Do you grow out of autism?

 The understanding of autism has come full circle—from Kanner’s original view that it is a lifelong condition, to the mid-century belief that it was something you might grow out of, and now back to recognizing autism as a spectrum of experiences that continue into adulthood. This evolving perspective has profound implications for how we support and accommodate autistics at every stage of life.

Kanner’s Early View: Autism as a Lifelong Condition

In 1943, child psychiatrist Leo Kanner published his groundbreaking paper on autism, describing it as a rare but distinct developmental disorder. He identified autism as a condition that appeared from early infancy and persisted throughout life, believing it to be innate. His observations of children with social difficulties, repetitive behaviors, and an “insistence on sameness” led him to conclude that these traits were deeply embedded and unlikely to disappear.

Kanner’s view of autism was revolutionary at the time, as he set autism apart from other mental health conditions. He noted that while some children might improve with intervention, autism itself was a lifelong condition. This perspective laid the foundation for early autism research and clinical practice.

The Shift: Autism as a Childhood Disorder

By the mid-20th century, the focus on autism began to shift, and the condition came to be viewed more as a childhood disorder. Several factors contributed to this change:

1. Lack of Longitudinal Data: In the early years of autism research, there was little long-term data on how autistic children fared into adulthood. Without follow-up studies to track their development, the focus remained on interventions aimed at children, especially those designed to improve communication and social skills. This narrow focus reinforced the belief that autism was primarily a childhood condition, and there was little understanding of how the condition evolved across the lifespan.

2. Influence of Developmental Psychology: During the 1950s and 1960s, autism was studied within the context of developmental psychology, which emphasized stages of growth in children. Autism became viewed through the lens of early childhood development, which often led to the assumption that autistic children could “grow out of” the condition. The lack of focus on adult outcomes further entrenched the belief that autism was something that primarily affected children.

3. Institutionalization and Societal Factors: A significant factor in the mid-century shift was the institutionalization of autistic individuals, especially those with more severe symptoms. During much of the 20th century, many autistic children were placed in institutions, often isolated from the community. This removed many autistic adults from public view (out of sight is out of mind) and contributed to the idea that autism was primarily a childhood disorder. Without tracking autistic individuals into adulthood, the misconception persisted that autism either diminished over time or became less visible as people aged.

4. DSM-III and the Diagnostic Focus: The third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III), published in 1980, played a role in reinforcing the view of autism as a childhood condition. The DSM-III categorized autism as a disorder that first appeared in childhood, and it did not fully address how autism might manifest in adults. While this edition was important in standardizing the diagnosis, it contributed to the ongoing focus on childhood autism.

The Shift Back: Autism as a Lifelong Spectrum

In the late 20th century, research began to challenge the idea that autism was solely a childhood disorder. Several key developments led to the shift back to recognizing autism as a lifelong condition:

1. Longitudinal Studies in the 1970s and 1980s: As researchers began following autistic individuals into adulthood, they found that many core features of autism—such as social and communication challenges—persisted throughout life. These studies demonstrated that while some individuals could develop coping strategies or improve in certain areas, autism did not simply go away with age. This long-term data challenged the earlier view that autism was something children could outgrow.

2. Broader Recognition of the Autism Spectrum: The 1994 publication of the DSM-IV marked a turning point in how autism was understood. The DSM-IV expanded the definition of autism to include related conditions, such as Asperger syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). These changes reflected a growing awareness that autism manifested differently in individuals and affected people across the lifespan. The concept of an autism "spectrum" began to take hold, highlighting the diverse experiences of autistic individuals, including those who may have been overlooked in earlier childhood-focused models.

3. Advocacy and Autistic Voices: The voices of autistic adults themselves began to play a key role in shifting the narrative. As more autistic individuals spoke about their experiences, it became clear that autism affected them well into adulthood, and they advocated for recognition, rights, and support that extended beyond childhood. This push for greater inclusion helped drive the shift toward understanding autism as a lifelong condition.

4. DSM-5 and the Unified Spectrum: The publication of the DSM-5 in 2013 solidified the shift back to understanding autism as a lifelong condition. The DSM-5 introduced the term Autism Spectrum Disorder (ASD), which combined previous diagnoses under one umbrella. By viewing autism as a spectrum, the DSM-5 recognized that autism presents differently in individuals and persists across all stages of life. This marked a significant step toward integrating the idea that autism is not something one grows out of but a lifelong condition that requires ongoing understanding and support.

