8 Years of Autism Awareness – A Reflection

This Sunday will mark my 8th Autism Awareness Day and Month. Originally it was to bring awareness of the very broad spectrum of autism and to push for more services for both autistic children and adults. Previously, autism was thought as a condition that severely affected children and was often confused as an intellectual disability. Now a vast majority of people know that it can be either mild or severe, and that those mild symptoms can still be impairing. Doctors, parents, teachers, siblings and autistic individuals have all taken part to raise awareness. Doctors and scientists have shared their increasing knowledge through research which has helped show autism as a real neurological difference and has explained much of the behaviour through science. Teachers, parents and siblings have shared their experience with taking care of someone with autism, but autistic people have given real insight into their everyday experience.

Every year on Autism Awareness Day I’ve shared my own experiences and through this blog I talk about my day to day life with autism, my struggles with interpersonal relationships and a detailed breakdown of my other symptoms.
I started this blog as a way to explain my experiences to family and friends, as I was not able to tell them these things face to face. Then parents of autistic children told them I helped them better understand what their child goes through, so now it’s become a portal of self-advocacy with a strong emphasis on making neurotypical people understand the autism experience, as well as what it’s like to live with ADHD and mental illness.

Eight years ago I was a very different person to how I am now. People who have only known me for a few years would not even recognize me from back then. I could not have a conversation with anyone. I was not aware that some of my behaviour could have been considered rude and when confronted about it I just thought people were overreacting and if they interrupted my routine I would have lost it at them, and then blamed them for not knowing that’s how I would have reacted. I wouldn’t initiate conversation with anyone. I didn’t really want to. Just prior to my diagnosis I had very severe social anxiety. My mind would freeze up when I sat with a group and though I may wanted to reply my mind was completely blank.

Post-Asperger’s syndrome diagnosis my social anxiety dissipated because I had a reason to why I was so different and I was fine with it. I didn’t worry so much about fitting in and I stopped trying to be like everyone else. I no longer envied them. Even when people made fun of me for being a nerd, I felt good that I didn’t have to go with the flow, what I called ‘collective consciousness.’
It took a couple weeks on Ritalin to make me want to talk to people though. It enhanced my empathetic ability and at the same time an online forum full of people with ADHD were teaching me more about being empathetic. Some of those posts would originally start out really hostile but by the end the more higher functioning members would be able to explain why people reacted like they did and that we need to respect differences of opinion, and always keep in mind how our words might impact others. It’s something I always noted and now it’s my default reaction to any type of news article I read, the inevitable flame war in the comments section and even how I perceive the political opposition (mainly conservatives).

Being on Ritalin made my mind feel so clear and it slowed down the noise in my brain enough that I had time to work on my social skills. I learned everything from physics to advance math and worked on a science fiction novel. The energy and clarity of mind it gave me allowed me to learn something new every day.
But then the side effects came in so I had to stop taking them, and some autistic symptoms once again became hard to manage but the social skills I learned in that time stayed intact.

In the last 5-6 years I’ve made the most progress in my social skills. It was mostly through higher functioning autistics basically revealing to me social customs and social hierarchy, most of which I ignore. I decided to learn and put into practice social skills that were polite but not ego stroking. I skipped over any rule that felt unnecessary to me, particularly the amount of lies you have to tell people to make them feel good about themselves. If I like what you’re wearing I’ll tell you, but I’m not going to congratulate you for dressing yourself like you’re a 3 year old.

My social skills are now advanced enough to have conversations with people in my very jumbled way of talking. My brain often gets stuck so conversations I start do not last long. I don’t really like talking when I hear myself talk. When people go out of their way to prove me wrong and their better conversationalists than me I just feel humiliated and really never want to talk to those people again. I mean what is the point of trying to make a person who can’t even speak one fluent sentence or even organize a sentence in their brain feel bad? I’m not giving all that effort to just be looked down on. Those people are not worth my time or respect. People like that have in the past made me just want to stop talking to people but I know there are some decent folks out there.

