Latest news with #AutisticSelfAdvocacyNetwork
Yahoo
03-07-2025
- Entertainment
- Yahoo
'I just remember crying': JWoww shares the airport moment with her son that changed everything
During her appearance on Kylie Kelce's podcast Not Gonna Lie, Jenni 'JWoww' Farley shared one of the most painful moments of her parenting journey: a public meltdown involving her then-newly diagnosed son. 'My son got diagnosed with autism,' she explained. 'We were sitting in TSA, and he decided he didn't like that. He ripped my glasses off, broke them, and head-butted me.' Farley, who was alone at the time, tried to manage the situation—but it was the reaction from everyone else that haunts her. 'Everybody's phones go up. Everyone recording JWoww with her son who is throwing a tantrum in the airport. I just remember crying.' What Jenni didn't know then was that her son wasn't misbehaving—he was overwhelmed. And like many autistic children, he was trying to communicate the only way his body could. She didn't know then that her son was experiencing sensory overload. 'Nobody explained to me what sensory meant,' she said. 'That there are going to be challenges with lights or lines. That he didn't like waiting and he hated delays' Related: Becoming a sensory-aware parent: Understanding sensory processing disorder (SPD) Farley eventually got through TSA, locked herself in a bathroom, and did what she had to do. She managed. She got on the plane. But she never forgot how isolating that moment felt. What happened next changed everything. A friend connected her to KultureCity, an organization that creates sensory-inclusive spaces across the U.S. Within 72 hours, they had turned a room in her house into a sensory haven for her son. It wasn't just the tools that helped—it was finally having language for what was happening. 'I asked them, what can I do to be a part of your group? I want to help.' She now sits on KultureCity's board and is a fierce advocate for training, airport accommodations, and inclusive public spaces. Farley's message is simple: support, not shame, can change everything. 'Through KultureCity, I just want to help. I don't want to make you become the next meme or the next viral video…what if I put my phone down and helped?' she said. And while no one posted that video of her and her son, she knows countless parents haven't been so lucky. 'I look at every parenting situation differently now,' Farley said. 'I always give grace. I always step in to help.' Related: The 'sensational' tot: Recognizing—and dealing with—Sensory Processing Disorder For any parent navigating an autism diagnosis, she offers this: 'Don't wait. If you feel that your child isn't meeting the right steps… Do what needs to be done. Early intervention is key. Mothers can be unstoppable, and you need to be unstoppable for your children.' Autism Speaks KultureCity Contact your pediatrician for early intervention support in your area. For more from autistic adults on sensory needs and advocacy, visit Autistic Self Advocacy Network (ASAN).
Yahoo
15-05-2025
- Health
- Yahoo
Autism data collection restricted by Illinois governor order
SPRINGFIELD, IL — Illinois Gov. JB Pritzker has signed an executive order restricting state agencies from collecting and sharing autism-related data, in response to federal efforts to create a database for autism research. The order, signed by Pritzker on May 7, came after Health and Human Services Secretary Robert F. Kennedy Jr. announced a plan to use Medicare and Medicaid data to help study autism. Kennedy has prioritized autism as part of his Make America Healthy Again movement, which focuses on ending what he calls the "chronic disease epidemic." The health secretary, who has long promoted anti-vaccine views and shared debunked claims that vaccines cause autism, said in April during a cabinet meeting of President Donald Trump that the government will know the cause of the "autism epidemic' by September. Kennedy's rhetoric on autism has sparked outrage from much of the autism community and medical experts. Colin Killick, executive director of the Autistic Self Advocacy Network, previously told Reuters that the health secretary has a history of promoting falsehoods on autism. Autism is not considered a disease. It is a neurological and developmental disorder, which is also known as autism spectrum disorder, and is diagnosed based on challenges with social skills, communication, and repetitive behaviors. Pritzker's order aims to protect individuals from unauthorized data collection and 'ensures that autism-related information is handled only when necessary and with informed consent," according to a news release from the governor's office. 'Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination," Pritzker, a Democrat and critic of the Trump administration, said in a statement. "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.' What is autism spectrum disorder? Why it affects each person differently "All agencies under the Governor's control (which includes any agency, department, office, officer, division, bureau, board, or commission in the executive branch of state government under the Governor's jurisdiction) shall work to ensure they are not collecting, or using data scraping technology to gather, autism-related data," the order states, unless that collection fully complies with the Health Insurance Portability and Accountability Act and the MHDDCA. To be collected, the data must also be "strictly necessary" for multiple reasons listed, according to the order. Additionally, the order says that no state agency will disclose personally identifiable information that is maintained by a state agency to any entity outside the State of Illinois government, unless: The individual or legal guardian provides informed, written consent for a specific use It's required by court order or subpoena from a court of competent jurisdiction It's required to provide educational, medical, employment, housing, or other essential services and supports to an autistic individual It's required to comply with established Illinois or federal law "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," the order says. Groups that work with and support people with autism have expressed support for Pritzker's measure. Hope, based in Springfield, offers a range of services and programs for people with autism and other developmental disabilities. 'At Hope, and through our leadership of The Autism Program of Illinois (TAP), we strongly support Governor Pritzker's executive order safeguarding the rights and privacy of individuals with autism," said Chief Communications and Development Officer Jody Ogilvy in an email to The State Journal-Register, part of the USA TODAY Network. "This action reflects a deep understanding of the concerns raised by families, self-advocates, and service providers across the state," the statement read. Hope, in its more than 65 years of operation, has built a culture 'rooted in dignity, consent, and person-centered care. We do not and will not share personal health information without explicit consent, and we believe that individuals should never be reduced to data points or surveilled simply because of their diagnosis,' the statement added. Several other groups in the state also expressed support, such as the Southern Illinois Autism Society, Access Living, the Autistic Self Advocacy Network, the Chicagoland Autism Connection, and The Arc of Illinois. What is autism spectrum disorder? Steps you can take to support the community. The National Institutes of Health and the Centers for Medicare and Medicaid Services have partnered to research causes of the autism spectrum disorder. The agencies are creating a database of autism diagnosed Medicare and Medicaid enrollees, Reuters reported. Those agencies are within the U.S. Department of Health and Human Services. The partnership of those agencies will help the National Institutes of Health build a real-world data platform enabling research across claims data, electronic medical records, and wearable health-monitoring devices, according to Reuters. "We're pulling back the curtain, with full transparency and accountability, to deliver the honest answers families have waited far too long to hear," Kennedy said in a statement. The agencies said the project will comply with applicable privacy laws. Researchers will focus on autism diagnosis over time, health outcomes from medical and behavioral interventions, access to care and disparities by demographics and geography, as well as the economic burden on families and healthcare systems. Contributing: Swapna Venugopal Ramaswamy, Alyssa Goldberg, and Adrianna Rodriguez, USA TODAY; Reuters This article originally appeared on State Journal-Register: Autism data collection restricted by Illinois Gov. JB Pritzker order
USA Today
13-05-2025
- Health
- USA Today
Illinois Gov. JB Pritzker signs order restricting autism data collection
Illinois Gov. JB Pritzker signs order restricting autism data collection Show Caption Hide Caption RFK Jr.'s impact on HHS so far has some worried RFK Jr. reluctance to endorse the measles vaccine amid a deadly outbreak raised red flags. SPRINGFIELD, IL — Illinois Gov. JB Pritzker has signed an executive order restricting state agencies from collecting and sharing autism-related data, in response to federal efforts to create a database for autism research. The order, signed by Pritzker on May 7, came after Health and Human Services Secretary Robert F. Kennedy Jr. announced a plan to use Medicare and Medicaid data to help study autism. Kennedy has prioritized autism as part of his Make America Healthy Again movement, which focuses on ending what he calls the "chronic disease epidemic." The health secretary, who has long promoted anti-vaccine views and shared debunked claims that vaccines cause autism, said in April during a cabinet meeting of President Donald Trump that the government will know the cause of the "autism epidemic' by September. Kennedy's rhetoric