Changing of the Guard

https://dredf.org/.../dredf-executive-director-announcement/

DREDF Executive Director Susan Henderson to Retire in 2024

We will miss you Susan Henderson. Thank you for being at DREDF for 26 years (WOW!!) and steering the ship. I've enjoyed getting to know you as a member of DREDF's board.


Disability Rights Education and Defense Fund (DREDF) is now on the hunt for a new Executive Director. https://dredf.org/2024/01/02/dredf-executive-director-search-profile/

 

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.

Dear Colleague

https://www.justice.gov/crt/case-document/dear-colleague-letter-online-accessibility-postsecondary-institutions 

On May 19, 2023, the Justice Department and the Department of Education jointly issued a Dear Colleague Letter reminding colleges, universities, and other postsecondary institutions to ensure that their online services, programs, and activities are accessible to people with disabilities.

Letter at chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.justice.gov/crt/case-document/file/1584491/download

 

Disabled People are not ADA People.

lavantconsulting

: 

 People with disabilities are not “Americans with Disabilities Act people” or “Americans with Disabilities Act Guests.” The ADA is a law that increases equity for disabled people, not a label of any individuals. Referring to people with disabilities in this way is disrespectful and never appropriate.

46th anniversary of 504 sit-in

46 years ago, Apr 5, 1977 was the start of the longest sit-in in US history. 

On April 28, 1977, Secretary Joseph Califano signed the regulations.

"Without 504 — there might well be no Americans with Disabilities Act, that finally brought us up to parity with federal civil rights laws covering gender and race."

https://dredf.org/504-sit-in-20th-anniversary/short-history-of-the-504-sit-in/
 

Health Care Considerations

April is Autism Solutions Month. 

Some Healthcare Considerations

Autistic and other high-support disabled people often need full sedation to access procedures like regular dental care, yet such procedures are rarely covered by insurance—which means people aren't getting the care they need, says @HariSri108.

Another medical care consideration from @HariSri108 is that often autistic people cannot tolerate the sight of medical implements like syringes. Providers can take simple steps like covering implements with towels until they are actually used.

Troubling Ableism in Neurodiversity

Written Oct 13 22. Still ironically relevant. 

===========

Troubling Ableism in Neurodiversity

Is Neurodiversity an Exclusion Club?

JUST HEARTBREAKING AND DISAPPOINTING

 

The Thursday morning Plenary Session of the College Autism Summit was an employer panel of companies hiring neurodiverse employees. The dictionary (dictionary.com) defines "plenary" as the most important session of the day "attended by all participants in a conference." ie: some impactful words of wisdom were expected. But...

These are remarks by a neurodivergent panelist who works for one of these large hiring companies. 

1. Most jobs hiring neurodiverse are in tech

2. Neurodiverse employment target "low-no" support-needs

3. Suggestion by this person as to what to do with the rest, the higher support neurodiverse:                 "Have companies ask their janitorial vendors to hire."

What was disillusioning - the comment was by a neurodiverse panelist on this employer panel. 

SERIOUSLY!!  An "othering" of remaining autistics.  So these "other" autistics, the moderate-high support needs autistics are only fit to be the cleaning crew!!

The irony in the choice of profession mentioned by the panelist is not lost on me. It's not that janitorial jobs have less dignity (all professions deserve dignity and respect) - but it's the idea of furthering the invisibility of this 'other' group . For instance, don't many cleaning crews usually work after the offices close for the day - out of sight of the public eye; a reminder of the UGLY LAWS (1867-1974) where disabled were fined/arrested for being seen in public as they were “visual disturbances.” (I remember being absolutely shocked and horrified when I had first learned of the existence of these laws in my first Disability Studies class at UC Berkeley with Prof Victor Pineda. Even cities were planned, such that “institutions” housing the disabled, were placed at the very outskirts of the city)

As it is, many many of the autistics peers I have grown up with (in the 'other' group) in my special education classrooms are disappearing into the black hole of day care programs/ group homes /institutions as adults, where they can be out of sight for the majority of society, even as families are struggling to support those individuals. Out of sight, out of mind, is a clean solution for society, as nothing more need to be done. In the meantime, they struggle in systems that trap them in the cycle of dependency, neglect and poverty due to inadequate services, supports and opportunities.

