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.
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.
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.
This is my blog page. It is a free page hosted by wordpress.com. 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!
But….but….what if I like you BECAUSE you’re a giant poopy face? 🙂
Great post. You bring up really clear points.
Fantastic! It is like you got into my head and said all of the things I think. Love this post! 🙂
I’m glad you’re writing. I have typically developing children, but follow autism blogs out of scientific interest in the syndrome and social interest in the community and disability and accommodation. I’ve also followed the literature on suicide extensively (again, a scientific interest).
As someone trained in brain science, I see all neuroatypicalities as being a result of brain function. So, we can treat, accommodate, and modify, but I’ve found little evidence that shame/blame plays a significant role in altering behavior (maybe, in narrow circumstances it can be a part of behavioral/cognitive therapy). So, I’ve been troubled that the understanding that “all behavior is communication” not being applied to those who are depressed and suicidal as well. If the appropriate response to a child who is aggressive and hitting you is to figure out why (to help and to stop the damaging parts of the behavior), why wouldn’t the same attitude be the most productive one for another behavior? We want to stop the murder/suicides. Screaming murderer is no more likely to stop them than screaming names at an autistic child who is hitting someone. We should be able to say that without people thinking we are excusing murder.
I’m glad to see someone stepping into this fray, mostly because I think we might get better outcomes if all points of view are vigorously debated, and because, suicidal people need help, not blame.
Thank you for putting into words some of the things I have a hard time even talking about. It is well written a I enjoy reading your blog.
Flannery, Thank you for these thoughtful, sensitive comments. All true, and graciously written.
Yes, yes and yes. Very well written.
Yeah, I find that murder apologist one kind of puzzling, too. I’ve been called that even though nowhere in anything I’ve ever said or written or expressed or even thought has been anything remotely like “murder is acceptable.” I try to understand where those folks are coming from when they say things like that and all I can come up with is that they’re feeling a lot of pain and anger and that blinds them to the truth about things. I try to give them a pass because I know how emotional this all is, after Kelli I was in so much pain for so long I, too, was unable to look at things rationally. But that pain fades with time and that’s when it’s time to try to have a rational discussion.
That said, what I think is really disturbing is the chick who threatened to call CPS on any person she saw in her FB feed who expressed any compassion for Angie Robinson whatsoever (she’s the same person who called me a murder apologists, by the way). That kind of instability is dangerous and scary and it concerns me that anybody like that even has an audience of like minded people, despite how small that audience is. Methinks people who are that emotionally unstable should seek help before they do something desperate.
It’s amazing if you dare to show some compassion to a mother who went so beserk she had to murder her autistic child that you are immediately consider a murder apologist. What does that say about the myopic, disconnected moron that would say such a thing? They haven’t even looked through what the person is expressing, which is simply sadness over the fact a parent would be so desperate, so depressed, so alone, so out of hope, that the only hope left that they saw was to end life. The arrogant know nothings who make drive by comments about a life they know little about should find the nearest wall and run into it.
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I, an autistic adult who understand the realities of depression and suicide, was often being accused of being a murder apologist by other autistic adults. For awhile there, I thought I was in the wrong community. I’ve since stopped posting to any pages when filicide/suicides were brought up. I had to stop for the sake of my own sanity. I don’t get it – are we not to stand together, or otherwise risk the entire house crumbling down upon us? My theory is it’s a black and white thinking that’s common within Aspies, but then I started thinking (shame on me!) that if Aspies are as bright as they claim, able to think for themselves, and are capable of emotional and intellectual growth, then wouldn’t they eventually see the folly in their arguments? It’s easier to remain with one’s own belief system – despite all evidence to the contrary – than it is to change your own core believe system (some scientists theorize that it may actually cause people mental pain or anguish), which explains most opinions on politics, religion, and the whole murder apologist thing. Not excusing their behavior – I really wish they would learn before they do any unintended/intentional harm. If I might add – without sounding anything ish – that I feel really grateful that my mom forced me to think outside of my own literal thinking, to think for myself, and how to do all those little social curve ball things, like transition my thoughts and tact (my mom is very outspoken herself, so learning tact was way fun – I have a list of things I’m allowed to get away with, and a list of things that I’m not allowed to get away with). I am by no means saying I’m perfect nor that it was easy (my mom read up on psychology and I was a guinea pig for many years until she found what worked and what didn’t) – but, seriously, there’s a fine line between oppression and out-right ignorance, if that make sense. You cannot first explain the chicken without the egg, and vice versa.
All that being said, I’ve enjoyed reading this post and the previous one.
Wow, amazing story. Thank you for sharing and reading!
Reblogged this on The Daily Advocate By Painspeaks.
Item cucious about the fact that you said you tried a GFCF diet – how long did you give this diet a chance? I read that it could take up to a year or longer to have an affect,and could even make things worse before getting better. Can you elaborate on you, experience.