Rockville, MD, March 23, 2023 – The Centers for Disease Control and Prevention (CDC) has released two new reports from the Autism and Developmental Disabilities Monitoring (ADDM) network detailing prevalence rates, characteristics, and screening and diagnostic information. As a CDC partner, the Autism Society of America routinely reviews these reports to disseminate information, educate the greater community, and advocate for critical policy changes that ensure everyone in the Autism community has access to the resources they need to live fully. Today, the CDC reports a continued increase in the prevalence rate with one in 36 children receiving an Autism diagnosis.

Increasing prevalence estimates continue to underscore the urgent need for equitable supports and services in the Autism community. The increase to 1 in 36 eight-year-olds being diagnosed from the 2021 report of 1 in 44 eight-year-olds, can be attributed to a variety of factors, including an increased rate of diagnosis itself. This means that while diagnostic screening and identification are improving in some ways, the prevalence rate is also increasing.

The early identification report demonstrates that for the first time, the percentage of 8-year-old Asian or Pacific Islander, Hispanic, and Black children identified with Autism was higher than among 8-year-old White children. This change effectively closes the racial and ethnic gap which was observed and reported in previous ADDM reports. These shifts may reflect improved screening, awareness, and access to services among historically underserved groups.  

“The Autism Society and its network of affiliates have been working to close the racial disparity gap in early screening and diagnosis through education, resource development, and community programming to better support these underserved populations,” states Christopher Banks, President and CEO of the Autism Society of America. “It’s important to recognize this improvement, however, the increased prevalence rates means we urgently need increased access to quality supports and services at the federal and state level.”

While there have been improvements in early Autism identification over time, the COVID-19 pandemic has greatly disrupted progress to have an overall increase in screening efforts. The data reflects that screening of four-year-olds was initially on-track to show increased results of early detection, but was abruptly halted in March 2020 and has struggled to recover; this has resulted in long waitlists to receive timely screening and diagnosis, as well as delaying the opportunity to connect to essential early interventions and supports.

Children who receive an Autism diagnosis by age 4, are more likely to receive services that lead to improved long-term outcomes. This confirms the need to urgently increase our capability to screen and effectively diagnose children as early as possible; the Autism Society recommends that children be screened at least three times before age three (9, 18, and 24 or 30 months), so that they can be referred for services to have the best chance of success to live fully. 

The Autism Society of America, like the CDC, supports early identification as one of the most important tools communities have in helping to make a difference in the lives of children with Autism. The CDC’s Learn the Signs. Act Early. program promotes early identification by providing parents, childcare professionals, and healthcare providers free resources, in English and Spanish, for monitoring children’s development. Additionally, the Autism Society has updated resources as part of our 2023 Autism Acceptance Month campaign that provides digestible facts and statistics about Autism.

Established in 2000, the ADDM Network is the only network to track the number and characteristics of Autistic children and other developmental disabilities in multiple communities throughout the United States. This data provides important information from which researchers, policymakers, and service providers are able to make important decisions about how to best serve these individuals and their families. However, it is important to note that these estimates are based on 8-year-old children living in 11 community sites, and do not reflect the entire population of children in the United States. The Autism Society has continuously urged the CDC to increase its population data by expanding the number of sites and diversity of populations. Learn more about the ADDM sites here. 

See the full prevalence and early identification reports published in the Morbidity and Mortality Weekly Report on the CDC website. 

Visit our website to learn more about Autism, and screening and diagnosis. Connect to professional Information and Referral Specialists by contacting our National Helpline.

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ROCKVILLE, MD, January 3, 2023 – As the nation enters the coldest months of the winter season with high rates of hospitalization due to COVID-19 and one of the worst flu seasons on record, the need for older adults and people with disabilities to get vaccinated is at a critical point. To combat rising hospitalization rates among older adults and people with disabilities for both COVID-19 and the flu, two groups that are known to experience the most severe illness from these two conditions, the Autism Society of America is proud to announce that it is a partner in the Aging and Disability Vaccination Collaborative, a $75 million initiative funded by the U.S. Administration for Community Living to provide outreach, technical assistance, and support to promote vaccination uptake. As the only Autism organization selected, the Autism Society of America is proud and committed to continuing our work in health equity and our Vaccine Education Initiative.