In the meantime, neurodiversity employment per this person is essentially an exclusive club where 'club members' will ask for rights derived from the long-fought-for Disability Rights Movement - that there must be employer cultural change where "low-no" are accepted, accommodated, advanced, given access to higher paying jobs, a chance at upward mobility, given a voice; even as they shut that avenue to other fellow disabled with a dismissive wave of - you are not good enough to join us, fit only for low wage jobs. A throwback to how disabled were viewed before the Disability Rights Movement. 

Isn't this imposing the very ABLEISM you are fighting the neurotypical world for?

Duplicity. Shame on you!'

With all sarcasm intended, the suggestion of "companies have their janitorial vendors hire," these 'other' autistics would  be a neatly packaged solution - corporate social responsibility accomplished as all autistics are now employed!! 

The new employment solution given for these 'other' autistics during this National Disability Employment month, apparently is not just LOW-WAGE but also preferably rendered INVISIBLE. 

If this is what the neurodiversity movement amounts to, then the whole idea of neurodiversity is a disillusioning sham. It's promoting exclusion, not inclusion. It's not upholding the disability rights mantra of "Nothing about us without us" or the Sins Valid Disability Justice principle of "Leadership of the Most Impacted" ie: there is no Disability Justice unless there is justice for the most marginalized. 

JUST DISILLUSIONING AND DISAPPOINTING

It's like being invited into the neurodiversity dining room cuz bad public image to leave you standing at the door. But once inside, you find you are not really at the main table with good food but the plan was to redirect you to the side table with scraps. Outside the dining room, society thinks the entire neurodiverse community has been fed.

So I have to ask what is the difference between other groups asking for a separate label/room and the neurodiversity community creating the same hierarchy inside the dining room.

 

MINDSET CHANGES, HAS TO START WITHIN THE NEURODIVERSE COMMUNITY FIRST

No wonder service organizations like the Department of Rehabilitation are reluctant to support the college aspirations of these "other” autistics; why encourage college if the end goal for them is a minimum wage job at best. And even before that in the special education pipeline, a majority of 'other' autistics in special education are pushed towards the non-diploma track at the middle school age itself (never mind their personal goals that may be otherwise). 

Acceptance and inclusion to education and well-paying jobs is not just the right of some autistics/ neurodiverse, it must be for ALL. This is not why 8-year old Jennifer Keelan along with many others pulled themselves up the steps of Capitol Hill before the Americans with Disabilities Act was passed in 1990. This is not why 150 disabled people occupied the HHS offices at a San Francisco federal building for 28 days (the longest sit-in in US history) to get Section 504 passed. 

If the "remaining autistics" (the ones without privilege) don't get acceptance from our own autistic/neurodiverse community in the spaces they want to be in, how can we begin to expect acceptance and inclusion and belonging from the wider neurotypical community? 

MINDSET CHANGES, HAS TO START WITHIN THE NEURODIVERSE COMMUNITY FIRST

Regarding the first points 1 and 2, I can still take it as a work in progress. We are still figuring out the how's

• Tech jobs are a START and I saw awareness of the need at various sessions of the conference to push autistic employment into non-tech fields. At least people are thinking about this. 

• The fact that companies are starting with  autistics perceived to be easier to support, can again be thought of as a START that we can build on - but by no means does it end with one subgroup. 

• It's ok to say we don't have all the solutions now. At least leave this door open so that we can continue to think on the hows. 

I will draw a parallel to scientific research to illustrate. We don't have all the explanations currently but we keep chipping away and will slowly unearth solutions. At times it's about arriving at the correct question and also the methods and evolution of available technology. But science and tech has kept pushing those frontiers. 

Likewise in autism research, most current research/tech looks at testable autistics -  which at least gives us a broad overview of issues. But we cannot stop there - for the next step we need to dig deeper at physiological level so we get to what's going on so we can find ways to better support everyone including these "other" autistics. 

Please be part of the solution and not part of the problem. 

For instance if we make headway in 

• Sensory areas (understanding at a physiological level to better support with tech or other solutions) 

• Communication piece (think  BCI that can bypass motor and sensory systems, more affordable intuitive AAC…) 

• Technology supports, that simplifies motor tasks/ executive planning around daily living skills (think robot helpers, self-driving cars, hybrid employment, more intuitive tech…)

• Translational precision medicine for underlying health issues and co-occurring conditions (in place of current diagnostic overshadowing).  

