Guest Post - On Autism, Social Skills And Acceptance

This post is by my amazing daughter person Noah Grace. 

I am in awe of them. 

Enjoy. 

Title: What an Autistic Wants You to Know About Social Skills

Hello everyone, my name's Noah Grace, and I am autistic. After a period of research and self-diagnosis, I was diagnosed with Asperger's Syndrome (the label that is used when you are able to speak before the age of 3) a couple of months after I turned 19. Since then, my world turned upside down in the best possible way as my perceptions of myself and the world I live in changed dramatically. I think about life as an autistic person a lot, and I want to share some of these thoughts with you today.

For those who do not know much about autism, it is neuro-developmental (this means the origin of the condition is in the brain, and that it affects your developmental milestones like talking, walking and caring for oneself – these are often expected to come late or not at all, or inconsistently, but talking for me came early). It is lifelong, cannot be cured as it is not a disease, and comes with many challenges in the areas of speech, language processing, sensory processing and social interaction. It is good however to be aware that of the difficulties and challenges autistic people face, many are not necessarily caused by autism itself and I will be talking about that to some extent in this post.

The root of the word autism comes from the ancient Greek for "self". The condition could therefore be described as "selfism" - the disorder of being too focused on the self. One could say that our problem is that we are too focused on ourselves to realise that we are not normal, too selfish to care how our abnormality affects others, and we should be shown how abnormal we are so we can change our weird behaviour, follow social rules better, and thus have a better standing in society. If we can't change our behaviour ourselves, we should be trained to act differently.

(Yes, that is actually what a lot of people believe, and act on. We are bullied and abused to this end, as people think that if we are treated badly enough, we will change. There is a great deal of money being made right now and a great deal of harm being caused in 'therapy' that attempts to condition autistic people away from acting autistic. You can read more about that at the end.)

For me and many others, the self-absorption and disconnection from other people and the outside world is not actually the source of what's different about us from other people. It is largely a coping mechanism for the pain - both sensory and emotional - we experience while living in this harsh and intense world. If any non-autistic person spent a lifetime being mistreated, ignored, misunderstood and their sensory systems given a constant onslaught, they'd probably disconnect from the world too.

Spend any extended period of time with an autistic person and you'll find we care deeply, extraordinarily, about things outside of ourselves. Many of us adore animals. Plenty are activists, using their words to promote a better world. Lots of us have close friends and are in loving relationships, or want to be. One of the diagnostic criteria is that we have strong, abiding interests called "special interests" in a topic or object, sometimes multiple. We are not really that "selfist". We want to interact with the world in our own way, we want to express our feelings, we want to do our thing. But in a world with so many barriers in front of these things, few people actually help empower us to do so, instead deciding to believe we are incompetent, unfocused and uncaring.

In this post, I mostly want to discuss my perspectives around social skills, or social rules, or social obligations – there's a lot of names for it. These are the guidelines for carrying yourself while out and about around other humans. Some are unspoken, you absorb them from watching (you see the way your parents interact with others) and some you are specifically taught, whether you are autistic or not ("Say please and thank you".) One example of a social skill is the skill of "small talk" – little snippets of conversation you have before you have a proper conversation, or what you say to someone you don't know well to ease the awkwardness… I'm not totally sure actually, I'm not the best person to ask…(!)

One might be tricked into thinking I can engage in small talk, if you only watch me do it once or twice. Truth is, I find it very difficult to have a conversation without meaning. Did someone bring up the weather? I'm pleased, because I actually care about the weather and find it to be an interesting topic. For a lot of people though it is quite boring. They will mention it in passing before moving onto a more pressing topic, whereas I would actually like to discuss it for a while.

You might say to me "It's awful weather today, isn't it?" as a lead in to another conversation, but in my apparent enthusiasm for amateur meteorology (and my relief that we are on a topic I know something about), I won't notice. I'll say, "Yes, it's very rainy! It's not as cold as it was yesterday though. Today it's 8 degrees which almost feels warm compared to the freeze-ya-balls-off temperatures we've been having lately. I really hate those. I wonder what the average temperatures for this time of year actually are? I'll Google it in a minute. I don't mind the rain as long as it isn't really cold or I have a big coat on, which I do. It doesn't have a hood though. Sadly, I don't have an umbrella - I left it on a train in North Wales - so my hair will just have to get a bit damp." 

I generally don't get that far, because in a break between my sentences, the person will change topic. For me, the person who has plenty left to say about the topic, it feels quite jarring. 