The Implications of a Lifelong Understanding

The return to understanding autism as a lifelong spectrum has profound implications for how society supports and accommodates autistic individuals. With this recognition, there is a growing focus on services that support autistic adults in areas such as employment, healthcare, and independent living. This shift also emphasizes the need for tailored support throughout different life stages, including transitions from school to work and aging as an autistic adult.

Additionally, this broader understanding allows for more research into the needs of autistic adults, including mental health, relationships, and aging. As society moves away from the childhood-only model of autism, there is greater awareness of the spectrum of experiences that autistic individuals face, and a commitment to supporting them throughout their lives.

In PlainSpeak: Plain Language for the Lay Reader

The understanding of autism has come full circle—from Kanner’s original view that it is a lifelong condition, to the mid-century belief that it was something you might grow out of, and now back to recognizing autism as a spectrum of experiences that continue into adulthood. This shift has significant implications for how we support and accommodate autistic individuals throughout their lives.

Kanner’s Early View: Autism as Lifelong

In 1943, Leo Kanner first described autism as a lifelong condition. He believed it appeared in early infancy and persisted into adulthood, noting traits like social challenges, repetitive behaviors, and a need for sameness. Kanner thought that while some children could improve with intervention, autism itself was unlikely to disappear.

The Shift to Autism as a Childhood Disorder

By the mid-20th century, autism came to be viewed primarily as a childhood disorder. Several factors contributed to this shift:

• Lack of Longitudinal Data: Early research on autism didn’t track autistic individuals into adulthood, leading to the focus on childhood interventions. The lack of long-term studies contributed to the misconception that autism was a childhood condition.

• Developmental Psychology Influence: Autism was often studied within childhood development models, reinforcing the idea that it was something children could potentially "grow out of" as they developed.

• Institutionalization: Many autistic children were institutionalized, particularly those with severe symptoms. This removed autistic adults from public view, further reinforcing the idea that autism primarily affected children.

• DSM-III (1980): The DSM-III reinforced autism as a childhood disorder, as it primarily focused on diagnosing autism in children and didn’t fully address how autism manifests in adults.

The Shift Back to Lifelong Understanding

By the 1970s and 1980s, research began to show that autism was not something individuals outgrew. Several developments led to the recognition of autism as a lifelong condition:

• Longitudinal Studies: Research following autistic individuals into adulthood revealed that many core traits, such as social and communication challenges, persisted throughout life.

• Broader Spectrum Recognition: The 1994 publication of the DSM-IV expanded the definition of autism to include related conditions like Asperger syndrome, acknowledging that autism manifests differently across the lifespan.

• Autistic Advocacy: Autistic adults began advocating for recognition and support, making it clear that autism affects people well into adulthood, driving a push for lifelong understanding.

• DSM-5 (2013): The DSM-5 introduced Autism Spectrum Disorder (ASD), recognizing that autism exists on a spectrum and persists across all life stages. This marked a formal acknowledgment that autism is not something people grow out of, but a lifelong condition requiring ongoing support.

Implications of a Lifelong Perspective

This shift back to viewing autism as lifelong has significant implications for how society supports autistic individuals. There is now a greater focus on providing services for autistic adults in areas like employment, healthcare, and independent living. As the understanding of autism grows, so does the commitment to supporting autistic individuals at every stage of life, ensuring that their needs are met not only in childhood but well into adulthood.

UNCRPD

UNCRPD. 

As an undergrad I had the opportunity to work on 42 case studies of the implementation of the UNCRPD by signatory countries. I learned so much about disability challenges, especially in under-resourced nations.  Thank you Professor Pineda for that internship opportunity. 

Disability Rights and both human rights and civil rights. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) represents a monumental step towards ensuring equal rights and inclusion for people with disabilities worldwide. 

What is the UNCRPD… Read on 

The Birth of UNCRPD

UNCRPD’s journey began in the early 2000s, rooted in a growing recognition that existing international human rights instruments were insufficient in protecting the rights of persons with disabilities (PWD). The Convention was adopted by the UN General Assembly on December 13, 2006, and it opened for signature on March 30, 2007 where  it received an overwhelming response; with 82 countries signing the Convention on opening day, making it the highest number of signatories in history to a UN Convention on its opening day. As of today, there are 182 parties to the Convention, including the European Union, which signed as a regional integration organization.

The drafting process of the UNCRPD was marked by unprecedented collaboration between governments and civil society, particularly organizations of PWDs. The "Nothing about us without us" motto became a central theme, ensuring that the voices of PWDs were at the forefront of the discussions. 

