Dear Extreme Autism Advocates,
I've been letting the words stew in my brain for awhile now. Most of the time, the stew gets thrown out because I deem it not worthy of my energy or time. People will have their opinions and thoughts, each like a storm that heaves a ship upon the ocean waves. Now, I think it's time I unleash this stew of words because people - GOOD, decent, loving people, many which I am proud to call "Friend" - are being hurt. Whether it's intentional or not, I cannot say. I personally know that the path of good intentions is often paved to hell.
At the risk of sounding condescending (or any one of those words that I am supposedly not to use in either tone, actions, or words if I wish to remain a good Aspie), I want people to put on their listening ears. For all intents and purposes of this blog post, we're not going to sling around words like "murder apologist" or "ableist". We're going to define "extreme autistic advocates" as meaning "a person who accuses a specific, targeted group of actions based on the actions committed by one person, and uses that knowledge in an attempt to invalidate their feelings and/or silence them." Gather near me, people, autistic and non-autistic alike. Like most posts, I'm going to take you to the left field of some nondescript baseball field, and, hopefully - between points A to H, back to B, and finally slide HOME! at C, my point will have been made. At the end of this post, our goal will be to fortify our walls three times thick with the ultimate aim of uniting our autism community (really, just one of many communities) so that we shall not fall and that no PERSON should be left without a safety harness.
Before we being our excursion to the baseball field, please put all your feelings of anger, hurt, and exclusion in the Safety Box. They'll remain in this box, safe, until our journey is complete, when you can retrieve them again (though, hopefully - with any luck - I'll have changed your mind). Though valid, they will have no use here. By typing this, I mean you're going to read with an open mind, with no prior judgments based on your past (i.e. "playing the victims card"), and no judgement made on other persons involved. The words simply are, as honest as I can make them, and with no shits given for whether or not it's upsetting other people. Perhaps, I should also mention that this post is full of triggers (or perhaps I should have done that earlier, oopsie /light sarcasm), but, for the sake of fortifying our autism community, let's set those aside, too. Speaking of judgement, we're all going to agree that murder is wrong, and that no one here supports murderers. We can have compassion (because to be compassionate simply means we're flesh and blood human) - yes even for a murder - without condoning or agreeing to the accused's actions. To make this even less sticky, we're only going to stick to murderers, because I think we can all agree that rapists, arsonists, mass murderers, serial killers, and other heinous related crimes are an entire conversation all together.
I don't think I need to go back and detail the history of why and how ASAN was formed. Between 2007 and 2009, in between a haze of completing part time graduate studies, working full time, and dealing with my dad's sudden death, ASAN came to be. I was a proud Aspie supporter, and carried that battle flag fully flown. At the time of Autism Speaks and its controversies, the idea of an organization created and ran by autistics to support other adult autistic advocates ("nothing about us without us") was a welcomed distraction from my life. I was a newbie, having formally been diagnosed a few months shy of moving up to Maryland in 2005 for beginning my graduate studies, and had yet to even get scuff marks on my metaphorical Aspie shoes. I grew up feeling very much alienated and different from my peers. To say I cut my teeth on the words of bullies and a dysfunctional family would have been an understatement. As a child, I was punished numerous times for what is now described as an autistic meltdown, and have been fired from more jobs than I wish to count. I knew I had worth as an autistic person, as an Aspie, and that should never be comprised (okay, fine, it has been, but that's life, as I've come to learn). Up until last year, I was very much proud of ASAN and of its president, Ari Ne'emam. Yet, with the tragic attempted suicide/murder of Kelli Stapleton and her daughter, Issy, I have had to take a huge step back and seriously re-consider my identity as an autistic advocate. Could I still be a successful autistic advocate without having to support all that anger and hatred? Am I a "bad Aspie" for supporting parents of autistic kids? For even agreeing that, yes, autism can be hard, that it's not always unicorns and rainbows? Would that lower my value, my worth, as a person? What does exactly "justice" mean, let alone look like? My mom has always raised me to consider all sides of the argument, and that neither side always represents truth because Truth stands by itself and the other parties involved are only perspectives of it.
