NCSA part 1 &2

Introduction

Speakers: Jody Hansen, Tammy Snyder, Grace Snyder, Juliette Snyder.
Location: Wausau, Wisconsin and New York State.
Main focus: Personal experiences as caregivers for individuals with severe autism.

Symptoms led to months of emergency room visits.
Diagnosed with cellulitis in the throat due to untreated strep infection.
After treatment, he developed a movement disorder, identified as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) along with rheumatic fever, chorea, and tremors.
Obstacles encountered:
- Difficulty finding doctors who would accept Dayton's case, especially due to his nonverbal status and profound autism.
Jody expressed concern about Dayton possibly having excited catatonia but faced challenges in conveying this to health care providers.

During a psychiatric evaluation, an incident occurred where police were involved due to a meltdown.
Police suggested jail as a solution due to concerns of domestic abuse, which Jody opposed vehemently, advocating against placing a nonverbal child in such a situation.
Outcome: After threatening to seek legal representation, police backed down. Jody faced pressure to place Dayton in a state hospital for further assessment.

Constant worry about:
- Dayton's health and wellbeing.
- Finding appropriate medical care and resources.
Feelings of entrapment in home due to lack of support and resources.

Jody emphasized the need for:
- Multidisciplinary clinics that could provide comprehensive care (neurology, rheumatology, immunology, etc.) under one roof.
- A shift away from gaslighting parents and caregivers when raising concerns about their child's health.
- Individualized care that acknowledges the unique needs of children with severe autism.

There is a lack of available resources, medical providers, and specialized care for children with severe autism.
- This includes difficulties with necessary medical procedures like blood work, MRIs, and dental work.
Importance of continuity and familiarity with a pediatrician or medical provider.

The family experiences constant stress due to unmet medical needs, leading to behavioral challenges in the child.
Recognition of the broader implications of having a family member with autism impacts all family members, not just the individual with autism.

Expressed frustration about how others view the struggles families face with autism.
- Stress on feeling unsupported despite love for their sibling.
Lack of emergency response knowledge from first responders when dealing with individuals with autism.

Lack of training for first responders exacerbates situations involving nonverbal individuals.
Acknowledgment that police do not have the necessary skills to effectively communicate or handle emergencies with those who have disabilities.
Need for substantial changes in training for first responders.
Impact of insufficient funding and resources on education and special care for children with severe autism.

Notable concern over financial incentives for medical providers to treat patients with severe autism.
Challenges in residential care and education for children with significant behavioral needs.
Stories of families managing property damage from behaviors associated with severe autism, emphasizing the need for better support systems.

Discussed the necessity of educating the public and healthcare institutions about the spectrum of autism.
- Emphasis on misconceptions; autism is not solely about being extremely smart or having unique talents.
Importance of lowering stigma and elevating understanding of the diverse presentations of autism.

A collective hope for better resources, systems of care, and understanding among medical professionals and the public.
Advocacy for multidisciplinary clinics tailored for children with severe autism to improve quality of care and access.
Importance of family voices being heard and valued in managing autism-related health care and support needs.