How We Started

Begun in 2004, AutismUp is the leading not-for-profit advocacy organization for individuals with Autism Spectrum Disorder (ASD) and their families in the Rochester area.

It all started with four moms in a coffee shop, talking late into the night about interventions they were using to help their kids with Autism Spectrum Disorder (ASD). As with many parents who receive a diagnosis of ASD for their child, they were looking for support. These moms would find out from each other different programs and therapies that were available for their children, locally and nationally. If they didn’t get this information from each other, where would they get it? Somewhere, there was a breakdown of communication.

These moms also needed to talk. They needed to speak of the struggles they experienced every day in raising a child with ASD.

And so, the four moms in the coffee shop rallied some of their friends, and AutismUp held its kick-off meeting in September 2004. AutismUp hoped to help channel information to families, as well as to further expand the opportunities for children with ASD. AutismUp wanted to provide emotional support to parents; opportunities to share with other families; and social opportunities for the moms, for the kids, and for the whole family.

AutismUp now holds monthly meetings (open to the public) to discuss topics pertinent to ASD. There is also informal networking and support through an online message board, giving members access to one another 24/7.

Recently, AutismUp has begun work on some more ambitious projects, including collaborating with YMCA for a Social Skills Education Program for children with ASD; development of social skills education groups that take place in the community; an annual Lose the Training Wheels bike camp and collaboration with other agencies on recreational opportunities.

As AutismUp has grown in size and scope, we have reached out to the Rochester community for help and support, and have been gratified by the response. Our accomplishments to date have been made possible through the dedication of our members, the support of families and friends, the donation of time from various local experts who have spoken at our meetings, and financial support from numerous members of our community.

AutismUp has clearly come a long way from the late nights of four moms in a coffee shop. With continued support from our entire community – members (families), service providers, medical providers, elected officials, friends, and financial supporters – we expect to achieve our mission, and make a positive difference in the lives of children with ASD and their families.