• Development of better meds to help with mental health needs, self-injurious behaviors, obsessive compulsive behaviors etc. Instead all we have is Big Pharma recycling/ rebranding drugs dating back to the 1950s. I was shocked to learn in my undergrad "Drugs and the Brain" class at UC Berkeley that even a minor tweak in just one branch of a drug's chemical structure allows for re-patenting which means continuation of the exorbitant high prices/profits. Did you know that ~30-40% of autistics are on medication for behaviors (Logan et al., 2012)?  I once also heard Dr Antonio Hardan of Stanford mention at the Stanford Autism Conference that these behavior drugs don't work the same way in autistics as in the general population - so why are we still over medicated with these same drugs.  

• empathic equitable policies

• ... more

Think then (with just this far-from-exhaustive list) of the incredible inclusion we can have of the entire spectrum of autistics in society, in higher education and in the workplace. What a huge improvement in quality of life that would be, not just for the autistics, but also for the world. 

I see policy, legislation, research, healthcare and societal mindsets as varying angles of the very same disability rights movement. 

I also have to wonder how much of a role negative media representation of these ‘other’ autistics plays in exclusionary practices by both society and segments of the neurodiverse community itself, especially if media continually shows you mainly in the context of meltdowns, or in other words as “visual disturbances” (Ugly Laws) that better be tucked out of sight. 

Worth does not have to be defined by how productive you are seen to be or how much you can contribute to the economy. But I am hopeful ALL AUTISTICS (the ones who aspire to higher education and aspire to work) will get to higher education and WORK at the job they want to work at. That some don't have to "settle" or be "steered" towards minimum-wage type work because society (which apparently also includes a segment of fellow neurodiverse individuals) think your life has less worth than theirs. 

Though we may not have all the solutions and are still working on the "How",
the message I want to send to ALL autistics is:

ALL does not mean SOME. 

ALL autistics have the right to any benefits/policies derived from the hard-won-struggles of the disability rights movement. 

ALL autistics have the right to access supports, and to spaces and opportunities you aspire to

ALL autistics have the right to Belong.

ALL autistics have Worth. 

(PS: The better parts of the CAN conf are in this post.)

Informal Removals

This is so deja vu for me. 

Never mind even the struggles involved in getting access to general ed classrooms, 

even special education classrooms only want the Good Patients. 

=================

https://www.nytimes.com/2023/02/09/us/students-disabilities-informal-removal.html?fbclid=IwAR36fyuIXrWPV7QZMxdeHt_HPxYJy9___BwxYS0k7YIEKBarCdHdrxEAW4U


"During her son’s elementary years, Ms. LaVigne was called almost daily to pick him up hours early because he was having “a bad day.” By middle school, he was only attending an hour a day..."

"...tactic that schools... use to remove challenging students with disabilities from class. The removals — which can include repeated dismissals in the middle of the day or shortening students’ education to a few hours a week."

"In a report last year, the National Disability Rights Network, a national nonprofit established by Congress more than four decades ago, found informal removals occurring hundreds and perhaps thousands of times per year as “off-the-book suspensions.” The report said the removals also included “transfers to nowhere,” when students are involuntarily sent to programs that do not exist."

"The removals largely escape scrutiny because schools are not required to report them in the same manner as formal suspensions and expulsions, making them difficult to track and their impact hard to measure."

"continuation of the practice sends a terrible message to students and to school communities about which students deserve an education.”

Historic gains in disabled employment during the pandemic.

"The increase in work-from-home arrangements and greater flexibility in work hours seen during the height of the pandemic may have permanently opened new employment opportunities for people with disabilities"

The question is how do we sustain the gain in employment seen during the pandemic due to hybrid work. 

ACI Applications now open

 

The Autistic Self Advocacy Network is now accepting applications for the 2023 Autism Campus Inclusion (ACI) Leadership Academy! ACI helps autistic students learn to make their college campuses better for people with disabilities. ACI participants learn about making student groups, understanding disability policy, and talking to people in power. After ACI, students get help from ASAN to meet their advocacy goals at their college. ACI 2023 will be held from July 10th through 19th, 2023.

We hope to hold this year’s ACI program in-person. If it isn’t safe to do so, we will hold the program virtually. Due to the pandemic, we held ACI virtually in 2020, 2021, and 2022. If it is safe to hold ACI in-person, we will take numerous safety and health precautions.

To apply for Autism Campus Inclusion (ACI), you must:

• Be autistic. You do not have to have an official autism diagnosis to apply.

