Last month, I was invited to attend the Autism Speaks Thought Leadership Summit on Achieving Health Equity in Washington, DC. Hosted in a conference room at the Museum of the American Indian on the National Mall, midway between the White House and Capitol Hill, an accomplished array of researchers, legislators, legislative aides, physicians, university professors and parent advocates were assembled to collectively address the current state of
science in autism research
data collection and mining relevant to autism across the lifespan
government legislation, programs and supports relevant to autism.
Much like Inclusion Fusion Live, it was one of those conferences where your mind is filled to overflow with information, generation of new ideas and new people you’d like to collaborate with on your work. Though the purpose of the conference was to identify the disparities in the US around the delivery of autism information, diagnosis, treatment options and services based on ethnic, geographic and socio-economic factors, much can be gleaned from what was shared that can be used by churches and ministries to educate and serve their communities.
Five Key Takeaways
1 - The federal government wants autism research and support to be a top priority. The Autism Cares Act of 2019 was signed into law on September 30, 2019.This law ensures support for research, services, prevalence tracking, and other government activities. New provisions expand the focus of government activities to include the entire lifespan of people on the autism spectrum and require a report to the Interagency Autism Coordinating Committee (IACC) on progress made by 9/30/2021.
2 - Research and funding is at an all-time high. Data drives research, which provides the way for new medication, therapies and supports. Both research and data can only be obtained with funding. In 1993, less than $10 million was spent on autism research by the National Institutes of Health. Thanks to the Autism Cares Law of 2019, federal interagency spending on autism is budgeted to be at least $369.7 million through 2024.
3 - Knowledge gaps exist, particularly for people living in lower socio-economic communities, immigrant communities and ethnic minorities. Missing data points are being sought through CDC, NIH and networks like ADDM, BRFSS, DHDS, NHIS, the National Autism Indicators Report and organizations like the Child Neurology Foundation. Data points specifically sought include information for children of every ethnicity with autism and also for adults and their caregivers. Large health insurers are also analyzing their internal data to understand where service and knowledge gaps exist, and to work with physicians so that doctors can communicate effectively about autism to patients of every ethnicity.
But even with the research, awareness and funding, children from poorer communities tend to be diagnosed later than children in more affluent communities, if they are diagnosed at all. First generation American families often blame themselves for a child’s struggles, and many have never heard the word ‘autism.’
When knowledge gaps are filled with education about autism, the differences in rates of diagnoses across different ethnicities and socio-economic backgrounds are nearly identical. Grassroots advocacy and education efforts have been effective in educating about autism, but much more advocacy is needed to raise the level of awareness across immigrant and minority communities.
4 - Services gaps and transition cliffs exist. Children aging out of service eligibility face a cliff, where supports no longer exist. But even before reaching adulthood, education and support services are not consistently available or accessible across the United States.
Inner cities and rural areas have similar issues, where accessibility to clinicians, education and other supports can be nearly impossible to find, where waiting periods to get appointments or time and distance traveled prevent many parents from being able to get the supports their child needs.
Advocacy and policy-making groups are working at the state level, to use data collection to identify service gaps in minority communities and communities with limited services and providers. These same groups are also working to identify critical transition issues, from education to employment, and ensure that localities are communicating about available supports for adults through collaborations with community groups, as well as seeking new collaborations to expand awareness. Though much is now known about autism in childhood, these same groups are also working hard to increase understanding of autism across the lifespan.
5 - Services silos are the norm, rather than the exception. Autism supports—whether medical, therapies, or state and local programs—operate in silos. Children and adults with autism often have comorbid conditions that fail to be addressed together, even though people with autism have the highest rates of mental illness as compared to other chronic health groups.
Several doctors and presenters stressed the importance of moving slightly away from labels and really listening to the person or parent. There was consensus that treatment and interventions should be person-specific, but existing treatment and supports are not designed this way. There was also consensus that the means of screening for autism varies greatly across the country, and screenings should be more consistent, but also more personalized. Many of the presenters talked about the need for grassroots education efforts, so that the issues in underserved communities can be more fully understood and addressed.
Four Ways Churches and Families Can Use The Information
1 - Parent advocacy is crucial. Multiple presenters spoke about how parents are the most important voice in the stakeholders’ world. It was suggested that children with other developmental disabilities or complex medical needs may be farther along, with respect to the research and support services provided, as compared to autism supports. Connecting with parent advocates active in other disability communities may help autism families by sharing the types of research underway, the coordinated medical systems of care in place, and supports available from state and local governments and non-profits for other types of disabilities.