My father was an alcoholic and drug addict to such a point that he fried his brain on drugs, became a paranoid schizophrenic, and tried to kill me twice. I don't think he meant to do with it malice nor on purpose - it's rather a sad, tragic demise of a great man who was the only person I couldn't beat at Scrabble and gave me my equal love of books and blue grass music. Rather, it was a side effect of the nasty business pertaining to drug addiction. I know my dad loved my brother and I to the very depth of his being, and that he was sick, and not in his right frame of mind when these acts were committed. I saw my mom's struggles working full time while attending college, dealing with my varying mental health and health issues in addition to her own, and then dealing with my dad. I know without being a parent myself that parenting is nothing to mess around with, and - autism aside - it's a very demanding and taxing job, even calculating for the impenetrable love that a parent usually has for their child. I know that my mom would take a bullet for me in a minute, but that she's also human. My meltdowns and anxiety attacks still cause her an unnerving amount of pain. My dad's suicide attempts were talked in hushed whispers (one of them was on my 12th or 13th birthday), and I've lost count of my own attempts (the one last year, I was within 30 minutes of dying - it's why I now live with my mom in Florida and is half of the reason why I don't work). I've always known that justice never gets fully served, and that justice is just as vague as a term as "normal" in that its definition can vary person by person, even - shockingly - by jurisdiction, as seen in the fight for equality in gay marriages. The very institute that's supposed to uphold the law of the land and the Constitution, can and does deny protection to those very people its supposed to protect. "Mental Health" is still a foreign concept when it comes to law, because of the many twists and turns and this and that's which is the natural state of law.
I began my Autism growth and maturity in broadening my autism horizon. I colored it in with the views of parents - who have children with varying levels of needs and issues - and I listened. I read blogs from both sides, and quickly found that I had to shut out the angry sounds of "murder apologist" and all the nasty bits I won't hash out here, from some adult advocates. I paused my typing fingers, and I read and I listened. I learned more things about myself from the parents of autistic children than I have in my years flying my Aspie War Banner. I scuffed my autism shoes. I learned the following: Yes, it's okay to say that autism is hard. It doesn't mean you hate autistics or that you hate yourself. Some people are simply assholes, and it doesn't matter if you have a disability or not. Autism parents are very cool people, who are very funny, and - if anything is to be gleaned from their FB posts, they drink an ungodly amount of alcohol and coffee (sarcasm on the alcohol bit). I see in them a reflection of my mom: tough people with thick skins with awesome sauce sarcastic skills and a level of humor that eases some of the hard, the miles of waiting lists, the unlimited red tape, the headache which can be the IEP, the horror story which is the healthy insurance coverage and crumbling bureaucracy of the mental health systems that are yearly having their budgets cut and beds reduced, and the unflappable love that they have for their children and family. They take the hits and keep on running. They mean what they say, without a hidden agenda. When their child is hurt, they cry ten times the amount of tears until they can cry no more. Crying is not a crime or a shameful act that means that a parent hates their child. It simply means that the parent is human, and, if they could, they'd take away your child's struggles and their pain in a heart beat. Not because their child is autistic or whatever, but because they are a parent and its a natural instinct to want to protect their children.
When parents say they support a friend who couldn't take anymore (though wrong in her actions), then stand there while other people (ones who supposedly don't want others to speak for them, yet have no trouble speaking for others, even without consent and/or possible knowledge) stone them for their compassion, I cannot be silenced - especially when the only advice these supposed advocates - who have an appalling lack of psychiatry, mental health, psychology, case management, and all the knowledge isms that should have been researched in-depth beforehand - have to offer is to give up now and call CPS before they harm their own children. To speak of doing no harm, and then suggesting parents give up their parental rights because, gee, autism parents are apparently ticking murderess time bombs that are set to explode at any given second (/light sarcasm). The actions of one person - whether intended or not - does not imply that ALL people will act in the same manner. To accuse a parent of becoming a potential murder based on the actions of a few, is like calling your mailman a thief because that one mailman years ago stole people's mail. I am upset, too, because voices of discussion - not of debate, but people's own thoughts and opinions - are deleted in attempt to silence them. If the time to speak of a lack of services and funding is not now, then when? You don't like your hands, your voice being silenced. Why do you try to silence parents when they reach out for help? Is it perhaps uncomfortable, reminding you too much of your own childhood, or that, just perhaps, if the world doesn't all singularly view autism as sparkly unicorns and rainbows, that you have failed in your mission of autism awareness? That others might look at you as something less, or that it'll bring you back to that one time when you were punished for simply being? If so, I am truly, sincerely sorry. It is hard to work though that anger and fear. To stop seeing bogeymen behind every closed door, every therapy as an instrument of torture (yes, some are and the history is deep, but, like myself, they have evolved), every "NT" as a person who is trying to erase your identity and/or every autism parent as a monkey trainer. It isn't always like that: life can suck, some people view disabled people as less than, and if you haven't changed their minds as of yet, I am sorry to type that those walls may never be broken down. Life, too, is a spectrum - from the common sense of the intelligent all the way to the ignorant assholes who choose to remain so for whatever reason. I know some of your emotional wounds may never heal, but, by the love of whomever, PLEASE stop picking at the scab! No matter how it itches or grates on your nerves, find your peace so that it may find a way to heal. Healing goes further than hatred. One of the lessons my dad taught me is that anger is wasted energy. If you're all ready short on spoons, I suggest not wasting it on anger, but that's my own two cents plus inflation.
