I'm not talking about drawing detailed city landscapes from memory or counting cards. And I can assure you that if you toss an open box of toothpicks at my feet the only response you'll get is,"Hope like hell you plan on picking those up."
Spoiler: We're not all Rainman.
No, I'm talking about the traits we have that make us stand out from the crowd. Like our strong sense of justice. Many of us become disability activists because of this trait but it applies to all areas of our lives. This is often intertwined with our tendency toward black and white thinking which means we are the ones who will do what we believe is right regardless of any consequences for ourselves.
Most of the people I interact with online on a daily basis are not autistic and I am often fascinated by the 'go along to get along' mentality I see displayed. I'm not saying this to pick on anyone, as it seems to be a conditioned response to our society so I'm sure many aren't even consciously aware that they are doing it. The autistic mind looks at a situation and if it offends their sense of justice will say,"This is wrong. I simply can't go along with it.", and respond accordingly, whereas a non-autistic person appears to say,"This is wrong but if I don't go along with it other people may get upset or not like me anymore so I'll just stay quiet." (And not just appears - I have literally had people say things like that to me.) Another common thing I see is,"I see them being mean to other people but they've never done anything to me so they're good people." Whether it's a friend talking about a personal acquaintance or a random white person talking about the police I see this numerous times a day online. I can't even wrap my mind around that one.
We're told we lack 'social skills' and are pressured to play along but just because something is 'normal' doesn't make it right. Our society is being torn apart right now by fear and prejudice and hatred but those who stand up (or kneel) to speak out against it are mocked or outright vilified. I am often frustrated by the sense that bad behavior will always continue because there are not enough people speaking out. As long as there are no consequences there is no reason to change the status quo.
I appreciate my brain even when it makes me 'unpopular'. I sleep easy at night knowing that I am true to myself and my convictions and, honestly, it really doesn't bother me if people I wouldn't want to associate with anyway don't like me. Perhaps that should be added to the list of Autistic Superpowers, as well.
It's like Winston Churchill said,"You have enemies? Good. That means you've stood up for something in your life."
This isn't going to be about Hollywood blowing off disabled actors or reinforcing the inspiration/burden stereotypes. It's about something troubling I realized recently that has kind of crawled into my brain and refused to leave.
Last week I saw an independent film called The Happys and I very excitedly wrote this take on it - The Happys or Holy Crap! Someone Did It Right I was so thrilled to see a disabled character that not only could I relate to but that was written as a human being with strengths and weaknesses. What I did not expect was to discover that others interpreted the story line as unrealistic because it did not follow the usual stereotypes. Here I had hope that characters like this one could educate people about the realities of being disabled while entertaining but it appears to have missed the mark.
I spend a great deal of time reading articles about disability and am reminded daily about just how misunderstood it is to much of the population. This creates problems for us because a lot of the misinformation and misunderstanding leads to hostility toward the disabled community. For example, some wheelchair users are able to stand or walk for short distances. Not understanding this leads to charges of 'faking' and even angry attacks. It gets even more complicated when it comes to invisible disabilities.
I am autistic. I have an autistic child and dozens of autistic friends. We are all very different from one another. There are enough commonalities to establish a basis for diagnosis but we are still individuals with different abilities. How can film makers portray an autistic character 'realistically' to a society that believes we're all either non verbal 5 year old boys or 'Rainman'? "A person with x disability would not be able to do y." We can and we do. I loathe haircuts. I'm 44 years old and I literally sit there fighting the urge to scream. My 6 year old autistic child loves them. She would get a haircut every week if it could be possible.
Saying we're all different is stating the obvious but it still seems to escape the grasp of so many non-disabled folks. On one level it is understandable as it is outside of their realm of experience but at the same time it's troubling because it demonstrates that, at least subconsciously, we are not seen fully as human beings. This affects everything from how strangers treat us on the street to what accommodations businesses are willing to make for us. Maybe if over the next decade every disabled character was portrayed in a realistic manner the rest of the world would begin to get a more accurate picture, but I'm afraid that these rare gems we have now will continue to be misunderstood.
I want to begin by saying that I have turned the subject over and over in my head and can't find a way to write about this without any spoilers. I will keep plot points as vague as I can while still getting my point across but if you haven't watched it yet and want to avoid anything being spoiled, you should probably skip this post.
*image description - movie poster for The Happys featuring 3 women and 3 men standing in a line.
