1:35:40
A Voice for Severe Autism
Seattle Children's
Overview
This video features Jill Escher and Amy Lutz from the National Council on Severe Autism (NCSA) discussing the challenges and realities faced by individuals with severe autism, a population often marginalized in public discourse and advocacy. They highlight the distinction between severe autism and milder forms, emphasizing the need for specialized support, education, and policy. The presentation covers critical issues such as diagnostic labels, the neurodiversity movement's conflict with NCSA's focus, educational approaches, communication methods like facilitated communication, therapeutic interventions, safety concerns, and the urgent need for adult services and housing. The speakers advocate for a pragmatic, evidence-based approach that acknowledges the profound disabilities and support needs of this severely affected population.
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Chapters
- The National Council on Severe Autism (NCSA) was founded to address a vacuum in advocacy and public discourse concerning individuals with severe autism.
- NCSA aims to represent the voices of families whose loved ones have profound cognitive and functional impairments, often lacking the ability to advocate for themselves.
- The organization views severe autism as a public health emergency requiring pragmatic policy and support, not wishful thinking or trivialization of hardships.
- NCSA provides a platform for sharing truths about severe autism through a blog, newsletter, webinars, and policy statements.
Understanding the mission of NCSA is crucial to grasp why this specific population needs dedicated advocacy and why their unique challenges are often overlooked by broader autism organizations.
The formation of NCSA itself, to fill a void left by mainstream organizations that have shifted focus away from the most vulnerable individuals with autism.
- Severe autism is defined by a combination of autism, significant cognitive and functional impairments, and often limited or no language, requiring lifelong, intensive support.
- Individuals with severe autism may exhibit challenging behaviors like aggression, self-injury, and property destruction, impacting safety and quality of life.
- Common comorbidities include epilepsy, psychiatric disorders, and severe sleep disturbances, adding to the complexity of care.
- Families face immense financial stress due to the lack of accessible services and the need for personal respite and therapy.
This chapter clarifies what 'severe autism' entails, differentiating it from other presentations on the spectrum and highlighting the profound, multifaceted challenges faced by affected individuals and their families.
Images showing a young man destroying furniture and a house bearing scars of physical destruction, illustrating the impact of challenging behaviors on the home environment.
- The current DSM-5 definition of Autism Spectrum Disorder (ASD) is considered too broad, lumping together vastly different conditions.
- Autism presents differently in childhood versus adulthood, leading to distinct clinical presentations and needs.
- There's a significant qualitative difference between individuals with severe autism requiring 24/7 care and those with high IQs and social/sensory difficulties.
- Splitting the spectrum is necessary to accurately recognize and address the distinct etiologies, clinical presentations, therapeutic needs, and prognoses of different autism profiles.
Questioning the broadness of the autism spectrum is essential for developing targeted interventions and policies, as lumping diverse conditions under one umbrella can disadvantage those with the most profound needs.
The contrast between an individual needing constant care due to severe developmental disability and another with high cognitive abilities who experiences primarily social or sensory challenges.
- For families of individuals with severe autism, the condition is viewed as a serious pathology rooted in abnormal brain development, not merely a difference.
- Autism is not caused by vaccines; this myth persists despite scientific evidence.
- Autism rates have genuinely skyrocketed, not just due to increased awareness, as evidenced by data showing a 44-fold growth in cases within California's developmental services system.
- This increase cannot be fully explained by population growth or diagnostic shifts, suggesting unknown contributing factors.
Understanding autism as a pathology for severely affected individuals informs the urgency of the public health response, while acknowledging the dramatic rise in rates necessitates further investigation into causes and prevention.
California's developmental services data showing a rise from approximately 3,000 autism cases in the mid-1990s to 133,000 cases today, representing a 44-fold increase.
- The neurodiversity movement views autism as an identity and difference to be celebrated, often comparing it to homosexuality and emphasizing autonomy and the social model of disability.
- NCSA advocates for a broad range of settings (inclusive to specialized) to accommodate diverse needs, contrasting with the neurodiversity movement's push for fully inclusive settings.
- NCSA believes family members are the most appropriate surrogate decision-makers for individuals unable to advocate for themselves, grounded in bioethical principles.
- NCSA prioritizes focusing on the pragmatic realities and challenges of severe cognitive, functional, and behavioral disabilities for policy-making.
This conflict highlights a fundamental disagreement on how to approach autism: as an identity to be embraced or a disability requiring significant intervention and support, impacting policy and service provision.
NCSA's belief that specialized, intensive programs are necessary for some severely autistic individuals, versus the neurodiversity movement's advocacy for only fully inclusive educational, vocational, and residential settings.
- Applied Behavioral Analysis (ABA) is a broad term encompassing various teaching strategies, not solely the controversial 'drill and kill' methods sometimes depicted.
- While some autistic students thrive in inclusive classrooms, most severely autistic children require specialized programs due to significant behavioral and functional impairments.
- Facilitated Communication (FC), including methods like Rapid Prompting Method, is not considered a valid communication strategy by major professional organizations, as research shows it reflects facilitator influence (ideomotor effect).
- Authentic alternative and augmentative communication (AAC) methods are supported, but FC is rejected due to lack of scientific validity.
Debates around educational settings and communication methods directly impact the quality of life and development for individuals with severe autism, requiring careful consideration of evidence-based practices.
A parent's experience of their son breaking a teacher's nose in kindergarten, leading to a move to an approved private placement, illustrating the need for specialized educational settings.
- Many individuals with severe autism require medication for symptoms like aggression and anxiety, though medications do not address core deficits.