Led by USAging, the Aging and Disability Vaccination Collaborative will distribute funds to enable organizations across the aging and disability networks to perform an array of vaccination promotion activities. Organizations selected for funding will host community vaccine clinics, provide in-home vaccinations, provide transportation to vaccination sites, and will conduct outreach and education to older adults and people with disabilities among other activities. 

“The Autism Society of America recognizes the vital role that organizations serving older adults and people with disabilities play in encouraging these populations to get vaccinated,” said Christopher Banks, President and CEO of the Autism Society of America. “We are proud to partner with USAging and an array of more than 20 national organizations serving older adults and people with disabilities, to promote vaccination uptake to the populations that are at greatest risk of severe illness and hospitalization due to COVID-19 and the flu.”

Organizations seeking to apply to receive funds to support their local vaccination outreach activities will be able to apply to receive funding through the Aging and Disability Vaccination Collaborative at www.usaging.org/advc as early as this week.  Learn more about this effort.

Members of the Aging and Disability Vaccination Collaborative

Lead partners

• USAging (convener)
• ADvancing States
• Association of University Centers on Disabilities
• Independent Living Research Utilization (ILRU)

Partners

• American Association of Service Coordinators
• Association of Programs for Rural Independent Living
• AT3 Center
• Autism Society of America
• Diverse Elders Coalition
• Lutheran Services in America
• Meals on Wheels America
• National Adult Day Services Association
• National Asian Pacific Center on Aging
• National Association of Councils on Developmental Disabilities
• National Association of Nutrition and Aging Service Providers
• National Caucus and Center on Black Aging
• National Council on Independent Living
• National Disability Rights Network
• National Hispanic Council on Aging
• National Indian Council on Aging
• SAGE: Advocacy & Services for LGBTQ+ Elders
• The Partnership for Inclusive Disaster Strategies

# # #

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The ICI’s ThinkWork and the Autism Society co-developed this toolkit as part of their ongoing collaboration to share strategies for families and young adults with Autism to put them on a path toward competitive integrated employment. The toolkit explores four primary predictors of future employment success for youth with Autism:

1. Career exploration and work-based learning
2. Building the young adult’s soft skills
3. Developing the young adult’s self-determination skills
4. Family involvement in employment planning

Visit the ICI’s ThinkWork to learn more about competitive integrated employment research and other efforts.

Visit the Autism Society of America’s employment resource page to learn more about competitive integrated employment for young adults with Autism.

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The Autism Society has created a social story to use plain language and visual cues to help explain war related scenarios. 

Download the “War in Russia and Ukraine” Social Story.

Download the “Anxiety Around the War with Russia and Ukraine” Social Story.

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 March 31, 2022, Rockville, MD — This April, the Autism Society is inviting its partners, supporters, and worldwide community to ‘be the connection’ during Autism Acceptance Month. Notable leaders in the corporate and entertainment worlds have partnered with the Autism Society in a commitment to highlight the critical need for acceptance, inclusion, and connections to support people with Autism across the lifespan. These partnerships underscore the many ways in which businesses can demonstrate acceptance and inclusion in their daily operations. 

“These partnerships come from a wide variety of industries and will have a true impact on our ability to bring acceptance and support to the Autistic community,” said Christopher Banks, President and CEO of the Autism Society of America. “We hope their leadership in promoting initiatives like inclusion and neurodiverse hiring will encourage other companies to join our efforts.”

Liberty Mutual Digital Transformation Partnership

Liberty Mutual Insurance partnered with the Autism Society of America to support the transformation of the organization’s digital operations. A team of Liberty Mutual technology employees volunteered their time to develop a blueprint for a three-year implementation plan to create digital efficiencies that better support engagement and collaboration with the organization. This work is critical in ensuring that Autism Society’s technology supports a fully inclusive experience for those in the Autism community. Beyond in-kind services, Liberty Mutual is committed to creating a diverse, equitable and inclusive workplace for all employees. Their Employee Resource, Able@Liberty + Allies, in particular, fosters community, conversation, education and support for employees with disabilities, caregivers and family members.