The plot from their IMDB page - "Twenty-one year old Tracy walks in on her boyfriend Mark having sex with
a man and decides to leave him. After assessing her limited options,
she returns to Mark with a deal-if he agrees to marry her, she'll forget
the incident ever happened. Mark accepts her terms, but neither fully
understands the sacrifices they have to make. As their relationship
deteriorates, Tracy's world opens up when she befriends the quirky
residents in her Los Feliz neighborhood: Sebastian, a troubled recluse
who closed the door to society after being bitten by a poisonous spider;
Luann, a former child star and true free spirit; Krista, Mark's
hard-charging talent manager; Jonathan, a gay magazine reporter; and
Ricky, a hot Mexican with a failing food truck. As Tracy discovers her
sense of self and true passion for cooking, she is a catalyst that
forces them all to grow and connect in unforeseen ways."
I first became familiar with this indie film project because I am a fan of Melissa McBride. I was eager to help with fundraising for that reason alone but when I saw that it was also an LGBT ("Hey! That's me!) film I was even more excited. The project was completed and premiered at the Rhode Island International Film Festival where I was able to see it.
I think it's a fantastic film for many reasons but this isn't going to be that kind of review. It's the character Sebastian and the handling of his 'reclusive' personality that took me by surprise and became the most important to my mind. His story line centers largely around his social disabilities (although just how 'disabled' he is is open for debate depending on whether you subscribe to the social model of disability or the medical model - but that would be a different post entirely).
Without going into great detail and spoiling too much, there came a point in the story where it looked like he was going to be The Disabled Person Who Overcame and Did the Thing. My heart sank. I had been enjoying the film so much and I was afraid it was about to be ruined for me. But it wasn't. He didn't end up Doing the Thing. You know what I'm talking about, right? The soundtrack swells, little Johnny is suddenly able to walk and there's not a dry eye in the house.
*hurk*
We hate that and I am so grateful that it didn't take that predictable turn. We refer to that kind of stuff as 'inspiration porn'. And by 'we' I mean us actually disabled people who work hard trying to dispel this common trope that we exist to be objects of inspiration for the non-disabled if we are to be valued at all. It's not just a matter of it being a little annoying. It is dangerous for us to continue to be seen as objects or less than human. Every year on March 1st we have a Disability Day of Mourning for all those murdered by their caregivers. Most people aren't aware of this. Just a couple of weeks ago Japan had its worst mass killing in decades. 19 stabbed to death and another 25 injured. Where was the trending hashtag? There was none because the victims were all disabled. 'Inspirations' or 'burdens', society rarely sees us as fully human. I want to thank these amazing filmmakers for making Sebastian fully human. The average viewer probably wouldn't even consciously notice but it still matters.
But this is even more personal for me than what I have already discussed. At the time the fundraising campaign was going on I was Sebastian. I had recently become unable to leave my house and the depression that frequently accompanies my losing functioning skills (I'm autistic so losing the ability to function comes with the territory for me) was threatening to take hold so I threw myself into helping with this project as a desperate attempt to make myself feel better. It worked like a charm. I would like to thank these amazing filmmakers for that, too.
For those who know me, my being in a place where I was able to make that trip to see the film could appear to be The Disabled Person Overcoming and Doing the Thing but it's not. There are probably military operations going on around the world right now that required less careful planning than what this trip required for me. It shouldn't be 'inspiring' to do the things that non disabled people take for granted. It just takes us a little more work. I'm still very much autistic. Bottom line is, some days we can Do the Thing and some days we can't. Sebastian couldn't Do the Thing but it didn't detract from his value as a human being. Thank you guys for getting it right.
*Image description - lightly tanned woman's arm that has scars and a tattoo that reads 'I'm still here'.
Well, I did it. Yesterday was my birthday and I turned 44. Most people see 30, 40, or 50 as the big milestone birthdays but, for me, 44 is it.
I jokingly told my husband yesterday morning,"Okay, I made it. I can die now."
No, I don't plan on dying soon but I have now officially outlived my mother. She was 43 when she committed suicide and that's been looming over me (with the help of several craptastic 'professionals' over the years) for a long time.
She's been gone for almost 28 years now and I still don't know if she was consciously trying to kill me. I knew she didn't want me and she came right out and said she would have wanted to abort me if she'd known she was carrying a girl but did she really want to see me die? The only time she ever showed concern for my depression and suicide attempts was when there was someone, usually a therapist or caseworker, whom she wanted to play the 'good mother' for. One thing is for sure, she loved the attention it got her. Poor Barbara With The Crazy Daughter. How haaaaard it was for her. I was 13 before someone had the balls to call her out on her part in it all.
