the person being aggressive? Is the person showing signs that they might run? Is the person showing signs they might try and hurt me? These are all examples of things an officer working need to consider, to keep themselves and the people they have contact with safe. When trying to decipher these indicators, knowledge is power.

This bill offers an opportunity for individuals diagnosed with certain impairments that may impact their behavior patterns and could be misconstrued by an officer as aggression. Having this information potentially available for officers before or as an interaction is progressing, could give officers pause and a reason to explain the person’s behavior when the officer is deciding if force will be necessary for their protection. In a nutshell, I believe this bill could go a long way in avoiding potentially tragic outcomes from certain police encounters. I urge the members of the committee to pass this bill and put that information into the hands of Nevada’s police professionals.

I would like to add something I believe should be seriously considered. Police officers have access to other databases that show information such as local criminal history, various permits, and offender registrations. In Clark County one such database is SCOPE. The sponsors of this bill and this committee should consider adding these types of databases to this piece of legislation to increase the chances of this information getting into the hands of law enforcement. 

 

Recordings and Rights in Conflict

 In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.

Parents of an autistic Maine teen want him to have a recording device during the school day.  Alanna Durkin Richer reports at AP:

A novel case heading Monday to the 1st U.S. Circuit Court of Appeals in Boston, which hears most New England cases, pits the student's parents against his southern Maine school district, which says the recording device would infringe on other students' privacy rights. His parents say they need a glimpse into his day so they can better advocate for him at a school they don't trust isn't always telling the whole story.

"Most kids can come home and tell their parents what happened at school or what the teacher had done or not done. He can't do that," said Matthew Pollack, the father of the now 18-year-old Ben.
...
Attorneys for the district say teachers and administrators have gone above and beyond to provide the parents with information about the student, who they say loves school. A hearing officer concluded last year there is "simply no demonstrable benefit" to allowing the parents to record his day and that it would actually be "disruptive and detrimental" to his education.

In other states, parents of special education students have secretly placed audio recorders on their children to expose abuse, which have led to firings or settlements. And Texas recently began requiring school districts to install cameras in certain special education classrooms.

But opponents say such actions raise serious privacy concerns.

If parents can assert a right to "send an always-on listening device to school with their children, what would this mean for students who wished to report abuse or neglect at home to a school counselor, or for students with disabilities who are LGBT?" asked Samantha Crane of the Autistic Self Advocacy Network.

Autism and College

In The Politics of Autism, I discuss the growing number of college students on the spectrum:

We do know that autistic students suffer high levels of depression, anxiety, and social isolation. We also know that their difficulties can affect their academic performance. (Group projects can be hard.) They have to cope with these problems without the protection of an IEP, since the Individuals with Disabilities Education Act does not apply to higher education. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 provide for certain accommodations (for instance, extra time for tests), but the student has to seek them. According to Jane Brown Thierfeld, co-director of an organization of professionals who assist autistic students, for every student receiving special services, there are one or two on that same campus who have not come forward.

Back in May, Noel Murray wrote at Vox about the challenges facing autistic college students and their families:

The exact number of men and women on the spectrum attending college today is hard to pin down, because there are few incentives at the moment for those students to register with disability services. Circa 2008, autism researchers estimated that anywhere from 1 to 2 percent of the university population had autism, Asperger's, or some pervasive developmental disorder. Autism spectrum diagnoses have only risen since then.

Jane Brown, co-director of the organization College Autism Spectrum, described the big problem with how students on the autism spectrum transition from high school to college: "Up through high school, parents are advocates and CEO of their child's education."

But not only are universities not inclined to allow parents to stay in that driver's seat, they're legally bound in some cases to shut parents out. Under the Family Educational Rights and Privacy Act, once students turn 18, they become the stewards of their own records, from grades to whatever special learning tools and accommodations they might request.

