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The Hidden Autism Community Follow-Up

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The last post I wrote about The Hidden Autism Community really resonated with a lot of people, judging by the comments, emails, Facebook messages, and Twitterings I received. I’m glad that it helped people to feel less alone with the challenges they live with every day, and I’m very glad to have been able to steer many people toward a supportive group of parents—a lifeline for them.

I’m writing a wrap-up for the new readers to explain who I am, and to respond to some of the mutterings I’ve heard around town. There were a lot of great comments on the post, some with very strong words and feelings, others with varying advice ranging from diet to cannabis, and some were just words of understanding.

First, I want to thank the parents from the group I mentioned, who were brave enough to allow me to use their private comments for the benefit of the greater “community.” That group provides a place for people to bare all; the raw and painful emotions they’re feeling at a given moment, their greatest fears about the future, and their own private pain. Sometimes I just sit and watch the group as someone pours their soul out onto the computer screen, and others come along and lift them up with their kind words, urging them to not give up, to keep fighting for themselves and their child.

It’s easier for me if I break things down into categories, since there are a few things I want to talk about:


I’m not a personal believer in any autism diet. We tried GF/CF when Connor was much younger, but there was no change at all with his behavior. That said, there are many children with gluten and/or dairy sensitivity or allergies. If dietary changes work for your child, and you see positive benefits, then go for it! It’s none of my business what diet you follow in your house. DO NO HARM, that’s all I care about.


I believe that if someone’s quality of life is being affected in a negative way, and there is medication that can help improve it, then you should try. But I understand that it’s a difficult decision to make. I remember very clearly the feeling of not wanting to put all these chemicals into my little boy’s body. But we came to a point where there was no denying that his daily life, OUR daily lives, were unmanageable. Medication has improved things and made all of our lives so much better. But you have to make your own choices for your own family, and I don’t get to judge you for it. Do what’s right for you, do it by working closely with a doctor, and do no harm.

The Autism Cure

Le sigh. I am doubtful that a cure will be found. I believe that autism occurs at the genetic level. I believe in science and reason. So no, I don’t actively advocate for a cure. That being said, do I wish there was a cure in the hypothetical sense? Sure. While many thrive and celebrate their autism, there are many and more that do not. I believe that people should have choices about their life. While one person may not choose a cure, another might jump at the chance. If there was a magic cure pill, hypothetically, would I want it for my son? Yes. I would still have the same funny, quirky child, but he would (hypothetically) not suffer with anxiety. He would not be so easily confused in social situations. He would have an easier time making friends. But he would still be the same person. But this is a hypothetical, and it really doesn’t serve me to spend time considering it. If you advocate for cure, well, that’s your choice. I don’t walk in your shoes. If our autism looked like someone else’s autism, an autism with more severe challenges, I might think differently about this topic. But it doesn’t, and I don’t get to judge you when I don’t know your life. And neither should anybody else.


Jenny McCarthy

No. Just…no.


When you say that you “hate” autism, I understand you. I have been there. Over time, I have learned that my language offends other people. Does that mean that there aren’t days when I feel like I “hate” autism – its effects on my child, the way he’s misunderstood, the pain he feels? Of course not. And I don’t believe in censoring people’s feelings and arguing over semantics. When you say you hate autism, I understand that you do NOT mean that you want to exterminate all autistic people everywhere. I understand that you don’t judge someone for being autistic and shun them. I understand that you are not saying you hate an entire group of people. I understand you to mean that you hate the struggles your child must face in their life and that, more than anything, your heart breaks for your child when they can’t communicate, or understand, or participate. You hurt for your child. I get it. I’m not going to judge you for how you express that pain. Doing so would put a wall between us, rather than drawing us together. All I ask is that you don’t say it in front of your child. Ever. Because a child might hear something different when you say you “hate” autism. They might hear that you hate them. So just be mindful. Do no harm.

Medical Marijuana

I’m very interested to see where the research and development goes in regard to medical-grade marijuana. I’ve seen some studies that show significant benefits for many health conditions. BUT, I’m not a scientist. You shouldn’t take my advice about things like this. You should talk to a doctor. Or several doctors. And since I live in Texas, and marijuana in any form is not legal here, I cannot make a statement of support for medical marijuana. Or maybe I should say “will not.” I’ve never been a fan of jumpsuits.