Her last words to me on the day she died was to call me a 'slut', repeatedly. She just found out that I had been raped the week before (or 'seduced that poor man', as the oh-so-fucking-predictable narrative goes) and had to come right over to see if she could break me the way she always used to be able to. But I wasn't nine years old anymore. Or twelve. I was 16 and had learned that when people enjoy hurting you the best defense was to not give them what they want. I kept my cool and calmly headed out the door for my therapy appointment. By the time I arrived he said she had already called him and told him what she had done. He wouldn't tell me what he said to her but he warned me that she was going to 'pull something dramatic' to try to win over everyone's sympathy because she knew she had gone too far.
Take a bottle of pills, drive straight to the hospital, and everyone will feel so sorry for her that they'll forget what a shit human being she is. That game probably would have worked on most of the family, too, except for a medical condition that caused the drug to hit her system faster than expected. There are some that believe that she killed herself because she was 'depressed' but I saw her that day. She was just an evil woman trying to hurt people and couldn't handle getting called out on it. I think she started out that day believing I would be the one to try and kill myself.
But she's gone and I'm still here. I made it.
*image description - Pink background with the words 'Don't compare your life to others. You have no idea what they have been through. - Sam Cawthorn'
I've been giving a lot of thought to authenticity online lately and my eldest daughter said something today that really struck me. She told me about an article she had read that talked about social media making people feel depressed because their lives didn't resemble the shiny, happy stories they were seeing their friends post. This made me think about my propensity for keeping my posts/tweets on the light side and how that doesn't give the full impression of my life. The thought that someone could compare their life to mine and feel that theirs falls short somehow kinda makes me giggle a little.
The thing is, my life is not just all about me. I will happily discuss my anxiety, sensory issues, and problems with social situations but they are my story. I have a husband and 3 kids who do not necessarily want or need me to share with the world what may be going on inside our walls.
This is especially the case with Evie. There are a gazillion blogs out there where parents complain about how hard their lives are because their kids are autistic. This has created the ableist impression that disabled children are burdens and the parents must magically be saints for loving them. I do not ever want to contribute to that nonsense because that's what it is. I much prefer to post cute or amusing anecdotes that illustrate what an incredible kid she is. We do go through rough patches but I don't talk about them publicly. Not because I want to give people the impression that our life is some 60's sitcom kind of perfect but because she deserves to not have her difficulties broadcast to the world.
The other piece of it is just basic therapy for me. Sometimes the only way I can make it through the day is by finding some grain of positive in the middle of a whole bunch of yuck and focusing on it with all my might. I'm really not a Pollyanna (although I recognize that I may come across that way at times) but I just can't see the point in wallowing when I know that counting my blessings will help elevate my mood. I can't do it all of the time, and sometimes it's much easier than at other times, but I try.
While I'm sure that some people are putting on a false front for the sake of misleading people into thinking their lives are better than they really are, I know that many of us are being genuine. We're just not posting everything that happens in our lives.
I mean, seriously. Do any of you really need to know that for some reason the big toe on my right foot is suddenly sprouting a full head of hair? WTF is up with that even?
*Image description - green and black background with the words 'I cannot build a life worth living by pretending to be someone I'm not'. Image credit - Landon Bryce
Like many (if not most) autistics, I suck at the superficial. Small talk is difficult and I much prefer meaningful conversation. For perhaps the 542,370 time I have had a friend point out that sharing too much online can bring on badness. I know this intellectually but it doesn't seem to have an effect on my approach to online socialization.
I am Heart-on-my-sleeve This-is-what-I'm-thinking Gal and no matter how many times it comes back to bite me in the ass I just can't manage to be any other way. Oh, I'm sure I could with some discipline. I could start posting nothing but quick snapshots of popular interests but that's just not me. If I am going to interact with other people it strikes me as pointless if there's no actual connection.
I don't expect the world to care about what I'm thinking or feeling at that moment or what amusing thing my kid just said or what my favorite song is that day but it's all me. Not everyone will like me and that's totally cool. I don't like everyone and would expect no different. So while I may be doling out ammunition for the less pleasant types to use against me, it allows everyone to see who I am and decide whether I'm someone they want to get to know. I have made some amazing friends online (plus landed me a wonderful husband in the process) so the good has far outweighed the bad.
For me offering up a sanitized image of myself to avoid potential badness from others online would be like never wearing anything considered 'too revealing' to avoid possibly being raped. I'm doing nothing wrong by being myself and it shouldn't be my responsibility to prevent the bad behavior of others. If they want to behave badly they will do so regardless of what I choose to post.