• Be a student at a college or university with at least one year left before you graduate.  Students in TPSID programs (Transition and Postsecondary Programs for Students with Intellectual Disabilities), 2-year community colleges, 4-year colleges, and graduate school are eligible to apply.

• Live in the United States or Canada. This includes all 50 states, all US territories, and all provinces and territories of Canada. (Please note: the policy sections of our program will focus on the United States) You do not have to be a citizen of either the US or Canada.

We especially encourage students of color, LGBT students, low-income students, students with intellectual disabilities, AAC users, and students from other marginalized communities to apply.

To apply, please submit a completed application by Sunday, March 5th, 2023 to Dean Strauss, dstrauss@autisticadvocacy.org.

If you need assistance or accommodations at any stage, or have any questions about ACI, please contact Dean Strauss, dstrauss@autisticadvocacy.org.

Hill Visit Training Webinar

 

These Hill Visits are super impactful. 

Making a virtual visit to your legislator is the most impactful way to make your concerns known. You can virtually meet with your federal legislators to ask them to ban the use of electric shock devices for behavior modification in this year’s end of year omnibus bill! 

 

Learn how to meet with your federal legislators online with our Virtual Hill Visit training! Join us tonight at 7pm EST for a Hill Visit training webinar (Link 1). We’ll go over scripts and tips to take the fight to the Hill and meet with your legislators face-to-face. We’ll also roleplay an example scenario so you can see in real time what it is like to speak with your members of Congress.

 

Register here or tune in on YouTube. (Link 2)

 

Then join us on Wednesday, December 7th (Link 3) for our virtual Hill Day! In order to meet with your legislators on the 7th, you should reach out NOW to schedule something. Check out our guide to learn how to set up a meeting! (Link 4)

1. https://us02web.zoom.us/webinar/register/WN_r1UlilUwRFSefT2y2o1NVw?emci=8f18adc8-806a-ed11-ade6-14cb65342cd2&emdi=84350b61-2d6f-ed11-819c-00224825858d&ceid=7856333

2. https://us02web.zoom.us/webinar/register/WN_r1UlilUwRFSefT2y2o1NVw?emci=8f18adc8-806a-ed11-ade6-14cb65342cd2&emdi=84350b61-2d6f-ed11-819c-00224825858d&ceid=7856333

3. https://www.youtube.com/channel/UC_TYP1RDq76UnlVtSUxCmtA

4. https://autisticadvocacy.org/virtualhillguide/?emci=8f18adc8-806a-ed11-ade6-14cb65342cd2&emdi=84350b61-2d6f-ed11-819c-00224825858d&ceid=7856333

@harisri108 #Redefine_the_Table #autism #belonging

Thank you Lois Curtis

Today Lois Curtis passed away. She along with Elaine Wilson were the plaintiffs in the landmark 1999 Olmstead v. L.C case, which jumpstarted de-segregation and de-institutionalization of the disabled. It paved the way for community based supports for the disabled. 

Over the summer I also had the opportunity to be part of a White House panel discussion on the occasion of the anniversary of the Olmstead Act. The Olmstead Act is more significant than we can even think. Imagine, just a few decades ago, people with more significant disabilities (which would have included "higher-support" autistics like me) were simply put into institutions. 

Problem solved for society with the disabled tucked out of sight!! Case closed!! 

In fact, when I was young, families were still being advised to send their autistic child away before they grew too attached to that child. 

Folks like Lois did not get to choose. She had to fight to get out of an institution. 

What if you did not even have a "voice" (like many "higher-support" autistics) to protest even as your family was told that this was what was "best" for you by all the "well-meaning" professionals. 

Thank you Lois for speaking up. 

As a child I don't think I quite understood what institutions were. The closest I came to seeing a visual was was whatever was shown briefly in the movie, Rainman. 

It was not until I got into college and began my Disability Studies courses, that I began to understand how horrifying institutions and the idea of institutionalization was for the disabled. My very first disability studies course had been with Victor Pineda. 

On the very first day of class he screened a documentary called "Lives Worth Living" on the disability rights movement. One of the most shocking and horrifying scenes in that documentary had been Willowbrook, one such institution in New York housing the disabled. It showed the disabled children living in degrading and filthy conditions. The doctors at Willowbrook themselves had grown so alarmed that they had invited reporter Geraldo Rivera's to do an expose which shocked the world. 

