For years, TACAnow blog has featured what is needed in autism community (1). During each election cycle, voters are barraged with messaging and commercials from every direction. I hope that the autism community can drive a unified message and request for support for individuals and families living with autism.

Please note: As a 501c3, TACA cannot tell members how to vote. TACA can only share information and let them decide.

I will also be reaching out directly to each candidate and their staff to ask for their autism policy and goals if elected. This blog is available for families to share the entire post or points with their representatives and favorite candidates to request action. Families living with autism have a powerful voice. I hope they use it and either share this plan or speak up with a plan that will help influence action for autism. The autism epidemic discussion and solutions have been avoided for far too long without the necessary support or direction to help. We can change that.

Why have a plan in the first place? As a country, we should address this important health issue affecting 1 in 36 US children (2.) Candidates for office need to know the challenges affecting many families and their children living with autism.

Sadly, autism is still the least funded disability in America facing the most children. Since 1999, we have had five presidents, in almost eight terms, watch autism prevalence go from 1 in 5,000 to 1 in 36.  The autism community needs a hero who could help 7% (and growing) of U.S. families.

This updated autism plan is needed, based on my work with TACA as well as TACA’s almost 25-year history supporting tens of thousands of families. It is my great hope that our future political leaders can make a difference.

Why is an autism strategy needed? The annual autism costs to the U.S. economy is approaching $300 billion (3.) This number is big, growing, and affects every taxpayer. The bigger, incalculable number is the human cost. This issue warrants our attention, resources, and help. This plan addresses the needs of families living with autism TODAY.

To move forward with positive change for the autism community, here is our proposed 11-point plan:

1. Perform an Autism Census

Why: We need to count EVERYONE with a formal diagnosis of autism in an actual census. At TACA, we have been asking for this since 2007 through our interactions with the Interagency Autism Coordinating Committee (IACC) 4. We need to know about everyone; 2-year-olds, 12-year-olds, 22-year-olds, 32-year-olds, 42-year-olds, 52-year-olds, 62-year-olds and every age in between. We also need to know their needs and the severity of the diagnosis. Currently, the prevalence number estimates are based on an 11-state survey.

This full census only needs to count those diagnosed with autism by medical professionals licensed to assess and diagnose. In addition, we need a plan to include children and adults outside our public school system, as many families are choosing to homeschool due to the lack of appropriate placement and services.  We provide official counts for almost every other condition. We spend so much time arguing about whether autism is increasing and whether it a true increase. An official census will put this issue to rest once and for all.

2. Provide Support to Caregivers

Why: Very little to no support is provided now. Families are being crushed with stress, debt, and complex issues not faced by families of typically developing children. We need to provide the necessary support throughout the lifespan of the person affected. This is especially true for families living in post-COVID-19 times. Life may be back to normal for many in the U.S. post-COVID-19 (3.) This is not the case for access to services for individuals and families navigating disabilities.

One way to address this emerging need is to address a national Home and Community Based Services (HCBS) waiver loophole. If we address the wait list and the ability to transfer state by state when families move, we can save families years of red tape and give important access to care.

3. Ensure States Meet Their Obligations Under IDEA Child Find to Identify, Screen, and Refer Children with Disabilities for Services

Why:  Based on the thousands of incidences of support TACA receives from parents, this is one of the top issues families face. Often because of underfunding and staff shortages, agencies put in place to help families are, instead, sharing misinformation and putting families on wait lists. Resolve wait lists for both diagnosis and access to early intervention and treatments to ensure a free and appropriate education mandated by law through the Individuals with Disabilities Education Act (IDEA.)

Furthermore, because autism is a spectrum, we need more (not fewer) options. We don’t want to remove any available choices. These choices include applied behavioral analysis (ABA), Augmentative and Alternative Communication (AAC) modalities, and more. Rather we want to expand the options for families and individuals to seek what suits their child’s individual and unique needs. Services and resources need to support all therapeutic and medically necessary choices available.

4. Increase State Compliance with Medicaid and Medical Coverage Requirements and improve insurance access to care.

Why: Families needed this help yesterday. Treatment across the United States varies greatly. The American Academy of Pediatrics Standards (AAP) of Care for Autism (5) should be followed.  In addition, these standards of care should be expanded with the new research available. Based on the thousands of instances of support we provide every year; we know these standards are rarely updated or followed.

Let’s make that better for families. If we invest early in young children with autism, we can see tremendous cost savings later in their lives. We also can see dramatic improvements. These children can have a bright future. The Affordable Care Act (ACA) was a great step forward. It did not fix all issues for families living with autism and needs improvement to eliminate red tape for acquiring coverage, cover families left out, and remove expensive co-pays for each treatment or visit.