In high school, the laws are geared toward making sure that all children, regardless of any disability, have a right to "a free and appropriate education in the least restrictive environment." Colleges are under no such obligation to make sure students learn and thrive. They have to provide certain resources for people on the autistic spectrum, but it's not their responsibility to make sure those resources get used.

In Dubuque, KCRG-TV reports:

Loras College is starting to take student applications for next fall for the new Connections Academy Program. That’s a four year program that keeps students with autism in a college classroom with other students. But, the program helps these students to be able to handle the social and academic sides of college life.

Faculty at Loras say they wanted to start the program because there has been an increase in the number of children diagnosed with autism.

A 2010 report by the Centers for Disease Control shows that one in 68 children have autism. The number of children and teens with developmental disorders like autism is up 17 percent since the mid-1990s.

“Years ago students who have Autism were told they weren’t college material,” Lynn Gallagher, Connections Academy Director, said.

Starting next fall, students in the Connections Academy will be assigned a peer mentor and a faculty advisor.

Autism and Higher Education

In The Politics of Autism, I discuss the increasing numbers of people on the spectrum who are going to college.  Ru Ying Cai and  Amanda L. Richdale have an article in The Journal of Autism and Developmental Disorders titled "Educational Experiences and Needs of Higher Education Students with Autism Spectrum Disorder." The abstract:

Little research directly examines the needs of post-secondary students with ASD. The experiences and support needs of 23 students with ASD enrolled in two [Australian] universities and four colleges, and 15 family members were explored in 15 semi-structured focus groups. Thematic analysis identified five themes: core ASD features, co-morbid conditions, transition, disclosure, and services and support. Most students felt educationally but not socially supported; most families felt support was poor in both areas. Transition from secondary school was often unplanned, and disclosure of diagnosis usually occurred after enrollment, often following a significant problem. Many parents provided substantial student support. Thus disclosure of ASD diagnosis and meeting the individual needs of these students are important considerations as higher education enrollments increase.

From the article:

Similar to Shattuck et al. (2012), majority of our students still lived at home with continued family support. When the student had not disclosed, or given explicit, written permission for their parent to advocate for them, [Australian] privacy laws affected communication between parents and higher education staff when the student was 18 years or older. In some cases, this led to negative consequences for the student; a collaborative approach between staff and parents was often crucial in supporting the student and increasing the likelihood of their success. Thus, where a student still relies substantially on a parent or significant other for support, it is important that the student gives written permission for this person to advocate and communicate directly with disability support staff. Awareness of the potential benefits of a collaborative approach that includes families and higher education staff is important and formal processes that will facilitate such cooperation are desirable.

Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder.Pediatrics, 129(6), 1042–1049. 

Autistic Teen v. School Board

In Northport, New York, a community on Long Island, The Northport Patch reports:

The Northport-East Northport Board of Education cut off a 14-year-old boy from speaking during Monday’s meeting when the teen, who has a form of high-functioning autism, attempted to express what he felt was unfair treatment in his classroom due to his disability.

Christian Ranieri held back tears as he left the room after being shut down just a few sentences into his speech, in which he was asking the board to hear him out after he felt he was unfairly suspended for two days from school.

The school board president cited privacy laws in his reasoning for halting Ranieri's speech. The Family Educational Rights and Privacy Act protects the privacy of student education records.
...

Ranieri continued his speech, pointing out that he was trying to stand up for himself, the way others, such as Rosa Parks did. However, after he asked the board for a different person to be put in charge of implementing his IEP, Waldenburg apologized for having to stop him from speaking and Ranieri was cut off again.

“This entire discussion which involves disciplinary action is totally improper for a public session,” Waldenburg said.

“Let him be heard!” residents shouted from their seats.

Waldenburg said that the “proper audience” for the discussion would be the superintendent. However, the teen’s mother, Carina, said that when she attempted to speak with the superintendent at the school building, she was told that she would have to make an appointment and was asked to leave. Carina sent a letter asking for an appeal of the suspension, but had not received a response from the superintendent, she said.