As you can see it is hard for me to use my words for anything that is meaningless. Unless I feel comfortable, I tend not to change topics at all in a conversation, and will just carry on talking about what interests me about the topic until my conversational partner changes it. I will try to actually engage with someone's "how are you?" or "dreadful weather isn't it?". It goes against my natural way to communicate to say something I don't have any investment in. And yet, as my mother, the owner of this blog site knows, if you get me comfortable and on my own, I might tell you a whole manner of things that sound almost completely random and meaningless, with no connection to each other. But if you know me, you know that they aren't. You know that I notice small details, little patterns, small events of my day, little sounds, little songs, little phrases and that to me, they feel like everything. If I share them with you, it indicates a good deal of trust.

When I talk to someone who is not aware of my diagnosis, it feels like I am trying to keep up an illusion of normality, because to show autistic traits, especially when someone doesn't know you're autistic, is to be… is to be weird. rude. stupid. crazy. annoying. To be written off, in someone's eyes. Which of course, I don't want, because I would like others to believe I have something to offer my peers and general community. But for me to try to appear non-autistic is as difficult as an apple trying to appear to be an orange. There is just too much I cannot fake. Too much slips out. There's too many social rules I cannot keep in mind all at the same time.

When I'm talking to someone aware of my diagnosis, who also isn't bothered about me keeping up the appearance of some of the more arbitrary social rules, I have a much better time. I can come away feeling socially fulfilled instead of confused and anxious, with damage to my self-esteem.

The thing is, I do care about following some social rules. I don't want to say something upsetting to someone, for example. I want to think carefully before I comment on someone's appearance, or anything else that could cause offense. I want to consider the setting I am in, and not say something sensitive I might have otherwise said if I were somewhere else. I don't wanna embarrass someone on purpose. All these social rules that avoid other people becoming hurt emotionally and physically? I do care about those. I don't want to hurt anybody, and if I do hurt someone, I will apologise, demonstrate that I know which actions or words were offensive, and that I won't do it again.

However, there is something that I have started to learn. I care about not hurting people, but I see the difference now between someone being hurt by me, and someone being confused and offended by my unapologetic existence as an openly autistic person.

Some of the things that offend people without actually hurting them, that I do, are as follows:
- not making consistent eye contact, or none at all (it feels so gross)
- fidgeting or stimming (stimming is short for "self-stimulatory behaviour" – not as rude as it sounds, I promise! It is repetitive or specific actions undertaken to help us regulate our sensory systems – and because it feels nice. Some are painful and harmful like headbanging or hitting, and should be avoided, but even these have a purpose. My favourites are flapping, rocking, dancing, wiggling, playing with my hair, scratching (a harmful one that I'm trying to stop doing) and singing silly little songs. More about stimming at the end of the post.)
- not asking further detail out of people when they offer information to me. It's not that I don't care, I just forget that you are supposed to do that. If you know already that I am interested in the things you say, please tell me as much information as you like! You don't have to wait for me to ask!
- talking for a long time about one thing, or zipping around between different topics very quickly
- telling them things which sound pointless and uninteresting to them even if it really matters to me
- giving short, blunt responses so it sounds like I'm not listening – I am listening, I just don't have the energy for longer responses but I still want to hear what you are saying
- doing something else while you are talking so it looks like i'm not paying attention, even though this actually helps me pay attention
- if we only just met, not asking you questions about your life or trying to find out things about you
- not talking at all if someone i do know isn't in the room
- taking the things people say literally

None of these things are actually doing anything to hurt anybody. It is only hurting people's perception of normality and the necessity of social obligations. If they wanna think I'm dishonest or lying because I don't make eye contact? Let 'em, I'll carry on prioritising not feeling the intense physical discomfort of eye contact. If they wanna think I'm rude instead of acknowledging that I find back-and-forth conversation hard and I'm trying my best? Fine. I don't prioritise trying to influence someone's opinion of me, and apparently, this is wrong. Apparently, I'm supposed to care more about what people will think than about keeping myself feeling comfortable and happy, and I used to, because I was bullied into thinking I should – but I don't anymore, definitely not nearly as much as I used to. 

What's more, I am now aware that social rules that prevent some people being offended often rely on others' feelings and boundaries being ignored. For example, if someone touches me casually on the arm during conversation, that is seen as OK under society's rules but personally it makes me feel really uncomfortable and gross, especially if I don't know the person well or wasn't expecting it. If I show discomfort and tell them not to touch me, I have violated the societal rule of not causing a scene and I'm the one in the wrong, even though they made me feel uncomfortable in the first place! I know now that this is messed up! 

This rule meant that I thought I had to put up with many more horrible excursions over my boundaries, and some really awful stuff happened to me over the years. Lots of social rules are bad and privilege some people over others, and allow them to get away with doing bad things. It is considered wrong to bully people, but if someone is acting weird, that's not considered bullying, its considered "for their own good". Small children being forced to hug and kiss their aunts and uncles is another example of one of these bad social rules. We don't have to follow these, in fact, we should challenge them publicly until they aren't rules anymore.

