Ten things Autism isn’t…

I was going to write about what autism is, but as I wrote it transmogrified into what autism isn’t, so here is my list of what autism is not:-

1. Autism is not being socially awkward

It’s not awkwardness. Autistic people are often excellent at socialising with each other, where they can avoid eye contact, stim, avoid small talk, share information and rely on their own natural communication preferences.

We don’t do social communication automatically, and by that I mean we don’t do non-autistic social communication automatically, because I have never seen anyone express happiness more effusively than an autistic person meeting someone else with the same interests and sharing their joy.

2. Autism is not avoiding eye contact

For some autistic people eye contact is overwhelming and painful, for others it’s not a problem. I have lost count of the number of people who have gone for a diagnosis and been told they don’t meet the criteria as they are making eye contact.

I myself tend to look at the bridge of the nose or the mouth. I lip-read a lot when people speak so that my visual processor can support my auditory processor and I’m more likely to work out what it is you are saying.

I had assumed that eye contact was a euphemism for looking at someone’s face. Imagine my surprise when I was told that people actually look into the eyes directly and that this was a sign of honesty and dependability. How I laughed at the strange world of non-autistic communication and its illogical rules.

3. Autism is not lacking empathy

This is probably the big one for me, because it is the reason that I didn’t seek a diagnosis for years. I worked with autistic teens, I had all these sensory difficulties and executive function issues, all these social misunderstandings and miscommunications, all these social hangovers that would take weeks to pass, all these similarities, but how could I be autistic? I was married with children, I had friends, I cared deeply about lots of people; wasn’t autism supposed to be synonymous with cold and unfeeling and selfish?

No, it never was. We were fed lies and stereotypes by the media. Some autistic people do lack empathy – as do many non-autistic people – but it’s not a given. What we do tend to do is to perform our feelings differently or appear to be cold and distant when we are feeling overwhelmed. This is a miscommunication not a lack of feeling.

Many autistic people report hyper-empathy as a problem; feeling empathy more strongly than the average person. We are as caring and loving as any other group of people.

4. Autistic people do not lack imagination

Difficulties with social imagination are a thing, but that does not translate into a lack of imagination generally. We are a creative bunch. Pattern-thinking is one of my favourite things about being autistic; I see patterns and connections in everything and I use this to inform my creativity. I may be a bit rubbish at applying a creative social story to some green arrows on a screen, but I’m great at imagining the connections that run through us all in every aspect of our lives.

What is imagination anyway? Some people think in words, others in pictures, others in a mixture. Is imagination simply thinking about something as it isn’t? Creativity is enormously important for many autistic people, we feel it as a deep need, and it is not possible to create without imagination.

I start to get twitchy if a few days go by and I haven’t made something new. The form doesn’t matter, it could be writing, origami, chainsawing, woodwork, design, DIY, crochet, spreadsheets, sewing, gardening or just generalised hitting something with a hammer until it forms into what I want it to; creativity is a drive that has imagination at its roots.

5. Autism is not black and white thinking

Okay, so this one is a tricky one; I am definitely a black and white thinker, I definitely have rigid behaviour patterns and I definitely hate change, but my black and white thinking is built on a foundation of research and analysis.

When someone says, “But have you considered..?” Yes. Yes I have. I’ve thought of every possible permutation I could come up with. Nothing I do is unplanned or baseless. But – and this where I argue that my black and white thinking is different – if someone showed me evidence to change my mind, I would.

I’ve noticed non-autistics are often emotionally attached to their opinions, to attack the view is a personal attack. To attack my view is to attack my ability to reason, but present me with additional information that refutes me and I will embrace it.

Yes, I am literal. I literally studied English Literature in University so that I could learn how to read between the lines. I’m good at it, but it’s all very conscious. One thing that often strikes me is how averse to change many non-autistics are when it comes to how things are done. It isn’t the autistic person fearing new technology, or wanting to do things in a certain way because “this is how we have always done it”. There is a different kind of rigidity to be found in the non-autistic population, that keeps us from making positive change when it is logically the best way forward. We all need a bit more flexibility in our thinking.

6. Autism is not a learning difficulty

About a third of autistic people have a learning difficulty too, and this can change their support needs significantly. Learning non-natural communication methods is particularly hard for those with learning difficulties. It is incredibly important that those who are not verbal have their needs supported and heard.

