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5 minute read Autism identity social communication

Authentically Autistic

This brief piece was prompted by a number of discussions I’ve had with people about autistic masking, being authentic and true to your autistic self.

You may like to check out my writing about autistic masking via the menu.

What makes me different?

I’m autistic, so experience the world differently to non-autistic people. My senses work differently – my personal range of sensory experiences is broader than most non-autistic peoples’. I experience some things more intensely (e.g. sound and smell) and others less intensely (e.g. body sensations and balance)

I have less need to form hierarchies than many of my peers – I still love to organise things and compartmentalise them, but we use different systems.

I think about things differently. I tend to consciously think through things that many others find intuitive – and intuitively know things that others have to think about!

So what is the problem?

I am in a minority. A seriously misunderstood minority. This means I often have to hide things like the extent of my sensory overload or my need for clarification.

My logical and literal mindedness puzzles people. My drive for clarity and need for honesty perplexes them.

And often it is NOT a problem. I have integrity, I cannot tolerate inequality. I stand up for what is right regardless of the personal consequences.

So, when is it a problem?

It becomes a problem when I remain dysregulated because I cannot do what I need to do to be in a state where I can learn and thrive. None of us can. But for me, the sensory aspects of the environment – and inside my body (noise, smells, lighting, my emotions) tend to effect me more because my sensory processing works differently.

Being dysregulated always makes thinking, communicating, and looking after myself and others needs, more difficult. That’s the same for all of us.

Humans are social animals. I don’t particularly enjoy socialising and I certainly find humans difficult to understand, but I recognise my social responsibilities. I may not want to hang out with other people for fun – but I choose to have unconditional positive regard for them….. and in fact, some of them are actually quite nice!

When I was younger I would be blunt, straight to the point and say exactly what I thought. I knew I was right. I certainly didn’t aim to be rude. In fact, I thought I was doing people a favour by leaving the bullshit out and getting straight to the point! I saw no need for small talk. I empathised by finding common ground that demonstrated my understanding of the other person’s situation and shared this with them. I used my incredible capacity for problem solving to offer advice, find solutions and share them with others. I wanted to be helpful. My heart was very definitely in the right place.

How was this perceived?

I sometimes came across as rude, self-centred and insensitive.

I am not.

Reflecting on this, it is important to consider that other people don’t necessarily operate in the same way as me. Those sensory and cognitive experiences I listed earlier may be different.

When I appreciate this, I realise how invalidating my responses to others may be. Lets take empathy as an example – a subject I have written about in my personal blogs and for Neuroclastic.

My natural, authentically autistic response to someone telling me something distressing about their own experience is to trawl through my memory for something comparable.

I don’t feel a lot when people share their experiences with me. Other autistic people may be somewhere else in this broad range of sensory experiences and physically feel other peoples pain to such an extent it hurts them too. If I responded with a “yeah well, whatever” to someone’s loss, and my autistic friend with the intense emotional sensations responded with a “omg, that is so awful – look I’m crying too” – neither of us would be much use to the person who was choosing to share their experience with us.

So I developed a technique that uses my very natural abilities of logic and reasoning. I would find something comparable from my own life and tell them about it so they realise that I truly understand.

Except they don’t!

Of course, these genuinely autistic responses can be seen as invalidating for others. And it’s not just issues around empathy where this happens.

If I was to tell someone that they looked dreadful in their new dress when they asked me for my honest opinion, they’d likely be hurt.

I hate lying and I find the games people play where I am meant to know the hidden meanings behind questions, frustrating and disappointing. I am lucky to live in a family where we can be open and honest and not dress things up in untruths.

How can I stay true to myself without hurting others?

As I have matured, I have found ways of remaining authentically me, whilst recognising that other people may be running on a different operating system to the one I’m running on. Expecting other people to appreciate my straight talking just because I’d like them to do that for me, is a non-starter.

I could simply say “I am autistic, I have every right to be autistic and this is how I do things” and expect them to accept this. But they won’t! People don’t. Maybe one day when people understand autism better they will accept our way of being a bit more. In the meantime, I do have people that I can be more blunt with, or skip the small talk. It’s great and is a very small step on a long journey to equality.

Or I could mask my differences and pretend that I am like them too. That I enjoy small talk, that I like to beat around the bush rather than get to the point. That I am happy to lie! But that sucks, and messes with my mental health. I sometimes need to mask my distress and dysregulation in order to feel safer and to blend in – and we all need to behave differently in different situations in order to act appropriately. But long term masking erodes your wellbeing and identity.

How do I find a balance?

The most important consideration goes back to my thoughts on how I treat others – and myself. Unconditional positive regard. Not being an asshole to others or to myself! Recognising our differences and accepting them. Using my desire to find common ground, but not in a way that invalidates other people’s experiences or takes from them and puts the focus on me instead. Not needing to change people, instead accepting them as they are.