I’ve had to go back to reevaluating my social skills lately. I’m finding I’m getting hurt by people when it might not be their fault. Although, people use so little tact these days that they hardly notice when they’ve been rude. At times I wonder why I still bother to perfect my social skills when the rest of the world is losing theirs. But this is about me and becoming the best person I can be, even if people are becoming like the old me. Not because they have a developmental disorder either, but because they live on social media the lack of face to face engagement have lost much of that inborn empathy, not to mention the ADHD symptoms they mimic from being dependent on digital technology.

I don’t socialise that much these days anyway. When the opportunity arises I’ll take it but I’m not actively looking for it, kind of like when I was a kid. My latest ‘friends’ have just seemed to want to get something out of me and most other people want more of a take and take relationship. I do all the giving but get nothing in return. I don’t stick around those people for long.
I don’t feel connected to a single person on the Earth. I never have. There’s always this invisible wall between me and people. Whatever feeling people get from being with someone else I don’t feel it. A lot of people in the autistic community feel the same way. I’m not really saying that as a downer, more stating a fact.

As for autism awareness, well it’s time we moved on from awareness into acceptance. What that means is autistic people should still get treatment and services but they need to be included more in society and not forced to change so people can be more comfortable around them.  Autistic people have such intense focus on their interests that they can learn expert knowledge about them in a short time, and their logical brains which seem to give them a better understanding of technology is why so many employers encourage them to join I.T. The artistic autistics like me though find it harder to have our skills appreciated. I’ve been able to go pretty far in my photography. I started out as a fan who wanted to take photos of his favourite bands and then I got free access to some big shows and got to hang out with the bands. Now I’m a protest photographer which means I feel less nervous about going to protests (I don’t really have to chant words while working). I’ve been focusing more on story writing and my ADHD and my lifetime love of film has led me toward script writing. So, I can also be of some use even if I need a calculator to do math.

There are other behaviours autistics need to do in order to be able to cope. Stimming is one such thing. It’s anything from hand flapping to pacing to making noises. It may make people feel uncomfortable so parents and teachers may want to discourage the behaviour but it’s actually a good way to calm anxiety. I even do a bit of hand flapping when I start to feel anxious.

Our intense focus on interests should be encouraged too. Many us of have turned our interests into a career. It’s also a good way to ward off feelings of depression and be less focused on the things we struggle with. When I’ve returned home after having a disastrous social experience it’s good to know I can soon forget about it by focusing on something that makes me happy or that I’m actually good at.

So, when you hear about autism awareness in April ignore all the charities talking about how terrible autism is for families just so they can get a few bucks out of you, and instead focus on articles that talk about inclusion of autistic people and accepting them into the wider community. Because we are people just like you.

Spy

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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.

On Autism and Empathy

For many generations there has been a terrible notion that people with autism lack empathy. I think this comes from the old way of thinking that people with autism couldn’t feel emotions. Fortunately, that is no longer the most common held belief but still people and even some scientists hold onto the belief that people with autism can’t empathise.

When it comes to a human brain things are just never so straightforward. When we are infants we all do lack the knowledge that children, adolescents and adults all share at the appropriate times. For those of us with a developmental disorder like autism we may lack some but not all of the information. Throughout the years we may have picked up a tidbit here and there and gained further understanding of other people. This is often not picked up intuitively but had to be told to us by another.

So it’s true that people with autism lack empathy in a way but not completely. They are not incapable of it or learning it but may need to be told gently when they seem to disregard a person’s issue why it’s important to feel sorry or some reciprocal emotion towards this person.

Think of it like them having an ability to empathize that is like an incomplete cross word puzzle, even with half of the answers written in. You need to be there to fill in the gaps for them, and usually when you help people answer questions they don’t know it’s not screamed at them or delivered coldly.

The mainstream perception of empathy is a very superficial one too. It’s mainly about caring for others, understanding when and why they are hurting and expressing this verbally and through such loving acts as hugging. Anyone who is seen to do less than this is immediately thought to be a very self-absorbed person and by choice is not thinking about others at all.

There are really three types of empathy: cognitive empathy, affective empathy and expressed empathy. Cognitive empathy is the ability to read non-verbal body language to get an idea about what is going on in the mind of another person. This is an area people with autism are most deficient in. Research has shown that when a non-autistic person makes eye contact with another person the ‘social area’ of their brain lights up but this does not happen in autistic people, meaning that something different is happening in the brains of autistic people compared to the general population.