The first Conference of States Parties (COSP) to the UNCRPD was held in 2008 at the UN Headquarters in New York. This conference is an annual event where signatories gather to discuss progress, challenges, and strategies related to the implementation of the Convention. The COSP plays a crucial role in maintaining momentum and ensuring accountability among the States Parties.

Since its adoption, the UNCRPD has led to significant changes in legislation and policy around the world. Countries that have ratified the Convention are obligated to align their national laws and policies with its principles. This has resulted in greater awareness, increased accessibility, and more inclusive education and employment opportunities for PWDs. The Convention continues to inspire movements and advocacy efforts globally, reinforcing the idea that disability rights are human rights and that every person deserves to live with dignity, autonomy, and equality.

The UNCRPD is more than just a legal document; it is a powerful tool for change, reflecting a global commitment to ensuring that PWDs enjoy the same rights and opportunities as everyone else. Its history, structure, and impact demonstrate the ongoing efforts to build a more inclusive world where diversity is celebrated, and everyone is empowered to participate fully in society. The contributions of dedicated disability rights activists were instrumental in its creation and continue to drive its implementation, ensuring that the principles of the Convention are realized in the lives of persons with disabilities worldwide.

The U.S. and the CRPD

The United States signed the UNCRPD on July 30, 2009, indicating its support for the treaty's principles and its intent to promote and protect the rights of individuals with disabilities. However, despite signing the UNCRPD, the United States Senate has not ratified the treaty. This means that, although the U.S. has expressed its endorsement of the CRPD by signing it, the treaty has not been approved by the U.S. Senate and thus is not legally binding in the United States. The U.S. continues to adhere to its own disability rights legislation, such as the ADA, which served as an inspiration for the UNCRPD.

Main Sections of the UNCRPD

The UNCRPD is a comprehensive document that outlines the rights of disabled persons and the obligations of States Parties to promote, protect, and ensure these rights. It is divided into several key sections:

1. Preamble: This sets the context and outlines the underlying principles of the Convention.

2. General Principles (Article 3): Includes principles such as respect for inherent dignity, non-discrimination, full and effective participation and inclusion in society, respect for difference, and acceptance of persons with disabilities as part of human diversity.

3. General Obligations (Article 4): States Parties commit to ensuring and promoting the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination.

4. Specific Rights:

• Equality and Non-Discrimination (Article 5)

• Accessibility (Article 9)

• Right to Life (Article 10)

• Equal Recognition Before the Law (Article 12)

• Access to Justice (Article 13)

• Liberty and Security of Person (Article 14)

• Freedom from Torture (Article 15)

• Freedom from Exploitation, Violence and Abuse (Article 16)

• Living Independently and Being Included in the Community (Article 19)

• Education (Article 24)

• Health (Article 25)

• Work and Employment (Article 27)

• Participation in Political and Public Life (Article 29)

5. Implementation and Monitoring (Articles 33-40): These articles describe the measures for implementation and monitoring, including the establishment of a Committee on the Rights of Persons with Disabilities to oversee the Convention's implementation.

Related posts: #Disability_History, #Disability_Legislation #Disability_Rights, #Policy_Law

IDEA

 Understanding the Individuals with Disabilities Education Act (IDEA)

In her memoir "The Heumann Perspective," the late legendary disability rights activist, Judy Heumann recounts how she was refused entry to public school as a child because she was deemed a "fire hazard." Her story sets the stage for understanding the importance and impact of the Individuals with Disabilities Education Act (IDEA).

IDEA was born out of a broader movement for disability rights in the United States, heavily influenced by the civil rights movements of the 1960s and 1970s. Before its enactment, many children with disabilities were excluded from public education or received inadequate services. Recognizing the need for federal legislation to protect the educational rights of these children, the Education for All Handicapped Children Act (EHA) was enacted in 1975. This marked a significant shift towards inclusive education and equal opportunities. On October 30, 1990, the act was reauthorized and renamed the Individuals with Disabilities Education Act (IDEA). Further amendments in 1997 and 2004 were made to better serve students with disabilities, ensuring they have access to a free and appropriate public education
Influential Figures in the Making of IDEA

Several key figures and advocacy groups played pivotal roles in the development and implementation of IDEA:

1. Judith Heumann: A lifelong disability rights advocate, Heumann's activism and leadership, particularly through her work with the Center for Independent Living and her role in the U.S. Department of Education, were instrumental in shaping policies related to special education.