“Our partnership with the Autism Society of America is a natural extension of our commitment to creating a diverse, equitable and inclusive environment for all,” said Executive Vice President and Chief Information Officer, Corporate Functions, Shelia Anderson. “We are thrilled we could lend our resources to support  the Autism Society’s goal of supporting the more than seven million Americans with Autism in the United States.” 

Collaboration with Nickelodeon

Nickelodeon is proud to support the Autism Society of America and collaborate on a special resource guide for Autism Acceptance Month. Using its platform to connect with families, Nickelodeon will help amplify critical information for those looking for resources and support. Nickelodeon also continues to develop DIY sensory activities for children and families. It will be celebrating Autism Acceptance Month on social media and will be connecting with neurodivergent talent to highlight their stories throughout the month of April. The Nickelodeon teams are proud to celebrate differences alongside the Autism community. The resource guide will be available on NickHelps.com. 

“As a family and kid-first brand, we are committed to serving all learners,” said Jean Margaret Smith, Senior Vice President, Public Affairs, Nickelodeon. “We are honored to team up with the Autism Society of America to promote learning about, connecting with, and empowering kids in the Autism community”

Igloo ‘Coolaboration’ 

This April, Igloo has committed to providing 100% of net proceeds from branded Playmate cooler sales to the Autism Society of America. The gift will be triple matched by the Make Waves Family Foundation, furthering consumers’ impact to support the Autism community. 

Released on March 16th, the branded Autism Society coolers have already sold out during the pre-sale time period; due to high demand, the coolers are being restocked for another limited run in mid-April. The Autism Society encourages those interested to register for updates for the next release.

Golden State Warriors Highlight Autism Acceptance

The Golden State Warriors will highlight their ongoing support of Autistic individuals in a variety of ways. On April 1, Warriors forward Draymond Green and Anthony Ianni, a member of the Autism Society Council of Autistic Advisors, and Green’s former college teammate, will host a private basketball clinic for students on the Autism spectrum. At the team’s game on April 2 vs. the Utah Jazz, the Warriors have gifted tickets to Autistic individuals and their guests, and they will highlight the advocacy work from a constituent of the Autism Society of San Francisco. Additionally, the team will launch a special blue, gold and white popcorn available at all Chase Center eateries beginning on April 2 through the end of the team’s postseason run. A portion of the proceeds from the popcorn sales will be donated to the  Autism Society.

“I am honored that my friend Draymond Green and the Golden State Warriors will support the Autism community this April,” said Anthony Ianni. “As a member of the Autism Society’s Council of Autistic Advisors, I am proud to see my two worlds connecting to make an impact in the greater community.” 

Did You Know?

Autism diagnoses are growing, both for children and adults. Last December, the CDC announced that one in 44 children are diagnosed with Autism. Over 7 million people in the United States are on the Autism spectrum. Autism affects people from all racial, ethnic and socio-economic standings. The increased Autism prevalence rate stresses the urgent need for equitable access to diagnostic evaluations, and early interventions that have a significant impact on lifelong outcomes.

Furthermore, up to 85% of Autistic adults with a college education are unemployed, and over 70% of adults with Autism are underemployed or unemployed according to Chapman University Digital Commons. Businesses and organizations that engage in inclusive hiring and workplace practices are helping to close this gap. 

 No family or individual’s story is the same as any other, and the Autism Society believes the world should recognize the infinite ways the Autism community experiences life. Recognizing how connected we all are in our differences, strengths and challenges can be what unites us instead of divides us. Read their stories on social media through the #CelebrateDifferences hashtag. 

About Autism Society of America

The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. This Autism Acceptance Month, the Autism Society has a goal to fundraise $250,000 to create connections for the Autism community. For more information, go to www.autismsociety.org, Facebook, Instagram or Twitter. 