...

After the incident in school, Renieri and his family created a Facebook page to document the teen’s journey of self-advocacy. So far, the page has garnered 220 fans and continues to grow. Avideo of Renieri's speech at the board meeting was also uploaded to YouTube where it has more than 1,500 views as of Tuesday evening.

It's gone viral. As of early Saturday morning, the video had more than 55,000 views:

Autism and Privacy in North Dakota

Good data are necessary for good policy, but data collection often involves privacy concerns. In North Dakota, The Jamestown Sun reports:

A bill under consideration in the North Dakota Legislature is prompting concern among some parents of children with autistic spectrum disorders. The bill, Senate Bill 2193, creates a database of information about autistic people and establishes the position of a state autism coordinator. 

“I have minor concerns about it all but what is extremely upsetting is the mandated database,” said Amanda Lausch, mother of 5-year-old Ariella who has an autism spectrum disorder. “Whoever diagnoses them is required to report it to the state. It requires a physical exam and the state can collect any other information it deems appropriate.”
...

The current wording of the bill as passed by the Senate, includes a clause that requires the department of health to keep confidential all records of the database that could be used to identify an individual. The same clause exempts transfers of information to other state agencies from the confidentiality requirement. It does require the receiving state agencies to treat the information as confidential. 

[State Senator Joan] Heckaman said the privacy of the medical records is also covered by federal law. 

The Health Insurance Portability and Accountability Act, more commonly known as HIPAA, requires all medical information to be treated as confidential, she said.

Audio and IEP

Previous posts have discussed the issues associated with recording devices. In Maine, the Lewiston-Auburn Sun-Journal reports:

The parents of a 13-year-old Mt. Ararat Middle School student who has autism and intellectual disabilities are challenging the school district's decision to block them from sending their son to school with an audio recording device.

The school district is fighting the parents' proposal, saying it's not conducive to providing educational services and poses a threat to the privacy of other students and school staff.
A hearing made public by the parents started last week and is scheduled to continue Monday.
Jane Quirion had notified SAD 75's attorney in March that she intended to send her son, Ben, a seventh-grader who is nonverbal, to school with an audio recorder in an effort to keep him safe and to ensure that school staff were complying with the terms of Ben's individualized educational plan, known as an IEP.

Ben's father, Matthew Pollack, who is a lawyer, said the response from the school's attorney was jolting.

The attorney threatened to bar Ben from school if he were equipped with a live audio recorder, Pollack said.

"They claimed it wasn't discipline. He just wouldn't be allowed in," he said.

The school's attorney said it would have constituted a crime, as well as a violation of school policy, Pollack said. The attorney added that it would have violated the school's collective bargaining agreement with the teaching staff, Pollack said.

Cameras in the Classroom

Previous posts have discussed abuse of special-needs kids in schools.  In some cases, there is video or audio evidence. ABC News reports on one response:

A grassroots movement to put cameras in classrooms, driven by the parents of special-needs students, is simmering across the country. It's a personal crusade for many of the parents who say their children have suffered abuse at the hands of teachers and classroom aides with unsatisfying consequences.

Parents in states such as Ohio, Texas, Michigan, New Jersey and Tennessee have taken to the Internet to promote their cause with petitions, videos, Facebook pages and letters to the president. Many of their children either cannot speak or have difficulty with verbal communication

An Incident in Sierra Madre: Update

Previous posts have described an incident in Sierra Madre, California.  On August 30, LA Weekly reported:

For the past two years, Tony Brandenburg -- lead singer of seminal Fullerton punk band The Adolescents -- and his wife have been caught in a struggle with their community school board and parents from Sierra Madre School in Sierra Madre (part of Pasadena Unified School District), whom they claim discriminated against their Autistic son.