2. Tom Harkin: A U.S. Senator known for his strong advocacy for disability rights, Harkin played a significant role in the passage and reauthorization of IDEA, ensuring that the needs of students with disabilities were addressed in federal law.

3. Parent Advocacy Groups: Organizations like the National Association for Parents of Children with Visual Impairments (NAPVI) and the National Down Syndrome Congress (NDSC) were crucial in lobbying for the rights of children with disabilities and the creation of IDEA.

Key Provisions of IDEA

IDEA is designed to ensure that children with disabilities receive a free and appropriate public education (FAPE) tailored to their individual needs. The main provisions of IDEA include:

1. Free Appropriate Public Education (FAPE): Ensures that all disabled children have access to public education at no cost to their families.

2. Individualized Education Program (IEP): Requires schools to develop an IEP for each student with a disability, outlining specific educational goals and the services the student will receive.

3. Least Restrictive Environment (LRE): Mandates that disabled children should be educated alongside their non-disabled peers to the greatest extent appropriate.

4. Parental Participation: Ensures that parents are involved in decision-making processes regarding their child's education.

5. Procedural Safeguards: Provides protections for students and their families, including the right to due process hearings and mediation to resolve disputes.

6. Evaluation and Eligibility: Establishes criteria for identifying and evaluating children with disabilities to determine their eligibility for special education services.

7. 
   

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:

• 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."

Developmental Disabilities Surveillance and Research Program:

• Extends the program's authorization to 2029.
• Updates terminology to be more inclusive and accurate.

Autism Education, Early Detection, and Intervention:

• 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.

Interagency Autism Coordinating Committee:

• Requires annual summaries and biennial updates on activities.
• Extends the committee's authorization to 2029.

Reports to Congress:

• Updates the timeline for required reports to 2024.
• Adds a requirement for a report on young adults with autism transitioning to adulthood.

National Institutes of Health (NIH) Research:

• 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.

Technical Assistance for Communication Tools:

• 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.

Areas of Funding Priority:

• 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

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.

ADA is 34 years old

Celebrating the 34th Anniversary of the Americans with Disabilities Act

On July 26, 1990, President George H.W. Bush signed the Americans with Disabilities Act (ADA) into law, marking a historic milestone for disability rights. The ADA has been instrumental in prohibiting discrimination against the disabled in all areas of public life, including jobs, schools, transportation, and public and private places open to the general public.

The journey to the ADA's signing was fueled by the relentless efforts of dedicated disability rights activists. One pivotal moment in this movement was the televised and widely viewed Capitol Crawl on March 12, 1990. Hundreds of disability rights activists gathered in Washington, D.C., to urge Congress to pass the ADA. As part of the protest, dozens of individuals with disabilities left their wheelchairs and crawled up the 83 stone steps of the U.S. Capitol building, dramatically demonstrating the barriers they faced in everyday life. Among them was an 8-year-old girl named Jennifer Keelan, whose participation powerfully symbolized the need for change. Her determination and courage, along with that of others, highlighted the urgent need for comprehensive legislation to protect the rights of people with disabilities.

Key figures in the disability rights movement played crucial roles in advocating for the ADA. The late Judith Heumann (we miss you Judy), a lifelong advocate for the rights of people with disabilities, was instrumental in the fight for the ADA. Her leadership and tireless advocacy helped bring disability rights to the forefront of national consciousness. Ed Roberts, known as the father of the independent living movement, also significantly influenced the disability rights movement, emphasizing the importance of self-determination and community-based support. There were countless others whose contributions were vital in making the ADA a reality, reflecting a broad and united effort toward equality and inclusion.

The ADA consists of five titles, each addressing different aspects of public life:

1. Title I – Employment: Prohibits discrimination against individuals with disabilities in employment and requires employers to provide reasonable accommodations.
2. Title II – Public Services: Ensures that people with disabilities have equal access to public services, programs, and activities, including public transportation.
3. Title III – Public Accommodations: Prohibits discrimination in public accommodations such as restaurants, hotels, and stores, and requires accessible facilities.
4. Title IV – Telecommunications: Mandates accessible telecommunications services, including relay services for individuals with hearing and speech impairments.
5. Title V – Miscellaneous Provisions: Contains various provisions, including protections against retaliation and coercion, and guidelines for the implementation of the ADA.

