Wednesday, September 25, 2013

The cost of indistinguishability is unreasonable.

Comments are turned off on this. If I want to hear from you, you know how to contact me anyway.

With apologies/thanks to Beth of Love Explosions for the perfect title.

All below the cut because it's a) long and b) probably going to be triggery for things like suicidality and fake friends and emotional abuse. I already know this is a hard write & I don't know that I'll be able to go back through and ID the triggers.

But the cost of indistinguishability is unreasonable, as my past few weeks have kind of proven.

Friday, September 20, 2013

Indistinguishable from peers means: you don't have autism related problems

If you are declared indistinguishable from peers, which, as you may recall, is basically an educational diagnosis, people mistake this for not being Autistic any more. It is presented as such so of course the adults around the "indistinguishable" child act like this is the case, yes?

There are some problems with this. The one I'm talking about today is very practical: what ends up happening when the child inevitably has problems.

An Autistic child is vulnerable to a lot of problems-even an academically at grade level Autistic child. Perhaps especially an academically at grade level Autistic child. We are targeted for bullying by both students and teachers--we are not socially indistinguishable, just academically. We have high rates of anxiety and depression. We, like all people, get frustrated when we are misunderstood or misunderstanding. We have executive functioning difficulties that lead to problems with homework. Even if we are on grade level, we still have difficulties that the language of "indistinguishable from peers" ignores.

So, it's K's overshare time again. I was academically indistinguishable from peers. I have been to a number of psychologists and other people who think they know brains since childhood, because the issues I was having could not possibly be autism! They were everything but autism! Let's see if I can get their NOT AUTISM hypothesis in chronological order:

-I was emotionally immature and bored
-I wanted attention
-I wanted less attention
-"maybe she's still autistic" (that one got fired)
-I wasn't adjusting to my youngest sibling
-I was struggling with my mom & last name donor's divorce
-I was having a personality conflict with my teacher (all of them?)
-I was having a personality conflict with my last name donor's wife (technically true. But it was my fault because I was the child)
-I wasn't as smart as we thought I was
-I was twice as smart as we thought I was
-I wasn't doing homework as a way of seizing control
-I wasn't doing homework because I wanted the attention not getting homework gets
-I wasn't doing homework because of a fear of failing at it
-I was refusing to get along with stepparents and parents because of deep seated resentment of...they were never quite clear
-I was oppositional defiant
-I had ADHD
-I liked the attention being bullied got

And the constant refrain of "the common denominator in all of these problems is you." Constant refrain. The guy who billed himself as a problem solving expert. The guy who said I was too social to have ever been autistic because I had a friend. The guy who I never looked at ever but his name was Mike. All the parental units who were local to me.

The common denominator in all these problems is you.

Turns out adults who were indistinguishable as children have a really high rate of depression and suicide attempts. We tend to run pretty suicidal as children, too. It's logical, isn't it? If the common denominator is us, if we have issues related to a disability that we no longer have, isn't the way to end the problems to take out the common denominator? Everything that goes wrong is a function of bad choices we are making, everyone has a hypothesis on them, but we cannot make them stop because our neurology does not work that way. It is a choice that makes sense and a choice that would make it all just stop.

And that doesn't go away when you turn 18, or when they say "ha ha my bad, autism is lifelong and indistinguishability doesn't mean what everybody thinks it means." Those years of being the least common denominator and of all of those hypotheses being applied to you? They stick. Forever.

The 'residual deficits' that were referred to in Lovaas's 1987 paper are way more life-impacting than anyone wants to believe. You can't sell "we might be able to get your kid educationally mainstreamed, and that kid might end up there anyway, but said kid will still have autistic traits because they are still autistic" the way you can sell "indistinguishability" and just not mentioning it what it actually means. And damn the long term effects. It's not like autistic folks are actually people, but that's another post.

Monday, September 16, 2013

It's too soon.

It's too soon.

It's always too soon, but it's even more too soon than usual. Another Autistic child was murdered by his mother. So was his sister, neurology unknown.

It's too soon.

We were still reeling from Issy, is pain from Alex, have never-healing wounds from Daniel, from George, from Calista, from Katie, from hundreds of others. And now Jaelen and Faith are added to the list too.