5. Address Issues Harming Individuals with Autism: Wandering, Restraint, Bullying, and Seclusion

Why: I love the work of National Autism Association (NAA.) They have done research and definition of need in the areas of bullying, restraint, seclusion, and wandering. No need to spend millions to do a study! The answers are available from the NAA (6.)

Thankfully the Kevin & Avonte’s Law S. 2070 was passed to start to protect the almost 50% of those living with autism who wander from safe environments often with deadly results (7.) This important law needs help with implementation and monitoring. Adequate resources must be provided to protect individuals living with autism. In addition, procurement of tracking devices for individuals in need and first responder training for people living with disabilities needs to be added.

6. Plan for Adults: What Happens When the Bus Stops Coming?

Why: I want to mention something about what happens at age 21 (in some states up to 26) when the school bus stops coming, and our kids age out of all supports. Parents become full-time caretakers, and most must quit working because there are no programs in place for the affected. In this frequently replicated scenario, we go from having one person on government assistance to two. Add in isolation and it becomes a recipe for despair. While the long-term goal is to create employment for most, it’s not feasible for all. Especially in the short term. We need appropriate “adult day care” and other life skills opportunities for our adults when employment opportunities are not available.  Expansion of vocational and employment opportunities is desperately needed. Over 2% of adults in the U.S. have an autism diagnosis (8.)

7. Re-Evaluate “Learn the Signs. Act Early.” Funding With the Goal to Boost Early Screening Rates Through a Nationwide Outreach Campaign

Why: This has been a big part of the Interagency Autism Coordination Committee (IACC) efforts since 2006. Over $6 billion and we are no closer to prevention, treatment, or help for families. One program funded through the IACC is the CDC campaign “Learn the Signs. Act Early (9.)”

According to new research, the average age of diagnosis is 4 years 5 months and has not improved since the Learn the Signs, Act Early campaign was launched. According to the same study, we can accurately diagnose autism before age 2 years (10.) Since the pandemic, the wait list crisis for access to an autism diagnosis and treatment has become more of a crisis.

In addition, it has become clear from the last autism prevalence reports that more work needs to be done in assessing all children including often overlooked minority groups.2 We need a new vision, campaign, and focus to address autism assessment and access to early intervention. The cost savings to be proactive has a 4-9 times rate of return (11.)

8. Educate and Ensure Consumer Protection for ABLE Act Account Beneficiaries

Why: The laws passed do help. Now we need to educate families to understand, set up, and benefit from savings accounts for individuals with autism. For too long, people with disabilities have been relegated to living in poverty because of the government asset test. The ABLE ACT is a good start for parents to save for their children, as well as adults to be able to earn and save for themselves (12.)

9. Promote Multi-Sector Awareness Campaign

Why: We have two distinct groups to help in a multi-sector awareness campaign. Group one is families living with autism. We would like to drive them to treatment and therapies based on their child’s needs. We need to end the “hopeless” diagnosis for families. Group two is the public and clinicians. We would like them to understand the autism spectrum and the hopeful therapies and treatments available based on updated research. The bottom line: autism is a treatable condition and worth investing in for results. Over 40,000 studies on autism and related comorbidities are available to help drive effective therapies and treatments (13.)

10. Address the Adult Housing Crisis

Why: There are tens of thousands of people with autism on wait lists for help in the area of housing. We are very close to two critical tipping points: children aging out of support and needing housing and aging parents. 50,000 adults are aging out of the system every year (14.) A special task force is needed to identify the needs and plan humane solutions with employment options to address self-sustainability concerns.

Autism Housing Network has more information on housing for adults.

11. Significantly Increase and Revamp Autism Research Funding

Why: Sadly, past autism research is a big area of concern. This is where the US government has invested over $4 billion in funding with the IACC recommendations. We are no closer to any new treatments, prevention or support for families since the IACC started in 2006. We have dumped millions in genetic research. I do not suggest having the government run this anymore as their programs are not generating results with taxpayer dollars. You can read more about the history of the IACC and their lack of accomplishments here (4.)

We need the government to fund innovation. First, we need to start with subtyping. By subtyping groups, those who wish to have help or need help can be our focus including individuals with profound autism. Some research has been completed, but we need to do more (15.) Some incredible universities and physicians have been working with autism every day for decades who, with the right resources, could drive positive change with fewer dollars required. We have seen more innovation and effective treatments from smaller universities and research entities that are privately funded than the government or its funded programs have ever produced.