I spent a long time being shown that my natural way of being is wrong and must be adjusted to be 'normal' and do what everyone else does. I know now that it's not my job to help people avoid having to experience difference and diversity in human neurotypes and behaviour. If that means I have 'bad social skills', then fine, because keeping the status quo is not something I want to be good at! It is important to me to state that autism awareness is not truly awareness if people will only accept us when we have been taught to act like them, or if we can't be taught, are hidden away so we don't inconvenience anyone. It should not be give, give, give on the part of autistic people. The process of awareness and acceptance is much more take than give, which people don't like to hear but it's true. It is also true for other marginalised members of society. I'll explain what I mean by that now.

This is the give - I do think autistic people should learn a bit about social skills, especially where it comes to not hurting other people, and about not following rules that are harmful, but this is the take. Even more importantly, non-autistic people should learn about us. They should learn from our own words, typed, written, pointed to on a letterboard or spoken – not just from so-called experts. Experts and professionals often show the same biases and prejudices that laymen do about autism, and can't always be trusted to have our best interests in mind or educate about us properly. Charities should also be treated with suspicion until you can divulge their motivations – are they trying to raise money to cure, prevent, 'treat' or find the cause of autism? Do they focus more on the suffering of non-autistic parents than on autistics themselves? Be very very wary if so. The American charity "Autism Speaks" is an infamous example.

Non-autistic people should make the effort to learn about our body language, to learn about our sensory systems, to learn how we think, to learn about the ways in which we naturally communicate. They should learn about echolalia (repeated speech, other people's words, slogans, etc and repeated noises, a real source of fun and effort to communicate for a lot of autistic people.)

They should learn that for an autistic person to not speak is not the worst thing ever actually. Different is not bad.

They shouldn't label us as high-functioning or low-functioning, they should learn that autistic people's abilities and difficulties run on a rich and varied spectrum rather than a capable-incapable binary. This is much more respectful to autistic people as a whole. The saying goes, "once you've met one autistic person, you've met one autistic person", and it's true. Even if an autistic person cannot talk or indicate they are listening in a typical manner, don't underestimate them and talk about them thinking they can't hear you. Don't force someone you consider "high functioning" to do things you think they should be able to do.

Non-autistic people should meet us on our level, instead of acting superior and like the standard, like they are normal, like they are more human than us. Even if a non-autistic person doesn't intend to come across like this, their own body language, vocabulary and tone can betray these less conscious biases. Just because we struggle with interpreting tone and body language doesn't mean we don't notice if you're patronising or belittling us, and it still hurts. A non-autistic person should never talk to autistic adults like we're children, no matter what "mental age" they think we have.

 I think society and the world at large is richer for having autistic people and our differences in it. It's better for me to be myself, not just for my own health - it allows other people to be exposed to things that will open their mind and help them think differently not just about autism and autistic people, but about society in general.

I openly and deliberately break social rules these days. I wear builder's ear defenders – you know, the ones they wear when using a pneumatic drill – because traffic hurts my ears, and I'll explain why to people if they ask me. I dance while walking, I run around excitedly like a five-year-old, I sing quietly to myself in shops. If a noise is hurting me, I'll cover my ears. If the light is painful, I'll cover my eyes. I scribble in a notebook while people are talking around me, and still take in every word and occasionally take part in the conversation. I turn down invitations, citing sensory overload as a reason. I fidget and stim and rock back and forth and wiggle. I tell people I'm autistic, instead of playing the pretend game. I try very hard to be myself, and it's tragic that so many of us are in the position of having to try to reclaim our own identities, but here we are. I'll keep trying my best.

I asked a friend of mine, Rose, who also has Asperger's, some things she would like me to add to this blogpost, of her perspectives of some things that are difficult to do with being autistic. She typed this directly herself, here's what she said.

"1)    Often in a workshop or in a simaler situation I might take bit longer doing stuff or do things a bit differently. I find it being really uncomfortable being in a workshop (for example the wood and metal workshop at the uni i am currently studying at) the main reason is the machines I find them very intimidating. When other people get on with doing the work I will struggle so this will lead me into being a little slower.

·         This would lead people to think I don't get it so they would patronise me (which I really hate) and in the end it makes me feel more stupid. I am a human too! 

2)    I feel anxious quite a lot in mostly normal situations (traits usually to come with Aspergers is Anxiety, Depression and OCD) I tend to tell a soeone who is with me that I feeling anxious because that makes me feel better sometimes. But sometimes when I tell some I feel anxious they would think im making it up for attention but im generally am really anxious and this doesn't help the situation.

3)    I find conversations over the phone really hard to process because as much as I don't really like speaking to new people as well at least I be able to see their reactions and stuff. I don't think this is all the reason why I don't like speaking to people over the phone is just one of the reasons. I will not leave voicemails no matter it is too even if it is my own mum!"