People with autism have difficulty reading facial expressions, gestures and tone of voice as well as more subtle hints of a person’s emotional state expressed verbally. Not everyone with autism will have the same level of impairment but there will be some impairment to warrant a diagnosis. They’re also not incapable of eventually learning to read body language and intuitively gouge what a person may be feeling through being told by more socially aware friends or through trial and error.

The second type of empathy is affective empathy which has to do with understanding when someone else is in pain and feeling their pain emotionally. This is probably the type that autistic people have the least trouble in but like I said before each autistic person is at a different level of how much they can empathise.

I can recall being a child and hardly feeling any affective empathy towards anyone, even with my few friends and family members. I barely made any change until my early 20s when I started to work on my own social skills and through the use of ADHD medication. At times I did pick up that I wasn’t thinking about people when others were. I’m a very practical person who has a sometimes irritating way of making connections out of two very unconnected subjects and making it seem like an incredible epiphany every time. Often when overcome with the joy of these ideas I can neglect to think about how my words will affect other people and they will surprise me by either calling me selfish or giving me the impression that what I said was very insulting. If you’re a fan of The Big Bang Theory TV show then think back to when Sheldon Cooper revealed to Penny what ‘just fine’ meant; basically he revealed to Penny that her boyfriend Leonard told his friends about their sexual encounter last night, which both parties reacted to rather negatively and Sheldon was left there with the sudden realization that he may have overstepped a line. Sheldon is course an exaggerated character with Asperger’s syndrome.

This brings me to another good point. People with autism are often accused of being horrendously offensive yet will be confused as of why, and the person on the other end, still fuming, will hardly explain this to them. It leaves them confused and angry at the other person for being swept away by their emotions for days while trying to work out how what they said could have led to this type of oversensitive reaction. They are often more systematic practical thinkers rather than reacting with emotions. But it’s not hard for them to feel the emotions of other people – quite the opposite.

The Intense World Theory suggests that instead of feeling little emotion autistic people feel too much and this overloads their brain leading to a very emotionless exterior, while inside they are screaming. Although eventually all this extra stress will result in a brain going into a type of safe mode which stops all the negative feelings from being experienced. It’s like when in depression you end up feeling numb.

To better understand this I need to talk about my own personal reactions to other people’s emotions. Usually when my emotions don’t match a person’s own even if it’s a positive emotion like joy, I will be under distress. I might be annoyed or irritated just by the overload of the person’s loudness and their energy. When they are angry I feel either threatened or frightened even if they are not angry at me. If a voice is raised it is like I am being constantly targeted even if it’s not about me. It’s just the emotion coming out of the person and the way I experience it.

The whole experience makes me fairly poor in face to face confrontation unless I can be louder and more threatening than that person, otherwise I’d just avoid the situation as long as possible. Most of the time I can’t express any personal information about myself verbally, and I have difficulty getting any words out in the right order and not tripping over them.

The third type is expressive empathy which I’ve already sort of gone into. People think that people who will tell you they are concerned for you are the only people that care, but this is not always true especially when it comes to autism. We just have a difficult time knowing what to say even if we’re told what to say. Some of us might be able to do that more than others; it all really has to do with how much emotion we are experiencing from the other person.

For me, I get more of an emotional reaction from the type of word used that people usually use when they are under a lot of stress already. And it’s not simply the meaning of the word but how I personally relate to that word, like if someone called me selfish. That word stretches across my whole spectrum of disorders but not as much as autism. I’ve been told during moments of great stress that I wasn’t thinking of others. I remember calmly explaining to someone that it would take me awhile to deal with this sudden change in plans because it takes me a longer time to adjust to change – and I was of course told I was selfish and need to think of other people more. You would think if I was capable of it on an intuitive level that I would. Another point that is going a bit off topic is that I can control reacting emotionally to people after being hurt by what they said and when communicating online I can take my time to respond calmly and rationally, yet the response I get it often a passive aggressive attitude ot just untethered hostility. I suppose if people think if there’s nothing wrong with their social skills and emotional regulation they wouldn’t have to just as much effort to choose their wording as delicately as I do.