When I hear of calls of justice, I wonder what Issy would have wanted. Where is her voice? Does her father agree to this advocacy on behalf of his daughter? I see hashtags to step into her shoes, but having been a fairly angry child myself with a streak of violence (oh, we laugh now about my mom threatening to sell our POS used Honda to send me to military school, but several years have passed to allow those wounds to heal), I know that I cannot speak for Issy. Having been twice injured by my dad's drug-related incidents, I couldn't even tell you what Issy would want. I'm one Aspie, one person. My experiences are unique onto me, and me only. For all I know, your dad could very well have also chased you out of the house with a hammer and you got sick at the thought of ever eating an egg salad sandwich again, but each of our feelings on said events would still be different. Our minds, thank whomever, are not hooked up to one giant Borg-like computer where we all share the same feelings and thoughts. I cringe every time that I hear the suggestion that autism parents are incompetent because they're not autistic, and thus should follow to the letter every single adult advocates' advice on raising autistic children (even if they themselves don't have children), that the advocates themselves are right and just in their actions. I would like to take the time to remind everyone that no one - even the medical experts - are the single sole source on how to raise a child, NT or otherwise. There's more opinions on that than there are products in any given grocery store. The person who is most likely to know their own child IS the parent. When I offer up advice, I caution them that I am just one Aspie, and each Aspie is unique. What works for me may not work for your child (especially given that I'm an adult without children), and you, as the parent of said child, should play the role of a detective to figure out what works and what doesn't. Period.
Not everyone is familiar with the story of Kelli and Issy. Every time I mention the topic to my mom, I have to remind her - who has me, a daughter with autism or however you wish to word it - who they are, of their story. I even know of other (less extreme but equally passionate in their desire for autism understanding) adult advocates who, for whatever reason, really don't care. Yet, for some reason, in the name of supposed justice, some adult advocates are refusing to let go of the fat piece of juicy meat clenched in between their teeth. Exactly, why is that? Some would say that this very controversy - if, it is, in fact, a controversy - has divided and polarized the autism community (I personally thought that Andrew Wakefield did a fine job of that, and this is nothing new). Over the past year, my dad's choices and even my own actions have been brought sharply to the forefront of my brain and re-examined in a new light. I have been able to further heal those wounds, to allow myself to say "I am human. I made a mistake. Where do I go from here, and how do I prevent myself from stretching myself so far that impulsively committing suicide in the future?". Healing is possible.
I know that I write lengthy novels as opposed to pithy posts. To recap:
1.) Autism parents - whether autistic themselves or not - have no desire to harm their children, nor plot their future murders. A parent's job is never done, so why waste the precious downtime that they may or may not have on such a messy thing as murder? To commit such a horrible act takes equally horrible, unimaginable amounts of pain and despair, and, unless you've been in that situation where all hope and options are gone, is impossible to understand.
2.) Mental illness and suicide are real. Some parents are mentally ill, but not all. Mental illness does not always equate to suicide and attempted murders on their children's lives. We each have our own breaking posts and limits to the amount of stress we can carry, parent or not. Thanks to this economy, mental health services are being cut while the demand for services goes up and the number of psychiatric beds are being reduced. Suicidal patients are being turned away due to a lack of beds in mental health facilities (sorry, I don't have the exact article to support my argument, but it's out there on the Internets).
3.) Please try to remember to speak only for yourself, and not others.