I recognise that I am in a neurological minority. The majority of people tend to assume I am like them, because my differences are not usually visible upon first impressions. They should accept me for being me and for being autistic, but they usually don’t.

I want them to treat me in the way that I treat them.

When I am talking with someone that has a different way of being in the world to me, I try and understand how it is for them. Many autistic people do this – it is what makes us so great at masking and camouflaging our autism.

I still use my particular way of empathising to consider that the other person may get an unbearable sensation if I tell them honestly that their dress looks awful on them. Just like I sometimes get an unbearable sensation when I have to make small talk. I consider that they may find our surroundings drab and insignificant and easy to filter out – whereas I am annoyed by the background noise and distracted by their perfume. I hold on to the fact that we are operating on different systems. But I don’t necessarily say all this out loud.

I cannot get them to understand my way of being by forcing it upon them, just like they cannot get me to become less autistic by forcing me to enjoy soap operas and small talk! Nor can I bully them into changing their attitude by blaming or shaming them for simply being born different to me. Nor should they try and bully or “normalise” me or my autistic peers by making us keep still instead of stimming; or keep quiet instead of asking for the clarity we need.

Photo by Pixabay on Pexels.com

We need to do this together…

I would love non-autistic people to put the same amount of effort into understanding autistic people that autistic people often put into understanding them.

If I am going to accept that I need to be diplomatic when telling you about your dress, so that we maintain our positive relationship and you don’t feel hurt; then I’d like you to reduce the amount of effort you unknowingly make me use when trying to understand your true intentions and desires when we are chatting.

We both need to recognise each others intentions – and we may need to get to know each other and see beyond the stereotypes in order to do that.

Autistic people often communicate really well with other autistic people – we clearly don’t have deficits.

When you know me, you will value my honesty. Don’t write people off because they say or do things that seem odd to your way of thinking. If I accidentally upset you, remember that my intentions may not have been the same as your intentions in the same circumstances – and I’ll try and do that for you too.

I will not compromise my values, but I’m happy to adapt my communication style to accommodate you – in fact I do this most of the time already! Please do the same for autistic people.

Categories
5 minute read autism diagnosis identity

Aren’t we all a little bit on the spectrum?

I’ve heard this said quite a lot – particularly since my diagnosis. Firstly I’d like to say “Thank You” to the people who have said it. I mean that sincerely. This has been said to me when people have been empathising, or trying to relate to my situation – it has even been said to soften the perceived blow of having a ‘disabled’ child. I am heartened that people want to put themselves in my shoes and I hope they bear with me and read this blog; reflect on other ways they can show their solidarity, and continue in their commitment to understanding autism.

Receiving a diagnosis of autism is a complex process. The diagnostic criteria is based upon clinicians identifying certain traits, experiences and behaviours, and all sorts of biases may come into play. This may be why certain groups of people are under-diagnosed or misdiagnosed.

In my opinion, the assessment criteria for diagnosing autism is based on stereotypes and deficits and could benefit from being updated. People who don’t fit those stereotypes, or are skilled in adapting to their atypical experiences of the world can easily be overlooked. However, there are some skilled clinicians out there that understand “why” autistic people do what they do and they are able to delve deeper and unpick all the various complexities of the person’s experience and identify whether autism is in fact the correct diagnosis.

Whilst every autistic person is unique and completely different to the next autistic person, we all have one thing in common. We have always been autistic. Autism is lifelong. No one becomes autistic as an adult, and there will be evidence of autism right from the very start.

Apologies to anyone who is tactile averse. I wanted an image that demonstrated a ‘human being behind the spectrum’ – that paint looks a bit yucky though if you don’t like that sort of thing!

So are we all a little bit autistic?

No – we’re not. But we do share some experiences and behaviours. There is plenty of stuff about autism that is relatable to people who aren’t autistic. That’s why I enjoy using analogies to share my experiences.

If I described my atypical sensory processing, sensory overwhelm, and my need for adjustments in a scientific or medical way, it’s likely that you might see me as very different from you. That’s ok – I probably am. But if you can relate to a scenario such as this one then you may begin to ‘feel’ what it’s like for me as well as understanding why I’m different.

Picture this: You’re driving around in your car looking for a parking space and it’s raining, the radio is blaring out, the heater is on and you’re way too hot in the car. You’re thinking about that appointment you need to attend and what you’re going to say, and you’re not sure if you’re wearing the right clothes, and you can’t see an empty parking space. The windscreen wipers are swishing back and forth on maximum speed, and even though you are leaning forward and screwing your eyes up, you just can’t see where you can park. It’s all beginning to feel a bit much. So you turn the volume down on your car stereo and turn the wiper speed down – suddenly it becomes easier to find that parking space. You’ve done nothing to improve your vision, or the parking space detecting ability of your eyes, but the drop in volume means the overall processing your brain has to do of all that various sensory information is reduced and it becomes easier to focus. That’s similar to the level of overwhelm I often feel and why I need to have peaceful, calming environments to live in.