2 - Particularly in minority or immigrant communities, church education efforts are crucial. Local clubs, ministries and churches are often the backbone of support for minority and immigrant communities. And these organizations are often where information is shared about autism and available supports.
Grants are available through federal and state agencies and many non-profits, as a result of the increased funding for autism research and supports. Encourage your church members to take advantage of information, training and supports that are already available, and pay it forward to others who will come behind them by taking part in surveys and other information-sharing efforts. Encourage families with adults on the autism spectrum to participate in surveys to increase understanding of the needs of adults after they transition off the services cliff. If your church is in an ethnic minority community, participating in research, surveys and community-based outreach from physicians and researchers can dramatically help others in your community with autism.
In a conversation I had with the Autism Speaks conference director, he noted that churches may be eligible for grants for education programs. To qualify, churches must develop measurable goals for their autism-related education efforts. For examples of how churches have obtained grant-funding for church-based mental health training programs, see the Hogg Foundation for Mental Health.
Some programs of note:
The Center for All Abilities started in a Chinese American church in New York City, as a support for special needs parents. When the program outgrow their space and relocated, many parents and families followed the program to their new space. The Center is now part of Hope for New York.
An autism-focused community data research partnership issued a family assessment survey to Chinese Americans in New York City this month.
3 - Designate a special needs or mental health Champion in your church. Get to know the families in your church and community. For special needs families, learn what supports they have and what supports are desired but missing. Make connections with local mental health agencies and learn what services are available in your community, as well as data available to many cities and localities through emerging autism-related data dashboards. Host parent education to share the information about what is available in your community. For families who do not have proficiency in English, assist with translating autism information into the family’s language. Connect with churches teaching ESL classes to find translators.
The Champion can also be a point of contact for local autism service providers, to distribute information about upcoming parent training, surveys and other community based supports that the parents may not otherwise know.
Champions can also assist families by organizing a group of local autism community stakeholders for autism research, working with trusted local doctors. Further, Champions can become a distribution point for job skills training information for families and employers who hire individuals with autism.
Some employment programs of note:
Autism Speaks is developing free downloadable employment toolkits, for individuals and for employers, and is working to develop alternate interviewing practices for employers.
Individual Placement and Support employment program at Dartmouth-Hitchcock Medical Center. Jennifer McLaren, M.D. is the program director. The IPS program has been used successfully to help people with mental illness obtain employment and has recently been expanded to include individuals with autism.
4 - Encourage people in your church who are also in the autism community to become peer or family support specialists. Peer support specialists (PSS) are individuals with lived mental health experience who work with others having a mental health crisis. Part coach, part problem-solver and personal advocate, the PSS model has spread across the US and now has training and certification requirements.
A similar approach is being implemented in a few locations across the US for Family Peer Advocates (FPA). FPA’s engage with caregivers as partners to determine what support, information, and knowledge is needed about services in the child-serving systems. FPA’s work with caregivers to develop focused priorities and goals for themselves that will in turn support their child or youth to be successful in their home, school and community.
As of 2019, over 600 Family Peer Advocate credentials have been awarded by the New York State Office of Mental Health. The establishment of the FPA credentials recognizes the importance of family-to-family support, and formally recognizes the expertise of FPAs. FPA support services are poised to become Medicaid reimbursable services, which will increase opportunities to support all Medicaid eligible children.
As a result, when the church encourages families to participate in programs that increase their autism supports expertise, such participation may even lead to career opportunities for families with autism.
Other programs of note:
Rutgers University in New Jersey has the premier autism learning and research center in the United States. New Jersey has the highest rate of occurrence of autism, but the quality and availability of autism support services are superior to that of many other states. Consequently, many families relocate to New Jersey to obtain the needed support.
Note: The IACC is seeking new public members. To apply, click here. The application window closes on February 21.
On February 19, our monthly video roundtable discussion will be a recap of this conference, with more information shared and opportunity for church leaders and families to ask questions. Sign up today!
Catherine Boyle is the Director of Mental Health Ministry for Key Ministry. You can follow her work here or on Facebook, Twitter, Instagram, Pinterest and www.catherineboyle.com.
