Different is not less, its different: Unpacking assumptions around experience

There were a number of areas where autistic people interpret or experience  things differently to neurotypical people and where we often get told we are doing something ‘wrong’. Our lack of proficiency at something like non-verbal communication indicates to some that we are in need of some sort of ‘fix.’ I would suggest that no ‘fixing’ is required, just more understanding of and respect for the validity of different perspectives.

This post examines four areas where this issue occurs. These are sensory sensitivities, eye contact, body language and facial expressions and unwritten rules. 

Sensory sensitivities

Autistic people often have something called sensory processing disorder. While this is not exclusive to autistic people, it is very common for us. Sensory processing disorder means our senses are significantly heightened. Things can be too loud, too glare-y, too smelly and so forth. The impacts can be extreme. Earlier this year I had breakfast why some community leadership folks and someone ordered an omelette with black truffles. I really don’t like eating  mushrooms or fungus. The smell fo the truffle was so overwhelming and horrific that I had to move several tables down until the offending stinks things were consumed! Sensory issues have resulted in people selling their home or leaving their job.

There its an additional issue with sensory issues: many people are unaware they exist which makes it hard to get any accommodations or understanding. Your senses are your reality, your truth,. People understand the world through their senses. So when someone comes along and says their senses are extreme and unpleasant, this can get ignored or misunderstood. This can lead to someone and their sensory experiences being dismissed.

What is the solution? Well I think this one involves people who do not experience sensory issues understanding that others might experience in this area and adjusting their response accordingly., It requires a shift in thinning too understand sensory input can be different for each person.

Eye contact

Autistic people generally don’t willingly make eye contact. For many of us eye contact is extremely invasive and unpleasant. Some people feel physical pain when making eye contact. 

In many societies eye contact is seen as essential to good communication. This can result in autistic people being forced to make eye contact so as to supposedly ‘improve’ our communication. This is cruel and coercive. In fact eye contact isn’t the universal pinnacle of communication anyway. In some societies it is considered disrespectful to make eye contact but try telling that to some ABA* therapist harassing children to do something which goes against everything they know and causes them distress and pain.

The other issue with forcing eye contact is that it simply doesn’t ‘work’ in terms of building effective communication. I tend to looking the general vicinity of someone forehead, simply because eat is easier than having people assume I’m being somehow rude because I’m not looking at them. Very occasionally I accidentally stray into looking in their eyes. It is like they can see into my soul and I can see into their soul – not pleasant! And actually not very useful in terms of communication. If I make eye contact my entire attention will be filled with the unpleasant sensation and I won’t be able to take in what is bing communicated.

Eye contact is an area where neurotypical experience is privileged a lot of  the time. Autistics are seen to be ‘doing it wrong’. Rather than assuming we need to do eye contact to communicate it would be much better if autistic experience was understood and respected and people learned that for some of us, not looking does not equal not listening and that this is OK.

Facial expressions and body language 

Autistic people often struggle to understand facial expressions and body language and also things like tone of voice. This does not apply to all of us but it is very common. This is another area where many neurotypical people often seem to assume that everyone understands these things. This means when we miss something – such as someone being sad – that we are viewed as thoughtless and callous. I understand that this may be something which feeds into the myth that autistic people lack empathy.

The meaning of facial expressions and body language can be learned but it is a tricky thing. For example I understand facial expressions in films that I have watched many times over but this doesn’t translate into conversations because it happens too quickly and most people don’t like me staring at them as if they were a movie! 

Once again, some ‘therapies’ teach this to autistic children-  or at least they try to. I was in a conversation with a former ABA therapist (and yes, it was a very interesting conversation!) who told me how they would ‘teach’ autistic kids facial expressions using emojis but for some reason it wasn’t effective! I explained that the reason not wasn’t effective was probably related to the fact that a cartoon or emoji is very different form an actual human face. Despite that, many autistics don’t really understand emojis. I am one of those people. The five or so emojis that Facebook has for responding  to posts are OK and i get the vomit one and the laughing one but aside for that I have no idea what they are meant to represent! Once again this misconception that autistic children can be ‘taught these things using strategies that might be effective for neurotypical children but which demonstrate a total lack of understanding of autistic experience is just not right. These attitudes also feed right into the idea that autistic people are broken, in need of ‘fixing’. unreachable and remote. 

Unwritten rules

In the world there are a bunch of unwritten rules, Neurotypical people often understand these instinctively. I always think it is a magic trick because it is completely  alien to me. I know that there are unwritten rules and I can learn most of them once I know they exist but the amount of social faux pas I have had related too misunderstanding unwritten rules is large! People who instinctively ‘get’ unwritten rules often fail to even realise that their ARE these rules. Even  if they do they may not realise that autistic people find them baffling. It is like the sensory issues – people tend to believe that their experience is correct and others’ experiments are either a deviation from correct of that they simply don’t exist.

Conclusion  

All of these considerations and issues seem to come down to a few things which need to happen.