Contact:

Alyson Marchi-Young
AlysonMY@strategies360.com

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In early December 2021, The Lancet published a comprehensive report that calls for immediate action to better serve the Autism community with personalized interventions, services, and care designed with active participation from patients and their caregivers. The Autism Society appreciates the work done by this prestigious group and agrees that an inclusive care model is needed, and applauds the report’s actionable measures that the global community can take over the next five years to better address the current needs of the Autism community. 

The Lancet Commission was formed in 2019 and includes 32 representatives from 10 countries featuring international experts of clinicians, researchers, healthcare providers, Autistic self-advocates, parents, caregivers and advocates. The comprehensive report details steps for the global community to take over the next five years to improve the quality of life for Autistic individuals and their families. These recommendations were designed to be adapted to any country, regardless of resource level. Broadly, these recommendations include:

• Personalized, stepped care  ( a hierarchy of interventions—from the least to the most intensive—matched to the individual’s needs ) to further accessible treatment options.
• Improved care today, with an adjustable long term plan.
• Prioritizing meaningful research that goes beyond biology and focuses on long term, integrative interventions.
• Addressing global inequities in diagnosis, care and services.

“The Autism Society agrees that an inclusive, personalized approach to design care plans will lead to better long term outcomes,” states Christopher Banks, President and CEO of the Autism Society of America. “No single service or intervention is likely to meet the needs of every individual with Autism. To the maximum extent possible, informed decisions should be made by the individual with Autism and their family members to account for specific needs and resources, as outlined in our ‘Making Informed Decisions’ policy.”

Based on the updated prevalence rate that 1 in 44 children are diagnosed with Autism, there are more than 7.5 million people with Autism in the United States, and over 78 million people worldwide. The first step towards improving care is a call to action for every country to track Autism prevalence rates, as well as, co-occuring conditions, traits, strengths/weaknesses, and severity level in order to consider service needs. 

Funding should be designated to study the effectiveness of different interventions in large scale studies, a shift away from the biological focus. This prioritizes projects to address the Autism community’s current needs, and plan for long term services and supports. This recommendation aligns with the Autism Society’s vision to create a world where everyone in the Autism community is connected to the support they need, when they need it.

The Lancet report states its imperative to adapt service and care models for low – and middle – income countries, as well as underserved communities. The stepped care model allows for individuals to begin treatments with the lowest cost intervention and adjust as needed. By focusing on a person’s needs, instead of a diagnosis, support can be granted much more quickly and not be hindered by inaccurate or delayed screening and diagnosis. The Autism Society has long emphasized the need for equitable access for screening and diagnostic ability, especially in underserved communities; we applaud the call-to-action for global communities to collaborate among government agencies, health care providers, financial institutions, education and social sectors. 

Lastly, the report urges the community to address those with the highest support needs, identified by the authors as those who require 24 hour care by an adult, are unable to advocate for themselves, and typically have a severe intellectual disability or are minimally speaking or non-verbal. For non-diagnostic purposes, The Lancet commission addresses this population as those with ‘profound Autism’ in an effort to highlight the urgent and more significant level of care needs for these individuals. The Autism Society is committed to empowering everyone in the Autism community with the resources needed to live fully, and works to address the entire Autism spectrum; the Autism Society is committed to advocating for the critical needs for intensive home and community-based services and supports for individuals with significant support needs, including the urgent need to increase the availability of direct support professionals.

The Autism Society will continue to review the full 64-page report in collaboration with its Council of Autistic Advisors, Panel of Professional Advisors, affiliate leaders, and Board of Directors.

The Autism Society will continue to collaborate with other Autism and developmental disability organizations domestically and globally to better support the Autism community’s needs today, and for the future. We applaud the work of The Lancet Commission in bringing these needs to greater public attention.