It's too soon. It's always too soon.

And we are hurting. Many of us cannot stop crying, or are going to have to shut ourselves down to do what needs doing (things always need doing. Time doesn't stop just because the world crashes down again). You can't call in "someone killed another kid for being like me" to work. Not even if disclosing to your employer is safe.

It's too soon, but shit needs doing, so we have to shut ourselves off & do every day life.

Before we even knew Jaelen's name people were justifying his murder, saying how hard it is for parents. Always always always demanding we think about the parents. Did they think about Jaelen? Did they think about Issy? Did they think about Torrance? Did they think about Leosha? Did they think about Tracy? Did they think about Chrstopher? All signs point to no.

It's too soon. I can't think about the parents. I will never be able to understand what they did, why they did it. Not ever. I am mourning all the people killed for existing while disabled. My heart is full and my eyes are leaking for the killed, not for the killers.

It's always too soon. We aren't done mourning the last victim. We aren't done with necessary activism for the last few victims. There's always another disabled person whose memory needs honored-often lost at the hands of someone who should hold them dear. But the job of mourning? It falls to our community. And we do it. And we fight for the living, so there isn't another name, another story, added to the saddest part of our history.

But there will be more. And it will always be too soon.

Friday, September 13, 2013

Indistinguishable From Peers-an introduction

This is in theory the first post of a series that will explore "optimal outcome" of autistic folks subjected to behavioral interventions. Much of the language around the subject revolves around children, and a lot of what I am saying will be about children as well. When I say children, I do in fact mean young people. If I talk about Autistics, that's all of us. 'Children' refers to young folks, in this case often preschool and elementary aged.

The stated goal/implied promise of many behavioral programs "for autism", based on UCLA's Young Autism program of the 80s, is "indistinguishabilitly from peers". What this implies, though cannot say flat out, is that the subject of the interventions will be NT. Well, not really be NT. But they will look NT.

Except, not really. No promises are made as to neurotypicality if one looks at the definitions used to make these claims. The definition used in the Young Autism Project? Placement in a typical kindergarten class and being promoted yearly. More recent literature has used the definition of being placed in regular education and having at least one non disabled friend. How many Autistic folks do you know who meet this definition? And yet how many of us are so not like our peers in most other ways?

Being declared indistinguishable from peers does not do any favors to the child, except maybe ending the hours and hours of discrete trial training. Being academically "on track" does not magically confer socialization or executive function abilities. It does not mean that someone is not recognizable, sometimes immediately, as Autistic according to DSM criteria. All it means is that the student does book learnin' at the same level as people  born in the same year. No more, no less.

This misunderstanding (all the weasel words!) does Autistic students--and their families--a huge disservice. The term implies that students should need no services, that they're normal now. But life is not just school, and school is not just books and tests. Discrete trial training does not and cannot measure things like executive function or ability to cope and thrive in the unstructured environment of the playground or sensory regulation. Yet these kids are indistinguishable from peers! They're normal! No services!

Another issue is the behavioral and choice perspective this all takes. You're declared indistinguishable from peers, so if you are struggling it's your own fault. You've been officially declared indistinguishable, so something you are choosing to do is enticing the bullies. You're too academically capable to need help with anything else. Amy and all traits of autissm are due to moral failures and choosing to act different once you've been declared indistinguishable. Lovaas said you have no right to act bizarrely (this is one of the things that stuck with me from my reading of "the ME book"), so when you choose to do so, you choose the negative consequences. Any 'distinguishability' and the way people react to it, is a function of your own faults.

This also essentially punishes Autistics for learning coping skills. They might get you through the lower grades, maybe even into high school or young adulthood if circumstances line up, but there will come a time when scripts and constant vigilance are not enough. There is always too much to process, too much to juggle, more and more things to do and ever increasing demands. Putting a veneer of "indistinguishability" on top of that is just setting us up for burnout. And then we are punished further if we can scrape together one last skill to seek help for burnout, help that doesn't even exist. Failed indistinguishability should just fade away.

I plan to touch on these topics and some other issues over the next while. Indistinguishable does not mean what people are led to believe it means, and this is something that needs more exploration.

