What is Autism Acceptance Month? (Long Post)

This month my blog is going to play host to a wide range of posts focused solely on not just raising autism awareness for World Autism Awareness Month but also explaining why accepting autistic people is important too.

I’m a bit late to join the acceptance cause because I’ve been trying to rationalise my decision to be or not be that way. You see, I’m a person who has built the foundation of my whole world view solely out of facts, and I couldn’t get past the notion that seeing autism as something more positive meant that autism awareness would go backwards to the little awareness there was in the 90s and when many children, including myself, had their autistic symptoms overlooked. I kept repeating the same thing to people ‘if autism is not a disorder it would not even exist. You wouldn’t have a reason for why you are different and not be a part of a community of people who relate to your symptoms and you would not be able to share your similar experiences with them.’

I thought I was right in having this view because no one argued against it, but then I learned that autism acceptance doesn’t mean that we should stop treating autism. It’s all for that, but people who support acceptance don’t want autism separated from them, they don’t want it cured and they don’t want to be looked down at by society just because they have autism. They don’t want to be merely tolerated but accepted as a regular member of society, and they want people to keep in mind that autism is a real disability and needs to be taken seriously, even though people may seem on the outside to be functioning just as well as everyone else; it’s an internal struggle of anxiety over pressures put on them from other people who can’t understand they see and do things differently, confusion over what is required from them from those people, and heightened sensory processes (though they can also have under sensitivity to some senses). It’s not an excuse to be lazy or rude or for people to overlook inappropriate behaviours. It’s a neurological difference, a different way of processing and perceiving the environment and often a failure to connect to others in the same way two non-autistic individuals could connect with each other.

As for me I want to be allowed to be myself. I came into this world a child with no real desire to socialise and through pressures from parents, siblings and teachers I had decided to change because it seemed the normal thing to do. Though I’ve had some great experiences socialising I’ve also left a social encounter feeling stupid, angry, insulted and just confused, and even suicidal. It feels as though I was never meant to be social. I feel like I’m more of an inventor or author and people are my audience. I’m not meant to chit chat or come up with 1000 new compliments to tell a person so they will like me and in return give me at least half as many new compliments.

I’m meant to spend my days alone being inspired by my narrow special interests that I’m extremely passionate about that help me come up with ideas of my own for an art project, a new photographic gallery, another blog post, or more likely a science fiction story that helps to raise awareness about how society treats people who are different. I want to dedicate my time to books about science, or just a good escapist sci-fi story, philosophy or even just Marvel comic books. People think I can have all that and a social life but they are wrong – I cannot balance to the two. It will always be toward one extreme to the complete neglect of the other.

I don’t want people to call me a nerd as though it’s something I should be ashamed of. I don’t want my politeness to be seen as a weakness. I don’t want to be sucked into a world of memes, lolcats, and other forms of mediocrity you find on social networking sites. It took me a long time to realise that social networking websites are just like socialising. No one takes anything said seriously and it’s all for fun. Well, I don’t want to do that from the comfort of my own home. I want to discuss big ideas and be inspired by someone else’s ideas. I want to do that when I’m talking to someone face to face too but that’s not always possible, so I would rather talk about funny cat pictures offline rather than online.

I find the whole social world to be full of a lot of deceit. I can do the social niceties but why must we hide when we aren’t feeling so great? Many times when someone asked how I was I could have said I was depressed, and sometimes I have. The only point to socialising with people is about getting a closer bond to them and sometimes I don’t want that bond, sometimes I just want answers to questions and to load off a whole lot facts on people. Yes, there are times when I do desire talking people for the same reasons they do and can do so comfortably but then there are times when I feel I’m hiding myself from people if I can’t be myself and just talk about those things I’m really passionate about.

Now just because I say this and feel this way doesn’t mean I’m not going to be social or even play the social game. Sometimes I think it’s needed so we don’t all end up at each other’s throats. I can balance being an honest yet polite person…most of the time. Occasionally I end up saying something offensive without even realising it. I can jump from being under empathic to over empathic, again depending on my moods and my environment. When around people I’m usually overwhelmed by the closeness off them, their voices, the light, background noise and the sudden changes in my emotions after every word they say, so I don’t always get a firm understanding of their feelings.

At times when socialising people have shut me down when I try to talk about my special interests which can be the only subject I’m capable of knowing a lot about and thus capable of talking about at length and with any passion at all. These days I’m better than most with an autism spectrum disorder at briefly talking about a wide range of subjects, but it leaves me feeling empty.

I’m perfectly fine being on my own and going days without talking to people and sometimes I want to be around people more, but on my own terms. And I don’t want to be made to feel like I’m doing something wrong when I choose to be quiet.