It's humbling that laws like the ADA enable disabled individuals like me to avail of opportunities such as getting into college or even embarking on a PhD journey. Such a thing would have been unimaginable earlier. The ADA's passage represents the collective effort and resilience of countless individuals who fought for equality and accessibility. As we commemorate the 34th anniversary of the ADA, we honor the legacy of those activists and reaffirm our commitment to advancing the rights and inclusion of people with disabilities. 

https://www.whitehouse.gov/briefing-room/presidential-actions/2024/07/25/a-proclamation-on-the-anniversary-of-the-americans-with-disabilities-act-2024/

Related Posts: [Disability Legislation], [Disability Rights], [Disability History] [Autism Cares], [ADA], [Capitol Crawl] [Olmstead Act], [Section 504], 

Celebrating 25 Years of the Olmstead Decision

 Celebrating 25 Years of the Olmstead v. L.C Decision

Today marks the 25th anniversary of the landmark 1999 Olmstead v. L.C. case, a pivotal moment that ignited the de-segregation and de-institutionalization of people with disabilities. This case paved the way for community-based supports and services, transforming the lives of countless individuals.

Two years ago, I had the honor of participating in a White House panel discussion commemorating the Olmstead Act's anniversary. The significance of the Olmstead Act cannot be overstated. Just a few decades ago, individuals with significant disabilities, including "higher-support" autistics, were often placed in institutions, hidden away from society.

Back then, families were still advised to send their autistic children away before they became too attached. Many "higher-support" autistics, unable to advocate for themselves, were at the mercy of "well-meaning" professionals who claimed institutionalization was best.

As a child, I didn't fully grasp what institutions were, my only reference being brief scenes from the movie Rain Man. It wasn't until college, during my Disability Studies courses with Professor Victor Pineda, that I truly understood the horrors of institutionalization. On the first day of class, we watched the documentary Lives Worth Living, which highlighted the disability rights movement. One of the most shocking segments featured Willowbrook, an institution in New York where children with disabilities lived in appalling conditions. The doctors at Willowbrook were so alarmed that they invited reporter Geraldo Rivera to expose the situation, shocking the world.

I used to think my low-expectation special education classrooms were degrading enough, but the thought of living in such inhumane institutions is truly chilling. The 2020 documentary Crip Camp mentions a camper from Willowbrook who would overeat to the point of sickness because he never got enough food there.

This history underscores the profound significance of the Olmstead Act for people like me. While we have made significant strides in disability rights, there is still much work to be done. I am deeply grateful to the disability rights icons who have paved the way, making it possible for many of us to enjoy the freedoms we often take for granted.

Though challenges remain, we continue to move forward, inspired by the resilience and determination of those who fought for our rights. Here's to 25 years of progress and many more to come.

Related posts: #Disability_History, #Disability_Legislation #Disability_Rights,  #Olmstead_Act #Policy_Law

Reclaiming "Person with Autism"

I'm reclaiming the use of "person with autism" and am not offended by it. It is part of who I am. 

When you reclaim language as a positive, it cannot be used against you. Others lose the power to use it as a negative against you.

I am both 'autistic' and a 'person with autism'

IFL v PFL

Identify First Language (Autistic/ disabled) v Person-First Language (Person with Autism, Person with Disability) 

Seriously, with the amount of airtime spent on this topic,  one would think this is the only and primary issue facing autism. Can we move on already and just accept both. We have SO MANY CRITICAL ISSUE TO FOCUS ON and this is not one of them. 

Let me remind you, person-first-language was literally the language of the disability rights movement (DRM). Without that, none of us can even move about in society. All our legislation uses this language

• Americans with Disabilities Act
• Individuals with Disabilities Education Act
• United Nations Conference on Rights for Persons with Disabilities (UNCRPD)

These laws were meant to uplift us. So how can "person with autism" be degrading?

I was told that this was projects fragmentation, a separation of our autism from our human self. In fact if that is even possible, there are aspects of my 'undesirable parts of autism" that I would very much like to distance from, if that is even possible - like my behavioral challenges, mood swings, my OCD, my health issues. So that argument does not fly because I can't even separate those even if I want.  So why are we having these circular arguments. 

And if we think something is undesirable, instead of fighting it, let's take control of the narrative, let's own it, let's rebrand and repurpose it. When you reclaim language as a positive, it cannot be used against you. Others lose the power to use it as a negative against you.

The wheelchair user community have done this already - they have turned "cripple" into the very positive "crip" (Krip Hop, Crip Camp the Oscar nominated movie). That is such a BRILLIANT move and I am in deep admiration. I've heard one of my disabled professors, Dr Victor Pineda, being referred to as a "super-crip" by Stuart James (Exec Director of  Berkeley Center for Independent Living) and I thought that term was so super cool. 

