One Year of NCSA: A Brief Report From the Board

Dear Friends,

One year has passed since NCSA launched in January 2019. And while we are just off the starting block we wanted to report on some of our accomplishments from last 12 months, and look a bit into the future. Over the past year, we:

  • Launched a website, ncsautism.org, which has seen more than a quarter-million visitors

  • Created NCSA Position Statements emphasizing the need for realistic solutions for individuals and families affected by severe autism

  • Had multiple contacts with agencies educating about the needs of the severe autism population (eg, non-competitive employment, housing choices, research funding) and partnered with other organizations in meeting directly with administrators and lawmakers 

  • Attended multiple national and local conferences and meetings involving outreach and speaking engagements (eg, INSAR, Autism Law Summit, Autism New Jersey, IACC Housing Workshop)

  • Hosted an active blog with many dozens of posts from all over the country

  • Created a popular Facebook presence, with nearly 7,000 follows

  • Through our online presence, provided a national forum to highlight innovative approaches for day and vocational programs and housing for people with severe autism

  • Formed the NCSA Leadership Council, which have helped us draft letters and blogs and engage in local advocacy

  • Thanks to hundreds of you who spontaneously and generously donated to support our efforts, we successfully fund-raised to cover our costs 

  • Most importantly, we have changed the conversation about autism: severe autism is no longer in the closet and our growing national crisis is gaining the attention it clearly deserves.

Of course, this is just a start. We are facing a long-term support and housing crisis of epic proportions, and we need momentum to pioneer new solutions and unleash more capacity. Waitlists are growing and families are panicking. 

Among the challenges ahead: dispelling the absurd, damaging myth there has been no true increase in autism; separating the autisms into meaningful subgroups for the betterment of science and policy; pushing for treatments that reduce dangerous behaviors and improve quality of life; and pioneering innovative policy to expand access to long-term care. We will continue to be a voice for severe autism, because we know that hiding in the shadows will never advance our cause.

There are many ways to support us, you might consider:

We are grateful for the outpouring of support we received during our first year and look forward to doing more to help address our nation's mounting severe autism crisis in 2020.
—The NCSA Board of Directors