If you find that scenario relatable it doesn’t necessarily mean you’re autistic – but it demonstrates that all our senses work together and reducing input in one sense when we’re becoming overwhelmed may prove beneficial. It also demonstrates that when we are under pressure, sensory information may feel more acute or distressing. It gives a feel of what my ‘normal’ feels like and when people understand that, it is more likely they’ll be compassionate and accommodating rather than seeing me as ‘different’ or ‘other’. If they bump into me in town and see me starting to “look like a meerkat” as my husband and son (affectionately?!!) refer to it when I have to go into a big shop with all the lights, temperature change, music, smells and escalators, maybe they’ll not think “look at that lady acting weird, standing tall and alert like a meerkat on guard duty” but “I wonder if she is finding this overwhelming like I do sometimes and what can I do to help?”

So yes, we have things in common. But as I’ve elaborated on in an earlier blog – just because my husband has backache and is tired at the moment, it doesn’t mean he is pregnant. Or even a little bit pregnant. It just means he can relate – and that’s a good thing.

I find this diagram helpful for explaining the autism or autistic spectrum. The spectrum is not linear like the top image, it is more like the coloured wheel image below. I perceive non-autistic people as being a bit obsessed with hierarchies and linear things. I’m sure that individually people aren’t, but our society seems to enjoy ranking stuff – whether that’s a school’s league table or a football league or on a talent show – it happens all over the place. I’m a great lover of categorising things myself, but my default setting is not usually based upon the typically perceived norms of what makes one thing better than something else. It all feels a bit judgmental and you miss so much beauty in the world when you rank stuff and only focus on the “best”.

The trouble with having a spectrum with ‘mild’ at one end and ‘severe’ at the other is it’s total rubbish. Simple. You can no more be mildly autistic than you can be mildly gay. You can’t be severely human. Or a little bit on the French spectrum. It just doesn’t work like that. The characteristics and experiences autistic people share come under various categories and each person is affected differently by them. A person who has no verbal language skills with highly developed motor function will experience the world and be treated very differently to a person who is highly articulate with poor coordination. Each has their own challenges and strengths. Both are autistic and it feels difficult to say which of them is more severely affected by their autism. One can climb a mountain – one can make a phone call. How do you rank that? You begin to realise that the severity is nothing to with the person at all – but is to do with the situation or environment they are in. The social model of disability becomes far more relevant than the medical model we are more used to. The person hasn’t changed but suddenly when other people’s attitudes or their environment becomes more accommodating, they become less disabled.

Personally, I’m not too bothered when people try and relate to me by saying they are a bit autistic too. I have other battles to fight and if I tell them not to say it, I’ll reinforce that I’m pedantic. I want to build bridges between people, but I’d rather they didn’t say it though. I find it a bit annoying because it is inaccurate – and believe me, when your ‘normal’ world feels as chaotic as mine does, you need at least a few things to be ‘right’, ‘clear’, ‘accurate’ and ‘consistent’.

Many autistic people, myself included, have had a lifetime of knowing we are different to our typically developing peers. Some of us have believed – and been told – that we are ill, damaged, or wrong for being how we are. For some autistic people their diagnosis has validated their identity. For me, it has given me the freedom to be myself and the confidence to reject the incorrect labels others have given me or I’ve believed about myself. Some autistic people are loudly proud of being autistic. Hearing others saying they are a bit autistic too may feel invalidating or belittling of the very real achievements autistic people make every day in just getting by in a neurotypically biased world.

Many of my blogs end with a reflection on what we have in common. This is important to me because most of all, I am human. I have every right to exist – regardless of my neurology. My diagnosis has not just validated my identity as an autistic person but as a woman and a human being too. There is something very wrong when people wonder whether they are in fact a true human being – just because they are autistic.

I want to relate to other people and understand how their world works for each of them – I have spent my lifetime doing this and sometimes I try to copy, or pretend to understand so that I fit in better (this can be called ‘masking’ in autism, and I’ve blogged about it). I’d like people to have the same enthusiasm and commitment towards understanding the autistic world as I have towards understanding the neurotypical world. We need to recognise our shared humanity. Seeing people as “other” – whether that is in generalisations like ‘autistic people are like this’ or ‘all neurotypicals are like that’ is a dangerous road to go down. The rise of right wing politics across our planet scares me and we should take heed of what we know about how things like prejudice, stereotypes and discrimination work. Dividing people into “us” and “them” rarely leads to inclusion, equality and peace. In our own lives we can explore how to work together and see the shared experiences and use them to relate to each other better, whilst accepting we are all different and we all need different things. And that’s why human beings are so awesome!

Taken at Folly Farm in 2009 – I don’t have photos of me when I enter a big shop, but you can use your imagination and work out for yourself how I may look!