Sunday, September 8, 2013

Here, try on some of my shoes.

Yet another parent has tried to kill her child, so of course people are again coming out of the woodwork to demand those of us who say "down with that sort of thing" walk in her shoes. They seem unaware that we, too, have shoes. So this is an illustrated guide to most of the shoes I remember walking in. Please return them in good condition.

child's white two strap sandal

This is very similar to the sandals I was wearing when it became clear I could read. I was about 2, in my grandparents' kitchen.

I could not speak yet, but I was reading. Catalogs and cookbooks mostly, these are what was at my level and had more words than pictures. I also distinctly remember pouring my juice on my lunch and being distressed that the juice wouldn't go back in the cup at this age.

white velcro kids shoes
I had a pair of shoes like this around the time I was diagnosed. I also had a pair of Punky Brewster sneakers but what I really remember is kicking things with my white velcro shoes. And velcroing/unvelcroing over and over and over.

I was wearing similar shoes when I learned how to speak. My first words were "mommy go away in the car." And I put them on the wrong feet. And I was wearing them when my mom split my lip slapping my face because I didn't look her in the face. And I was wearing them when I realized that all boys look alike in Kindergarten. And when I found out that when you can't tell the teacher who is being mean, they're meaner, because they get away with it. And when I learned that kids will be nice for a week to get a movie and popcorn, but then they'll be mean again because the behavior chart has the weird kid's name on it, not the names of the people who are the Antecedent to the Behavior.

I was not wearing these or any other shoes during ABA sessions. Not after the first time. I had strong little legs even then.

white laceup child sneakers with pink trim

These were my first tie shoes. I wore them to soccer practice. I wasn't good at soccer and only played in 1st grade. I was overwhelmed and afraid of the ball (I couldn't track it) and too much was going on. I regularly melted down when we played Monkey in the Middle; I wasn't very good and so the coach called me Monkey and I thought he was making fun of me (spoiler alert: he was. Adults make fun of children all teh time). So that was it for soccer.

I was also wearing these shoes in class when the teacher made fun of my handwriting. I don't think I qualify as dysgraphic but I certainly had poor fine motor skills. She'd call me up to the board to write phonics lessons on the board and then mock my handwriting. She didn't like that I was already reading at a high school level so she made fun of my writing. She even told my mother that she wouldn't let me read at my level until I had nice handwriting.

These were on my feet when I started noticing what felt like really intense in-body experiences. Not out of body, in body. Like I was stuffed somewhere up inside myself and my body was a mecha. It was very strange, depersonalization or derealization or something. It was also seizure activity, but I couldn't express it very clearly and so instead of aggressive treatment for epilepsy, I got aggressive treatment for "off task behavior".

And of course the bullying just ramped up and up.

forest green lace up suede shoes

If we are looking at life as a series of shoes, these might be the ones that indicated my mother's good-parent choices were going down the tubes. She sent her Autistic, sensory defensive, already bullied to PTSD child to a 3 story school in green suede oxfords. It was the 90s.

So let's talk about the years I was at that school, yes? I have already talked ad nauseum about my mother, and all you folks want is for me to take her shoes for a ride, going to far as to defend her abusive behavior (which started when I was at the Green Shoes School). So go review my posts about my mother, and then we're going to talk more about this shoe option.

In theory, I wore these shoes to a private school that sought to meet all my educational needs-those of an executive-functioning challenged, sensory challenged, socially interesting profoundly gifted child. This school was advertised as being very good for children like me.

In practice? I had no trouble whatsoever grasping the academic content. It was not a challenge. Getting the work done was because the attitude was still "if you're so damn smart just do it, god, what are you stupid or something?" I was wearing these shoes the first time someone called me "retard". It was at the Green Shoes School where I got locked in a locker as teachers watched-and got suspended for kicking my way out. It was at this school where I got pushed down stairs, locked into places, touched without permission, had my books stolen, had people cut out chunks of my hair (and get away with it, possibly because I have a shitton of hair or possibly because the teachers just did not care). It was at this school where the principal threw an ice bag at me after I got hit in the head in PE class. The PE teacher wouldn't let me get ice. I had a concussion. This was before I had dents in my skull. Shortly before, but before.