I do have a small group of friends who I love but I’m always saying, thinking or feeling things that will risk that friendship and it when it comes to drama I don’t know how to handle it so go into avoidance mode. I basically only have the basic set of social skills I have now because I memorised them and whenever something happens that requires more social awareness and experience of handling relationship issues I hit a brick wall. I’ve got nothing so I basically say ‘I can’t do this, I haven’t got the social skills required for this’ and leave.

But I still have had a lot of fun times with friends and I’ve got a lot of fond memories, so there is always that small group of people that I will always hang out with, depending on my current mental state – and it’s more than being autistic that gets in the way of having a good time with them. I always find that having similar interests to people makes me more capable of saying anything to them and the likelihood of us becoming friends more. Mostly we all like the same music, though only one has a 90% music compatibility rating with me. That same person is just as geeky as me too.

There are some other strong traits of autism too. I function better or at all when I have a plan put in place for the tasks I do in a day or when going to an event, like a family picnic or seeing a live band. I have a natural ability to organise which comes in handy to control symptoms of ADHD and bipolar. I feel like I have more control over my mind too. I can blow up emotionally about little annoyances but I can quickly talk my way out of them and into a more rational state of mind. Is it really important to make such a big deal over this thing? It’s not usually and I just need to calm myself down and distract my mind, usually by choosing to spend time on one of many interests.

I have a close attention to detail which helps me as an impatient artist and band photographer. My best shots are close-ups of the singer’s face and capturing an emotional moment in their eyes, focusing on finger movements of the guitar players and patiently waiting for those ‘rock moves’ that get me such high praise. Drummer photos, usually taken from back, are always a challenge which is why I feel really satisfied when a nail that perfect shot of them. And I like to use real close-up lenses for them too.

I can detach my emotions from a situation when I know they can get out of control. This kind of gives me a flat affect about being told most bad news and I’ll be at loss about how I should react, except when it comes to bad news about animals. I feel like I’m more emotionally connected to animals and I’ve differentiated how I see my pets verse how non-autistic people see their pets. To them their dog or cat is like their child, to me they are my pals. I tell people my dog Bear and I run in the same pack. Sometimes I talk about him as though he is my Lord and I his servant. I even gave him a ridiculous long royal name: Lord Bertrand Ernesto Augustus Roxonbury. Meanwhile my cat Bluesy is my ‘roomie,’ Jazz is a grandma and Lyra, well, OK she is my baby but only because of her perpetual kitten look. She also looks like a rare endangered Australian species: a bush tailed possum mixed with a sugar glider and a Persian cat.

I think this ability to put logical problem solving skills before emotions is a great and useful trait to have. I still have a severe and at time debilitating anxiety disorder but I am able to eventually overcome those symptoms and think of a solution to my predicament at the time.

So, to me Autism Acceptance Month or Decade or Century is about accepting others who are different and allowing them to be that way. It shouldn’t matter if someone is introverted, not wanting to always be social or even wanting it at all. If someone is able to better function with routines and making repetitive movements with their hands, fingers, head, legs – then we should let them. As long as they are not putting anyone or themselves in danger and it’s not extremely annoying, then I can’t see why they should change. They shouldn’t be made to feel their behaviour is odd and therefore not normal. I’m a geek and proud. I also have what would seem immature interests and act far younger than my age. I’m not even talking about being 28 and acting like I’m 16. I’m talking about acting as young as 6 sometimes. It makes me take life less seriously without having to take a chemical to have such an experience.

Autism Acceptance Month is also for those individuals on the autism spectrum and their families who want to accept it. Not all can. Some people have children with severely debilitating autism who require around the clock care, and it’s up to those families to decide how they deal with them. I’m not even going to suggest anything. I have a lack of experience in that area and so this post isn’t directed at them. I do know people with severe autism who still don’t want to be cured and still don’t want to be seen as broken and inferior. I know one parent of a severely autistic boy in particular who has been very strong ever since he was diagnosed and didn’t blame anyone, didn’t try to take away his autism and just loved him for who he was. How someone chooses to raise their own autistic child is their own choice and I’m not going to get in the way of that or say they’re doing it wrong because I wouldn’t even know where to start with raising a child. All parents have a tough job but parents of autistic children have a real challenge on their hands. That’s a fact. And I’m sure even the parents who want to cure their kids are doing it out of love.

