Okay, so those of us in the autistic community see that phrase, 'not like my child', on a near daily basis. Not only is it dismissive of any opinions we may express over our experiences with being autistic but it's mind blowingly absurd anyway. I'm a 43 year old woman. I'm 'not like' anyone's child, autistic or neurotypical.
But that's not what this little rant is about anyway. It's the assumption that my 5 year old child must not be 'like their child' simply because I talk about 'acceptance' instead of pissing and moaning about hating my life.
Parenting is hard - full stop. Don't tell me I don't understand and then list off all the areas where your child struggles or needs supports in an attempt to make them sound as 'bad' as possible. Newsflash - I could say all the same things about my child but I don't. I don't because she is a human being who doesn't deserve to have her difficulties spread all over the internet so her parents can get sympathy and attention from strangers. I don't because she is all kinds of adorable and funny and awesome and that's what we embrace and wish to share. I don't because so many of the things listed as being so horrible don't strike me as being a big deal anyway. It amazes me that the supports we offer young children in the toileting or safety departments suddenly become something to cry to strangers on the internet about when it's an older autistic child/adult involved.
If people put the energy into appreciating their child's strengths that they do into lamenting their child's weaknesses we wouldn't need to keep having this awareness/acceptance debate. We are human beings. We deserve acceptance and not the negative 'awareness' that is constantly being spread about us. When you are demonizing your autistic child for internet sympathy you are demonizing ALL of us and, yes, we take that personally.
*image description: caption with red background reads - 'I need your acceptance much more than I need autism awareness' alongside a photo of a smiling blond haired 3 year old girl who happens to be my incredibly adorable daughter.
I am going to preface this post by saying I am not going to kill myself. I'll even say it twice. I am not going to kill myself. Now that that is out of the way...
The disability community has been abuzz recently due to articles like this - People on the autism spectrum live an average of 18 fewer years than everyone else, study finds and I have hesitated to share them on Facebook because I don't want people, my children specifically, to worry. Turns out I have too many thoughts on the subject to keep my mouth shut, though.
I have an odd mixture of horror and relief reading about the suicide stats. Nine times more likely to commit suicide? 14% of autistic children think about suicide? I'm horrified for my tribe but relieved to know on some level that it's not just me being 'crazy' again. This sense of doom that I have lived with my whole life has a reason to exist.
I'm a bi, Autistic whose mother committed suicide. That's, what? Like the Trifecta of Doom? The other day I thought,"I probably have something like a 1 in 10 chance of not killing myself", but it actually made me giggle. Partly because I'm kind of twisted like that but mainly because I have this little voice in my head that gets really scrappy when people try telling me what I'm supposed to do. Oh, wait...you're saying I'm expected to kill myself? Pffft. Bite me. Just for that I won't even if I really, really wanted to.
And there are some moments when I do want to. Life can be really hard and the thought of a nice long dirt nap has its appeal but I would never do that to my family. I don't want my kids to ever know that feeling of doom. Right now I'm at that magical age (43) that my mother was when she died. I had professionals tell me for decades that this would be a hard year for me but, again, don't tell me what I'm supposed to feel or do. Scrappy kicks in. And while the subject has been on my mind lately it has had much more to do with the Swedish study and less to do with any feeling of connection to her.
The sense of doom is just something there to live with, like the tremor or the feeling of being a freak. It breaks my heart to think that so many of my tribe feel the same but at least we're not alone in this. This world is not autism friendly so it's not 'crazy' to have thoughts of escaping it. We just need to try and focus on the things in it that are worth staying here for.
Okay, so it's not really a party. More of a tiny gathering. We need coffee. Cinnamon rolls would be nice, too.
I've had this brain my entire life so I'm used to it by now. Even when it's giving me a hard time it's not usually too big of a deal because I simply adjust and wait for the abilities I've lost to come back. They have always come back. I can easily count on one hand the number of times in my life when I have been this disabled for this long. In the past I have become depressed and needed hospitalization but I'm getting much better at dealing with these setbacks. Understanding why it happens makes a huge difference.
But once in a while it still bothers me because it wasn't that long ago that I could do the things that I can't do now. Facebook reminds me every day with that cursed 'Memories' feature. Oh, look. I took Evie to Walmart. Wait...and made cookies? Then took the kids out for dinner? In one day?
Today I needed to package something up for a friend and take it to the Post Office. I joked about it on Twitter and Facebook but the amount of struggle involved in completing such a simple task made me so furious with myself. Address the envelope. Put the shirt in the envelope. Tape it shut. How hard is that? Apparently so fucking hard that it took me a week to be able to do it.
And I can't even explain why it's so difficult. I know what I need to do and I know how to do it but it's like a paralysis. I just can't.
The trip to the Post Office was even harder. We live in a small town. It's a small building. One clerk available and I've never seen more than 3 other people in there at one time. It should not be the monumental task that it feels like it is. It makes me feel stupid. Pathetic, useless and stupid.
But the issue isn't really about the package or the Post Office today. I know the reason that it's bothering me so much is that little voice in my brain that keeps repeating,
"If these simple tasks are so much of a struggle then how are you going to manage a con in Atlanta?"
