*I returned to DC to tell the story of my twenty-two-year-old severely autistic son Justin*.

The video version of this story has been shared thousands of times on Facebook.

Last week I had the honor of returning to my second home of Washington, DC, to speak my family’s truth, and that of thousands of others, on Capitol Hill.

I was a part of the New Jersey contingent of the National Council on Severe Autism on a road trip to meet with legislative aides from both parties. The event took place over two days, with our first day occurring on World Autism Acceptance Day, involving speeches and training in preparation for our participation for our second day on the Hill.

I Found My People

I will tell you that as I entered the Edlavitch JCC and into their auditorium, and looked up at a sea of well over a hundred faces, faces from over twenty states in our union, I knew I’d found “ my people”.

*Members of the NJ chapter of NCSA in Washington*

Professionals who understand that profound autism is often constant suffering.

Mothers who comprehend that profound autism is danger.

Fathers who live the truth that profound autism is often the relinquishing of the dream I believe most parents have for their children- to lead happy, safe and productive lives.

Advocates who understand that profound autism is not a gift.

Our Four Big Asks

I will admit, as we spent the day listening to inspiring speeches and trainings, I was in awe of the line-up the NCSA was able to provide for us that day.

Jackie Kancir, NCSA’s executive director, whose brilliance and attention to detail helped create the entire event.

Jill Escher, who brought up the stunning fact that many of the people in this room, some with adult children in their twenties and thirties, had never been away from their loved ones before.

Amy Lutz, who in speaking about the perception of severe autism, said that “in order to change the politics, we need to change the culture.”

Alison Singer, who eloquently explained the critical need for oversight to understand the causes, develop treatments, review existing treatments, and find better tools for early diagnosis.

Judith Ursitti, who presented so many salient points; however the one that stuck with me was that profound autism is almost 27% of the autism population, but receives only 6% of the research.

Women who are all trailblazers, whose articles and work I’ve read over the years, who have made such a tremendous contribution to our corner of the autism spectrum.

Women who are fierce, and fearless in their advocacy for our profoundly affected loved ones.

We ended the day, after being showered with food and swag and materials to help us make our asks, with witnessing role-playing in anticipation of questions we might receive from legislative aides and assistants on Thursday. We also reviewed our four big asks:

To ask the HHS department to declare autism a public health emergency.

To request a GAO report to investigate housing regulations.

To research priorities regarding the funding from the Autism CARES Act.

To plead for Medicaid to not be altered in any way.

Our Day On The Hill

When the day concluded, our NJ contingent met briefly to figure out how to divide and conquer. We were able to seamlessly orchestrate a potent way to plead our causes, with a mixture of hard core facts interspersed with stories, and pictures of our loved ones, to illustrate this truth.

That profound autism is a crisis.

And that our loved ones desperately need our senators’ and representatives’ help.

We all met up later at a mixer generously provided for us by NCSA sponsors, then went to our respective places of rest to prepare for the day ahead.

And what a day it was.

I got down to the Mall early, as I felt I needed a close-up view of the Capitol to inspire me. As I made my way back to the Hart Senate building, I was struck by how so many groups were there to advocate, some wearing t-shirts like us, or wielding signs with their personal asks.

It reminded me of how much need there is in our country.

It was a reminder of how much need there is in our world.

After a brief trip through security, I decided before I practiced my speech one last time, that I wanted to get the lay of the land. So I quickly scoped out where Senator Booker’s and Senator Kim’s offices were located, glancing into every office I passed.

Some offices had multiple groups, some of whom were speaking to aides from couches in the waiting area.

Some were pitching their causes in hallways.

None looked more passionate than us.

Telling Our Stories

*We told our stories around a crowded conference table in the Senate office building.*

Finally, the time came for the NJ contingent to meet, and head to our appointed meetings with the offices of Senator Booker and Senator Kim.

The meetings went beautifully. We found both the legislative aide we met in Senator Booker’s office and the legislative correspondent we met in Senator Kim’s office to be attentive, empathetic, and interested in our pleas.

We watched them take notes as several of our leaders, Pat Miller, Lisa Parles, Mitch Baum, Loretta Boronat and Jonah Zimiles, among others, deftly wove facts with faces as we shared photos of our loved ones, and stories to illustrate the crises we are facing within our own homes, crises shared by thousands of other families, 42,000 in NJ alone.

Between the two meetings, we all got to share our truths.

A story of a child in so much abdominal pain he leaned dangerously over a windowsill repeatedly in the hopes of making it end.

A vignette of a father, whose young daughter asked him at a blood draw for her and her profoundly affected sibling, would this procedure help her brother find his words.

A tale of a warrior mother, interviewed by Newsweek twenty years prior, who asked the reporter, if she could only publish one sentence, let it be “What happens when they grow up?”

Tragically, with the housing crisis, and the potential eradication of any meaningful access to Medicaid, we are still asking that question decades later.

The Real Rock Stars

But the real rock stars of our day were the profoundly autistic adults, who accompanied the NJ contingent to the meetings.

Danny.

Avika.

John.

And of course, their caregivers, who moved mountains, who were incredibly brave, conquering logistics of which I am simply in awe, to have them participate in this momentous day.

A picture may paint a thousand words.

But nothing makes an impression more than the living, breathing face of profound autism right in front of your eyes.

It is difficult to look away.

I was privileged to tell my story twice that day as well.

I was prepared by friends who worked on the Hill that aides and correspondents might seem stony-faced, impassive, as they listened to us.

I Was Heard

To tell the truth, I preferred that outcome, as it took all of my strength to share my three minute tale.

A tale of my twenty-two-year-old severely autistic son Justin, who would no longer have a day program to attend if drastic cuts are made to Medicaid, a program where he has friends, goes out into the community, and thrives.

An appeal to prevent extreme cuts to Medicaid, because if enacted, my severely autistic son would no longer have a home to reside in, or anyone to care for him and his 24/7 needs, when I am gone.

A supplication to stave off radical cuts to Medicaid for my husband Jeff, who developed early onset Alzheimers at age fifty-five, who will someday need Medicaid services, for as a retired school teacher, I will never have the two million required for his long-term care.

*I didn’t know it at the time, but the eyes of Senator’s aide, like mine, were filled with tears during the entirety of my desperate entreaty.*

I told my story for the first time in one of the cramped offices of Senator Booker, about eight of us at the table, the rest of the group encircling us, his legislative aide as physically far away from me as possible.

I know Gloria Nunez heard me. We maintained eye contact for three consecutive minutes.

That is a long time when you are listening to a petition like mine.

What I didn’t know then, and didn’t learn until the NJ debriefing, was that her eyes, like mine, were filled with tears during the entirety of my desperate entreaty.

I was heard.

On that glorious day, all of us were heard.

And finally, for one day, we as caregivers, and most importantly, our profoundly affected, brave and resilient children, all had a place at the table.