on autism has sparked outrage from much of the autism community and medical experts. Colin Killick, executive director of the Autistic Self Advocacy Network, previously told Reuters that the health secretary has a history of promoting falsehoods on autism. Autism is not considered a disease. It is a neurological and developmental disorder, which is also known as autism spectrum disorder, and is diagnosed based on challenges with social skills, communication, and repetitive behaviors. Pritzker's order aims to protect individuals from unauthorized data collection and 'ensures that autism-related information is handled only when necessary and with informed consent," according to a news release from the governor's office. 'Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination," Pritzker, a Democrat and critic of the Trump administration, said in a statement. "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.' What is autism spectrum disorder? Why it affects each person differently What does Pritzker's order specifically do? "All agencies under the Governor's control (which includes any agency, department, office, officer, division, bureau, board, or commission in the executive branch of state government under the Governor's jurisdiction) shall work to ensure they are not collecting, or using data scraping technology to gather, autism-related data," the order states, unless that collection fully complies with the Health Insurance Portability and Accountability Act and the MHDDCA. To be collected, the data must also be "strictly necessary" for multiple reasons listed, according to the order. Additionally, the order says that no state agency will disclose personally identifiable information that is maintained by a state agency to any entity outside the State of Illinois government, unless: The individual or legal guardian provides informed, written consent for a specific use It's required by court order or subpoena from a court of competent jurisdiction It's required to provide educational, medical, employment, housing, or other essential services and supports to an autistic individual It's required to comply with established Illinois or federal law "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," the order says. Local response to Pritzker's executive order Groups that work with and support people with autism have expressed support for Pritzker's measure. Hope, based in Springfield, offers a range of services and programs for people with autism and other developmental disabilities. 'At Hope, and through our leadership of The Autism Program of Illinois (TAP), we strongly support Governor Pritzker's executive order safeguarding the rights and privacy of individuals with autism," said Chief Communications and Development Officer Jody Ogilvy in an email to The State Journal-Register, part of the USA TODAY Network. "This action reflects a deep understanding of the concerns raised by families, self-advocates, and service providers across the state," the statement read. Hope, in its more than 65 years of operation, has built a culture 'rooted in dignity, consent, and person-centered care. We do not and will not share personal health information without explicit consent, and we believe that individuals should never be reduced to data points or surveilled simply because of their diagnosis,' the statement added. Several other groups in the state also expressed support, such as the Southern Illinois Autism Society, Access Living, the Autistic Self Advocacy Network, the Chicagoland Autism Connection, and The Arc of Illinois. What is autism spectrum disorder? Steps you can take to support the community. What is the federal government doing? The National Institutes of Health and the Centers for Medicare and Medicaid Services have partnered to research causes of the autism spectrum disorder. The agencies are creating a database of autism diagnosed Medicare and Medicaid enrollees, Reuters reported. Those agencies are within the U.S. Department of Health and Human Services. The partnership of those agencies will help the National Institutes of Health build a real-world data platform enabling research across claims data, electronic medical records, and wearable health-monitoring devices, according to Reuters. "We're pulling back the curtain, with full transparency and accountability, to deliver the honest answers families have waited far too long to hear," Kennedy said in a statement. The agencies said the project will comply with applicable privacy laws. Researchers will focus on autism diagnosis over time, health outcomes from medical and behavioral interventions, access to care and disparities by demographics and geography, as well as the economic burden on families and healthcare systems. Contributing: Swapna Venugopal Ramaswamy, Alyssa Goldberg, and Adrianna Rodriguez, USA TODAY; Reuters
Yahoo
08-05-2025
- Health
- Yahoo
Ill. Gov. JB Pritzker signs order protecting autism data in response to federal research plan under RFK Jr.
