Autism Cares Act 2024 Reauthorization
Key Highlights of the Autism CARES Act of 2024:
https://www.congress.gov/bill/118th-congress/senate-bill/4762/text
Reauthorization and Amendments:
These funding priorities aim to support comprehensive research, early detection, intervention, and coordination of services for individuals with autism spectrum disorder
Reauthorization and Amendments:
- The bill reauthorizes programs and research related to autism under the Public Health Service Act until 2029.
- It includes amendments to improve the language and scope of existing provisions, such as changing "culturally competent" to "culturally and linguistically appropriate."
- Extends the program's authorization to 2029.
- Updates terminology to be more inclusive and accurate.
- Emphasizes culturally and linguistically appropriate services.
- Expands the scope to include both screening and diagnostic services.
- Promotes research on evidence-based practices and interventions.
- Requires a report on the need for developmental-behavioral pediatricians and the feasibility of expanding training programs.
- Requires annual summaries and biennial updates on activities.
- Extends the committee's authorization to 2029.
- Updates the timeline for required reports to 2024.
- Adds a requirement for a report on young adults with autism transitioning to adulthood.
- Expands research areas to include psychiatry, psychology, gerontology, and other relevant fields.
- Requires the NIH Director to consider the various needs of individuals with autism, including co-occurring conditions.
- Mandates an annual budget estimate for autism research initiatives.
- Allows the Secretary of Health and Human Services to provide training and technical assistance on using federal funds for communication tools for individuals with autism.
- Requires an annual report on the technical assistance provided and advancements in communication tools.
- Developmental Disabilities Surveillance and Research: $28,100,000 annually for fiscal years 2025 through 2029.
- Autism Education, Early Detection, and Intervention: $56,344,000 annually for fiscal years 2025 through 2029.
- Interagency Autism Coordinating Committee and Related Activities: $306,000,000 annually for fiscal years 2025 through 2029.
These funding priorities aim to support comprehensive research, early detection, intervention, and coordination of services for individuals with autism spectrum disorder
Caught Between Tears and Stoicism
A story worth telling— not because it is exceptional for a disabled person to feel pride, but because it is an ordinary human experience. And that, in itself, is enough.
Read Full Article at
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Comment
Beautifully written and very wise, Hari! I will also share it with my students.
An Evolving Landscape of Autism Research
AI and Technology in Autism
- 2020s: Artificial intelligence (AI) and machine learning are applied to analyze large datasets in autism research, identifying biomarkers and developing early detection algorithms.
Biomedical Research
2000s: Gastrointestinal Issues and the Gut-Brain Axis: Studies link GI issues to behavioral changes in autism, leading to research on the gut-brain connection and its impact on autism symptoms.
2014-2018: Endocannabinoid System: Research reveals its role in regulating mood and stress in autism, leading to trials exploring CBD as a treatment for anxiety and sensory sensitivities.
2016: Immune System and Neuroinflammation: Research finds links between immune system irregularities and autism, with some individuals displaying elevated inflammatory markers.
2017: Microglia and Inflammation Research: Studies on microglia (the brain’s immune cells) suggest that increased activation may contribute to autism traits through neuroinflammation.
2019: Microbiome and Gut-Brain Research: Research on the gut microbiome shows that differences in gut bacteria may influence autism symptoms, prompting interest in probiotic treatments.
2019-2021: Nutritional and Metabolic Research: Research explores nutritional deficiencies and metabolic dysfunction in autism, leading to interest in dietary supplements and other nutritional interventions.
2020s: Precision Medicine Approaches: The rise of precision medicine leads to personalized autism treatments tailored to individual genetic, biological, and environmental profiles.
Mental Health
2010s: Autism and Anxiety: Studies show that anxiety is one of the most common co-occurring conditions in autism, particularly linked to sensory sensitivities and social challenges.
2020s: Depression and Suicide Research reveals high rates of depression and suicidal ideation among autistic individuals, leading to calls for targeted mental health interventions.