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Appropriations Update

Earlier this month, President Biden signed into law a continuing resolution (CR) to fund the government through February 18. There continues to be a risk of a full-year CR as the Senate has yet to pass any of the 12 annual appropriations bills. This would be harmful since it would prevent the desperately needed increases to programs that support people with Autism and families that were passed in the House bill (See Center Budget analysis). For example, the House bill provided a 40% increase in funding for programs within the Department of Education to address glaring inequities resulting from the pandemic. It also provides an 11% increase for housing that funds 200,000 additional housing vouchers to address the affordability crisis. The Autism Society will continue to advocate for Congress to pass the annual appropriations bills with the highest possible funding levels for programs that support Autism families.

Build Back Better

The policy team continued to advocate for the Build Back Better Act which includes historic investments in programs that will positively impact people with autism and their families. On November 19, the House of Representatives passed its version of the bill.  Please see the latest edition of Capitol Connection for a summary of the disability-related provisions in the bill. The Senate is now preparing to take up the bill. Senate Committees released text over the weekend (see HELP Committee text and Finance Committee text). Senate Majority Leader Chuck Schumer (D-NY) must secure the support of every Democratic senator to advance the bill. Action is expected before the new year.

Numerous grassroots organizations joined together to bring attention to the need to pass this bill. Last week Caring Across Generations led an effort to bring grandparents to the Hill to rally for the bill’s caregiver provisions. A children’s rally was held yesterday to highlight the need for child care and nutrition provisions. In addition, on Monday Senator Bob Casey (D-PA) and Debbie Dingell (D-MI) rallied individuals with disabilities and families in a virtual rally encouraging supporters to urge action of their Senators. 

Nicole Jorwic, Caring Across Generations, addresses rally participants on Capitol Hill 

The Center on Budget and Policy Priorities released a new analysis regarding how the BBB is paid for and how it impacts the deficit. This report can be used in your advocacy efforts.

The Autism Society met with numerous targeted members of Congress to educate them about the needs of people with autism, especially urging the highest possible funding for the Medicaid home and community-based services provision. 

Education

Listening Sessions

The Office of Special Education and Rehabilitative Services (OSERS) Assistant Secretary, Katy Neas, is conducting a series of listening sessions with various stakeholders to discuss the needs of students with disabilities, teachers, and related services professionals across the country. Last week, the Autism Society was invited to join one of the listening sessions for the Consortium for Citizens with Disabilities (CCD). CCD leaders described some of the struggles experienced by students with disabilities during the pandemic, the teacher and related service personnel shortages, mental health needs, youth transitioning to work, and postsecondary education, among other topics. The Assistant Secretary was actively engaged in the discussion and noted a number of activities underway within the Department to try to address many of the issues brought up in the meeting. 

New OSEP Director

On Monday, the Department of Education announced that Valerie Williams became the Biden administration’s director of the Office of Special Education Programs. Williams previously served as the senior director of government relations and external affairs for the National Association of State Directors of Special Education. She was also a member of the Autism Society’s Public Policy Committee. The Autism Society wishes her the all the best in her new role!

Organ Transplant Discrimination Prevention Legislation

On December 2, Senators Rubio (R-FL) and Hassan (D-NH) introduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act (S. 3301). This is a companion bill to the one introduced in the House in February 2021 by Reps.  Jaime Herrera Beutler (R-WA) and Katie Porter (D-CA) (H.R. 1235).  The Charlotte Woodward Organ Transplant Discrimination Prevention Act prohibits discrimination based solely on disability before, during, and after an organ transplant procedure. The bill reinforces and supplements rights established or supported by existing civil rights laws such as the Americans with Disabilities Act, Sec. 504 of the Rehabilitation Act of 1973, and Sec. 1557 of the Affordable Care Act. For more information, please visit the NDSS Toolkit dedicated to advocating for this bill.

Social Security Legislation

On December 7, the House Ways and Means Subcommittee on Social Security, Chaired by Rep. Larson, held a hearing on Chairman John Larson’s (D-CT) revised Social Security 2100: A Sacred Trust bill. Social Security disability and survivors benefits are crucially important to the people with autism and other developmental disabilities and their families. This bill includes a fix to the long standing benefit cliff for people with disabilities who try to work (Sec. 107). The entire bill would make our Social Security system stronger for everyone, including 10 million children, adults, and seniors with disabilities across the United States who rely on this fundamental program.The hearing is archived on the House Ways and Means Committee website.