Autism was a latecomer to the DRM and we adopted IFL later as well. 

If a person wants to use IFL, that's fine too.  

If a person want to continue using PFL that's fine too. 

I would say let's use and encourage both. 

Why is this important?

A few years back there was an NYT article that suggested re-introducing state run institutions. I think you will agree that institutions is "BAD" on so many levels -  negates the entire DRM efforts which fought to get people out of institutions. There was a twitter storm over the article. But the criticism was NOT about INSTITUTIONS, but rather over the fact of "person with autism" used in the article. 

How is "person with autism" more important than re-introduction of institutions? 

What is this obsession of the autism community with a narrow focus on this one little issue of person-first over everything else. Our priorities are SO MESSED UP. 

I understand that people can have preferences but seriously it does not merit the amount of discussion time it currently gets. 

LETS ENCOURAGE AND ACCEPT BOTH. Let's make both as positive for us, so we don't have to keep circling this one issue. 

Lets' move onto the real issues in autism please. 

I'm reclaiming the use of "person with autism" and am not offended by it. It is not diminishing who I am. I am both 'autistic' and a 'person with autism'

- by Hari who is both "Person with Autism" and "Autistic"

PS: Language usages

Brits say : I'm going to visit my friend"

Americans like to say: "I'm going to visit with my friend"

 

Did the additional "with" change the meaning. 

504 sit in

Remembering the disability rights leaders and the landmark 504 sit in, that laid the path for today's generation. 

 

Ed Roberts Day

Ed Roberts Day, celebrated annually on January 23rd, marks a significant moment to reflect on the extraordinary life and enduring legacy of a trailblazer in disability rights. Ed Roberts, an alumnus of the University of California, Berkeley, was not just a figurehead but a formidable force in the movement for the rights and recognition of people with disabilities.

Born in 1939, Roberts' journey into activism began with his personal battle with polio at the age of 14. Despite being paralyzed from the neck down and dependent on a respirator, his indomitable spirit led him to challenge societal norms and barriers. His admission to UC Berkeley in 1962 marked the beginning of a transformative era, both for himself and for the university.

At Berkeley, a place known for its spirit of revolution and change, Roberts ignited a movement that would reshape the landscape of disability rights. He became the first student with severe disabilities to attend the university, living in Cowell Hospital (now the site of Haas Business School) since the dorms were not accessible. This experience was not just a testament to his resilience, but also a stark indicator of the need for systemic change.

Roberts' most notable accomplishment was the founding of the Physically Disabled Students Program (PDSP), the first program of its kind in the country. This initiative, which began as a small, student-led effort, evolved into the Disabled Students' Program, a model replicated by universities and colleges nationwide. The program not only provided essential services but also fostered a community and a sense of belonging among disabled students, offering academic guidance, peer support, and advocacy.

Beyond Berkeley, Roberts' impact continued to grow. He became a key figure in the independent living movement, advocating for policies and practices that promoted autonomy and equality for people with disabilities. His work culminated in the development of the Berkeley Center for Independent Living, a groundbreaking model for disability services and advocacy.

Ed Roberts' life is a beacon of inspiration, demonstrating the power of resilience, advocacy, and the relentless pursuit of equality. His legacy at UC Berkeley and beyond continues to resonate, reminding us of our collective responsibility to build a more inclusive and equitable world. Ed Roberts Day is not just a commemoration but a call to action, a day to honor a visionary leader and to recommit ourselves to the principles he championed.

The Story of Autism CARES Act.

A Plain Langauge Version

Once upon a time in Washington, D.C., a group of people got together to help kids and adults with autism. These people wanted to make sure that everyone with autism could get the help they needed to lead the best lives they could.

How It All Began

The story starts back in 2006 with something called the Combating Autism Act. This was a big, important rule that said, "Let's find out more about autism and help people who have it." Later, this rule got a new name: the Autism CARES Act. "CARES" stands for Collaboration, Accountability, Research, Education, and Support. That’s a lot of big words, but they all mean good things for helping people with autism!

Here’s how the Autism CARES Act helps:

• Learning More About Autism: The Act gives money to scientists so they can study autism. They try to understand what causes it, how to spot it early, and the best ways to help autistics.
• Teaching Everyone: It helps teach everyone about autism, like what signs to look for and how to help. This means doctors, teachers, and even friends can understand and support autistics better.
• Helping with Services: It gives money to places like schools and hospitals to make sure kids with autism get the help they need. This could be special classes, therapists, or even fun activities that make learning easier and more enjoyable.
• Working Together: It makes sure that different groups, like schools, doctors, and scientists, all work together. This way, they can share what they know and make even better plans to help autistic people.
• Support for a Lifetime: The Act doesn’t just think about kids but also grown-ups with autism. It helps make sure they can find jobs, live on their own, and do all the cool things they want to do.