4.) Your definition of "justice" may not be the same as another person's. Remember, there's always your version of the truth, the other person's view of the truth, and the Truth.
5.) Because you were hurt and/or abused, does not mean other parents will automatically hurt their autistic child. Yes, people with disabilities are vulnerable, but this doesn't mean there's a boogeyman behind every door. Autism parents are not always the enemy.
6.) Because of a choice that one parent made in choosing to attempt to kill herself and her child does not mean that a.) All parents will suddenly jump on the band wagon and try to copy said person's actions, and b.) That said person didn't love or hate her daughter. In fact, it applies the exact opposite: How much a parent would love a child to make an unthinkable, horrific choice to take her own child's life so that said child didn't suffer the loss of a parent or their care once said parent was gone. BTW, that wasn't a multiple choice question.
7.) There are many, many gray areas that even NT's have difficulties in navigating. Compassion isn't a crime nor does it imply that you agree with said, it simply means that you care, that you are human. You don't know how you will react in a situation until you are actually in that situation.
8.) You really need to listen to autism parents and study up on subjects before speaking about them. It's another thing my mom taught me; if you want to argue something and expect to do so successfully, then you better know what you're arguing before you begin.
9.) You are the only autism expert on YOU. Everything else is advice, an opinion, a thought. A parent is the expert on their child, not the adult advocate.
10.) Even if they do the unthinkable or something you don't agree with, the autism community still supports one another. They don't cause the pain to become worse or the wound to deepen via misguided judgement and opinions. They don't tear down walls and divide. They build one another up, so that if there is an emergency, the house still stands.
11.) Assume makes an ass out of you and me. Communication is a two-way street. By all means, make hypothesizes or guesses; please don't automatically assume. What works for you, may not work for someone else. Therapies have evolved, and even bits and pieces of a controversial therapy might work best for someone. My mom taught me responsibility of my actions and words from day one (yes, even when I couldn't speak). It was a system of rewards for good actions (doing a list of assigned chores equaled so much allowance) and consistent consequences for "bad" behavior (throwing a fit in class would result in writing sentences; my mom knew repetition was one of the ways I learned). People with disabilities are vulnerable. It doesn't mean that they're ALL abused, tortured, and/or killed at every turn. Sometimes, it happens and sometimes justice doesn't happen. Life is shitty like that.
12.) Words and generalizations can hurt. Anger is wasted energy. Support people. Build them up, don't tear them down.
13.) One person with autism is one person with autism. Autism is a spectrum. Respect its variety of tastes, sounds, and being.
I am a proud Aspie who supports autism parents. My aim of this post is not to sling adult advocates across the stone of Damnation while casting autism parents on a pedestal, for all to see. No, I merely seek to open their eyes to the hurt that some adult advocates are inadvertently - intentional or not - causing within the autism community. Compassion isn't a dirty word. The autism community - especially autism parents and caregivers of autistic persons - need support more now than ever. Fredrick Douglas once said "It is easier to build strong children than to repair broken men". The same applies here: lay down your battle armor and let the wounds that need mended to heal. It is easier to support autism parents than to repair them when they are broken, when their hope seems to be lost, and they're hanging on by a single thread, exhausted, all options seemingly ended. To build someone up is to support them in whatever they may feel, even if it makes us feel squirmy and uncomfortable; to end their shame of their own feelings, of the need to hide lest they be deemed unsuitable parents, and to not cast judgement nor guilt. Most people who are depressed and/or feeling suicidal simply need a person to listen, to know that they matter, that this too shall pass, even if all hope has seemingly vanished. Give them a flashlight, a beacon of hope. That is how you support a person.
In conclusion, no one wins. Kelli is in prison - where she will likely not get the mental health support that she needs. Her children - yes, even Issy - have lost their mom. A family was torn apart. A husband lost the support of his wife, and vice versa. Kelli's friends are grieving - even more so by the stones thrown by some adult advocates. Caregivers have not been given more support and/or funding. Adult advocates continue on with their battle cry, having gained very little ground, and ignoring the other children - autistic and otherwise - that have been since killed by their caregivers. It's a horrific, sad story that has occurred. Knowing the verdict, where do we go from here? What can we do to fortify this community, to build one another up? What can I, as a moderator, do to help build a bridge to cross this gap? Is there some happy middle that we can all agree upon? Let me know your thoughts in the comments.
As always, thank you for reading and guinea pig out!