Executive Order on Transforming Service Delivery

On Monday, the Biden-Harris Administration announced a series of new actions to help improve customer experience and Government services for the American people. The new Executive Order directs Federal agencies to put people at the center of everything the Government does and includes 36 customer experience (CX) improvement commitments across 17 Federal agencies, all of which aim to improve people’s lives and the delivery of Government services. The Executive Order also creates a sustained, cross-government service delivery process that aligns to the moments that matter most in people’s lives. The Autism Society hopes that these efforts to remove barriers and utilize universal design will create better access for people with Autism who benefit from federal programs. (see the Washington Post coverage).

Employment

The Bureau of Labor Statistics’s November jobs report announced the unemployment rate fell by 0.4 percentage points to 4.2 percent. According to the Office of Disability Employment Policy, November marked the fourth consecutive month of employment gains for people with disabilities (see the nTide November 2021 Jobs Report for more information).  

CDC Surveillance

On December 2, the Centers for Disease Control and Prevention (CDC) released data showing that autism rates are once again rising among children. The new data says that 1 in 44 children in the U.S. is on the autism spectrum or 2.3% of children. Learn more about the report through the Autism Society’s statement. 

Housing 

Last week, the U.S. Department of Health and Human Services (HHS) and the U.S. Department of Housing and Urban Development (HUD) announced the expansion of a partnership established earlier this year to improve access to affordable, accessible housing and the critical services that make community living possible. The Housing and Services Resource Center will implement a federally coordinated approach to providing resources, program guidance, training, and technical assistance to public housing authorities and housing providers; state Medicaid, disability, aging and behavioral health agencies; the aging and disability networks; homeless services organizations and networks; health care systems and providers; and tribal organizations. 

International Report on Autism

A new international report published in The Lancet calls for a new, comprehensive model of autism care and treatment that prioritizes personalized “stepped” care approaches. The authors of the “Lancet Commission on the future of care and clinical research on autism” call for global coordination between governments, health care providers, education, financial institutions, and social sectors to reform research, care, and individualized interventions across the lifespan with active participation from people with autism and their families. The Commission was formed in 2018 by international experts, including clinicians, healthcare providers, researchers, advocates, self-advocates, and parents of children with autism. The report identifies urgent steps to be taken over the next five years to address the current needs of people with autism and families worldwide and to build a foundation for improved supports and services. See the full 60 plus-page Lancet report (it is free, but registration is required).

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Rockville, MD, December 2, 2021 – The Centers for Disease Control and Prevention (CDC) released updated data surrounding Autism prevalence rates that show a slight increase in the number of children diagnosed with Autism from one in 54 to one in 44. The Autism Society routinely reviews these reports to disseminate information, continue to advocate for necessary policy changes, and to better support the Autism community.

Consistent with previous reports, the increased national Autism prevalence rate is not attributed to one factor, but a variety, including a higher incidence rate that is independent of racial, ethnic and socio-economic standings, plus an increased rate of diagnosis. This stresses the urgent need for equitable access to diagnostic evaluations and services needed to support all members of the Autism community.

These findings are based on the analysis of data collected from the health and special education records (if available) of 4-year-old and 8-year-old children who lived in one of 11 different states throughout the United States in 2018. 

Additionally, approximately one third of these Autistic children (35.2%) also had an intellectual disability and another 23% were classified in the borderline range. People with Autism and intellectual disability often require additional supports and services.

In several of the 11 communities studied, the prevalence of Autism Spectrum Disorder (ASD) among Hispanic children was lower than that of Black or White children. The report indicates that the lower prevalence rates for Hispanic children could be attributed to fewer opportunities for diagnostic screening. In addition, a higher percent of Black children with ASD were identified with intellectual disability compared to White or Hispanic children with ASD. This is consistent with previous reports.

