The NCSA has received a tremendous outpouring of support from around the country, with the overwhelming sentiment: “Thank God someone is finally talking about our issues!” We appreciate your votes of confidence in our pragmatic vision to address head-on our mounting crisis—together we will work to provide a strong voice for our disabled loved ones who cannot speak for, nor care for, themselves.
Below we feature just a handful of your many comments and stories. Thank you for your sharing and support.
Your organization gives me hope
I saw the term "prisoner of autism” posted by a mom in a comment on your Facebook page. That phrase is horrifying. How could a mom, ANY MOTHER, feel like that about her child's condition?
And yet, I know that feeling. I understand it. The only person I've ever been brave enough to voice those exact words to is my husband. For ten years, I have been a prisoner of SEVERE AUTISM. There, I said it! Or typed it...?
There isn't one area of my life that isn't completely ruled by my son's autism. He has the sort of autism that no one likes to talk about. The kind where a 9 year-old breaks the windshield out of the family vehicle over and over again. The kind of autism that means he doesn't sleep through the night more than a handful of times a year.
Despite years of every type of therapy we've been told would make a difference, were able to get him to, and managed to pay for, he's unable to speak or communicate in any meaningful way. He has never progressed past an 18-24 month level. His obsessions rule every part of his life, and increasingly, our lives. He takes as many as 20 baths a day. He wipes his face with anything until he rubs his skin completely off. Then, because it hurts, he rubs it even more.
The most heartbreaking part is that even though he's the most loving child you could ever imagine, he can be extremely violent. He's very large for his age. He already weighs about 140 pounds at the age of 10. He's stronger than you can imagine, and when he's raging, keeping him and ourselves safe is nearly impossible. We are all constantly covered in bruises from his pinches and bites, and each day I lose several handfuls of hair.
The very worst moments are after these times of rage, when he seems so sad and hopeless. He lays of the floor and sobs. These are some of the moments that I realize how powerless he is to win against the battle going on in his mind. How he is suffering the most as a prisoner to what we call AUTISM.
These are the moments when it's clear that my inability to get out of the house to buy groceries, safely transport him anywhere, meet friends, attend a family event, go to the bathroom, shower, eat a meal at the table, sleep in my bed, or even SLEEP, doesn't even compare to how captive my son is to his condition. I can at least communicate when I need to. I'm not compelled to rub the tops of my feet on the floor, with every step, until the tops of my feet are bloody. My incarceration is the equivalent of a luxury cruise compared to what he endures every day. And that is exactly what keeps me going. THAT'S what gives me the strength to get through the day. If he can face the day, then so can I. If he can smile, SO CAN I.
Knowing that NCSA is giving a voice to my family is so uplifting. We live a very different life from everyone else we know, even from other autism families. EVERY SINGLE minute and area of our lives is ruled by my son’s autism. Your organization gives me hope that families like ours won’t always have to feel so isolated and fearful of sharing our experiences and that we can work together to protect our loved ones who cannot protect or speak for themselves.
Finding the NCSA gives me hope that families like ours won’t always feel so isolated. Families like ours need to feel like there is support and hope. We’ve learned to keep quiet about our struggles because we simply can’t afford the time or energy to stand up for ourselves or our loved ones when we are attacked and criticized by many in the autism community. The NCSA gives a voice to our reality in a way I haven’t seen before. Thank you.
—Lolita Quinn. Mrs. Quinn lives in Southern Illinois. Three of her four children have special needs, one with a severe form of autism. She and her husband, a veteran and a police officer, have a small business designing, manufacturing, and selling safety alert products for people with autism.