Conclusion

In conclusion, any chosen plan needs to address the rapid increase in the prevalence of autism and the growing needs of this community. We are very behind in addressing these needs. With the dire predictions of autism becoming more and more prevalent each year, the autism community needs a leader to take on the issues and drive solutions. Excuses do not serve a purpose when it comes to our children.

We can no longer continue with autism being the least funded disability in the US yet affecting the most children. Every potential cultivated. Individuals with autism should not be left behind.

Final Note:  Comments telling voters how to vote will not be approved. Please share your thoughts with references and without sharing thoughts on a candidate. Thank you. 

REFERENCES:

1. Past Autism Plan Blogs:

• Presidential Candidates: What Should Their Autism Plan Include – 2020 edition: https://tacanowblog.com/2020/09/16/presidential-candidates-lets-talk-autism-plan-2020-edition/
  Why Would a Government Panel Question Universal Autism Screening: Update.Moving Autism Forward by Team TACA. https://tacanowblog.com/2016/02/17/why-would-a-government-panel-question-universal-autism-screening-update/
• Autism Family Plan Needed: 15 Points to Include: https://tacanowblog.com/2018/05/01/autism-family-plan-needed-15-points-to-include/
• Presidential Candidates: What Should Their Autism Plan Include?https://tacanowblog.com/2016/01/20/presidential-candidates-what-should-their-autism-plan-include/

2. Autism prevalence

• https://tacanow.org/about-autism/
• An archive of all CDC Prevalence Reports from inception can be found at the above link

3. The lifetime costs of autism:

• https://elemy.wpengine.com/autism/the-average-annual-costs-of-autism-nationwide
• Autism community ‘scared to death’ with students losing ground as distance learning continues. https://www.ocregister.com/2020/08/24/autism-community-scared-to-death-with-students-losing-ground-as-distance-learning-continues/

4. TACAnow IACC Blogs:

• The IACC Needs to Address Autism and Wandering: How Can Parents Help? https://tacanowblog.com/2016/01/04/the-iacc-needs-to-address-autism-and-wandering-how-can-parents-help/
• Why Would a Government Panel Question Universal Autism Screening?https://tacanowblog.com/2015/08/07/why-would-a-government-panel-question-universal-autism-screening/
• If the IACC’s Strategic Plans Were IEPs, Would They Be In Non-Compliance?http://www.tacanow.org/blog/the-iacc-reconvenes/https://tacanowblog.com/2013/12/31/if-the-iaccs-strategic-plans-were-ieps-would-they-be-in-non-compliance/
• What Constitutes an Emergency. http://www.tacanow.org/blog/what-constitutes-an-emergency/
• What The IACC Must Consider. https://tacanow.org/blog/what-the-iacc-must-consider/

5. American Academy of Pediatrics Identification, Evaluation, and Management of Children With Autism Spectrum Disorder.Pediatrics. doi: https://doi.org/10.1542/peds.2019-3447

• PDFs of previous AAP Standards of Care can be found

6. National Autism Association (NAA) Autism Safety information including wandering reports https://nationalautismassociation.org/resources/wandering/

Congressional Research Service. Summary: S.2070 – Kevin and Avonte’s Law of 2017. https://www.congress.gov/bill/115th-congress/senate-bill/2070

7. Missing Children & Autism: Every Minute Matters

https://www.missingkids.org/blog/2022/missing-children-and-autism-every-minute-matters

8. U.S. Adults with autism

https://www.cdc.gov/autism/publications/adults-living-with-autism-spectrum-disorder.html#:~:text=An%20estimated%205%2C437%2C988%20(2.21%25),as%20they%20transition%20to%20adulthood.

9. Centers for Disease Control and Prevention Learn the Signs. Act Early.http://www.cdc.gov/ncbddd/actearly/
10. Barriers to diagnosis
    https://www.fiercehealthcare.com/providers/new-report-state-autism-care-reveals-barriers-diagnosis
11. Investing in early intervention:
    https://www.ffyf.org/resources/2022/01/examining-the-significant-return-on-investment-from-high-quality-early-learning-care/
12. Congressional Research Service Summary: H.R.647 – ABLE Act of 2014. https://www.congress.gov/bill/113th-congress/house-bill/647
13. Autism Knowledge Gateway autism study portal
    https://www.thoughtfoundation.org/autism-knowledge-gateway
14. Postsecondary employment experiences among young adults with an autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 52(9), 931–939. https://doi.org/10.1016/j.jaac.2013.05.019
15. Science and Subtypes in Autism.https://tacanowblog.com/2014/04/11/science-and-subtypes-in-autism/