The data also shows that children who receive an Autism diagnosis by age 4, are fifty times more likely to receive services. This is not surprising but confirms the need to increase our capability to screen and diagnose children as early as possible; the Autism Society recommends that children be screened at least three times before age three (9, 18, and 24 or 30 months), so that they can be referred for services and have the best chance for success in school and life.

“The Autism Society of America is not surprised to see a continued increase in the prevalence of Autism,” stated Christopher Banks, President and CEO. “Since 2000, the CDC has been tracking the Autism prevalence rate, which has been consistently increasing from one in 150 to now one in 44. While diagnostic evaluations and services have improved, equitable access to screening and support services is needed for the entire Autism community to be connected to the support they need, when they need it.”

While the updated report reflects important statistical data that assists with policy direction and support needs, there is still room for improvement.

“It is important to remember that this estimate is based on 8-year-old children living in 11 communities, it does not represent the entire population of children in the United States,” stated Dr. Jack Scott, chair of the Autism Society’s Panel of Professionals and Executive Director of FAU Center for Autism and Related Disabilities. “The Autism Society urges the CDC to increase its reach by expanding the number of sites to areas that represent large population centers and BIPOC communities.”

The Autism and Developmental Disabilities (ADDM) network was first authorized by the Children’s Health Act in 2000. The important work of this network was reauthorized by the Autism CARES Act. This data provides important information from which researchers, policymakers, and service providers are able to make important decisions about how to best serve these individuals and their families.

See the full report published in the Morbidity and Mortality Weekly Report on the CDC website. 

Visit our website to learn more about Autism, and screening and diagnosis. Connect to professional Information and Referral Specialists by contacting our National Helpline.

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Capitol Connection

We are pleased to announce the new title of the Autism Society’s policy newsletter, Capitol Connection (formerly Ignite). This new name and look compliments the Autism Society’s new brand launch that took place on Monday. Capitol Connection is published twice monthly. For more information, see the press release and FAQs about the brand and development process. The Connection is You! 

Self-Advocacy Workshop

Thanks to those of you who participated in the Reframing our Strength inaugural self-advocacy workshop on Nov. 10. Approximately 100 individuals registered to participate. Please look out for an email sent out November 16 with a survey to collect feedback and a recording of the event for those who missed it. 

Bipartisan Infrastructure and Build Back Better Act

On Monday, President Biden signed the bipartisan infrastructure bill intended to upgrade the nation’s roads, ports, rails, pipes, power lines, broadband cables and accessible train network.The final bill passed on a 228-206 bipartisan vote on Nov. 5. It was hoped that the Build Back Better (BBB) Act would move at the same time; however, a number of representatives requested to see the final Congressional Budget Office cost estimate before voting on the measure. It is hoped that the House can vote on the bill as soon as this week (See section-by-section summary of the BBB Act). Meanwhile, the Senate is negotiating behind the scenes to make sure the bill meets its legal requirements under budget reconciliation. It will likely vote on the BBB Act after Thanksgiving. Please see previous issues of our policy newsletter for more details on both bills. Please continue to encourage your Members of Congress to support the Build Back Better Act.

FY 2022 Appropriations

Congress is also expected to pass another Continuing Resolution (CR) to fund the federal government programs after the Dec 3 expiration of the current Continuing Resolution (in the absence of completion of an agreement on appropriations for the year.) Advocates are concerned that Congress will pass a year-long CR that will not contain important increases included in the President’s budget and the House-passed bill. Affiliates are encouraged to educate members of Congress about the need to pass annual appropriations bills with adequate funding for programs that support people with disabilities.

Employment

The Senate is set to reintroduce the bipartisan Transformation to Competitive Integrated Employment Act (TCIEA). In this Congress, Senator Steve Daines (R-MT) joins lead author, Senator Bob Casey (D-PA) in reintroducing the bill. The bipartisan bill was reintroduced on the House side by Reps Scott (D-VA) and McMorris Rogers (R-WA) earlier this year. The Autism Society of America strongly supports this bill and is pleased to see bipartisan support for this bill in both the House and Senate.