It was here that I stopped attending art class because it was hell. Sensory and social hell. It was here that I learned that you never, ever tell an adult or authority figure because when you do, they make your life even harder. It was here that I learned it is easier to hit back than it is to get help.

Where was my option to snap? Walk in my green shoes a while.

black suede lace up shoes

These black suede laceup oxfords are similar to the shoes I wore to high school. They started out all new and whole. My self concept was pretty trashed, however, and any family relationships were well on their way to the sewer too.

See, I got to ninth grade knowing I was smart enough to do anything academic, yet too stupid to actually do it. I got to ninth grade knowing it was my fault if anyone hurt me, even very badly, because I fluttered my hands or didn't look at their faces or didn't grasp that they were trying to be funny fast enough. I got to ninth grade knowing that everything is bullshit.

PE was hell. Not like middle school hell, where an incompetent fool allowed sixth graders to pick teams-always based on popularity, not actual ability. And even if it was ability that's still cruel. More in the change fast, run around in a loud bright echoey place just long enough to get really unregulated, change again. So what does an unregulated body do? It cries. Or mine does, given space to just cry and not have anyone in my space. So there was lots of PE crying, and trying to explain that it wasn't anything wrong, I just couldn't stop crying.

There were things wrong, but they weren't PE.

The bullying mostly tapered off in high school (you only need to scare one person who pulls your hair...), at least from fellow students. Teachers kept up with the "if you're so damn smart why are you so damn stupid?" and I stopped taking classes that were academically even a bit of a challenge-no one would help me get set up to do the work, so fine, I can pull a great GPA in classes that I can do actually in class.

I beat the valedictorian of the class above me for the highest grade in our Biology class. Yet I couldn't write a term paper on a word because no one would tell me the requirements. For not magically having this knowledge-and a printer that wasn't dot matrix-I was all sorts of stupid. Just ask my Freshman English teacher. And my mom was out of fucks to give, just telling me the same thing-that I was smart so figure it out.

These are the shoes I was wearing the first time my mother threw my head into a wall. I think. That might have actually been at Green Shoes School. I know I was wearing these when she started trying to start fights in earnest. Maybe once I hit 90 pounds she thought she'd get some sympathy? She was around 150 so I was still outweighed.

These are the shoes I was wearing when I had to jump out of the window to get to school in my sophomore year because my stepdad wouldn't move. The day my mom said she didn't care unless he was naked about to rape me, the day I knew she knew he already had.

These are the shoes I wore to holes. I walked through snow in them, walking home or to the gym to avoid home. I walked through rain in them. My feet got very wet and very cold in these shoes. These are the shoes I was frequently wearing at church where I had to pretend everything was pretty and lovely even though it wasn't.

green suede skater style shoe

OK so let me talk about these shoes. I actually had 2 pairs. And they weren't identical to these, but I could not find a pair of Surge-green late 90s Sketchers to use as an illustration so here we are. I had my pair, which were the color of that soda, Surge. Remember Surge? I do. I remember not understanding the big deal. And the other ones were blue. A sister and I were in the same shoe size for about five minutes and I got a second pair of sneakers out of the deal when she grew again.

I got a pass to wear sneakers to school in late high school because my ankles were always, always jacked up. I wore, therefore, really brightly colored sneakers to school. It's probably the worst thing I did as a kid. Being unable to do homework is actually not misbehavior, contrary to the opinion of everyone around me.

My shoe pass coincided with my mother being more and more physically abusive, my last name donor's wife being more and more emotionally abusive. I had a group of friends at this point, but what does that do if you're not sure you'll survive your drunk, unpredictable mother?

I was wearing these shoes when I was put on Adderall. I was wearing them when the side effects were so bad that my gymnastics coach made me promise to never take it again. I was wearing them when my mother tried to talk the doctor into jacking up the dose and then she stormed out when he asked if she was going to take them herself.

She was going to take them herself. But Autistic children drive their parents to drink, smoke, drugs, and murder, right? I should walk in her shoes.