The “Murder Apologist” Label

First, the post I wrote on Wednesday made no mention of any murders. It wasn’t about murder. It was about families supporting each other when they’ve found no help from professionals or people in the community. No murder was mentioned, alluded to, discussed, debated, or reported. In the past, I have written about Kelli Stapleton. The reason I wrote about her is because I personally knew her. I was emotionally invested in her finding help for her daughter and family. I don’t know why her daughter was/is aggressive. Neither do you. You and I, we aren’t doctors. Being autistic is not the same as knowing what makes another person do what they do. You can speculate about it, but in the end, it’s only speculation. Because you’re not a doctor. Or a mental health professional. Or even a social worker. (If you ARE a doctor or mental health professional and you’re reading this, then I know you won’t make any speculations because you don’t know her or the family and it would be unprofessional for you to make those kinds of speculations.)

The reason I have written about Kelli is because I know through my own work in social services, as well as my own research as a member of the autism community, that there are many families struggling with aggression. For varying reasons. But having an aggressive child isn’t a reason to commit filicide. There are a lot of families that live with aggression that don’t commit filicide. An interesting study would be one that specifically examined cases in the autism community to determine whether the emotional and physical effects of aggression and sleep deprivation exacerbate an underlying mental health issue, causing someone to make that horrible, fatal choice. If a study was done and it showed a correlation between aggression in the family and a deteriorated mental state, then it would allow people to develop a screening tool to help identify the most at-risk families.


It would also be interesting to study whether the rates of filicide are higher in the autism community than other disability communities. I don’t hear about this in the Down Syndrome community. Nor do I hear about it in the ADHD community. It’s also not common in the CP community or in the Spina Bifida community (I’m sick to death of the word “community”). If it is happening more frequently within the autism community, then what can we do to change things?”

I think it’s more than a little odd that someone would refer to analysis and critical thinking aimed at preventing more tragedy as being a murder apologist. What would motivate someone to cast parents as murder apologists, just because they want to understand what’s happening to drive people to commit unspeakable acts? I suppose if they admitted that we were vested in preventing these terrible tragedies, then there wouldn’t be anyone to blame? Maybe? There wouldn’t be anyone to rail against? Maybe it’s a case of needing to create an oppressor in order to maintain a position of being oppressed?

If so, it’s a shame. There are real oppressors out there: politicians, school boards, lawmakers, insurance companies.

But for clarity, let me state: you should not murder your child. You should not kill yourself. You should not kill anybody. It’s wrong. It’s bad. It’s not up to you to choose if someone else lives or dies. Don’t do it. It’s better to have your child taken away and placed in a horrible group home than it is to kill them.

But really what I want to say is, please reach out to someone you can talk to if you’re drowning. We don’t want you, or your child, to go under.



And lastly…


This is my blog page. It is a free page hosted by I don’t pay for a domain name or host. There is no advertising anywhere on this page. I write this blog because I like to write. Sometimes I write for fun, because there are a lot of funny and weird things in my head. Other times I write because I have to. There may be something bothering me, something I see in the community…like families being marginalized because the autism living in their homes is unimaginable. Either way, I don’t get paid to write this. It would be awesome if I did because then I wouldn’t need to go to a full-time job every day. But I don’t. I don’t make a dime off of this blog. In the four years I’ve been writing, I’ve received two free books (to review) and one free iPad case (to review). That’s it.


So if you ever find yourself not liking something I write, or maybe you didn’t like my cake story or the way I wrote about poor, dear Gwyneth, remember: you can go start your OWN site! It’s not hard. If you need help, you can email me and I will even help you do it. Otherwise, if you see something you don’t like, do me a favor…just say to yourself, self, she is a giant poopy-face and I don’t like her…so I will just click this little button over here and MOVE ON TO ANOTHER SITE.


This internet, it’s really a magical little box of glittery goodness!


The Hidden Autism Community

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The Hidden Autism Community

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?



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