I won't wallow long. I prefer to stay 'shiny'. I appreciate the many blessings in my life and the good things my brain has to offer but I suspect this feeling will crop up many more times between now and October.
Oh, and don't forget the chocolate. We need some of that to go with the coffee and cinnamon rolls. Just don't make it Lindt. They support Autism $peaks.
In my previous blog post, And Then Suddenly I Was Autistic, I spoke about what it was like for me growing up undiagnosed. I have received some wonderful feedback but my intention in writing that was not to amass a pile of wowyouresoamazings. Mine is not an unusual story. There are so many other people out there with similar experiences even though the details aren't the same.
The CDC comes out with their figures ("1 in 68 children!" *gasp*) and folks start throwing around words like 'epidemic' or 'crisis' when the reality is that we've been here all along.
So many stories like mine.
It's not vaccines or older mothers or genetically modified foods. We've always been here. Granted, if I had lived 100 years ago I probably would have remained locked away and unable to go on to pop out miniature versions of myself, so there are likely a few more of us but it's not because our mothers had Gestational Diabetes or whatever the hell they think the cause is this week.
But, yeah, I really wasn't shooting for the inspiration porn vibe that was apparently radiating from the previous post. I don't want anyone's sympathy or to inspire anyone. I merely wanted to educate and illustrate the reality of growing up without a proper diagnosis.
I choose not to define myself by any of my bad experiences. I don't wear my struggles as some Badge of Honor. Shit happened and, yes, it helped shape me but I have not been that child for many, many years. I'm not even comfortable with the word 'Survivor' anymore. The way I see it, with the weight we have assigned to that word now, it's still giving too much power to the past. Everyone suffers at some point in their lives so if they're still breathing, they are 'surviving'. All that being said, I certainly don't begrudge anyone else the labels they choose to assign to themselves. I just prefer not to use that particular one myself.
I'll stick with Autistic, Wife, Mother, Friend, and the occasional ridiculous online moniker but I'll happily pass on Survivor or Inspiration.
Trigger warning: Institutionalization, abuse, suicide, general yuckiness.
When I was little no one knew I was autistic. I was just a hyperlexic, sleep disordered, sickly, difficult child. In addition to meltdowns I had shut downs so I was eventually taken to a neurologist to rule out absence seizures. While they said my brainwaves were unusual, it was not epilepsy. It was written off as 'stress' but they didn't suspect autism. I was subjected to many invasive medical tests during my childhood to try and determine what was 'wrong' with me but aside from some food intolerance, nothing showed up.
I hated life as far back as I could remember. I always had such a strong sense of not wanting to be here, like I knew on some level that life wasn't supposed to be so hard or overwhelming. At the age of four I drank an entire bottle of perfume after my sister told me it was poison but it wasn't until I was nine that I made a conscious decision to try to kill myself.
I was put into therapy and tested. I recall them being frustrated with me for my 'non answers' but some of the questions simply made no sense to me so I refused to even try. How the hell should I know what the woman in the picture was thinking? I could have fun with that one now but back then it seemed pointless.They still didn't know I was autistic and as I continued to get worse I was eventually institutionalized. I officially became The Crazy One of the family.
I spent two birthdays in the 'Bad Place' but they didn't figure out I was autistic there, either. Looking back at it all, I believe that some of my fellow patients were also misdiagnosed autistics. Unfortunately their 'treatments' were pretty much the opposite of what autistic kids would need. Living in close quarters with 29 other kids would be hard for anyone but being locked out of my room so I couldn't escape from the constant chaos was their approach to 'making me deal' with it. Meltdowns would follow. I was written off as 'resistant to treatment' and told I would spend the rest of my life in places like that. After 16 months the insurance stopped paying because I was getting worse instead of better. I was kicked out and sent to a residential program in Pennsylvania.
They didn't know I was autistic, either, but they accommodated my needs anyway. They also didn't believe I was 'crazy' and for the first time I stopped being quite so miserable. Mostly. In defense of the professionals, I was also an abused child so many of my 'behaviors' could be excused as the effects of that. PTSD could take the blame for the disordered sleep, hypervigilance, and other things. I was there for a couple years and then returned home to Vermont.
I was still The Crazy One of the family. Shortly after coming home my mother killed herself, my father moved on and moved out, and I was left as a teen to flounder. I spent the next 20 years in and out of marriages, long term relationships, and many failed attempts at holding jobs. I just could not do life like 'normal' people no matter how hard I tried. I could 'pass' for a while and then I would go through a burnout period where I could barely function. I used what energy I had to try and hide the worst of it from my children. After several years of this cycle I was determined 'disabled' but the reasons given were depression and anxiety. Well, yes, I have severe anxiety but since that time have come to realize that the depressive episodes were triggered by my loss of ability to function and not the other way around. Losing the ability to do things sucks and there's an adjustment period that follows. Feeling depressed during that time is an understandable reaction but not the cause.