So, hopefully I’ve outlined what autism acceptance is all about and why it is important to see people with autism as not separate from their autism. They’ve had it since before birth or so early in age that it’s been with them for most of their lives. It has shaped who they are and every new experience is continually shaped by their differently developed brain. It has strengths along with weaknesses. Look at Jacob Barnett, teenage physicist or Temple Grandin; born severely autistic but through ABA therapy she has developed not just into an independent woman but as a spokesperson for the autism community teaching parents and other non-autistic people of the inner experience of the autistic mind, and she’s pretty spot on, although her visual mind is far more advanced than mine. And you know what she says? We are inventors and that the world needs us. Now, I’m one of the few autistic people that will still give credit to non-autistic ingenuity but there is definitely some truth in what she is saying. We with autism can get so passionate about an idea we become obsessed with it; we block out the world and all distractions and just get to work.

On Being A Selfish Person

I’m a selfish person. I must be – people tell me I am all the time. “You’re so self-centered,” “you need to think about people more.” My own mother said that. I mean the person who raised me thinks I’m a selfish person. She thinks I have a choice in the matter.

Fact is sometimes I’m not even aware about how much I should think about a person. I try my hardest, often after I realise I’ve upset them or insulted them beyond all forgiveness. I’m an honest person and don’t agree that people should hold things in or lie just so we can all better get along. I try my best to not be rude and if I’m actually aware about what I’m thinking about saying could be misinterpreted I’d rather say nothing at all. I’d rather just ignore the whole damn situation.

Most people respond more emotionally to me. I react with heightened and unregulated moods, but I’m for the most part able to analyze my own emotions, re-direct my thinking and choose my words carefully so I don’t hurt people too much. Or I just ignore the situation.

If people still get hurt by my somewhat Vulcanesque response then it’s their problem. I went to a whole lot of effort to not just vent my frustrations at them and I can do no more. I’d like them to completely detach their emotions using kolinahr and come up with the most logical solution to this little dispute that’s only happening because people are letting their emotions get the better of them.

Another thing is that I can get so absorbed in what we in autistic community call a special interest that we can completely be blind to what is happening in the world outside of it. It becomes our whole world and completely takes over our personality. Not in the same way a personality disorder does. It just changes a few characteristics around, like for example I might be playing my Batman video game for hours a day for a week and my hometown might just start looking like Arkham City. Or all I’m capable talking about are Marvel comic books and will relate almost every subject no matter how disconnected it is to it. I’m not even making this up. My whole voice, dress and mannerisms can mimic that of one of my favourite sci-fi characters without any conscious effort on my part.

Those interests become the center of our world and everything else is in the background or puts up a barrier between us getting to spend time on them. They become less important.

If you think this makes me a selfish person then fine, think that. I’ve worked very hard to build my empathic skills and there are still a few gaps. I do eventually get a basic idea of what someone must have been feeling and I learn from that and I try my best to adjust my responses based on that understanding. That’s also called emotional intelligence.

Theory of mind is when a person has a basic idea of what people will be collectively thinking about. All humans follow a pattern of behaviour and I think learning this pattern made it easier for me to gain a better theory of mind. People without autism or social development issues will have this inherit ability from a young age and be able to pick up on the feelings of others more and more as they grow. I wonder if this is where the whole ‘you know what I mean’ statement comes from. Because I have never understood what a person meant when they said it. However, I could tell they got impatient with me if I said I didn’t so I just said yes. Then when my mother said it to me it was more like, ‘come on, YOU know WHAT I MEANNNN!!’

I apologise to my mother for keep using her in examples but I must tell the truth. The truth was I was a very confused child who never quite understood why people got angry with me, and I was mostly scared into changing my behaviour. I may have been responding to what she said with exaggerated emotions when any other child might have not even blinked at her disapproving tone of voice. Bringing this up may help other parents with autistic children properly respond to them. We can’t just be brought up the same way as non-autistic children and there was hardly any education for this twenty years ago. It’s now known that certain words always make us feel threatened; saying ‘no’ is like a slap in the face. You might have well said ‘no, you little retarded monkey. My God, are you so dense. As if I would have said yes. Now go chain yourself back in the attic, you’re an embarrassment to be called my spawn.”

That might have been a slight exaggeration but I just mean we can feel threatened by fairly innocuous responses. When I say ‘no’ myself I utter it under my breath as though it’s a forbidden cursed word to use. I anticipate a challenge and when someone just accepts it I return my sword to its sheath. I still look on like a guard dog lowly growling to give a warning to not come any closer.

Socialising is an agonising business for me. I can’t usually say much after the greeting and if I do it’s an impulsive jumble of the latest subjects that has excited me. I find it difficult to make eye contact and talk at the same time or even at all. It really depends on my mood. If I’m a lot more hyper than usual I’ll probably make too much eye contact and bounce up and down on my heels, and won’t be capable of zipping my lip. My thoughts are even more randomised and it becomes excruciatingly painful to allow pauses in between talking.