One way the rest of us can help is by sharing how autism affects us, so that we can all better understand the triggers for stress behaviours in those who cannot express the problem. When it comes to needs we will all need different things. I like to think of myself as not needing support, but I do have a husband who takes on things like going to the supermarket (which I find a nightmare due to sensory overload as well as executive function problems, the number of variables involved, and the possibility of unscripted social interactions with anyone I have ever met) and providing me with information about change and taking me to new places. My needs vary day to day, but I don’t have a learning difficulty, it is not the same thing as autism and it does create additional difficulties that need understanding.

7. Autistic people are not incapable of lying

I am an honest person. Lies make me uncomfortable and I am terrible at spotting when I’m being lied to (even when the lie is outrageous). I don’t like lying, it doesn’t come naturally to me.

Autistic people are generally honest and like clarity in communication. This can be seen negatively as blunt and rude, or positively as clear and honest, depending on your viewpoint. Social lies are something I have had to learn – when someone is asking if you like what they’re wearing and it’s too late to change, they are looking for affirmation, not a critique of their choice (though I’m unlikely to have strong feelings either way, fashion is not my forte).

Autistic people tend to be better at seeing things as they are, rather than seeing what we are socially expected to, and this comes down to the advantage of not processing social communication automatically – we don’t soak things in unconsciously, we make a choice to engage or not.

There are also some autistic people who do lie as a matter of course. This is often down to trying to avoid social confrontation and wanting to give someone exactly what they think that person wants to hear in order to fit in. It can be a real difficulty for some autistic people, especially because it often ends up distancing them from the people they are trying to get close to.

8. Autistic people are not impolite

We like rules and I am particularly partial to the very British manner of sprinkling pleases and thank-yous and sorrys through every sentence I speak. In Britain if you only say thank you once, you aren’t being grateful enough. We are a ridiculous nation. I was raised with strict Victorian ideals of politeness. Debrett’s would be more than happy with my etiquette.

When we talk about a lack of politeness we are usually talking about someone who is either bluntly crossing social boundaries they weren’t aware existed, or someone who has seen through the charade of empty words. Clarity and honesty is not rudeness.

If I say you are obese, because you meet the clinical criteria for obesity, then I am stating a fact and not making a judgement. Whether you are obese or not doesn’t make you a good person or a bad person, it doesn’t make you cruel or kind, it just is. But I know that most people would assume that stating that fact had been done as an insult, so I won’t say it. If I did, I would not be trying to be rude, I would not be trying to be insulting, I would just be stating a truth, and I would likely be misunderstood.

If I see that many people use formal-politeness to be passive-aggressively rude, and I decide to skip the formalities and just be kind, then again I would not be trying to be impolite, I would be skipping the garnish and going for the meaning beneath it instead.

Sorry.

9. Autistic people are not all good at maths

A tricky one for me, because I’m good at maths. I have a mind that loves logic puzzles and finding patterns, and numbers bring me great joy, but I am not all autistic people. Many autistic people don’t have that form of pattern thinking, they don’t find numbers easy, they are not logic-minded.

Extremely few autistic people are savants of any kind, even fewer are maths savants – we don’t get a superpower as a trade off for not finding social communication hard. I’m good at maths, that doesn’t mean I can calculate pi to a hundred decimal places in my head, nor calculate vast sums without a calculator. There is huge variation between autistic people, if in doubt ask us about our interests, most of us would be happy to share!

10. Autistic people are not incapable of growing up

Most autistic people are adults. Some of us will require support throughout our lives. Many of us are parents, we work, we socialise, we are valuable members of our communities (look no further than fifteen year old Greta Thunberg who inspired the latest school-strikes to protest climate change, for a level of maturity far surpassing most adults), we care deeply about fairness, equality and we are not constrained by a fear of long term social change.

You’ll find us waiting at the school gates, in the office, in the art world, singing on a stage, dancing (badly but enthusiastically if you’re like me), paying bills, walking the dog on the beach, we’ve infiltrated everywhere.

I often rely on routine to overcome my difficulties keeping on top of day to day necessities. I use familiarity to breed my contempt… no, I use familiarity to keep me feeling safe, and I use my pattern thinking to predict what will happen and when, so that I do not get overwhelmed. I have noise cancelling headphones for when it gets too loud, dark glasses for when it gets too bright, and down time to recover when it all gets too much. As with all adulting, it’s about finding a balance that works, and joining in the biggest lie of all; that all adults know what they are doing.

Autism isn’t this strange alien thing, it’s just a different way of thinking and experiencing the world. Some of us will find ourselves more or less compatible with modern living than others, we will all have different needs (and those may vary day to day), but autism is not terrifying or awful, nor is it marvellous and fabulous, it just is.

