Daina is a parent to an 18-year-old son who became an educational advocate when he was first diagnosed at age three. She used that knowledge to fight for services and specialized placement which she believes made him able to graduate from high school. She is also connected to a great group of other autism moms (called the SPED moms) and is involved in various causes to advocate in their area.

Why is Autism Advocacy important?

Answer: I became involved in the Autism Community when my son was diagnosed. It was 2002 and we were living in MA at the time. There weren't many resources available for families; Autism Speaks and other foundations didn't exist yet, so it was up to parents to educate themselves from the minimal information that was available.

Since my son was entering school that year I became a certified educational advocate through the Federation of Children with Special Needs. I was passionate about fighting for my son's rights and educating others so they could do the same. My advocacy experience and education helped me to secure supports and services for my son that have helped him to reach his personal potential during the K-12 years. I am also grateful because it has allowed me to support and educate other families over the years as to their children's rights for IEP meetings and placements.

My son graduated with a diploma from a specialized placement this past June and we are now officially in post-high-school transition. All of my experience navigating K-12 for my own son is over, and I feel like I have training wheels on again as I learn to manage everything that comes with the post 18 special needs world. Last year I started working as a Grassroots Volunteer Advocate for Autism Speaks because it allows me to continue advocating for those on the spectrum while also staying connected to other parents and advocates who I can continue to learn from.

Are there certain issues you would like to see more of in the media?

Answer: There are so many autistics aging out of school and facing life in the real world. Employment training, employment, and housing options are needs that we need to focus on moving forward for individuals on all points of the spectrum. There tends to be a media focus on the "sexy" and palatable side of autism, i.e. "The Good Doctor", giving people the impression that all of our kids are specialists in some area. I can't tell you how many times people have said to me "So he's good at math?" when they hear my son is attending class at community college. And let me add it's always in the kindest and most well-meaning way. But no, he's not. He's taking art and basic math and the real accomplishment is that he's even attending a typical class.

I think having television shows that have autistic characters that are easy to digest still increases awareness, and ultimately that is a positive thing as it provides a launching pad to get into the not so easy autism stories.

I guess the question we need to get out there more is "what's going to happen when the parents are gone?" And that's my driving force as an advocate.

How can we find more information about you?

Answer: There is a non-profit that I support in my local community that I would love to share information about. They are a great story about a group of parents that had the vision to create an intentional community (with varying levels of support) for adults with developmental disabilities so they can continue to live in their community. They have two approved communities in two of our local cities in only 5 years and have also created a community garden that serves as a day program and volunteer site. The intention is to create a model that can be copied throughout the country.

I am not on the board myself, but have been involved since the inception and am close with many on the board. Their website is sunflowerhill.org .

One of the complaints I hear is There arent any resources for my child where I live. My answer is always the same. Go and create it.

Daina along with Sunflower Hill are way makers. They saw a need in their community and created a sustainable residential community for individuals with special needs. Thank you!