These are the shoes I was wearing when I went to competitions. This isn't particularly relevant, except the day of a state meet in a year I could drive. My mother wanted me to go to church with them before the meet. I declined because everything always smelled like smoke, there is no getting smoke out of a leotard, there really isn't, and because I did not trust her to then take me to the meet on time. We always did have a different sense of what on time meant.

She told me that if I didn't go with them to church I couldn't come back.

I had prepared a bag for this weeks before, because I knew what she was like. I knew escape readiness needed to be a thing.

I dragged some blankets and the things I needed for the day through my house and back yard with my mother screaming obscenities, demanding for me to come back so she could beat me or burn me or whatever, as fast as I could go, in these shoes.

They took me rotating through houses as my mother tried to report me as missing and wandering and what have you after that, tried to get me committed and under guardianship. You can't commit someone you can't find, and it was clear, oh so very clear, that my mother meant me no good at all.

She told me I could never come back. And I didn't. These shoes took me out of there, but first they walked through all sorts of hell. Try them on?

light tan feet, the left one has a black ankle brace

These shoes took me into battle. They took me into battle the day my mother told me to come back and let her dent my skull again or never come back at all. I won state champion that day, and then cried on friends because I didn't know what to do. But these are my battle boots, my callouses and my ankle brace and now the screws in my ankle, and the order of things is do the job, then lose it.

Sometimes, before that day, it was a battle boots day-a competition. Sometimes I'd get there whole and fresh and unstressed, riding with a teammate or my sister or occasionally just my mom. Sometimes I'd be stressed, often from my mom. Sometimes I'd have already put a shoulder back in place that day, or my stepdad would have been forcefully throwing his seat into my knees the whole ride. Autistics are not the only people who "have aggressive behaviors", but when he did that it was acceptable. I don't know why. It was though. Should I walk in his shoes?

white sneakers
I think I had a couple pairs of these, only mine had laces. They walked with me from the homeless shelter to all sorts of places. Before that, they were on my feet when my last name donor's wife threw hot coffee all over the elf dress I had made myself. They were on my feet when I fled my last name donor's house because his wife just would not get out of my face and I hate, hate physically defending myself but just once flight was actually somewhat an option. I had to knock over a sibling who was twice my size, but he was on the stairs and had plenty of opportunity to move and was looking for fight. If I were not moving so fast, again, I could have died that night. Or been wrongfully put in a hospital or guardianship.

These shoes came with me when I was trying to get my med situation for epilepsy figured out. They took me in the car, on busses, on foot, to pharmacies and to the doctor, the very nice doctor who let me pay with writing instead of with money when I had no insurance. They took me to apply for Medicaid, when they told me I should get knocked up if I want insurance so badly. They took me to grocery stores where I'd get lost in the chaos.

They were my homeless shelter shoes. The shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night.

The homeless shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night. 

One more time, with feeling: The homeless shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night.

These were the shoes on my feet when I was very, very physically ill, when my mother told me to get a real job or die on the streets. That's the last time I ever spoke to her.

These were the shoes I had when, technically, I did die, for some definition of die. These are the shoes of the year of the seizure, a year I barely remember because frequent seizures don't let your brain move things from short term to long term memory.

These are the shoes I had when I found out "very physically ill" was adrenal insufficiency, and that it was actually quite surprising that I hadn't died from it yet. And these are the shoes I had when the year of the seizure ended.

These, too, were the shoes that eventually took me into the west, when I had to relearn how to walk. These are the shoes that took me to oh so many doctors who did not believe an orthopedist screwed up my ankle surgery. The first one who actually looked at it was appalled at exactly how messed up my ankle was, but Autistic people don't understand pain, you see, or how things work, so I could have been making it up.

My left shoe wore out ages faster than my right one because I didn't walk with my right foot for nearly a year. For a while I was living on a rice cake and peanut butter a day, nothing else, because I could not get to the store and bring things home. The Spokane Autism Society kept me from starving to death. They were the first autism organization that I met that did actually helpful direct action for an autistic person. I was 25 and they were the first.