Education

Hearing on Funding for Education

On November 17, the House Education and Labor Committee held a hearing entitled, Examining the Implementation of COVID-19 Education Funds. Two officials from the United States Department of Education spoke on how funding from the American Rescue Plan has helped students in our public PK-12 schools and students in post-secondary education. Secretary Cindy Marten brought up the importance of safely reopening and continuing to practice safety in the schools as “we need to know our students by name and by need”. 

IDEA Full Funding Act

Senator Chris Van Hollen (D-MD) and Representative Jared Huffman (D-CA) plan to reintroduce the IDEA Full Funding Act this week. This is a bill to put funding for IDEA on a “glide path” to help states with their obligation to provide a free and appropriate public education. The Autism Society participated in a briefing on the bill, along with Senator Van Hollen sponsored by the National Education Association and others in a coalition dedicated to fulfilling the promise of IDEA. The Autism Society, as chair of the CCD Education Task Force sent a letter in support of this bill. Advocates are encouraged to educate their members of Congress about the need for additional federal support so that students with autism and other disabilities get the education and related services they need to be successful.

Restraints and Seclusion

The Autism Society has been meeting with Members of Congress to educate them about the need for federal legislation to prevent the use of restraints and seclusion in schools. The Keeping All Students Safe Act (HR 3474/S. 1858) has been reintroduced in the House and Senate. However, the bill needs more bipartisan support in order to move through Congress. The U.S. Civil Rights Data Collection (CRDC) continues to show that of the 101,990 students who were restrained at school or were placed in seclusion — 78 percent were students with disabilities. On November 18, the Alliance to Prevent Restraint and Seclusion in Schools (APRAIS), of which the Autism Society is a member, is holding a virtual briefing at 1 p.m. ET, titled Keeping All Students Safe: How Seclusion and Restraint Harms Children and What Congress Can Do to Stop It. Senators Murray (D-WA) and Murphy (D-CT), two long-time champions of KASSA, will participate. The public are invited to register.

Caregiving in Military Families 

The Elizabeth Dole Foundation and Mathematica released a new report showing “Hidden Helpers”—children who live with and help care for wounded, injured, or ill service members or veterans—face local and national barriers to speedy, high quality support for themselves.

The findings were released as part of an event at the White House hosted by First Lady Dr. Jill Biden, who said “We must bring hidden helpers’ service out of the shadows—let their light shine—and give them the support they need to thrive. That’s why I am so grateful for the groundbreaking study that the Elizabeth Dole Foundation is releasing today on the experiences and needs of caregiving children across the country.”

Disability Rights

CVS, the pharmaceutical company, announced on Friday that it would back off of a case set to go before the U.S. Supreme Court in December that would have negatively impacted disability rights under Sec. 504 and Title II of the ADA. At issue was a prescription drug plan managed by CVS that required people needing specialty medications to get them by mail rather than at a local pharmacy. Five people with HIV sued the company arguing that the plan rule prevented them from getting appropriate care and discriminated against them based on their disability. Several disability and HIV leaders successfully urged CVS to reconsider. The Arc, Bazelon Center, DREDF and several other disability organizations submitted an Amicus Brief in the case. If the Supreme Court had agreed with CVS that Section 504 does not prohibit “disparate impact” or nonintentional discrimination, or that the Section 504 regulations are invalid, then courts could rule that Title II of the ADA is the same. This would effectively eliminate many disability rights protections. For more information about this case, see a Disability Rights and Education Fund (DREDF) Q&A. 

State Advocacy

A federal judge ruled last Wednesday that Texas Gov. Greg Abbott’s ban on mask mandates in Texas schools violates the rights of students with disabilities. The lawsuit was filed on behalf of several families of students with disabilities and Disability Rights Texas. They stated that the policy had put students with disabilities at risk and was in violation of the ADA. The judge pointed out that children with disabilities are more at risk of contracting COVID and getting severely ill. The order from the governor excluded “disabled children from participating in and denies them the benefits of public schools’ programs, services, and activities to which they are entitled,” the judge said. See more details in the NYT coverage.

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