So how did I magically become Autistic? Like so many autistic adults it was when my youngest child was diagnosed. Again, I assumed so many of my little 'quirks' were from being abused. Lousy eye contact? Must be my low self esteem. Don't like to be touched? Must be that pesky old sexual abuse. Pointed, amused looks from my husband during Evie's evaluation? Yeah, okay, I get it. She and I do a LOT of the same stuff. Even the toe walking. And smelling everything.
It wasn't until I read the differences between the way autism presents in males and females that it was really driven home for me, though. It explained so much about everything I've struggled with over my lifetime. I've now had three years to process all of this and I'm still learning new things about myself and how my brain works all the time. This knowledge has been a blessing. I still struggle daily but now I understand why and know what I need for accommodations to make life more bearable.
I no longer don't want to be here. Here isn't so bad after all.
We're rapidly approaching the month of April which means you'll be seeing people post 'autism awareness' images and 'lighting it up blue'.
You will also see the Autistic community and their allies bitching about it.
See, 'awareness' sucks. 'Awareness' is prevalence rates and tragedyspeak and 'we need to find a cure' crap. It's a money grab by Autism $peaks and the scarier they can make the 'awareness', the more cash will flow into their coffers. And Twizzler Challenges? No.
*Image description: Super cute little girl with blond hair, pink sunglasses and a pink tee shirt that reads 'Autism Speaks does NOT speak for me'.
We're all about 'Autism Acceptance' up in heyah. Acceptance is understanding that it's not all doom and gloom. That, yes, some times are really rough but many are beautiful and full of joy and that's what we should focus on. It's learning to embrace difference instead of merely tolerating or even trying to eradicate it. It's understanding that maybe that 'spoiled brat' screaming in the checkout line is really an autistic child who is experiencing sensory overload and giving them a kind smile instead of the stinkeye. It's understanding that children don't magically outgrow autism and that you have probably known autistic adults in your life and never realized it.
So, what is autism? Autism is a little girl who sang so much her parents didn't realize she couldn't talk. It's a little girl who is terrified of seeing someone sweep with a broom but loves to use a broom herself. Autism is listening to Gangnam Style, on repeat, every time we went anywhere in the car. For four months straight.
It's the Wiggles Christmas DVD year round.
It's belly cuddles and bracelet collections and spontaneous giggles.
It's a child who notices everything and forgets nothing.
And she'll swipe your phone in a heartbeat.
It's the 42 year old woman who spent her life being told that she was crazy only to discover that her brain really does work differently from others. And that it doesn't mean she's broken. It's the 42 year old woman who doesn't understand why the world works the way it does but can instantly understand why her child can't tolerate going into a BJ's Wholesale Club.
It does not mean Rainman but sometimes I do hear,"Uh oh, mama!", hundreds of times in one day.
Autism means that 'hundreds of times in one day' is not an exaggeration.
Autism also means that your mother's mail carrier's autistic cousin probably doesn't appear to be anything like my 4 year old. Or myself. There is no One True Autism.
Autism is not all rainbows and unicorns all the time. It is disabling to some degree on even the best of days. I will never post about many of Evie's struggles because being 4 years old does not mean her dignity should be ignored. If she wants to talk about them in a blog someday, that's up to her. I don't mind talking about my own difficulties. I'm pretty much an open book but I don't always work,"I had a meltdown yesterday and beat my legs with a hairbrush", into everyday conversations.
I kinda want to now, though. "Did you see last night's episode of Supernatural? Wasn't Cas hysterical? Speaking of, sometimes I scream and cry and pull hair out of my head when I'm overwhelmed."
Or not. *sigh*
So what did we learn today? Acceptance = Good. 'Awareness' = Bad. My kid is all kinds of awesome and she wouldn't be herself without her autistic neurology. Me? Every 6 months or so I manage a minute or two of awesomeness but, yes, I wouldn't be me without my autistic brain, either.
Today is Mothers' Day in the UK so I was looking up images to find one I could post for my friends over there. Holy reverence, Batman! Apparently there are people who think moms deserve credit for 'all they do'. *blankstare*
'All they do'?! But everyone knows that mothers do nothing! Well, I'm sure that technically eating bon bons and watching TV all day is doing something but it's certainly not something important.
Yeah, that was sarcasm. *sigh*
Oh, I don't believe that just popping out a kid makes one deserving of a pedestal on high but it never ceases to amaze me how little respect women get when actually trying their best at raising kids. If the kids are less than perfect it's the mother's fault but when they turn out to be decent human beings it's 'luck'. Like Spiderman taught us, with great power comes great responsibility...and apparently zero credit for any of the good results.
I had a dream last night that a stranger told me I was doing a 'good job' with my kids and I cried. Why should that have to feel like such a big thing? Yes, I was 'lucky' enough to be too disabled to hold a job so I stayed home with my kids. I guess it's also 'luck' that I actually pay attention to the anklebiters and try to teach them stuff. Important stuff like quoting Psycho, appreciating bad 80's music and, I dunno, being good people or something.
Many of us willingly choose to become mothers. Some of us choose to put our children first but few of us knew we were choosing a position where we would be constantly picked apart and disrespected.
So who are the people creating all these reverent images of motherhood?!
.
.
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Um...probably other mothers.