The Heroes Behind the Act

A lot of people worked really hard to make the Autism CARES Act happen. There were senators, representatives, autistics and many groups who care about people with autism. They listened to stories from autistics and families to understand what help was needed the most.

Autism Cares Act

The Autism Cares Act is in the process of re-authorization in the halls of congress for a while now. Happy to report that my Time Magazine article "Who Autism Research Leaves Out" has been used in its the re-negotiations discussion

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 Understanding the Autism CARES Act

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act is a significant piece of legislation aimed at addressing the needs of Autistics & their families. 

The Autism CARES Act was first enacted as the Combating Autism Act in 2006, and it has been reauthorized and expanded in subsequent years. The original Combating Autism Act focused on increasing research, awareness, and early detection of autism. It was reauthorized as the Autism CARES Act in 2014, and then again in 2019, to ensure continued support and enhancements in these areas.

Key Provisions of the Autism CARES Act

The Autism CARES Act is designed to improve the quality of life for autistics through a comprehensive approach that includes research, services, and support. The main provisions of the Act include:

1. Research: The Act provides funding for the National Institutes of Health (NIH) to conduct and support research on autism. This includes studies on the causes, diagnosis, early detection, prevention, and treatment of autism.

2. Awareness and Education: The Act supports initiatives to increase public awareness about autism, including early signs and intervention strategies. It also funds education and training programs for healthcare professionals.

3. Services and Support: The Act provides grants to states and organizations to improve services for individuals with autism and their families. This includes support for early intervention, healthcare, and social services.

4. Federal Coordination: The Act mandates the continuation of the Interagency Autism Coordinating Committee (IACC), which is responsible for coordinating all federal efforts related to autism research and services.

5. Lifespan Perspective: The reauthorization of the Act in 2019 placed a greater emphasis on the needs of individuals with autism across their lifespan, including transitions from school to employment and independent living.

Interesting Historical Context

The Autism CARES Act builds on the foundation laid by the Combating Autism Act of 2006. The original Act was a response to the growing prevalence of autism diagnoses and the need for coordinated federal action. The reauthorizations in 2014 and 2019 reflect a continued commitment to addressing the evolving needs of the autism community, with a focus on research, early intervention, and support across the lifespan.

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The Capitol Crawl

In the annals of history, there are moments that define the strength of the human spirit and ignite a spark of change. One such moment that will forever be etched in the hearts of millions is the remarkable "Capitol Crawl." On a day that exuded courage, hope, and determination, 150 passionate activists, including a young and incredibly brave 8-year-old girl, converged upon Capitol Hill to demand justice and the passage of the Americans with Disabilities Act (ADA).

Wheelchairs and mobility aids were cast aside, not in surrender, but in a powerful symbol of defiance against a society that had overlooked the rights and dignity of persons with disabilities for far too long. Crawling up the monumental steps of Capitol Hill, these extraordinary individuals weren't just making a physical journey; they were forging a path towards societal inclusivity, equality, and respect.
 

ADA 33

"It is hard for younger generations to imagine a world without the ADA, but before it existed, if you were disabled, stores could turn you away and employers could refuse to hire you. Transit was largely inaccessible. America simply was not built for all Americans, but courageous activists pushed to change that. In 1973, the Congress passed the landmark Rehabilitation Act, banning discrimination by any federally funded entity. Then, 17 years later, a bipartisan group of legislators persevered in passing the ADA, banning discrimination against people with disabilities in most areas of public life, from the workplace and public schools to public transit and telecommunications.

The ADA has had a profound impact, but we still have much more work to do...."

 https://www.whitehouse.gov/briefing-room/presidential-actions/2023/07/25/a-proclamation-on-anniversary-of-the-americans-with-disabilities-act-2023/

Nothing about us, without us.

The phrase "Nothing about us without us" (NAUWU) gained prominence in the 1980s as disability rights movement began to gain momentum and assert the rights of disabled individuals. It resonated with the broader social justice movements that advocated for marginalized communities to have control over their own destinies and be actively involved in decision-making processes.

NAUWU represents a powerful demand for inclusivity, equal participation, and the recognition of disabled individuals as the experts of their own lives. It encapsulates the ongoing struggle for disability rights and the importance of centering the voices and experiences of disabled people in all matters that concern them.

