There’s a group within the greater autism community that most people don’t see. They hide away, in closed Facebook groups, alienated from the one community where they should be able to find support and commonality.
They have been ostracized, ridiculed, and accused of being terrible parents. If they try and tell their stories, they are ganged up on by scores of hostile people that call themselves advocates.
Some might say they are silenced because to acknowledge their family’s “brand” of autism would undermine advocacy efforts aimed at presuming competence. I’ve not said that, but I know others who have.
This is a group that lives with “severe” or “extreme” challenges; aggression, self-injurious behavior, intensive behavioral challenges. Their lives are almost unmanageable. Their children (including adult children) require so much care, that these families struggle to make it through each day. I happened upon their group, which consists of almost 400 people. That may not seem like a huge number, but keep in mind that is just one group. There are likely many more out there.
They have been kind enough to give me permission to write about them; to use their words (anonymously), to allow people to understand their frustration and fear, to hear their pleas for help. They have also encouraged me to allow all comments through, to allow (respectful) dialogue. (And unlike some pages, I will be moderating for respectfulness.)
I’ve spent some time culling comments from group dialogues. They are as follows:
“I know this kills you inside…ripping your heart. It does for me with Holly. I feel so useless because I don’t know what’s wrong and I want/need to help her but I can’t. It kills me to know our children are in pain and suffering and there’s not a damn thing we can do! Xoxo.”
“This makes me want to cry…I almost killed myself and my son, then one day I got the call that he was going to a treatment facility in (anonymous city, state). That call saved my life! I fought for over a year…it wasn’t until a catastrophe happened that CMH finally opened their eyes to our situation. One of my BFFs did try to kill herself and her daughter. Please, anyone else reading this who is overwhelmed…keep fighting for help!! It is possible to get it, just not easy!”
“As if things around here wasn’t (sic) stressful enough with Stacey beating herself and pulling herself bald this week, we got a visit from CPS today. 1 of the neighbors accused us of abuse because of all the screaming she is doing. Of course CPS went to the school and looked at her talked to all the teachers and aides and no charges will be filed based on no findings. I told them come by any day of the week, she will still be Autism (sic) and I still won’t have beat her but can’t speak for her beating us. Done venting.”
“So strange…I just went into my not feeling mode. I care deeply, but my body feels like it does during Jeff’s rages. Just resigned and dissociated. I hate that we all go thru this. I hate that our kids must be suffering so deeply to respond this way. What did they ever do to deserve this? They are kids! It’s so unfair to all of us. Thank you for sharing. People just can’t imagine.”
“I am so sorry, I’ve been exactly there – with Jacob Prozac worked better than Zoloft and his aggressions and hyper-OCD have mitigated somewhat. I called my husband home many days & called 911 two or three times, only to hear them tell me there was nothing they can do…realizing there really is no help is so frightening. Having to hide from your child is a certain kind of horror most humans will never know or understand. Love to you.”
“We took Mike for a drive this evening, which is usually his favorite thing to do…30 minutes in he had a massive meltdown…head banging the car window and hitting us. I had to get in the backseat with him to keep him from breaking the window. Got home about 30 minutes and the headbanging continued…walls, cabinets…gave him his nighttime meds and he just finally calmed down. Too tired for words.”
“Why me? Why my daughter? I’m so tired. 😦 “
“Feeling guilty that I can’t give all that my other kids need from me. 😦 “
“I am sinking. I’m sinking and drowning in autism and I can’t breathe. I cannot shake this feeling of hopelessness. I pray constantly for a miracle, for Matthew to get better, for us to be able to be a normal family, as much as possible. And the darkness just envelopes me again. There has to be hope. Please let there be hope.”
And this last comment, by Adrienne Jones, who blogs at No Points for Style, is a response to what some advocates in the community have said about simply calling 911 if you think you are in danger:
“When they shout about JUST CALL 911 or GO TO THE ER, I know they have a fundamental misunderstanding about how those things work (and assume the caregivers didn’t do that, when in fact, usually they’ve done it multiple times.) Usually you’re back home with minimal (or no) follow-up somewhere between 4 hours and 3 days. No help, new bills, and less hope than ever. You call the cops, maybe they traumatized or (in Albuquerque) kill your kid. You put your kid in RTC, maybe they treat your kid badly, or even hurt them. I’m pretty active politically, working to get more services in NM, better training for cops, more programs in schools, and it’s like dragging a truck with your teeth. Nobody gives a shit. Our governor is caregiver of a disabled sister, and she still doesn’t get it. She has the money to pay for full-time care, so what the hell does she know about life in the trenches? She’s just trashing services in the name of fiscal responsibility and letting people die. It puts me in a blind rage.”
This post isn’t about blame. It’s not about shaming autistic people. It’s about being honest about how big this spectrum really is, and how severely affected some individuals and families are by autism. This is reality for these families. This is their daily struggle. If we keep ignoring them because we don’t like the words they use, or because we don’t want to think of autism as anything other than shiny and happy, then we are leaving these people to fall.
You would never ignore your child’s needs because you didn’t like they way they asked for something. Why would you ignore a huge group in the community that is screaming loud and clear about there not being appropriate short-term and long-term emergency services available to families?
These families, every one of them, have the same value, worth, and dignity as every autistic person. If the family is drowning, then so is their child. We need a community that welcomes these families, and reaches out to them.
But just like appropriate services, we don’t have that.
But their voices will still be heard. There will always be someone out there willing to amplify them in the hope that it will bring about change. Why not you?