Severe Autism - Wisconsin "The police wanted to take him to jail." Urging For Multidisciplinary Care
Summary
TLDRJod Hansen, a parent from Wausau, Wisconsin, shares the challenges of raising his 26-year-old profoundly autistic son, Dayton. After a serious illness and misdiagnoses, Dayton developed a complex movement disorder and possibly excitatory catatonia. Jod highlights the immense struggle families face navigating medical systems, dealing with disbelief from professionals, and managing daily care for severely disabled children. He advocates for nationwide multidisciplinary clinics where children with severe autism can access neurology, immunology, rheumatology, dentistry, and primary care in one place. His message emphasizes the need to listen to caregivers and build supportive medical and social systems for these vulnerable individuals.
Takeaways
- 😀 Dayton is a 26-year-old profoundly autistic individual whose medical needs are complex and ongoing.
- 😀 In 2021, Dayton experienced serious illness, including throat cellulitis caused by undiagnosed strep.
- 😀 Following treatment, he developed a movement disorder diagnosed as PANDAS with chorea and tremors.
- 😀 Many doctors and clinics refuse to treat nonverbal autistic patients, highlighting systemic healthcare gaps.
- 😀 Dayton may have excited catatonia, but accurate diagnosis is challenging due to overlapping symptoms with profound autism.
- 😀 A psychiatric crisis led to police involvement, illustrating risks faced by families during behavioral health emergencies.
- 😀 Parents experience constant worry and must make significant sacrifices, impacting the entire family.
- 😀 Medical gaslighting is a major challenge, with parents often not being listened to despite being the child’s advocate.
- 😀 Jod Hansen advocates for nationwide multidisciplinary clinics offering neurology, immunology, rheumatology, dental, and primary care in one location.
- 😀 The ultimate goal is for the healthcare system to support families and ensure children with severe autism receive comprehensive, coordinated care.
Q & A
Who is Jod Hansen and what is the main purpose of sharing this story?
-Jod Hansen is a parent from Wausau, Wisconsin, with a 26-year-old profoundly autistic son named Dayton. The main purpose of sharing the story is to raise awareness about the medical and systemic challenges faced by families caring for severely autistic individuals.
What serious health issue did Dayton experience in 2021?
-In 2021, Dayton became seriously ill and, after multiple emergency room visits, was diagnosed with cellulitis in his throat caused by untreated strep.
What complications arose after Dayton’s cellulitis was treated?
-Following treatment, Dayton developed a movement disorder identified as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), including chorea and tremors.
Why were medical professionals reluctant to treat Dayton?
-Medical professionals were reluctant to treat Dayton because he is non-verbal and profoundly autistic, making them hesitant or unwilling to provide care outside standard protocols.
What is excited catatonia and how did it relate to Dayton’s situation?
-Excited catatonia is a severe movement and behavioral disorder. Dayton likely had this condition, but confirming it was challenging due to his profound autism, as the symptoms can appear similar.
What difficulties did the family face with psychiatric care?
-During a psychiatric episode, Dayton had a meltdown, leading police to become involved. Authorities initially considered taking him to jail, and the family faced pressure to admit him to a state hospital for evaluation.
How has caring for Dayton affected the family’s daily life?
-The family experiences constant worry about Dayton’s health, sacrifices in personal freedom, and challenges for siblings. They also act as Dayton’s advocates in medical settings due to his inability to communicate verbally.
What systemic changes does Jod Hansen hope to see for children and adults with severe autism?
-Jod hopes for multidisciplinary clinics in every state, offering neurology, immunology, rheumatology, dental, and primary care under one roof, to reduce the burden of multiple appointments and improve coordinated care.
What does Jod mean by 'gaslighting' in the context of medical care?
-'Gaslighting' refers to doctors dismissing or doubting parents’ concerns about their child’s health. Jod emphasizes that parents should be listened to as advocates for their children.
What is the overarching message Jod Hansen wants to convey to the public?
-Jod’s overarching message is that children with severe autism deserve comprehensive medical care and support, and families need systemic assistance to manage medical, emotional, and daily life challenges effectively.
Why does Jod emphasize the need for a 'village' in raising children with severe autism?
-Jod emphasizes that raising a child with severe autism requires a support system of medical professionals, caregivers, and community resources, as the challenges are too extensive for a single family to manage alone.
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