NAUWU  is grounded in the principle of self-advocacy and the belief that the disabled should have a voice and agency in shaping policies, laws, and programs that directly impact them. It emphasizes the importance of including the perspectives and experiences of disabled individuals in all aspects of disability-related discussions, rather than making decisions on their behalf without their input or representation.

Origins of the phrase NAUWU: 

My friend and fellow autistic Rebecca Eli-Long states "I've been told that it entered US disability rights spaces via South African activists. At least that's what's reported in James Charlton's book, Nothing About Us Without US"

While it is challenging to attribute the phrase to a specific individual, it has been embraced and popularized by disability rights activists, organizations, and scholars worldwide. 

The slogan has become a rallying cry for disability rights advocates, reinforcing the core principle of empowerment, self-determination, and the right to be heard and respected.

One notable event associated with the early use of the phrase is the International Year of Disabled Persons, which was proclaimed by the United Nations in 1981. This declaration helped to bring global attention to disability rights and led to increased advocacy efforts by disabled individuals and organizations.

Context of Autism Research 

Recent years have seen some movement in discussion groups led by university and private research labs to hear inputs from all stakeholders, which includes autistics, family members, professionals (therapists, medical professionals, caretakers etc), with a long term view that such participatory research will lead to meaningful research and meaningful solutions. 

The good part is that finally there is some acknowledgement of the principle of NAUWU. 

Good beginning, but only the beginning. Let's not celebrate just yet. There are still miles to go. 

Why? Because the idea of "Nothing About Us Without Us" is 40 years old (in the 1980s) and it has taken all the way till the 2020's to see movement towards even acknowledging our voices.

Is it going to take another 40 years to see the next step of our voices translating into research and actual translatable solutions on the ground (instead of sitting as academic theory).

And will those solutions address everyone's needs or continue to focus on a narrow band of autistics, which means the rest of us continue to slip through those cracks and get left behind. 

What is the timeline? Is it even going to happen in my life time? 

 

Honestly in the the 2.5 decades I've been around, I have not seen much in terms of translatable autism solutions. We are still being peddled therapies and theories that work for a narrow band, but applied to all.

After all, there is a  ton of profits, fame and power for select groups in the autism space, so there is competition to becoming the loudest voice and the sole authoritative voice in the autism space, even if it means demeaning others. 

The irony being no one is an autism expert, as no one knows still enough about autism to be an expert. 

There is the occasional token nod to NAUWU to brush that argument out of the way. 

The result is not just the lack of solutions but continued exclusion and a poor quality of life and access to opportunities for the remaining autistics. To the add to the confusion, the autism community seems to be divided into  polarized camps and folks like me who desperately need translatable solutions are not getting them. 

Disability in Strength

A new mural titled “Disability is Strength, at Oakland Airport honors visionaries who helped 

build the movement for disability rights and independence, and present a vision for a future of full inclusion, rights and justice.The mural features disability rights pioneers Ed Roberts, Judith Heumann and Brad Lomax.

Judy Heumann, one of the great and recently deceased disability rights early advocates once said, "Independent Living isn't doing everything by yourself – it's being in control of how things are done."

Read on at https://www.oaklandairport.com/mural-exhibit-featuring-disabled-artists-and-disability-rights-activists-hung-at-the-oakland-airport/

Disability Rights Movement

The disability rights movement (DRM) refers to a social and political movement advocating for equal rights, inclusion, and improved quality of life for people with disabilities. The movement seeks to challenge and eliminate discrimination, stigmatization, and barriers that prevent disabled folks from fully participating in society.

DRM emerged in the late 1960s and gained significant momentum in the 1970s and 1980s. One of the key milestones was the passage of the Rehabilitation Act of 1973 in the United States, which prohibited discrimination on the basis of disability in programs receiving federal funding. This was followed by the Americans with Disabilities Act (ADA) in 1990, which further strengthened protections and rights for individuals with disabilities in various aspects of life, including employment, transportation, public accommodations, and telecommunications.

DRM focuses on promoting the principles of accessibility, independence, self-determination, and inclusion. It advocates for reasonable accommodations, accessibility in the built environment, educational opportunities, employment opportunities, healthcare access, and overall social acceptance and support for people with disabilities.

DRM has made significant advancements in raising awareness, changing societal attitudes, and implementing legal protections for people with disabilities. However, there are still ongoing challenges and areas for improvement to ensure full inclusion and equal opportunities across all aspects of life.