How are these looking for you?

yellow rock climbing shoes

Or maybe you'd like these. These are my rock climbing shoes. I was wearing these when a teacher told me, straight up, that he refuses to teach autistic students, that I cannot appreciate the risk inherent in rock climbing, perhaps yoga would be more my speed. This teacher broke all sorts of privacy laws, and the school didn't care, because I am Autistic.

blue sparkly converse style sneakers

Are these more to your liking? These are the ones I was wearing when, again and again, supposedly good people-you know they're good because they will tell you they're good-assaulted me with flash cameras. Walk in their shoes! They want a picture! A flash picture! The ADA doesn't really exist.

I was completely confused and disoriented, not quite sure of my address, more than once because of this. These folks claimed again and again that they'd make access a thing and instead recruited a professional photographer to do their flashy dirty work. Portland Lindy Society, fuck yeah.

Should I walk in their shoes? Is the epilepsy and the autism contagious from dancing with me? I'm actually a good dancer. Take a spin in these shoes.

lime green converse style sneakers

Or try these. They're the shoes I wore to mourn at the ASAN Vigils both years now. I was wearing them when I heard about Alex Spourdalaikis. I have explained ableism in these shoes. The last time I was called "retard" to my face, I was wearing these shoes. It still hurts, just so you know. One of the many times a parent told me, to my face, that she'd have understood if my mother killed me, I was wearing these shoes.

That was at school.

The disability services people nearby shrugged and asked what I wanted them to do about it.

I want, just once, for the people who are supposed to be on our side to be on our side. That's all.

dingy grey sandals with pink trim. One has its unevenly worn sole showing

Or these. These are the ones I wear in the summer. These are the shoes I was wearing when I heard about Issy Stapleton.  These are the shoes I have been wearing to get shit done, because it doesn't stop needing doing just because the world sucks, while people are defending the attempted murder of Issy Stapleton.

These are the shoes I wear to go help other Autistic people because folks are too busy yelling about services for parents to see that we're being shoved into the cracks to rot. These are the shoes I wear to go do things so my mind doesn't crack under the hopelessness of it all, sometimes. These shoes are falling apart at the seams, but they're mine.

Maybe you should take them for a spin.

Friday, September 6, 2013

I could have been Issy Stapleton.

If you want to tell me I'm judgemental, go away. You aren't wanted here. I'm going to say harsh things about autism parents. You have a choice to go away, or to actually think about them. Being an asshat or sympathizing with abusers and murderers isn't an option.
I could have been Issy Stapleton. If I'd been 10, 15 years younger? Oh so easily could I have been Issy Stapleton. For a variety of factors had I been killed when I was 14 (so in 1997 or so) you'd never have heard my name. But had I been 14 in 2007? Oh yeah.

See, my mom got off on the attention that extremes got her. We were talented athletes-and she made sure everyone knew. She got off on having a child who placed at State and Nationals regularly in a very difficult sport. No, really. She'd drag me into her work with my little warmup suit and my trophies. It was embarrassing, because I knew the only reason she was doing it was to one up someone whose kid made the starting lineup or something.

But she also got off on saying profoundly negative things. Now, she didn't lie, exactly. But she fudged the truth. She would present stories so as to erase her role in them.

I keep seeing "Issy was violent" portrayed as an excuse. Thing is? My mom could have made the same case. I tossed her across the room more than once. I bit her more than a few times in my teens. Pulled her hair once or twice. Kicked. Knew better than to hit because my legs are stronger. But this was not  unprovoked. My mother's idea  of a good time was to provoke a meltdown, then get in my face, try to hold me down. It feels like suffocating, being in a prone restraint.

And I am stronger than my mom. I kicked her, pushed her off, to survive. She banged my head into the wall, so I pushed her off as hard as I could. She dislocated my shoulders, so I kicked her off. She had her hand and arm over my face, so I bit her. I was in fight or flight, and flight isn't an option when someone is trying to keep you there. Flight was my first choice. I was forced into fight, and to survive I had to win.

Are you still feeling sorry for my mom? Really? If you are your empathy is misplaced. And don't try to tell me for a second that she lost herself in the moment because she was overwhelmed. She never touched my face. Not once. Just parts of me that were covered with hair or clothing, or that could have been bruised other ways.

My mother was violent first. And I have no doubt that Kelli Stapleton also did things that made Issy feel trapped, where fight was the option because flight was made impossible.