It’s how I think and I wouldn’t be who I am without it.

36 thoughts on “Ten things Autism isn’t…

  1. Thanks for this. Though I agree with you that autism is not the same as learning difficulty/intellectual disability though, I would like to say that many autistics benefit more from support tailored to those with learning difficulites than to those with psychiatric illness. Of course, autism is neither, but at least here in the Netherlands, I suffer because I, being of at least average IQ, am seen as somehow similar to those with mental illnesses. I prefer the care approach to people iwth intellectual disability and yet, I have to fight to get my. Needs met because somehow autistics of average/above-average IQ are seen as able to be “rehabilitated” like schizophrenics etc.

    Liked by 2 people

    1. There’s definitely a push in the UK at the moment to separate autism from mental health. You’re quite right that if you need support it either has to go through LD route or MH route at the moment, and neither is right. It is not an illness or a lower IQ and it really needs its own category. People struggle to see someone so competent, who may have real difficulties with everyday care of themselves. It would be great to see the support there for autistic people without their being reclassified as something else to get it. Thank you so much for sharing your experience.

      Liked by 1 person

      1. Yes, I agree. I’m in the Netherlands and here autistics of average or above intelligence are forced into constant independence training and stuff, while those with intellectual disability are entitled to care for the res tof their life. I face this issue at the moment.

        Like

  2. Most excellent analysis. I hope you don’t mind that I posted a link to Facebook and quoted the bit about non-autistics being emotionally attached to their opinions. I get into a lot of trouble on Facebook by providing information to contradict opinion.

    Thank you for posting.

    Liked by 3 people

    1. Thank you, I don’t mind at all. It’s a tricky one. So much ‘rudeness’ is in the interpretation. I think we all need to try to meet each other in the middle more

      Liked by 1 person

  3. Keep speaking up, Rhi. We need more of our voices heard, and some of us are either very conflicted about doing so (and I understand why), or some of us are not able to speak for ourselves. The more those of us who are willing and capable shout out, the more progress we will eventually make. Thank you so, so much for not backing down.

    Liked by 3 people

  4. This needs to be forwarded to doctors everywhere, since most of them seem to have preconceived notions about what autism is (but really isn’t, as has been pointed out here). Not sure if they’d take any notice, but it’s worth a try.

    Liked by 3 people

  5. Oh yes! This is a lovely post. It made my day. This morning I took my husband to hospital for his first chemotherapy and radiotherapy session. The waiting room was painted in a bright fluorescent green on a textured paper. There was a strong smell of heavy duty cleaning products. Another person waiting was wearing a really strong perfume and the strip light overhead was flickering. I waited in the hallway. No chair. Nurses tried to get me back into the waiting room. I explained that the room made me feel claustrophobic and overwhelmed. They walked away. I spent 25 minutes squatting in the hallway writing in my journal and listening to guided meditations… with my ear buds in and my tinted glasses. I think I was getting strange looks. I’m past the age of caring. Supporting my husband was my goal and armed with my survival kit of journal, mints to help use taste to block smells, glasses to dim over bright lights, I did it. Then I read thus post and sighed with relief… yes! Thank you 🌸🌸

    Liked by 4 people

    1. Oh wow, you are so very welcome. Hospitals are so often an absolute nightmare. I wish your husband (and you) all the best. I’m so glad you felt able to do what you needed to do, it’s so important. We need to have the energy to support those around us, we can’t waste it on thoughtless waiting rooms and unnecessary pains. I hope it makes them think about the space they offer a bit more 💐💐

      Liked by 1 person

  6. Thank you, Rhi, for posting this. Such an important correction for many limited neurotyps. I’m printing it and will refer those people to it as often as necessary.

    Liked by 3 people

  7. My son is autistic was diagnosed at 10. There was no support offered since then till now . He is 17. His going into adulthood and has started ro hear voices telling him to hurt people when he it’s stressed . He says he also sees creatures. That help calm him down.
    Mental health said he is coping ok on his own .
    But he isn’t I don’t think . No body offers support it is awful in kent in England. The help and support is severely lacking.
    They tell me the voices are mental health and not autism.
    Since we have had nobody to guide us or any support at all I have no idea if this is true.
    I don’t know how to help him .
    I do know as a mother it is heart breaking for me to watch not knowing how to help.