Gov. JB Pritzker on Wednesday signed an executive order that formally restricts the unauthorized collection of autism-related data by state agencies. Pritzker's order responds to federal efforts under Health Secretary Robert F. Kennedy Jr. to create databases of personal information for those with autism 'without clear legal safeguards or accountability,' according to a news release from Pritzker's office. 'Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,' Pritzker said. 'As Donald Trump and (the Department of Government Efficiency) 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.' Kennedy said in a news release Wednesday that he aims to build a database using Medicare and Medicaid data to enable research on the 'root cause' of autism. According to the release, the database falls under President Donald Trump's larger efforts to research 'chronic conditions' and will proceed 'in a manner consistent with applicable privacy laws to protect Americans' sensitive health information.' 'We're pulling back the curtain — with full transparency and accountability — to deliver the honest answers families have waited far too long to hear,' Kennedy said in the release. Pritzker's office said Kennedy's threats to create such a database have sparked 'outrage and concern from tens of thousands of people across the United States, from advocates, to parents, to individuals with autism.' His office also pointed to Kennedy's February statement when he referred to autism as an 'epidemic,' saying it stigmatizes a 'narrative condemned by leading health experts and advocacy groups across the United States.' Pritzker's order prohibits state agencies from collecting or disclosing personally identifiable autism-related data unless it's required for care, legal compliance or program eligibility. Even then, such efforts must still follow strict privacy and data minimization rules. Contractors, vendors and grantees who work with state agencies must follow the same restrictions, and are barred from storing the data. Any disclosures of autism-related information must also be limited to the minimum amount of information and anonymized when 'allowed and practicable,' according to the order. Several Illinois advocates, such as Chicagoland Autism Connection, the Southern Illinois Autism Society and Autistic Self Advocacy Network, supported the order. '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. Kennedy is a longtime vaccine critic who has pushed a discredited theory that repeated childhood vaccines cause autism. He announced in early April that he plans to determine the cause of autism by September through a 'massive testing and research effort' involving hundreds of scientists. Kennedy hired David Geier to lead the research effort in March. Geier also claims there's a connection between vaccines and autism, and the state of Maryland has found he was practicing medicine on a child without a doctor's license. The Department of Health and Human Services in a Wednesday news release said the database research, accomplished through a partnership between the National Institutes of Health and the Centers for Medicare & Medicaid Services, will use 'claims data, electronic medical records, and consumer wearables' to research diagnosis trends over time, outcomes from 'medical and behavioral interventions,' disparities of access to care and 'the economic burden on families and healthcare systems.' Pritzker's office said that his latest executive order makes Illinois one of the first states to formally restrict the mass collection or sharing of autism-related data absent legal or medical necessity. _____
Chicago Tribune
07-05-2025
- Health
- Chicago Tribune
Gov. JB Pritzker signs order protecting autism data in response to federal research plan under RFK Jr.
Gov. JB Pritzker on Wednesday signed an executive order that formally restricts the unauthorized collection of autism-related data by state agencies. Pritzker's order responds to federal efforts under Health Secretary Robert F. Kennedy Jr. to create databases of personal information for those with autism 'without clear legal safeguards or accountability,' according to a news release from Pritzker's office. 'Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,' Pritzker said. 'As Donald Trump and (the Department of Government Efficiency) 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.' Kennedy said in a news release Wednesday that he aims to build a database using Medicare and Medicaid data to enable research on the 'root cause' of autism. According to the release, the database falls under President Donald Trump's larger efforts to research 'chronic conditions' and will proceed 'in a manner consistent with applicable privacy laws to protect Americans' sensitive health information.' 'We're pulling back the curtain—with full transparency and accountability—to deliver the honest answers families have waited far too long to hear,' Kennedy said in the release. Pritzker's office said Kennedy's threats to create such a database have sparked 'outrage and concern from tens of thousands of people across the United States, from advocates, to parents, to individuals with autism.' His office also pointed to Kennedy's February statement when he referred to autism as an 'epidemic,' saying it stigmatizes a 'narrative condemned by leading health experts and advocacy groups across the United States.' Pritzker's order prohibits state agencies from collecting or disclosing personally identifiable autism-related data unless it's required for care, legal compliance or program eligibility. Even then, such efforts must still follow strict privacy and data minimization rules. Contractors, vendors and grantees who work with state agencies must follow the same restrictions, and are barred from storing the data. Any disclosures of autism-related information must also be limited to the minimum amount of information and anonymized when 'allowed and practicable,' according to the order. Several Illinois advocates, such as Chicagoland Autism Connection, the Southern Illinois Autism Society and Autistic Self Advocacy Network, supported the order. '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. Kennedy is a longtime vaccine critic who has pushed a discredited theory that repeated childhood vaccines cause autism. He announced in early April that he plans to determine the cause of autism by September through a 'massive testing and research effort' involving hundreds of scientists. Kennedy hired David Geier to lead the research effort in March. Geier also claims there's a connection between vaccines and autism, and the state of Maryland has found he was practicing medicine on a child without a doctor's license. The Department of Health and Human Services in a Wednesday news release said the database research, accomplished through a partnership between the National Institutes of Health and the Centers for Medicare & Medicaid Services, will use 'claims data, electronic medical records, and consumer wearables' to research diagnosis trends over time, outcomes from 'medical and behavioral interventions,' disparities of access to care and 'the economic burden on families and healthcare systems.'
