Autism Speaks Advocacy 2025 Forum

Last Sunday I said goodbye to my family, excited and hopeful to return to my second home of Washington, DC, to participate in the Autism Speaks Advocacy 2025 Forum.

For a mom of two adult children on the spectrum, and a husband with early on-set Alzheimers, it was a life-changing three days.

I’m certain it was a daunting challenge to pull off an event of this magnitude, all orchestrated down to the last detail by Allee Smith, created with dignity and respect in mind for all participants, whether advocates, parents, or support professionals.

With careful foresight, our initial training day took place in the National Guard Museum, a fitting forum to educate us on how to advocate to protect our loved ones. We were able to sit with other participants from our home states, twenty states in total.

This gave us the opportunity to get to know many of the people with whom we would be traveling around the Hill to promote Autism Speak’s two “asks”.

To ask our legislators to deliver on the promise of the Autism CARES Act by fully funding its programs in the FY26 federal budget.

To further ask them to support additional legislation that improves autism service and supports.

We were fortunate to hear many passionate leaders speak about such topics as services and supports for all people on the spectrum, progress that has been made on the scientific front, and successes in advocacy that have been made since Autism Speaks was founded twenty years ago.

For me, the most powerful forum of the day was conducted by Dr. Andy Shih, Chief Science Officer, Autism Speaks; Dr. Helen Tager-Flusberg, Founder of the Coalition of Autism Scientists, as well as Professor Emerita, Boston University Department of Psychological and Brain Sciences; and Dr. Kristin Sohl, Founder/Executive Director of ECHO Autism Communities and Professor of Clinical Pediatrics at the University of Missouri School of Medicine.

Listening to Dr. Tager-Flusberg speak so humbly regarding her incredible work from a half century ago to convince her peers that genetic origins needed to be studied regarding autism, was particularly pertinent to my family.

Due to her advocacy and the countless hours of research performed by scientists nationwide, much of that funded by the Autism Cares Act, CHOP (Children’s Hospital of Philadelphia), was able through whole exome gene sequencing to discover my family’s autism gene.

My youngest son now knows the reason for his struggles, and exactly what his chances are of passing on this gene to future progeny.

That information has been priceless to our family. I was able to share this finding with Dr. Shih after the panel concluded, and to thank him for his part in bringing research to fruition for our family, and thousands of others.

We both had tears in our eyes.

Later in the day another panel educated us on proposals currently in front of Congress related to supports and services for people with autism and their families, and discussed their four priority areas for advocacy: Medicaid, caregiving, education, and financial empowerment. Watching their role-playing as they acted out how things might go in our meetings with legislators the next day was enlightening, with Stuart Spielman, Former Senior Vice President of Advocacy, and Lisa Belcastro, Director of Public Policy, presenting different scenarios we might encounter on Hill Day.

After their panel concluded, I felt informed, and empowered.

We were given time afterwards to create our personal “asks” with advocates from our states, encouraged to weave facts with our personal anecdotes.

Autism Speaks exhorted us to tell our stories; advocates, parents, and professionals alike.

We adjourned for the day, and returned early the next morning to the National Guard Museum for a rousing sendoff from Annette Addo-Yobo, Miss Texas 2024 and First Runner-up at Miss America, as well as last minute logistics. There were a substantial number of participants from my home state of New Jersey. We had realized the day prior that during some meetings with our legislators we would all be together, and for some we were broken up into smaller groups so that we could all meet with legislators for whom we were actual constituents.

We figured out our logistics, got into Lyfts generously provided by Autism Speaks, and embarked upon an unprecedented day of advocating and sharing our families’ truths.

The highlight of the day for me was getting to spend over an hour with Congressman Chris Smith (my representative in Congress), his legislative aide, as well as David Sitcovsky, Vice President of Advocacy, Keith Wargo, Autism Speaks President and CEO, and his lovely wife Anne.

In the taxi on the way over from the Senate side of the Hill (it was a thousand degrees at 4:00 PM, waiting for a Lyft was no longer an option), I realized it was most likely that the rest of my NJ contingent would not make the meeting in time as they were in Senator Andy Kim’s office. The attendants at the meeting would most likely be just several of the most influential people in Autism Speaks, the Congressman, his aide, and me.

I reminded myself to come up with a few important points entwined with personal anecdotes.

I urged myself to remember I was his constituent.

I told myself to make my community, and my sons, proud.

We were there for over an hour-and-a-half, an unprecedented time for any Congressperson to spend with his or her constituents. I listened as Anne spoke eloquently regarding employment issues, and the ongoing need for better training for medical professionals both in diagnosis, and throughout the lifespan.

After establishing a connection with Congressman Smith regarding a mutual friend who was the impetus for the Autism Cares Act, I was able to speak my concerns.

My wish that the fact that only 6% of the research funding from the Autism Cares Act goes to the profound autism segment of the autism population, although they encompass 30% of the autism spectrum, needs to change.

I echoed Anne’s statements regarding the need for better training for all professionals, and compassionate care, across the spectrum.

I shared the woeful inadequacies for autism services for families in crisis in New Jersey, one of the “better” states for such services in our country. There is only one hospital to turn to, and scant resources in the state equipped to support our population, for follow-up and continued care.

I described the overwhelming fears of my family, my friends, and countless others throughout Congressman Smith’s constituency, regarding cuts to NJ Medicaid.

I told him we were terrified of the potential loss of day programs; the closing of group homes; and the loss of healthcare.

I shared my fears my husband would never get a Medicaid bed when he requires longterm care.

Congressman Smith listened intently, and with compassion, told me he wanted to know what happened down the road to families in our state.

I looked him right back in the eye, and said I would.

It was a bucket list adventure for me.

The next day, in the actual Capitol building, a fitting place for a sendoff, we heard many passionate recounts of meetings that had transpired the day before, and how crucial federal action is in driving meaningful improvements in autism research and services for improving the quality of life of autistic people, and their familie,s throughout their lifespans.

Amy Gravino, Emerging Leader for Autism Speaks and self-advocate, among others, spoke eloquently and honestly about her struggles, her triumphs, and her work in the fields of sexuality and depression.

She left me in tears. I am confident I was not the only one in the room.

I had to leave soon after she spoke, and make the long trek back to New Jersey.

I was irrevocably altered by this experience, by this opportunity to have a voice in which to share my concerns for my sons, my husband, and my community.

I felt heard.

Prior to our event, Autism Speaks asked all participants to write something about our loved ones, and send photos for a story we could leave behind with legislators.

One of my photos is of my then twenty-one-year-old son Justin in his riding helmet, about to engage in a horseback riding lesson which he so adores, partially funded by Medicaid.

One of the requests Autism Speaks had was to recount my hopes for his future.

I imagine many families share my sentiments.

I wrote that I hope he will have choices in his life; a sense of community; and peace.

I believe the one hundred and twenty participants in the Autism Speaks Advocacy Forum were given the unparalleled opportunity to make these requests for their loved ones too.