2010s: Autism and Anxiety: Studies show that anxiety is one of the most common co-occurring conditions in autism, particularly linked to sensory sensitivities and social challenges.
2020s: Depression and Suicide Research reveals high rates of depression and suicidal ideation among autistic individuals, leading to calls for targeted mental health interventions.
Co-occurring Conditions
2014: High Prevalence of Co-occurring Conditions: Studies reveal that 70-80% of autistic individuals have co-occurring conditions like anxiety, depression, ADHD, or epilepsy, emphasizing the need for integrated care.
2014: High Prevalence of Co-occurring Conditions: Studies reveal that 70-80% of autistic individuals have co-occurring conditions like anxiety, depression, ADHD, or epilepsy, emphasizing the need for integrated care.
Aging and Lifespan Research
2010: Shift Toward Aging Research: Research begins focusing on the aging process in autistic adults, identifying accelerated aging and increased physical and mental health conditions.
2015: Aging in Autistic Adults: Studies show that older autistic adults face increased physical health issues like mobility problems and early cognitive decline.
2016: Premature Mortality in Autism: Research reveals a higher risk of premature mortality in autistic individuals due to co-occurring conditions and limited healthcare access.
2019: Social Isolation and Mental Health in Older Adults: Studies highlight loneliness, depression, and anxiety in older autistic adults, prompting calls for better social support.
2020s: Aging, Mental Health, and Physical Health: Research shifts to focus on employment, independent living, and healthcare for aging autistic individuals, emphasizing the need for lifelong supports.
2023: Neurodegenerative Diseases and Autism: Emerging research suggests that older autistic individuals may be at higher risk for neurodegenerative diseases, prompting preventive healthcare strategies.
Motor Function and Movement Disorders
1980s-1990s: Recognition of motor impairments in autism, such as coordination issues and fine motor skill difficulties.
2000s: Movement and Motor Stereotypies: Motor stereotypies, such as hand-flapping and rocking, are studied as part of sensorimotor integration and self-regulation in autism.
2011: Motor Planning and Dyspraxia: Research reveals that many autistic individuals struggle with motor planning and dyspraxia, affecting both fine and gross motor tasks.
2015: Cerebellar and Motor Function: Neuroimaging reveals cerebellar abnormalities in autistic individuals, linking them to difficulties with motor coordination and balance.
2016: Gait and Balance in Autism: Studies show that many autistic individuals have atypical gait patterns and balance issues, which affect daily functioning.
2018: Motor Skills and Social Communication: Research highlights a link between motor skills and social communication, suggesting that improving motor coordination can also enhance social abilities.
2020s: Movement Disorder Subtypes: Research identifies subtypes of motor dysfunction in autism, including parkinsonism and proprioceptive challenges, adding depth to motor-related autism research.
Genetic and Neurological Research
1977: Genetic Link Discovered: Twin studies by Folstein and Rutter reveal a strong genetic component to autism, marking the beginning of autism genetics research.
1980s: Brain Differences Identified: Neuroimaging shows structural differences in the amygdala, frontal cortex, and cerebellum, regions related to social interaction and motor coordination.
2007: Autism Genome Project identifies several genetic mutations, emphasizing the heterogeneous nature of autism and its complex genetics.
2011: Synaptic Pruning: Research finds that impaired pruning in autistic individuals may lead to excess neural connections, contributing to sensory overload.
2015: CRISPR and Genetic Editing: The introduction of CRISPR/Cas9 gene-editing technology provides new insights into autism by allowing the study of genetic mutations and considering potential treatments.
2018: Epigenetics research shows how environmental factors influence gene expression, adding complexity to the genetic understanding of autism.
Sensory Processing Research
1990s: Sensory Processing Differences: Researchers recognize sensory processing differences (hypersensitivity or hyposensitivity) as a hallmark of autism, leading to sensory-based therapies to manage anxiety and stress.
2000s: Sensory Integration Therapy emerges as a common approach to help autistics respond better to sensory input, using activities such as swinging, climbing, and deep pressure to improve sensory regulation.
