To the Editor:
Re “Kennedy Described My Daughter’s Reality,” by Emily May (Opinion guest essay, April 27):
Ms. May said what too many of us parents of autistic children have been forced to bury. Profound autism is not an idea. It’s not an identity slogan. It’s a reality that steals language, safety and futures — and pretending otherwise helps no one.
Like the author, I have spent years refusing the script that demands either silence or celebration. Naming our children’s pain is not betrayal. It is love, protection, survival.
Ms. May’s voice doesn’t stand alone. It joins a growing movement — parents who are done asking permission to tell the truth. We are building new alliances, pushing for real research and refusing to let our children’s suffering be edited out for political comfort.
The old institutions failed us because they fear reality more than they love our kids. We are writing something new, not because we wanted this fight, but because our children deserve it.
Thank you, Ms. May, for your courage.
Sarah Kernion
Westfield, N.J.
The writer is a mother of two children with nonspeaking autism and the founder of Saturday’s Story, a neurodiversity advocacy firm.
To the Editor:
Thank you for publishing Emily May’s cry from the heart about her daughter who has profound autism. I wish you would also publish a succinct piece about how desperate the need is for “a separate diagnostic category for such children — to help tailor research, policy and services more effectively,” as Ms. May writes.
Neurodiversity can be a gift, and I strongly support the efforts to recognize this. I have friends in the community of high-functioning autistic people, and I have received a diagnosis of attention deficit hyperactivity disorder. We’ve been helped by attitudes that see us as different, not disabled. But people like Ms. May’s daughter are being harmed by being grouped with all autistic people under one umbrella. Please make a clarion call for this necessary change.
Nancy Wirsig McClure
Portland, Ore.
To the Editor:
I appreciated Emily May’s honest and candid reflections on her 6-year-old autistic daughter. Her account helped highlight the biggest disservice in Robert F. Kennedy Jr.’s comments: his claim that autistic children will “never” be able to do things like write a poem, go on a date or have a job.
One lesson from my five decades supporting autistic people and their families is that for autistic people, as with all people, development continues across the life span. I have known many children matching Ms. May’s description at 6 and even older who grew into adults with full and purposeful lives.
Recent developments are giving many nonspeaking people on the spectrum the tools to communicate effectively. What many share is how difficult and damaging it has been to go through life deeply misunderstood and underestimated. While we shouldn’t discount the challenges many autistic people face, experience has taught me never to say never.
Barry Prizant
Cranston, R.I.
The writer is a professor at the University of Rhode Island, the author of “Uniquely Human: A Different Way of Seeing Autism” and a co-host of “Uniquely Human: The Podcast.”
To the Editor:
I have an older brother with autism and twin 30-year-old sons, both with profound developmental disabilities. I have long been aware that the disability community suffers from having enabled its own environment of exclusion.
Inclusion means each voice is elevated so individuals can be supported collaboratively according to need. It is a basic aspiration for us all and a civil right. Unfortunately Robert F. Kennedy Jr. brazenly generalizes the experience of one group with his own limited version of predictive negative outcomes.
No people with disabilities should have to defend their legitimacy. We have made strides in recent years in building dignity, no matter how serious the challenges. What’s needed is more support for families to build whole lives for all. Period. Everything else is distraction.
Amy Brenner Mitz
Sugar Hill, N.H.
To the Editor:
I want to reach out to Emily May. I have a 48-year-old son who was almost exactly like her daughter at that age. I understand her weariness and despair at times. I hope my son’s story will help.
For my son, learning to talk took years, but he did learn. I remember my elation the first time he asked a “why” question. He was 13. He has had jobs, plays sports, loves music and is a great cook. He is also the kindest person I know.
Is this everyone’s story? No, but it describes many more people than she may believe right now. If I were to give her one piece of advice, it would be to reach out to other special needs families for support. We are a vibrant community, better able to understand her than most professionals, no matter how well meaning. We routinely share helpful tips and stories with one another. We care.
Stephanie Niedringhaus
Haddonfield, N.J.
To the Editor:
We recently took my 21-year-old nonverbal autistic son to the dentist for a teeth cleaning. The procedure requires sedation, but since we are unable to communicate with him to explain what lay ahead, we had to rely on his compliance. As he entered the office, there was expected agitation and a look of resigned betrayal.
Once the procedure was finished and we were safe at home, the look changed to begrudging forgiveness. I’d like to say this type of experience is a rare occurrence, but it’s just one of our “normal” days.
Decompressing afterward, I found the gift of this article. I have few hopes for my son, and many fears. I love him fiercely, but I am broken. I am unable to express what I feel, but your words, for a moment, broke down my own nonverbal barrier. Thank you.
Brian Pakkala
Kenmore, Wash.