I used to think my low expectation special education classrooms were degrading enough, but I shudder to think of what living in those inhumane institutions would have been like. In fact, in the 2020 documentary Crip Camp, there is a mention of a camper from Willowbrook "who would stuff himself with food till he got sick" as he would not get adequate food at Willowbrook. 

Such history makes the Olmstead Act all that more significant, and meaningful to folks like me. 

"The Olmstead decision has led the government to make more opportunities for people with disabilities to get services outside of institutions. Advocates and the government use the Olmstead decision to fight for disabled students’ rights to learn in the same classroom as non-disabled students. Advocates and the government use Olmstead to fight for disabled workers’ rights to work in the same workplace as non-disabled workers, and earn a competitive wage." (ASAN Remembers Lois Curtis)

Though we still have miles to go on disability rights on multiple fronts, I am so deeply appreciative of such disability rights icons who have hewn out the path that many of us now almost take for granted. 

Thank you Lois 

@harisri108 #Redefine_the_Table #autism #belonging #disabilityrights

DREDF Spotlight

This month is Disability Rights.  Thrilled to be on the same board with the likes of living disability legends like Judy Heumann. What an honor to be invited. 

 https://mailchi.mp/dredf/dredf-monthly-august-22

Hari Srinivasan joins the DREDF Board of Directors.

Hari Srinivasan just moved from Berkeley to Nashville, but we're lucky that he's staying connected to Berkeley by joining DREDF's Board of Directors. Hari has autism and ADHD with very limited speech ability, and primarily uses Augmentative and Alternative Communication (AAC) to communicate. He is a Ph.D. Neuroscience student at Vanderbilt University, a PD Soros Fellow, and a Fellow at the Frist Center for Autism and Innovation. Hari graduated from UC Berkeley in 2022 as a University Medal Finalist, along with a Departmental Citation Award, Highest Honors, Phi Beta Kappa, and Psi Chi. As an undergraduate Haas Scholar, he carried out a year-long independent funded research on awe and empathy in autism. He also served as student president of the Berkeley campus organization Autism: Spectrum at Cal, stressing the idea of autism needing to go beyond mere Awareness, Acceptance, and Inclusion and towards Belonging. Hari's other affiliations include serving on the board of the Autistic Self-Advocacy Network, and as a Non Federal Committee member of the Interagency Coordinating Committee (IACC). He is also a member of the Council of Autistic Advisors for the Autism Society of America and sits on the Community Advisory Board for The Brain Foundation.

Happy ADA32 Anniversary

 

HHS Announcement of IACC Member Appointment

https://iacc.hhs.gov/news/2021/iacc-new-members.shtmlContact: Office of Autism Research Coordination/NIH
Email: IACCPublicInquiries@mail.nih.gov

HHS Announces Appointment of New Members to the Interagency Autism Coordinating Committee

Wednesday, July 7, 2021

The U.S. Department of Health and Human Services (HHS) today announced the appointments of new and returning members to the Interagency Autism Coordinating Committee (IACC), a federal advisory committee reauthorized under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019. The IACC is a federal advisory committee composed of public stakeholders and federal officials that coordinates federal activities concerning autism spectrum disorder and provides advice to the HHS Secretary on issues related to autism. Committee meetings serve as a public forum for the sharing of community perspectives and concerns about autism. The committee uses this input as it formulates advice and recommendations for the HHS Secretary on matters related to autism research, services, and policy. The committee's responsibilities include developing and annually updating the IACC Strategic Plan for Autism Spectrum Disorder (ASD) and preparing an annual Summary of Advances in ASD Research.

After an open call to the public for nominations of individuals to serve on the committee, Secretary of Health and Human Services, Xavier Becerra, J.D., appointed 20 new and two returning public members to the IACC to provide him with advice to advance research, enhance services, and increase opportunities for people on the autism spectrum. The committee also includes 23 new and returning federal officials representing key federal agencies and departments that serve the autism community across a wide variety of areas, including biomedical research, healthcare, education, and social services. Joshua Gordon, M.D., Ph.D., director of the National Institute of Mental Health, will continue to serve as the chair of the committee. The first meeting of the new committee will take place virtually on July 21-22, 2021 and will be open to the public via webcast. A full roster and biosketches of all the new and returning members can be viewed on the IACC website.