On Tuesday night the Brandenburgs rallied several dozen friends and supporters together at the Pasadena School District's public board meeting, many holding signs and some in ski masks. They called for a censure of Board of Education Vice President Edward Honowitz, who they believe violated policy and conspired with other parents at their son's school, resulting in his removal from his first grade classroom last year, and again this term for second grade. Their son suffers from sensory processing disorder, a neurological problem associated with Autism, that results in confusion and distress in those afflicted when overstimulated.

Earlier this year the couple called, in vain, for an investigation of Honowitz, whom they also believe held secret meetings with parents of their son's classmates. They say he has also altered and withheld documents relating to their son's education, including a petition signed by other parents citing him as a classroom distraction and requesting his removal. The Brandenburgs allege that no one worked with them to learn about his disorder or how to deal with it, and that their son has been bullied by other kids at the urging of their parents and with the approval of Honowitz.

ASD in the ER

Previous posts have discussed interaction between first responders such as police officers and firefighters. ER doctors and nurses face challenges, too. At Autism After 16, Michele Langlo writes of taking her adult son to the emergency room:

While the staff on the floor had been informed that Cody was autistic, they really were not sure what an overnight stay would entail for him or them. We explained to them that either Bill or I would need to be there with him round the clock for communication purposes.

At first, they were asking Cody questions in the same way they would ask any neurotypical person. They quickly learned that got them nowhere and they needed help.

But there was the HIPPA law to deal with as well. Something hospitals take this very seriously. Cody is legally an adult, so how was this going to work?

Bill and I both carry photocopies of our Legal Guardianship document from the court with us at all times. Bill pulled his out of his wallet and handed it to the nurse. I don’t think I’ve ever seen anyone quite as relieved as she was at that moment. Now we could begin to make some headway toward my son’s care.
...
Now I think about what kind of problems we could have faced had we not been prepared. What would have happened if we had not had that document in our physical possession at that moment when questions of legalities surfaced? Would the doctors and nurses have been legally bound to go strictly on what procedures Cody gave permission for? What if he said no? Would they have given up when they could not get legitimate answers to their questions? I shudder to imagine the horror we could have faced, especially if Cody had not responded to treatment quickly.

Wearing a Wire to Catch Abuse

Previous posts have dealt with cases of abuse captured on video. Reuters reports:

A New Jersey school district has fired at least two educators for verbally abusing autistic children after a father sent his 10-year-old autistic son to school wearing a hidden microphone upon suspecting he was being mistreated by staff.

The audio recordings, made public in a 17-minute video later posted on YouTube, capture educators speaking in harsh tones to the autistic children, including one in which a woman tells the young boy what sounds like "You are a bastard."

"That night my life changed forever," father Stuart Chaifetz said of the first time he heard the recording. "What I heard on that audio was so disgusting, so vile."

Chaifetz said in the video he had become perplexed by reports his son, Akian, was being accused of hitting teachers and aides and knocking over chairs at Horace Mann Elementary School in Cherry Hill, New Jersey.

ABC reports:



AP reports:

In cases around the country, suspicious parents have been taking advantage of convenient, inexpensive technology to tell them what children, because of their disabilities, are not able to express on their own. It's a practice that can help expose abuses, but it comes with some dangers.
...

Laws on audio recordings vary by state, but in most of the U.S., including New Jersey, recordings can generally be made legally if one party gives consent. Over the past decade, courts in New York and Wisconsin have ruled that recordings made secretly on school buses were legal, finding that there is a diminished expectation of privacy for drivers on the bus.
The recordings have led to firings in several states, criminal convictions of bus employees in Wisconsin and New York, and legal settlements worth hundreds of thousands of dollars in Ohio and Missouri.

"In classrooms where children are nonverbal, unable to communicate, defenseless," he said, "we should start to have a discussion of whether cameras in the classroom are necessary."

Read more here: http://www.kansascity.com/2012/04/25/3575822/parents-use-recorders-to-prove.html#storylink=cpy

Read more here: http://www.kansascity.com/2012/04/25/3575822/parents-use-recorders-to-prove.html#storylink=cpy