The NCSA has heard the anguish of families dealing with severely disabled adults
I see NCSA as a welcome, highly needed advocacy group for the severely cognitively disabled - and long overdue. Certainly inclusion and the many efforts to expand the lives of cognitively disabled individuals should be lauded and encouraged. However, the aggressive romanticism of autism and the insistence that the severely autistic can work, live independently and participate exclusively in "the community" has left a large segment of this population out in the cold - without housing or appropriate or sufficient programming. . And the matter of violence is simply ignored - despite it being a very common characteristic of severe adult autistic many whom are very limited - non verbal, aggressive, self injurious, or plagued by mental illness or extreme behaviors. Traits which fail to respond to modern behavioral strategies or even medication. We are not talking the "Good Doctor" here. Its pure foolishness and naivete to argue that these individuals are being stripped of their "voice". They have no voice. The parents and caregivers are their voice - their only voice - and we will not be shut down. The NCSA has heard the anguish of families dealing with severely disabled adults. They may be a lone voice in the wilderness right now, but hopefully that will change.
—Ann Sanok, via Facebook
I’m very thankful for this new organization
I’d like for anyone speaking out against this wonderful organization to live a week in my shoes alongside my daughter, who has severe cognitive delays. The few assessments she’s able to get through indicate she is chronologically 19 yrs old, but has the mental capabilities of a toddler, if that. The people who seem to take joy in telling us how to live our lives seem to have loved ones who are much more successful at life and in school than my child will ever be. I’m not sure why they think they know better? I wouldn’t presume to tell them what is best for their lives. I also don’t appreciate the attitude that comes with this backlash. It’s always an exasperating tone, and often “better than thou”, and I have often felt bullied. So much so that I steer far, far away from one of the people mentioned in the article, who is sadly often part of the backlash in these conversations. She, and those who follow her, do a vast disservice to so many, when she could otherwise use her intelligence, energy, and resources to reach out and help so many more. Who truly need it. So I’m very thankful for this new organization. I’m praying my daughter and I reap many benefits from it, because it truly does take a village, and I’m thankful I’ve found people who understand us. If she could understand this, she’d probably be thankful too.
—Becky Brown, via Facebook
Thank you for existing, it gives me hope
I was so glad to hear about the NCSA. So many people don't understand what it's like having a 14 year-old son, still in diapers, who can't be left alone for fear of elopement or self-injury. He could never tell me where he wants to live. Anytime we go any place at all he constantly repeats "Go home" until we leave. What does "home" mean to him? Now it means living with Mom, since his dad passed away when he was three and a half.
I won't live forever, and choosing a home to transition to should happen while I'm still alive and able to help him, but we can't count on that. I could die suddenly and he would just be thrust wherever they could find a spot that would take him.
He is very high needs, very demanding. He speaks using verbal language but not conversationally. You can't ask him how he feels. You can't ask him does something hurt. You can't even ask him "Chocolate or Vanilla?" He won't answer and I try every day to this day. I did get one answer out of him once. I asked him what do you want? He said music.
Music is the only thing he loves, he doesn't watch a tablet or do puzzles or watch the same TV show over and over again. He just likes to hear music, and he likes to sing sometimes, though lately I've noticed it's been less and I ask him why? I get no answer.
To even pretend that all human beings are capable of self-determination was the most ridiculous thing I'd heard. My son can't determine what is best for him and I won't live forever, I just really hope I don't have to bury him young. His elopement behaviors are still a concern though he hasn't made a serious attempt in a long time.
I'm always on edge hoping it's quiet because he's still sleeping, despite the fact that we had to board up his windows because he was breaking them to keep him from crawling out. He’s a small 14.
Thank you for existing, seriously it gives me hope. So many single moms also have the problem of income, we can only work when the kids are at school, and most jobs aren't like that, sometimes even two parents struggle. There is so much room for improvement when it comes to helping people who have these special needs kids and the kids themselves.
—FW is a single mother of a boy with a severe form of autism
A voice to all the rest of us who have been marginalized and silenced
I’m autistic, my kids are autistic, and my granddaughter is severely autistic.
I support you 100%, and I’m glad you are forming and will finally provide a voice to all the rest of us who have been marginalized and silenced.
