Today is April 21st, Autism After 21 Day, and COVID-19 has shaken our world. The fragility of our status quo has been exposed. Discrimination has reared its ugly head as ethicists debate whether people on the autism spectrum may be given access to a ventilator if needed. The technology gap becomes much wider as some children and adults with high support needs do not feel comfort in using a screen, yet others have found it as their only source of connection. The rest of the world joins the isolation that many neurodiverse individuals and families feel on a regular basis. When the CDC announced on March 26, 2020 that the prevalence rate of autism has risen, yet again, to 1 in 54 children from 1 in 59, the faces of adults with autism who are struggling valiantly to navigate our world again flashed before my eyes.
As the Director of the Autism Housing Network for the Madison House Autism Foundation, it is my job to help communities across our nation understand and prepare for the future of autism in adulthood. At diagnosis, most families become inundated with treatment options for their toddler, plopped into the sea without any reference of where they are and where to go. Soon, however, online searches, local support and social media groups, and word of mouth help them find the path forward. It is often well into high school before families and teens on the spectrum begin to think about how their ship will sail into adulthood. Unfortunately, they soon discover the ship that supports them and holds their small world of friends is about to leave them “high and dry!” They are abandoned without having been equipped to utilize the skills and services needed for survival as adults.
For these 1 in 54 children with autism we must act with a clear resolve to create a better future.
In the midst of a major health crisis, what matters most becomes clear. The cancelling of events during COVID-19 had provided me time to update an older infographic. Unsurprisingly, the gap of supply and demand for residential support services is also growing. 83% or over 6 million adults with autism or other intellectual/developmental disabilities have no access to housing or residential services! More than ever, our work is vital as we help empower local communities to create more opportunities for #AutismAfter21.
In 2016, we founded ‘Autism After 21 Day’ and launched the Autism Housing Network website with the Autism Housing Network Virtual Tour of Housing & Support Models. Our goal was to inspire innovation and more inclusive communities. Since then, we have advocated for research into adult issues at the United Nations and the National Institutes of Health. We have overcome major policy barriers through our advocacy efforts; co-hosted two industry leading Neurodiverse Real Estate Think Tanks with Autism Housing Network and First Place Global Leadership Institute; and together we are now collaborating with researchers at Arizona State University to develop a report called A Place in the World which will lay the foundation for the emergence of a diverse neuro-inclusive housing movement nationwide. A new wave of life opportunities is coming for those with autism and other neurodiversities.
As stated years before, if I had a magic wand, this is my hope for the 1 in 54 with autism:
People will hear you are autistic and immediately recognize the strength and the struggles of what that diagnosis may mean to you. They will have a variety of faces, lifestyles, and support needs in mind, like those whom we have featured in our #Imagine21 mini-documentary series and be ready to help you find your place in the world.
From before school starts, you will be treated by therapists as a person with enormous potential, working hard to increase your ability to communicate, cope with the sensory onslaught, and enjoy the world around you.
In grade school, your teachers will be excited to explore and find the best methods that allow you to learn the material needed to reach your maximum potential with adulthood in mind. You will not be seen on a linear scale of “high-functioning” and “low-functioning”, but be given the opportunity to turn your passion into a valuable asset while identifying the areas where you may need support as an adult.
As a transitioning teen student, your goals and support needs will have been identified along with a personal budget to meet your specific needs. You will not just squeeze yourself into existing programs or boxes in your state, but have the control to view the national marketplace of options and join, adapt or create a truly person-centered lifeplan.
When you reach young adulthood, our country will understand that it may take a bit longer for you to find your place in the adult world and parents will not have to quit a job to stay home with you. You will have the support you need to graduate into your own home at your own pace. Affordable housing will be available in a wide variety of offerings, designed by architects who specialize in sensory-friendly and accessible design. Assistive technology professionals will identify the SmartHome tools to help you rely less on people telling you what to do or doing things for you.
Direct Support Professionals who are skilled person-centered thinkers will help you get dressed, plan and prepare meals, or accompany you as needed to live the life you self-direct. They will be paid a living wage, and will no longer have to quit after six months for a higher paying job. Most importantly: whether it’s college, a job, volunteer work, or just hanging out with friends, you will have a Community Connector who will help you find or create the spaces for nurturing relationships.
In this achievable future, 1 in 54 children who will soon become autistic adults will no longer be invisible, isolated or lonely. They will have a vast network of supports to live in communities which value them.
I know this may seem like a distant land for some who read this, but we at Madison House Autism Foundation take to heart Margaret Mead’s advice, “Never doubt that a small group of thoughtful, committed citizens can change the world.” Small groups of parents and caring citizens are gathering in communities across the country and we are working with them. They are the reason we strive to develop tools and resources that empower local communities to create a better future.
We began the declaration and observance of Autism After 21 Day through a federal proclamation and gathering of national thought and political leaders to amplify to the greater community that children with autism grow up to become adults with autism. By making the world better for them, we are making the world better for all. In light of CDC announcing that 1 in 54 children are on the autism spectrum, will you join us and create a better future for each child who will soon reach adulthood?
- Honor a loved one by starting your own #AutismAfter21 Fundraising page
- Ask your community to declare April 21st as Autism After 21 Day next year
- Follow the Autism Housing Network Facebook page to raise awareness by sharing important resources and stories on your social media
- Commit $21 as a monthly pledge to help us continue our work