What Does Acceptance Mean
For Our Severe Autism Community

My 24-year-old son, John, is the face of severe autism. He has very limited language. He can’t read or write. He doesn’t text his friends, make phone calls, or understand danger. He can’t tell me if he’s in pain, or if someone is being unkind or hurting him. John requires 24/7 supervision and lifelong 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...." Read more of a mother’s trip to Washington with NCSA-NJ to advocate for her twenty-two-year-old profoundly autistic son Justin, who would no longer have a day program to attend if drastic cuts are made to Medicaid.

Follow the 30-year journey of a true OG severe autism advocates and her family’s quest for answers, acceptance and to make a difference. What’s gotten better, worse and just stayed the same over a generation.

We had wonderful encounters with Josh Groban, Angelique Kidjo, and Barbara Cook, all of whom made my family feel accepted.

Sadly, that is has not always been what we experience.

Our son David is 32 years old and he has Severe Autism, an Anxiety Disorder, OCD, PTSD subsequent to abuse in a former group home and very Severe PICA. He has had 5 intestinal blockages requiring hospitalization and three surgeries.

Severe autism makes life a struggle. It is not just “different” to be unable to ask for a drink of water when you are thirsty, ask for help when you are in pain or do the things you love to do.

Sometimes severe autism looks like this. I wake each day with a knot in my stomach hoping for a good day but ready to deal with what the day brings

We see this too often. We need laws that protect our community, training and supervision that prevents abuse and enforcement that punishes it. And a society that accepts our children, but NEVER accepts their abuse.

John won the final Bingo game of the night—with a little help from the young man next to him who read his numbers aloud. Everyone clapped.

My son, for all his oddness, is a human being with all the rights and privileges of any other human. Dignity and respect. Please don't talk to my son like he is a toddler. He is an adult man.

Over 800 new drugs approved since 2009. Zero for autism. Not everyone with autism needs or wants medication to help them. But not everyone with autism has severe autism.

About 27% of people with autism have severe forms, but only 6% of research funding focused on issues facing the severe autism community. That’s not acceptance

True acceptance should be unconditional, especially within special education, day programs, vocational, and residential.

Celebrities, politicians and business leaders with autism have made a lot of progress towards gaining acceptance. At the same time, our community has suffered.,