Yes, they proved your need to be here....and our family is sooo glad you are here. Keep up the good work. ❤️
—Faith Riverstone, via Facebook
An important step in raising awareness and putting a spotlight on these hidden struggles
The field of autism research and services has not adequately addressed or supported families like this. My team has been trying to launch a couple of small pilot studies about the challenges facing severely impaired youth and their families during transition. But it's hard to find funding to develop practical solutions for people living with autism now because it's not "basic research" (which is where the big $$ goes). And only 1% of ASD research $ looks at adult issues. As difficult as this family's struggles are now, they will be more difficult when this child weighs 161 lbs instead of 61 lbs. We need useful new knowledge to inform helpful services and policies across the spectrum and across the life course. Sharing stories like this is an important step in raising awareness and putting a spotlight on these hidden struggles. Families like this often mistakenly conclude they've failed when they experience this kind of struggle. The truth is we've all failed these families -- their personal problems are manifestations of institutional and societal failure... and we all need to do better.
—Paul Shattuck, Drexel University, via Facebook
So thankful that this side of autism is being shared
I am so thankful that this side of autism is being shared. So many people see the my daughter as a beautiful, laughing child (which she is, don't get me wrong). What they don't see is this same child attacking me, her mom. It is embarrassing when this happens in public. I have left many places in tears due to this pretty little 11 year beating the crap out of me.
— Shannon Jungerman, via Facebook
We desperately need a national voice for those with severe autism
My wife and I raised our grandson, who we call JJ, and who is nonverbal autistic with other significant cognitive delays. He is now 30 years old and needs 24-hour supervision and assistance. My wife is now 68 and I am 71 years old.
We have struggled to find any residential program that provides the care he needs. The training of staff is usually very minimal and they don't get paid enough to keep most staff long enough for anyone to develop any kind of a relationship with JJ. We have tried our best to remain involved in his programming and care needs, but at some of the places JJ has been, parent or guardian involvement seems to be foreign to them and they do not welcome the involvement.
JJ has also been a victim of the closing and reduction of opportunities provided by the sheltered workshops. He is now in what is basically an adult day care four days a week. The state touts the idea that all people with developmental disabilities should work, but of course we have been told that because of JJ's limited skills and behaviors he will never be eligible for any work program.
We have long been advocates for a campus setting for JJ which would provide tremendous advantages not only in terms of efficiency in providing services but also because a campus setting allows those living there to live with their peers and actually be a part of a community. We have seen that people like JJ living in group homes or their own apartments are rarely part of the community in any meaningful sense, but are in most cases painfully isolated and merely tolerated.
However here in Minnesota, options to create group settings for the severely disabled run into a brick wall since the ARC of Minnesota argues that any such settings are by definition “institutional.” Since when is every group program institutional? Such settings are fine for students, for those with enduring medical needs, and for the elderly, so why not for the severely disabled? Institutional means someone lives there against their will. In JJ's case he would be overjoyed to find a home that actually met his needs, where he is accepted, has friends and real opportunities.
We desperately need a national voice for those with severe autism, and we are greatly pleased with the formation of NCSA.
—Eugene Rossum. Mr. Rossum is a retired manufacturing manager who lives in Brandon, MN.
This is so necessary
Finally! This is so necessary. We can no longer lump Aspergers with autism and call it the same thing …
—Debbie Gaylord, via Facebook
Thank you for creating this National Council on Severe Autism. It has been long overdue.
I am a mother to three children with autism (twin teenage daughters who have severe autism) and without adequate support, the most simple of errands have become the most difficult to complete. Thank you for creating this National Council on Severe Autism...It has been long overdue and we greatly appreciate it!
—Jennifer Penhale, via Facebook
We support NCSA
Our family feels very much alone in our struggles to help our beautiful girl. School and doctors sometimes make this worse because they don’t get it. We support NCSA and hope it makes a difference.
— Veronica Colon-Rodriguez, via Facebook
Fills a HUGE need
This group/website fills a HUGE need, so of course, some people hate it. Which is part of why it's needed. Jill Escher, Amy Fisher Lutz, and cohorts -- BRAVA (and bravo to the dudes)!
—David Royko, via Facebook
Great need for the NCSA
Mom of child severely affect by Autism and can’t express enough for the great need for the NCSA!!!
—Tracey Chew-Bullock, via Facebook