- Cannabis-based medications are increasingly popular alternatives for managing symptoms, with a need for more research.
- Electroconvulsive Therapy (ECT) can be highly effective for severe aggression and self-injury when other treatments fail, as demonstrated by its use in managing a son's severe behaviors.
- There is a critical shortage of specialized neurobehavioral units for young people and adults with severe developmental disabilities and aggressive behaviors, leading to reliance on inadequate emergency room care or restrictive hospital settings.
This section addresses critical interventions for managing severe symptoms and the dire lack of appropriate crisis care and therapeutic options for individuals whose behaviors pose significant risks.
A son's successful management of severe aggressive rages through regular ECT, enabling him to live at home, highlighting its effectiveness when other methods fail.
- Elopement (wandering) is a major safety risk, leading to preventable deaths, particularly from drowning; solutions include door locks, alarms, and tracking devices.
- Fire and emergency preparedness are critical, with initiatives like the September 26th Project aiming to help families prepare for disasters.
- There's a need to better educate first responders and police on de-escalating situations involving autistic individuals to prevent negative interactions like tasering or arrest.
- Abuse and neglect are significant threats due to the vulnerability of individuals who cannot report it; focusing on qualified, well-trained staff and supervision is more effective than solely changing setting sizes.
Proactive safety measures and improved societal understanding are vital to protect vulnerable individuals with severe autism from preventable dangers like elopement, abuse, and harmful interactions with authorities.
The use of coded door locks to prevent a son from eloping, providing the parent with peace of mind and preventing dangerous wandering incidents.
- The transition from educational services (ending around age 21) to adult services presents a 'cliff,' with states often incentivized to limit expensive services.
- There is a severe shortage of affordable and appropriate housing options for adults with severe autism, with costs vastly outstripping SSI income.
- Community-based housing models can be challenging for individuals with severe autism due to eviction risks and neighbor complaints; specialized settings like farmsteads or campuses may be more suitable.
- Guardianship is presented as a necessary legal protection for severely autistic adults who lack the capacity for self-determination, contrasting with the disability rights movement's emphasis on supported decision-making, which may be inappropriate for those with profound incapacities.
Addressing the complex needs of the rapidly growing adult population with severe autism, particularly regarding housing, services, and legal protections like guardianship, is a critical and urgent societal challenge.
The financial disparity where an adult receiving $750/month in SSI cannot afford rent in the Bay Area, which can be $2,000/month even on the low end, illustrating the housing affordability crisis.
- Research must include individuals with severe autism, who are currently underrepresented, to understand causes, increases, and effective interventions.
- Preventing disabilities, including autism, through public health initiatives is a valid and necessary goal, akin to preventing other developmental abnormalities.
- More effective therapeutics are desperately needed, particularly for severe behaviors that lead to poor outcomes, family trauma, and institutionalization.
- Pragmatic lifespan research is required to identify high-quality care models across different income levels and settings, addressing the current de facto policy of 'autism housing for rich people only'.
Directing research towards the specific needs of severe autism and developing practical, lifespan-oriented solutions is essential for improving outcomes and ensuring equitable access to care and support.
The observation that current tools for managing severe autism are largely the same as those available 20 years ago, highlighting the urgent need for medical and therapeutic advancements.
Key takeaways
- Severe autism is qualitatively distinct from milder forms, characterized by profound cognitive, functional, and communication impairments that necessitate specialized, lifelong support.
- The broadness of the current autism spectrum definition obscures the unique needs of severely affected individuals, necessitating a 'splitting' of the spectrum for better-targeted interventions.
- The dramatic increase in autism rates requires urgent research into causes and prevention, moving beyond the myth that it's solely due to increased awareness.
- NCSA advocates for a continuum of care and diverse settings, contrasting with the neurodiversity movement's emphasis on full inclusion, to meet the varied needs of the autism population.
- Evidence-based practices, such as ABA and authentic AAC, are crucial in education and communication, while methods like Facilitated Communication lack scientific validity.
- Effective management of severe behaviors often requires medical and therapeutic interventions beyond standard approaches, including medications and, in some cases, ECT, highlighting a critical need for specialized crisis care.
- Ensuring the safety and well-being of individuals with severe autism requires proactive measures against elopement, abuse, and negative interactions with authorities, alongside robust emergency preparedness.
- The growing population of adults with severe autism faces significant challenges in accessing appropriate housing, services, and support, demanding immediate policy attention and resource allocation.
- Guardianship can provide essential legal protections for individuals unable to make complex decisions, serving as a vital safeguard against exploitation and neglect.
Key terms
Severe AutismNational Council on Severe Autism (NCSA)Autism Spectrum Disorder (ASD)Cognitive ImpairmentsFunctional ImpairmentsNon-verbal CommunicationChallenging BehaviorsComorbiditiesNeurodiversityApplied Behavioral Analysis (ABA)Facilitated Communication (FC)Alternative and Augmentative Communication (AAC)Electroconvulsive Therapy (ECT)ElopementGuardianshipDirect Support Professional (DSP)
Test your understanding
- What are the key characteristics that define severe autism according to NCSA, and how do these differ from milder forms of autism?
- Why does NCSA advocate for 'splitting' the autism spectrum, and what are the potential consequences of a broad, undifferentiated diagnosis?
- How does NCSA's perspective on autism as a pathology contrast with the neurodiversity movement's view of autism as a difference?
- What are the primary challenges faced by individuals with severe autism and their families in areas like education, communication, and adult services?
- What are the critical safety concerns for individuals with severe autism, and what solutions or approaches are proposed to mitigate these risks?