2000s: Sensory Overload and Environmental Factors: Studies explore how sensory overload in environments like schools and workplaces contributes to anxiety and meltdowns. Creating sensory-friendly environments with dim lighting and noise reduction improves functioning.
2010s: Sensory Over-responsivity and Brain Connectivity: Over-responsivity to sensory stimuli is linked to atypical brain connectivity, showing hyperconnectivity in sensory processing areas, which results in overwhelming responses to stimuli like loud noises or bright lights.
2010s: Sensory Subtypes in Autism: Researchers identify sensory subtypes, including over-responsive, under-responsive, and sensory-seeking behaviors, acknowledging the diversity in sensory processing challenges.
2018: Sensory Processing and Mental Health: Research highlights the connection between sensory processing differences and mental health conditions, such as anxiety and depression, especially in relation to sensory overload contributing to social withdrawal and stress.
2020s: Sensory Processing and Social Communication: Findings suggest that sensory processing differences directly impact social communication in autism. Sensory overload may interfere with social interactions, prompting sensory-informed social skills interventions.
2020s: Wearable Sensory Devices: Wearable devices, such as noise-cancelling headphones and compression garments, help autistic individuals manage sensory overload in daily settings.
Technology and Autism
2010s: Assistive Technology for Communication [still lagging terribly]
2020s: AI and Virtual Reality (VR): applied in autism research, particularly in social skills training, allowing autistic individuals to practice social interactions in controlled settings.
Autism and Employment
2010s: Employment Challenges: Research reveals widespread unemployment and underemployment among autistic adults, leading to the development of neurodiversity hiring programs at major companies like SAP and Microsoft.
2020s: Inclusive Work Environments: Studies focus on creating inclusive work environments, showing that autistic employees can thrive with the right accommodations and mentorship.
Social Cognition Research
1980s: Theory of Mind (ToM): Research introduces mindblindness in autistic individuals, suggesting difficulty understanding others’ thoughts and feelings (Theory of Mind deficits).
1990s: Executive Function and Social Challenges: Studies explore how executive function deficits (e.g., planning, flexibility) affect social cognition, leading to challenges in managing social situations.
2000s: Empathy Research: Researchers distinguish between cognitive empathy (understanding others’ perspectives) and affective empathy (sharing others’ emotions), with cognitive empathy being impaired but affective empathy often intact.
2010s: Mirror Neuron Research: Mirror neuron dysfunction is studied as a potential cause of difficulties with social imitation and understanding others' actions in autism.
2017: Social Skills Training: Social skills training programs target social cognition deficits, such as recognizing emotions and understanding social cues, improving social functioning.
2018: Social Cognition and Cognitive Flexibility: Research shows that autistic individuals process social information differently, leading to interventions focused on cognitive flexibility and social interaction.
2020s: Social Motivation Theory: Social motivation theory suggests that reduced motivation for social interactions, rather than an inability to understand social cues, contributes to autism’s social challenges.
Early Identification and Intervention
1990s-2000s: Early Screening: Advances in early screening tools, enable earlier detection and more effective interventions.
2010s: Early Behavioral Interventions: Research on early interventions ABA, Early Start Denver Model (ESDM), and Pivotal Response Training (PRT).
Autistic Women and Gender Differences
2010s: Autism in Females: Research revealing that many autistic women and girls are underdiagnosed due to masking behaviors.
2020s: Late Diagnosis in Women: Studies emphasize the need for gender-sensitive diagnostic criteria and appropriate supports for these individuals.
2010-20s: Nonbinary Individuals: Studies emphasize the need for gender-sensitive diagnostic criteria. Researchers find that nonbinary and transgender autistic individuals are also often underdiagnosed or misdiagnosed, as their experiences may not align with traditional diagnostic frameworks.
Family and Caregiver Research
2000s: Family Impact: Research highlights the emotional, financial, and logistical burdens faced by families and caregivers of autistic individuals, calling for family-centered support services.
2000s: Sibling Research: Studies explore the experiences of siblings of autistic individuals, prompting the development of support groups and resources for siblings.