And just because I can’t always express in words how much I care for people when I truly do it doesn’t mean I don’t try to show it in other ways. I will often be first to put my hand up to help people out, even when not asked for it. I give them gifts such as drawings and maybe if I see something in the shop I think they would like I may buy it for them.

I didn’t explain much about my affective empathy. Usually when I’m with one to two or more people (what I call ‘in the moment’) I will not be able to empathise as easily when the situation calls for it, even when everyone else in the group would. I would consciously know I should be but I’m not feeling anything. Eventually, when I‘m left alone and given many hours to days or weeks to think about it suddenly it hits me. Or I might be too preoccupied with my thoughts and interests or under a lot of stress because of symptoms of mental illness and I’ll just overlook people’s feelings and they will make me aware of the fact in a very harsh way, and still lost in self-reflection that I continue to fail to think about them I will erupt with as much anger, and only when I have time alone to rationally think over the situation will I realise my error.

I don’t always need to upset people to become empathetic though. Sometimes it just takes a shift in emotions from low constant thoughts of self-doubt to high states of over confidence and within this I find ways to better empathise, even over empathise with people and take it upon myself to make other people aware of their apparent lack of insight into another person’s situation. But this has nothing to do with autism and is more just a personal thing. Well, it could have something to do with it. It’s very hard to know sometimes.

If I’m in an environment that’s less chaotic and fast paced as most social situations are then I can take my time to see from another’s perception. I get most of my education from TV and film especially the over emotive ones because it’s shown in such an obvious way, sometimes it’s like they are explaining the emotional states of the characters to kindergarteners, or maybe I’m just better at picking up on it now compared to how I was before. But I seem to go for hysterically over emotive storylines in science fiction shows such as Caprica and the Stargate franchise, or TV drama such as Parenthood and even Wonderland, though to be honest some of the NT social issues in that show seem to grate me. I remember when I started to watch Parenthood and I just thought why do these people lie so much – you can plainly see that they want to tell the other person the truth and it’ll be better if they did – so why lie? It relieves me when Max’s parts come up in the show, but then of course his family seems to overreact to the socially inappropriate things he says. What I see is a teenage boy that is willing to share with people and excited to be given the chance to do so, yet he gets shut down because of the content of his subjects and the abrasive way he delivers it.

I do care and empathise with the people that I know really well although I don’t often show it through expressive empathy. I’ve gone out and hung out with people when the environment was particularly uncomfortable to me and the event in question wasn’t very interesting to me. I just wanted to be there for the people I loved. When I’m under too much stress or preoccupied in other ways then I’ll probably not be as willing to go out, but I’ve always done things to please people even when risking my own mental health.

To be honest I get the impression that I still have major impairments in my ability to empathise compared to other people with autism that I talk to online. I often do put my interests and wellbeing in front of people. I often see what I can get out of a social situation without giving the other person much thought, so I suppose I have a lot more training to go through before I can confidently say that I do have about as much affective empathy as most autistic people that are just as high functioning as me.

I think I have good cognitive empathy when it comes to reading facial expression and tone of voice. My ability to look for connections or patterns helps me out a lot when it comes to understanding human social behaviour. There are patterns everywhere and if you follow it you almost have a psychic ability to know what people will do next. I struggle to notice gestures and subtle hints in words though, and sometimes I think they are being used when they haven’t been. When it comes to understanding the mind of others I am pretty hit and miss, I think that means sometimes I guess correctly and other times I guess incorrectly or completely fail to notice that people are having a different opinion or reaction to me at all.

Expressive empathy is where I fail the most. When near people who are under great stress I have flat effect and a blank mind. I use avoidant behaviour to overcome the awkward and distressing feelings. But I do show people I care through doing something practical to help them or at least draw them a picture.

So, there you have it. People with autism do in some ways lack empathy but through life experience and self-training they can build upon their skills. And even when they think they have an average to high skill in it there might be times when they completely fail to empathise at all, and may never quite get the expressive part down. But at least you know now that they still do care.