I’m usually fine to just chat to people about my interests, or the news, if I’m actually going out and doing something, or my cats, but when someone says something unexpected which my oppositional brain just pegs as a good opportunity to show that I’m an individual with my own opinions, I might end up in the middle of an argument and the other person either gets exasperated and gives up or launches an offensive of their own in which in this passionate moment I will refuse to back down. Sometimes I will be impossibly to convince, even if my opinion is completely ludicrous. And yes, it has been. Basically, when someone is manic they feel like they are in a higher state of enlightenment and everyone else is just too stupid to get it. They’re just being unreasonable and deliberately disagreeing with you, refusing to open their minds up to greater ideas that challenge our conventional ways of thinking, and the laws of physics sometimes. There’s a whole lot more to it but I won’t go into it, and yes, I do become manic. I possibly have been while writing this post.

I can live with the arguments, even though they throw me off what I was going to talk about because I must be prepared for everything. I don’t do well with change. Yes, even such a small change as someone bringing up a topic or responding in such a way I didn’t expect. How dare they!

The social drama is where I really get stuck. It’s when people are angry enough to stop talking to me or having lasting negative feelings toward me. I might have personally insulted them, at least in their mind or I may have just…pissed them off. The only way I know how to get out of it is to explain the situation rationally. “Oh you thought I…no, that’s not what I meant at all,” or “I was acting that way because…” It doesn’t have the desired effect which befuddles me because I’m putting out factual information, without any feelings involved. I think the correct way to do it is say something like ‘man, you’ve been so good at putting up with me. Wow, you are strong to just ignore me and then be a complete passive aggressive bastard. Yes I was wrong and you were right. I suppose if I want things to work out I should just grovel on hand and knee for your forgiveness and essentially lie and say that none of it was your fault and it was all down to me – you know, the one with a goddamned social communication delay. How could I just miss those cues. I mean, it’s not like I’m autistic, or anything.” Woops.

Some sarcasm may have been used in the above paragraph. Oh my God, I can actually do sarcasm! Does this mean I no longer have the autisms?

Sorry. I’m venting.

I’m basically saying that I don’t agree with many social conventions, especially the one where I have to continually stroke a person’s ego just so they like me. I’d rather just go through friendships in a trial and error way. As a child I had no interest to be social, I was pressured into wanting it because people thought it would make me happy. It’s made me see that people are bullies, not willing to listen to reason, you must always agree with them even if you are smarter and think they can control you. That’s not all from one person. I’ve had good times with friends too. Early in my social development my skills were so poor I didn’t want to be more than a drinking buddy with people. But now I operate from a strict ‘Kiss and Make Up’ policy i.e I want to be able to maturely discuss our disagreements and not just go back to pretending everything is normal between us. I grew up having none of that until I moved out and lived with my sister. We apologised to each other and explained why we got so mad in the first place. Now I won’t take anything less. And if people aren’t willing to talk through our problems then I’ll completely close myself to them by not discussing any personal matters. I’ve been hurt so many times before and I’m just not going to risk getting hurt again.

For now, I’m happy to be the lone wolf. My interests keep me occupied and my strong will helps me be a rational person even when deep down my emotions are screaming out to be heard. The whole ‘willpower’ thing I actually borrowed from The Green Lantern film and is not based on any peer reviewed science studies. It basically helps me deal with my emotional responses.

I like having friends. I like having a good time with them but I think for now I’ll just have what I call a superficial relationship with them. The drinking buddy is back. I don’t really want to know someone enough to discover how much they irritate me because almost everyone does.

I know I’m not being willfully selfish. I have autism which means I have a bit of a wonky theory of mind ability and don’t always empathise when I should, but I’m not incapable of it. I feel guilty when I realise when I should have been thinking about another person more and I keep trying to do better. But in order for friendships to work both people have to do their part to let the other know that they care about them at all. You’d think finding someone with the equal amount of mental health problems would make this an almost symbiotic relationship but as it turns out it’s like arguing with yourself. It’s like that evil voice in your head that tells you you’re no good that you try your best to ignore, but when it’s from another person you just feel like giving into it. You’re right, I am selfish. I’m horrible. I care only for myself. So, why do you even like me?

Is there any point for me to keep trying to make friends when I keep being reminded time and time again that I don’t always care about them? Seems pretty unfair to keep putting myself out there when I can’t reciprocate enough emotional understanding they require to actually feel loved.