  • Understanding and knowledge of autism and autistic experience
  • Respecting difference an knowing that some people have a different experience
  • Not privileging neurotypical experience as the ‘right way’ of doing things
  • Listening to autistic people.

If this happened I think these issues probably wouldn’t be an issue. #DifferentNotLess

*ABA (Applied Behaviour Analysis) is a ‘therapy’ for autistic children which focusses on rewards and punishments and has a strong focus on conditioning autistic kids to appear less autistic. ABA is implicated in post-traumatic stress disorder and goes against everything that myself and fellow autistic advocates work towards.

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Why I talk about mental health 

Like a great many people in the world – including a lot of autistic people – I have a mental illness diagnosis. In my case I have an atypical sort of schizophrenia / psychotic disorder which I have been treated for since 1995. I take daily medication and on several occasions I have been very unwell. People who see me now tend to comment on how I am very self-aware and insightful and I am very clearly in charge of my mental health and wellbeing but this was not always the case. These days I can converse with the crisis team or my psychiatrist and articulate my needs to them. However, in the past I was institutionalised and the largely at the mercy of my illness. 

While most of my advocacy is focussed on autism, a lot of my experience is tempered by my constant negotiation with my errant brain. Everything I do is viewed through the lens of ‘will I be able to keep my commitments or will I be too unwell?’ Between 2010 and 2013 I was extremely unwell and took nine months off work and and had eight hospital admissions. I was sustained by my wish to keep my job and my home. I managed to do this through a combination of the support of my managers at work and the health case managers from HR as well as the support of my parents and some great friends and my own determination. But while my struggle is internal a lot of the time there is another struggle: that of the way the world and many of the people in it view mental illness.

How many times have you heard someone – or yourself – use the term ‘insane’ or ‘crazy’ or ’mental’ to describe something bad? I know I do it quite frequently. It is ingrained and it is everywhere, yet few people notice it, even less complain that it harmful or discriminatory.  How many times is medical terminology such as ‘psychotic’ used incorrectly and out of context? Semantics might seem a bit nit-picky but in fact that is far from the case. The term ‘psychotic’ relates to a state of psychosis which is where a person believes unusual, irrational  ideas and can experience additional bits of reality – like hallucinations such as voices. However, when people say ‘psychotic’ in the media the word is almost always used to mean psychopathic or violent which are in fact totally different things. So why does this matter? Well imagine you are me with my psychotic illness and you have started in a new team at work. You don’t know your manager or colleagues well and then you notice your world getting more frightening and confusing. You try to manage it but eventually you need to take time off. So what will you say to your manager about your absence? How do you frame the nature of your illness – if you feel strong enough to tell them about it at all? I have had this dilemma many times and it is really hard working out how to explain even that one thing of the meaning or psychosis. Now while I have got you imagining things, then imagine that you are not extroverted, confident Jeanette who has been talking about autism and mental health to audiences since 2005 but that you are young and shy and self conscious and have just been diagnosed with a serious mental illness. What are you gong to tell your boss about your absence? I know quite a lot of people who just simply leave jobs rather than have that conversation, and given the stigma surrounding mental illness, that is hardly surprising.

That is one tiny fraction of what life can be like. Some other major challenges are assumptions that people with mental illness cannot work or do other activities. On of the biggest issues seems to be a public hospital system that most people I have spoken to who have been involved in – including me – have found quite unsupportive and institutional. They recount being either infantilised or demonised  a lot of the time. In fact in my own experience most of the terrible invalidation and abuse I have experienced has happened in hospitals and other settings which were supposed to be therapeutic. And autistic people with mental illness very often experience a range of other discrimination, stigma and ableism on top of the stigma in response to mental illness. Just talk to pretty much any autistic person who has been in the public psychiatric ward or who has tried to convince a doctor who misdiagnoses them that they are in fact autistic.

Mental illness is still in the closet a lot of the time and this really needs to change.

I was part of a comedy night for mental health week a few years ago. It was a great thing with some actual comedians and then me! At the end, one of the audience members came up to talk to me. She told me she was a nurse in the psych ward I was in on and off between 2010-2013. She told me how wonderful it had been having me in the hospital because I talked about rights and empowerment. She told me she hadn’t been aware of that before she met me. This person had been a nurse for 25 years! At that point I realised that there needs to be a much deeper discourse on the rights and needs of  people with mental illness. Why can’t we have pride for people with mental illness too? I think I’m up for that. Mental illness is really nothing at all to be ashamed of. If anything, I am proud at how I manage my illness and have learned so much about living well and how I share my thoughts and insights with others to help them. Surely this is something worthy of some pride? I guess that is why I talk about mental health and will continue to do so. We need change in this space.

 

My mental illness is just one of my attributes. I don;t know why I would ever feel ashamed of it

And this isn’t meant to be a shameless authorial book plug, more something people might find helpful that I just happened to coauthor!  It is by me and Dr Emma Goodall, Dr Jane Nugent and I wrote this book called  The Guide to Good Mental Health on the Autism Spectrum