    Liked by 2 people

    1. I’m so sorry you’re going through this. I am not a mental health professional, but when I have come across visual hallucinations in autistic people it has always been a part of an extreme stress response. Whilst the stress is happening because of autism reacting to the situation or environment, the stress response is causing a mental health issue – the hallucinations are not a part of the autism itself. If you see what I mean. But I am not a doctor and it could be something else like a separate mental health issue.

      Whatever happens it sounds like he needs real help to deal with the stress and I’m appalled that no one is offering support. Does he have special interests he can use as a distraction when he’s feeling stressed? Not necessarily doing them, but talking about them or going to a group?

      Transition periods are difficult for autistic people, and 17/18/19 is probably one of the biggest transitions we experience. Things are already changing as people go off to new things, there is lots of uncertainty and change on the horizon.

      CBT with a professional who knows how to make adjustments for autism can be helpful for some people, so can mindfulness. Things like noise cancelling headphones, dark glasses and comfortable clothing, can help take away additional sensory stressors if he’s someone who struggles with those. When you’re stressed any additional thing is adding to the weight no matter how small. Plenty of recovery time after being around people, plenty of time to wind down before sleep, keeping to routines, avoiding unexpected change, these things can all help. If there are any peer support groups for autistic teens in your area, these can be great (though I know it can be difficult getting a teen to go along!)

      I hope you can get some support in place. All the best 💐

      Like

  8. Hello,
    I just stumbled upon this post on the old facebook. Was thinking about printing it out to take to work but changed my mind as I do feel that my colleagues wouldn’t take any notice. I do find that’s the problem nowadays that unless someone has a relative/friend with autism or they are in a linked education they just have no interest in learning about any disabilities (or mental health.)

    Being a female I have been great at masking therefore I didn’t get my diagnosis until 31, what a shocker but it finally all made sense. Since then i have only had medication thrown at me, no support otherwise. And at work I have had to fight for my reasonable adjustments and for a routine. I tend to find management get fed up of me as I get upset over things that they consider trivial and I have meltdowns sometimes too. I have even had a falling out with occupational health who refuse to have anything to do with me now (she tried telling me how I felt!) A manager once said to me, after me asking to go home as I was struggling with suicidal thoughts, that some people fake mental health to get out of work!

    Sorry for the vent. Maybe I should write down some of my experiences and try to make a change within the company.

    Liked by 2 people

    1. Getting support and adjustments from an unresponsive employer can be a real battle. You have my sympathy. It might help to print it out and give it a go, sometimes people listen more when it’s coming from a third party, but I completely understand why you would not trust that it would change anything.

      It’s incredibly frustrating when workplaces can improve things so easily in some ways, but they are just so resistant to change (and we’re accused of being the rigid ones). If you can persuade them to get a trainer in at some point, push for an autistic speaker. I’ve found that workplaces I’ve spoken at respond really well to the personal experience. It also stops autism being “talking about something hypothetical” because the person doing the training is autistic. I always make a point of stating that the experts on adjustments needed for a particular workplace will always be the autistic employees working there. Some places have set up employee peer support groups on their intranets, so that autistic employees can collaborate and discuss what helps them in that specific place.

      I hope things improve for you 💐

      Like

      1. Thank you for writing this article, I can’t tell you what it means to me, except that I feel so much better about things after having read it. Some of these were misconceptions even I had and that has held me back from chasing up a diagnosis.

        Liked by 2 people

  9. I know the obese comment as I’ve done it myself before. I say all sorts of things that while factually correct are incredibly rude and offensive to others. It’s learning where to draw the line as with some people you can get away with this. Sometimes it’s also required to motivate people to get them to do something about it.

    Liked by 2 people

    1. It’s certainly a delicate dance! Some people are fine with the truth – especially when they know there is no judgement involved in it – others are much happier with lies.

      Liked by 1 person

  10. Absolutely brilliant!! I learned a few things from reading this, and I have ASD. Diagnosed at age 36, I’m now 41. I have a son who was diagnosed at the same time.

    Funny you should mention the polite manners thing. I live in the States. People tell me I say sorry too much. And I get offended when others don’t say excuse me. Maybe I should move to the UK. 😂

    Also… As someone who’s obese in addition to Autistic, let me say that people telling me I’m obese is a bit annoying. It’s stating the obvious. And since I live in this body, I know every day… every step that I take, my weight is an issue. I also have a genetic condition that causes me to be fat and losing weight is near impossible. So for people to point out that I am obese reminds me of how hopeless my situation is. When kids ask me why I’m so fat, I try to be kind and explain Lipedema. But I suppose I assume adults should know not to ask those kinds of questions. 🤷🏼‍♀️

    By the way, eating is my stim. So I’m doubly cursed.