Neurodiversity and Self-Advocacy
2010s: Rise of the Neurodiversity Movement: The neurodiversity movement led by autistic self-advocates promotes the view of autism as a natural variation of human experience, leading to a strengths-based approach to autism research.
2020s: Advocacy and Policy Changes: push for more inclusive research practices and participatory models, making autistic individuals co-creators of research.
TedX Talk
Starting off Disability Awareness Month with my TedX talk
https://www.
Young Professional Award
On behalf of the AUCD Awards Committee, it is with great pleasure that we congratulate you on being selected to receive AUCD’s 2024 Young Professional Award!
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We thank you for your service and commitment to people with disabilities and those who work with and for them. We are so pleased to honor your work and hope that you can be there for the Awards Ceremony so that we can publicly thank you for all you have done.
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This award is presented to professionals in the disabilities field under the age of 40 years who have demonstrated dedication and commitment to people with disabilities and their families through their work as a bridge between the academic sector and the community.
Section 504
"No otherwise qualified individual with a disability in the United States... shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance."
This one line powerful statement is the heart of Section 504 of the Rehabilitation Act of 1973, a landmark piece of legislation that laid the foundation for disability rights in the United States. It was a groundbreaking step towards ensuring equal opportunities for individuals with disabilities in various aspects of public life.
The journey to its enactment and enforcement is a compelling narrative of relentless activism, dramatic protests, and the unwavering determination of a community fighting for their rights.
The Birth of Section 504
In 1973, the first federal civil rights protection for people with disabilities, Section 504 of the Rehabilitation Act, was signed into law. Section 504 specifically prohibits discrimination against persons with disabilities by any program or activity receiving federal financial assistance. This law was based on the language of previous civil rights laws that protected women and minorities, recognizing that society had historically treated people with disabilities as second-class citizens based on deeply held fears and stereotypes. These attitudes had translated into pity and persecution and later into policies that were based on paternalism.Activism and the 504 Sit-in
Despite its promise, the implementation of Section 504 faced significant delays and resistance. Between 1973 and 1977, no regulations were issued to enforce it. During this period, strong regulations were drafted by attorneys in the Office for Civil Rights and sent to the Secretary of Health, Education, and Welfare (HEW) with a recommendation to publish them for public comment. However, opposition from covered entities such as hospitals, universities, and state and county governments led to much delay. The disability community filed a lawsuit in federal court, and the judge ruled that the regulations must be issued but did not specify when.
In response to these delays, the disability community mobilized. One of the most significant actions was the 504 Sit-in at the San Francisco Federal Building in 1977, led by activists like Judy Heumann and Kitty Cone. This sit-in, which lasted 26 days, was the longest nonviolent occupation of a federal building in U.S. history. Kitty Cone, in her "Short History of the 504 Sit-in" on the Disability Rights Education and Defense Fund (DREDF) website, recounts the strategic planning and broad community support that sustained the protest.
Cone writes, "In the Bay Area, a broad cross-disability coalition, the Emergency 504 Coalition, began building for a rally on April 5th, knowing we’d sit in afterwards. We set up committees to take on different tasks such as rally speakers, media, fund-raising, medics, monitors, publicity, and outreach." The outreach committee's success in garnering broad community support from churches, unions, civil rights organizations, and others proved invaluable once inside the building. The Black Panther Party and Glide Memorial Church provided food, and the International Association of Machinists facilitated the transport of demonstrators to Washington."
The sit-in participants endured physically grueling conditions, sleeping on the floor and dealing with stress about their families, jobs, and health. Cone describes how all participants met daily to make tactical decisions in flowing, creative meetings that often went on for hours. This process was critical for developing consensus and a course of action.
Joseph Califano and the Regulations
The central figure of resistance within the government was Joseph Califano, the Secretary of HEW. Califano was reluctant to sign off on the regulations necessary to enforce Section 504. The activists' persistence, however, eventually bore fruit. Public pressure mounted, and the media attention garnered by the protests made it impossible to ignore their cause. On April 28, 1977, Califano finally signed the regulations, making Section 504 enforceable and marking a monumental victory for disability rights.