So I will keep on keeping on. Those who like people like me can find me and stick around and those who don't can know to pass me by.
This morning, as I sputtered about one of my conditions making things difficult for me, my husband implied for perhaps the millionth time that he believed my disabilities were actually a blessing.
"Without them I think you would be arrogant and have less tolerance for people."
This cracks me up every time because I have been called a 'snob' enough in my life to believe that others see me as arrogant anyway, and tolerant? Ugh. Most of the time I feel like I'm The Most Intolerant Person On the Planet and it feels squicky.
This is because I have been told that my expectations of people are too high, too many times. To be fair, it's usually come from folks who behaved badly and were trying to deflect from their own nonsense but it makes me second guess myself nonetheless.
Don't be mean.
Do be genuine.
Don't be manipulative or play games.
Do be respectful of other people.
Are these expectations really 'too high'?
People, especially online, violate these expectations pretty regularly. Depending on the situation I may give a few chances but I inevitably end up walking away. Partly because those negative behaviors bother me so much and partly because I believe in the 'birds of a feather' bit. I don't want to associate with folks who exhibit traits that I wouldn't want others believing I possess. I am acutely aware of my propensity for black and white thinking but I also believe that we reinforce bad behavior by letting it slide.
So I distance myself and then I'm The Bad Guy. This creates a kind of perpetual inner conflict because I do try so hard to be good. I hurt for those who are suffering and I try daily to do things that will lift people up, even if it's only for a moment or two. I try to be kind and helpful and make people laugh. Is it wrong that I can't do these things for people who behave badly?
I know I'm not a saint but I try to make the space I take up in this world not suck for those I interact with.
But it can feel pretty crappy with this inner voice constantly whispering,"You're not good enough. If you were a really good person you would tolerate those character flaws"
Would I feel differently if I wasn't disabled? Would I just think I was better than everyone else and not care about being a good person? I dunno. I can't even imagine what it would be like but maybe that's just because I'm autistic. Ha.
One problem with being an autistic woman is that it can be very difficult to tell when something occurs because you're autistic or because you're a woman or if it's because of both.
'A woman's intuition' is a thing that most, if not all of us have heard of and, yet, we're often written off as 'hysterical' or 'dramatic' when we utilize it. Most of us have an internal alarm system to warn us when we're in danger but a lifetime of hearing that we're just being drama queens can cause us to ignore those alarms which can lead to finding ourselves in bad situations that should have been avoided.
I can't speak for any other woman out there but I know that almost every abusive situation I have found myself in had plenty of red flags pop up that I either ignored or excused away because I second guessed myself and doubted my internal alarm system. I believe on some level abusers know this and count on it. The abuse --> abuser's expressed remorse --> victim's forgiveness cycle just perpetuates it.
"See? I was wrong. They're a good person. I know because they feel really bad about it."
As an autistic, it is very easy for me to miss malicious intent because I simply can't comprehend it. Oh, I've had it explained to me a million times and I could list off the reasons I've heard given for it but my brain still can't wrap around it. I end up dismissing my inner voice when it tries to speak up on the matter because of this. "Whoa. That was really mean but why would they be mean to me? I must be misunderstanding."
Some people get off on hurting others. Some people get off on control. It's a thing. We know it's a thing and yet we let badness slide because we second guess ourselves. Why do we do this? Especially those of us who have had the unfortunate experience of finding ourselves in these situations more than once? Nothing makes me annoyed with myself faster than the realization that I have made the same mistake more than once. Fortunately most of the people in recent years that I have formed relationships with, whether romantic or platonic in nature, have been with good people. I don't think there are as many bad apples as it can appear sometimes but they sure do a lot of damage when they turn up.
As an autistic I am pretty good at spotting patterns of behavior but I think I need to streamline my approach to assessing potentially abusive relationships. I don't need to be kicked in the face multiple times to determine that someone is a facekicker. We all have the right to protect ourselves and I'm adopting a 'one strike and you're out' system from this point forward. I am very open and this gives abusers a lot of ammunition. Instead of hiding to protect myself I have decided to continue to be open and simply observe how people respond to my openness. If I mention I'm bi and they respond by telling me what shits bi people are? I know they're unsafe. If I mention I'm autistic and they respond by being condescending or gaslighting me? I know they're not safe. Instead of saying,"Why would they be mean to me? I must be misunderstanding." I will say,"Unfriend. Unfollow. Block."
My gut feeling has been right, time and time again, and I need to stop gaslighting myself and start listening to it when it's warning me.
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.