    Liked by 2 people

    1. You would definitely fit in here in the UK!

      Completely agree about volunteering the information about being obese. I don’t need anyone to point out my hair is curly, I know that, so I wouldn’t point out something to someone else that they would plainly know. That is rude without any reason behind it. I was thinking more of if the discussion arose or opinions were sought. Eating as a stim is definitely a thing. I love crunchy foods. Thank you so much for sharing your thoughts with me

      Like

  11. >3. Autism is not lacking empathy

    I have Aspergers, so the following comment applies only to that group. I can’t reliably comment on autism as a whole.

    Outgroup hostility is useful for small, high-trust groups, which is what aspergic people are used to as a matter of biology. There is a certain black and white thinking there that starts with “sacrificing myself for the group” and ends with “not letting anyone bad into the group”. When someone with aspergers makes a friend, they really mean it, and do not mean it in the watered-down NT manner. The same goes for many other close relationships. The NT reaction that errenously judges one to be either hypo- or hyper-empathetic is just a signal that they are not in your group.

    This also ties into introversion/extroversion, with extreme “introversion” (actually hostility) expression when faced with an outgroup, and extreme extroversion with an ingroup.

    The aspergic social strategy is high-investment, high-reward, large long-term gain and prefers a low member count. The NT strategy is short-term, Low-risk, low-reward and enables low social trust.

    There are only so many and so many ways you can group spheres/cubes together, while semiliquid goop just oozes together. Groups with long-term social strategies resemble the former while the short-term the latter.

    Liked by 1 person

    1. Thank you for sharing your thoughts with me, I enjoyed the ponder. I agree that less social energy and a more direct manner tends to create fewer, but less superficial relationships for autistic people. We are not good at the time and energy most people put in to everyday interactions. We don’t have the energy to “water” lots of relationships at once which can make it less likely that we will come across compatible people outside of our neurotype. It’s far quicker to establish compatibility when someone is open, honest and tells you their true self when you first meet, rather than having to working things out through subtle references and social pleasantries. I don’t believe that when NTs have close friends, that it isn’t as deep as autistic people’s friendships, but they have often built to that level more slowly, and will also have a wider array of friendships that do not carry that intensity – whilst the autistic person may only have close friendships.

      It’s all fascinating and varies so much person to person. I am always interested in the patterns and mechanics of human connections. Thank you again for a thought provoking post.

      Like

  12. Thank you for this post. My friend has probably forgotten she said this by now but a few months ago she said I lacked empathy because of a talk she’d been to and because of one piece of research. It really crushed my heart to hear a friend say this about me when she’d known me for years and, if she really knew me at all, she should know that I’m very empathetic. But apparently research is more truthful than her knowing me. I haven’t brought it up with her since because I’m scared of starting an argument. I’ve just acted like everything’s okay but it’s really upset me since she made this comment.

    Liked by 1 person

    1. I’m sorry your friend said that to you. Some people seem to have a blind spot when it comes to such things; when a talk confirms an out-of-date stereotype, then all else is dismissed. It’s frustrating and wrong. Would you feel able to share this article with her? Might that help?

      When trainers talk about a lack of empathy they are usually talking about the performance of empathy. If an autistic person doesn’t behave in exactly the same way as someone else, then that is seen as not feeling the same. But we know that autistic people don’t have the same behavioural responses, so we cannot make assumptions about internal reactions.

      It’s hurtful when those around us need “proof” of the things that we are telling them. This is true whether people are autistic or not. She appears to be demonstrating poor empathy for you. I hope things improve 💐

      Like

  13. I am on the autism spectrum also. You make a lot of good points. The empathy misunderstanding I think comes partly from that we are more interested in facts and are logical minded–so when people are emotional about issues, they accuse us of not being empathetic because we do not relate to their emotion. My daughter is on the spectrum but she is more emotional than I am and she wants to talk out her emotion (which drives me up the wall because I just want to DO something to fix whatever the issue is–I see no point in airing out the emotion). The “rudeness” perception never goes away because of our directness and sometimes cluelessness about tact.

    Liked by 2 people

    1. I completely agree. I think it’s so often a clash of strategies being misunderstood. I like to fix things and then deal with the emotional side later, but often that isn’t what other people need, so do my best to adjust to the individual in front of me. It would be a dull world if we were all the same

      Like

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