IACC Executive Secretary, Susan Daniels, Ph.D., stated, "We are excited to welcome the largest and most diverse IACC to date, with a wider representation of perspectives from across the autism community than ever before."

Public members appointed include autism self-advocates, parents and family members of children and adults on the autism spectrum, clinicians, researchers, and leaders of autism research, services, and advocacy organizations. Many of the appointed individuals serve multiple roles, such as parent and researcher or self-advocate and leader of an advocacy organization. Appointees hail from across the U.S., including states that have not been represented on the committee previously, such as Louisiana, Maine, Texas, Washington, Vermont, and Wisconsin.

Autism and disability organizations represented by new and returning appointees to the IACC include the Autism Science Foundation, Autistic Self Advocacy Network, Autism Speaks, Champions Foundation, Simons Foundation, and Madison House Autism Foundation. Four federal departments newly joining the IACC —the U.S. Department of Housing and Urban Development, U.S. Department of Justice, U.S. Department of Labor, and U.S. Department of Veteran Affairs—will provide additional expertise in the critical areas of housing, employment, interactions with law enforcement, and care for veterans on the autism spectrum.

Public members appointed by the Secretary to serve on the IACC from 2021-2024 are:

• Maria Mercedes Avila, Ph.D., M.S.W., M.Ed.Associate ProfessorDepartment of PediatricsLarner College of MedicineUniversity of VermontBurlington, Vermont
• Alice Carter, Ph.D.ProfessorDepartment of PsychologyUniversity of Massachusetts Boston
• Samantha Crane, J.D.Legal DirectorAutistic Self Advocacy NetworkWashington, D.C.
• Aisha Dickerson, Ph.D.Assistant ProfessorDepartment of EpidemiologyBloomberg School of Public HealthJohns Hopkins UniversityBaltimore, Maryland
• Dena Gassner, M.S.W.Ph.D. Candidate in Social WorkAdelphi UniversityWest Hempstead, New York
• Morénike Giwa Onaiwu, M.A.Humanities ScholarCenter for the Study of Women, Gender, and SexualityRice UniversityHouston, Texas
• Alycia Halladay, Ph.D.Chief Science OfficerAutism Science FoundationNew York, New York
• Craig Johnson, B.A.Founder and PresidentChampions FoundationHouston, Texas
• Yetta Myrick, B.A.Founder and PresidentDC Autism ParentsWashington, D.C.
• Lindsey Nebeker, B.A.Freelance Presenter/TrainerAlexandria, Virginia
• Valerie Paradiz, Ph.D.Vice PresidentServices and SupportsAutism SpeaksPrinceton, New Jersey
• Jenny Mai Phan, Ph.D.Post-Doctoral FellowWaisman CenterUniversity of Wisconsin-Madison
• Joseph Piven, M.D.Thomas E. Castelloe Distinguished Professor of Psychiatry and PediatricsUniversity of North Carolina-Chapel Hill
• JaLynn R. Prince, B.F.A.Co-Founder, President, and ChairMadison House Autism FoundationRockville, Maryland
• Susan Rivera, Ph.D.Professor and ChairDepartment of PsychologyUniversity of California, Davis
• Matthew Siegel, M.D.Vice President of Medical AffairsDevelopmental Disorders Service LineMaine Behavioral HealthcareWestbrook, Maine
• Ivanova Smith, B.A.Self-Advocate FacultyLeadership Education in Neurodevelopmental and Related DisabilitiesUniversity of WashingtonTacoma, Washington
• Hari SrinivasanStudentUniversity of California, Berkeley
• Helen Tager-Flusberg, Ph.D.ProfessorDepartment of Psychological and Brain SciencesBoston UniversityBoston, Massachusetts
• Julie Lounds Taylor, Ph.D.Associate ProfessorDepartment of PediatricsVanderbilt University Medical CenterNashville, Tennessee
• Paul Wang, M.D.Deputy DirectorClinical Research Associates, LLCSimons FoundationNew York, New York
• Stephen Whitlow, J.D.Executive DirectorTransition ServicesMerakeyBaton Rouge, Louisiana

The IACC is a federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research, services, and policy. The IACC works to improve coordination and communication across the Federal government and works in partnership with the autism community. The documents and recommendations produced by the IACC reflect the views of a federal advisory committee, which is composed of federal officials and public stakeholders, but do not represent the views, official statements, policies or positions of the federal government. For more information on the IACC, please visit: iacc.hhs.gov.