While my mom had to call people or tell people in person that her life was hard and that her 90 pound daughter beat her up (neglecting the part where she started it. I have dents in my skull and a chronically subluxating shoulder from her), Kelli Stapleton had it so much easier. She could tape shit and youtube it, or type it up and post it to a blog for the whole world to see in minutes. She could reach more people in 10 minutes with her sob story than my mom could in 10 days.

If my mom had known she could get away with it? Be lionized for it even? She would have done the same thing. With thousands of people who she knew had her back? She would have been on it. Our garage would have been cleaned specifically for the purpose. She'd have found a way that I'd die and she'd survive (probably a method of poisoning. My 90 pounds to her 150 means that I'd be oh so slightly more susceptible, in theory) but yet get sympathy. If she knew hundreds of people would support her, that the media would support her, I have no doubt in my mind she would have gone for it.

There is no extreme like "I tried to kill my child and myself". That's even better than "My kid won a medal at the 2nd highest level at power tumbling nationals". It rolls off the tongue so much easier. People know what you are talking about. And for some reason, people just love parents who are supposedly driven to extremes.

My mother would have gleefully destroyed my privacy on a blog. When applauded for it, she would have gleefully kept pushing and pushing. And when she saw that the most attention and support goes to people who kill their children?

I would have been dead.

Issy Stapleton is one of us. I could have been her, oh so easily. Many of us could have.

Think about that before telling me not to judge. Not  only is judgement healthy, but I have every right to judge. I lived Issy's life, just before every parent had a blog. Those are the shoes I've walked in.

Thursday, September 5, 2013

To Issy Stapleton, with love.

Dear Issy,

I wish with all my heart that I wasn't writing to you in this circumstance. I wish I was writing to  you in a more joyful situation. I wish you had become known to me because you were exploring your Autistic identity and taking your rightful place in our community-a community that loves you for your very existence, a community that thinks you are whole and complete.

Unfortunately, that is nearly the complete opposite of the circumstances that are before us. You are in the hospital right now. Your mother tried to kill you. You know that, though. You know that you were doing the best you can with what you had and that it was never good enough.

I am writing to you because there are things you need to know, things that very few people are going to tell you, because they with their vaunted NT empathy can't manage to feel for you-only for your assailant.

Dearest Issy, it is not your fault. You did not make your mom do anything to you. It is her job, as a parent, to cope. Not to kill. It is not your fault that your mother chose to use you, yes use you, for pity and sympathy. It is not your fault she elected to try to kill you. That is not your fault at all. You deserved oh so much better. It is not  your fault that she demanded what you couldn't do. It is not your fault that she refused to acknowledge that you have weaknesses to go with your strengths. It is not your fault that you can't do the impossible. It was not fair or right or acceptable, even, to have that demanded of you.

Issy, I know that the media and your mom's friends are being absolutely awful and terrible about you. That isn't right. That isn't fair. It's revolting, it is bullying, it is trying to excuse the inexcusable. There is a whole community that has your back. We are outraged, indignant, on your side. Unquestioningly on your side. There is a large Autistic community and we care about you. We are standing for you, right now, and always. There are non autistic allies who are speaking for you too. We cannot undo what was done to you, as much as we'd love to, but we can declare that it was not ok.

We have logged many, many miles in your shoes. We know what that journey is. We won't let anyone forget.

I want to be able to tell you that everything will be ok. I cannot make that promise, and I respect you too much to lie to you. I can promise that we will do everything we can to make it ok. I can promise that we will not let you go undefended. This isn't enough, I know. We cannot fix it. But we are here for you. There is no justification for harming you, ever ever ever. I'm so sorry that the only promises I can make are really not enough. I am so sorry that you live in a world that tries to justify hurting you. Sorry and angry. Not angry at you. Angry at everything, ever, that tells us that you are less than. You are not less than anyone.

Dearest Issy, I have your back. We have your back. We love you just as you are. We know how love works. And doesn't work. Love doesn't work by suffocation. Love works by accepting and embracing a person as they are. We are going to do our best by you. You deserve it, and you have been failed by the very people whose job it is to do their best. We will not let that stand.

We may not be able to make everything be ok, but we are sure going to try.

With deep wells of love,