Impact of Section 504
Section 504 has had a profound impact on the lives of individuals with disabilities and on American society as a whole. Key outcomes include:
- Educational Opportunities: Section 504 has ensured that students with disabilities have access to educational opportunities and accommodations, leading to more inclusive schools and universities.
- Accessibility: The law has prompted public and private entities that receive federal funding to make their programs and facilities accessible to individuals with disabilities.
- Foundation for Future Legislation: Section 504 set the stage for subsequent disability rights laws, including the Americans with Disabilities Act (ADA), by establishing the principle that discrimination based on disability is illegal.
The false ideal of independence
Essential piece by@harisri108 about autism and loneliness. By making "independence" the platonic ideal for all people, it can wind up breeding the type of loneliness that can harm #ActuallyAutistic people. via
@time
https://time.com/author/hari-srinivasan/
Greek Theatre
Fond memories of Greek Theatre, built in 1903.
Bonfire Night before the Big Game and who can forget the finale - Psychology Dept Commencement where I gave a speech on stage.
Feelings and Body Signals in Autism
[Plain Language for Lay Audience]
Alexithymia means having trouble recognizing and describing your own emotions. People with alexithymia often can't tell what they are feeling and find it hard to explain their emotions to others. This can make it difficult to connect with others and share feelings.
Interoception is the ability to sense and understand signals from inside your body. These signals include things like hunger, thirst, heartbeat, temperature, breathing, and the need to go to the bathroom. Interoception helps keep our bodies balanced and healthy by letting us know what we need and how we feel inside. It also plays a big role in how we experience and control our emotions by linking our body sensations to our feelings.
Both alexithymia and interoception issues can happen together in autism.
Autistics might have unusual interoceptive awareness, meaning they can be more or less aware of their body signals than other people. This can cause problems like not noticing when they are uncomfortable or sick, or misunderstanding changes in their emotions, which are important for social interactions and taking care of their health.
Here are some examples of how this can affect autistics:
- Eating: Not knowing when they feel full, which can lead to overeating.
- Anxiety: Not feeling their heart race when they are anxious, making it harder to know they are stressed.
- Pain: Feeling an injection as more painful than usual, or not showing pain, which can confuse doctors.
- Exercise vs. Anxiety: Mixing up a racing heart from exercise (good) with a racing heart from fear (not good).
- Toilet Training: Taking longer to learn to use the toilet or having random accidents even into adulthood because their body can't recognize when they need to go.
From a brain science perspective, the insular cortex and the anterior cingulate cortex (ACC) are important for interoception. The insula helps combine body signals with thoughts and emotions, while the ACC is involved in feeling pain. In autism, these brain areas might work differently, affecting how body signals and emotions are processed. Studies using brain scans have shown that the insula reacts differently during body signal tasks in autism, which might explain their unique interoceptive experiences.
Addressing both alexithymia and interoception is important for improving emotional understanding and overall well-being. Helping autistics improve their interoceptive skills can lead to better emotional control and awareness, making it easier for them to connect with others and take care of their health.
2 Versions of this article:
Plain Language for Lay Audience
Other Articles in Plain Language #PlainSpeak
Hybrid employment models
Mainstream discussions around remote and hybrid employment models often focus on productivity, or the perceived reduced networking and socialization.
Paradoxically, these very reasons serve to increase productivity for many disabled people, including the autism community.
- Hari Srinivasan, Fortune
Read full article at https://fortune.com/2023/07/27/flexible-work-critics-using-same-arguments-were-used-oppose-disabled-ramps-closed-captioning-equity-access-never-optional-remote-work-careers-hari-srinivasan/
Thriving and Flourishing.
“Positive psychology in the context of autism… is people with autism thriving and flourishing, and moving beyond surviving." - Hari Srinivasan
https://www.liebertpub.com/doi/10.1089/aut.2024.38246.pw
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