She makes a good point about how anxiety and other mental health conditions can come with autism that I forgot to cover in the main body of the post. It is important for non-autistic people to remember that this is not an accident or coincidence. When we are treated badly for being autistic, we are more likely to have bad mental health. We are not just more naturally susceptible to mental illness. Society at large with its social rules that enable our denigration and abuse is more to blame than our neurobiology.

She also talks about some specific situations that she struggles with, even if they are seen as easy for other people, and how some people react to it. Please take to heart how belittling she finds this. Even if you don't know whether someone is diagnosed with autism or not, if they are struggling or doing something more slowly than you expect them to, be patient and understanding. You don't know why someone might find something hard unless you actually try to understand instead of just getting frustrated with them. And sometimes… they don't actually need your help thank you very much! Just let 'em get on with it at their own pace.

 

If you read this far, thank you for trying to take in these perspectives! I really appreciate it! Here are some other perspectives and some further reading, if you want to find out more about autism and other issues I have touched upon in this post.

http://www.autism.org.uk/about.aspx - The National Autistic Society has a lot of information and resources for autistic people and their families. This page has lots of useful links.

https://www.theguardian.com/society/2015/mar/20/autism-does-aba-therapy-open-societys-doors-to-children-or-impose-conformity About ABA therapy, a commonly used type of 'treatment' for autism (I say 'treatment' in quotes because it is not an illness)

http://www.wikihow.com/Tell-if-an-Autism-ABA-Therapy-Is-Harmful More about how to tell if a therapy is doing more harm than good, and how to tell whether its aims are realistic or abusive.

http://www.wikihow.com/Interpret-Autistic-Body-Language A quick starter on how to try and understand what an autistic person's body language is telling you. Every autistic person is different and there is no one-size-fits-all but this page has some great messages. Method 2 Number 3 really made me smile, because I recognised myself so much in it and was happy that someone else realised that we are often so deep in thought.

http://www.bbc.co.uk/news/blogs-ouch-22771894 A brief introduction to stimming

http://what-is-stimming.org/ A very long list of possible stims! Some of them are harmful stims, most are harmless - I find reading this list and stimming along very joyous!

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html some information about sensory processing difficulties – a list of the myriad of symptoms one can experience and what senses can be affected.
https://spectrumnews.org/features/talking-sense-what-sensory-processing-disorder-says-about-autism/ an article about what the link between autism and sensory processing difficulties could mean.

http://www.friendshipcircle.org/blog/2012/04/18/what-you-need-to-know-about-echolalia/ Info on echolalia and its two types with its relevance to communication. This is written about children but can be extrapolated to adults too. There is also a from of echolalia that is called scripting, where you think of, or come up with, or have a vague idea of what to say in situations in advance, and then repeat it when you are in that situation. It is sometimes more subtle than the other two forms, people might not be able immediately to tell that you are scripting. More on that here: https://musingsofanaspie.com/2014/10/09/echolalia-and-scripting-straddling-the-border-of-functional-language/

 

https://themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/ An explanation of what is meant when we talk about "the autism spectrum" as opposed to using functioning labels to try and describe somebody's traits.

Here is some info on different types of non-speaking communication used by autistic people. There is alternative augmented communication, rapid prompting method, facilitated communication (mostly discredited, but sometimes still used), the local sign language in their area (regardless of whether they are also deaf or hard of hearing), Makaton, and possibly others I don't know about! It is also worth drawing attention to something known as "challenging behaviours" – you may have this impression in your mind of autistic people, mainly children, as shouting and screaming in public or being violent. This is in itself another form of communication. More on that in the last link in this list.

http://www.communicationmatters.org.uk/page/what-is-aac and a free online course to introduce the concepts in AAC more deeply http://www.aacelearning.org.uk/courses

https://www.halo-soma.org/learning_faqs.php#q1 About RPM

http://www.positivepartnerships.com.au/en/fact-sheet/facilitated-communication-autism About FC

https://www.makaton.org/
http://researchautism.net/publicfiles/pdf/essential-guide-autism-challenging-behaviours.pdf

 

Note: If you read this post or any of the links I posted, and find yourself identifying with it and recognising yourself in it, that's great! I suggest you do a lot of research into what you have identified with, because you might discover something new about yourself and that in turn might make your life a little better. 

 Final Note: I mostly use identity-first language in this post – that is to say, "autistic person" instead of "person with autism" which is known as person-first language. Please don't correct me that I should use "person with autism" instead, because while I agree that my personhood should be a focus, you also cannot separate my autisticness from my personhood. Some people say that you should use person first language because you wouldn't call someone who had cancer "a cancerous person" but autism is different because it is not an illness or a disease – it is a big part of me, and that's not a bad thing. If you have to separate a huge part of my life from me in order to see me as a person, your language isn't the biggest problem.

That's all for now! Thank you!