Autism is Not A Mental Illness ......

....It is often mistaken for one though and infact, to make matters even more complicated, it is very common for autistic people to suffer from poor mental health. Let me explain.

Mental illness describes a range of conditions which are diagnosed by a qualified medical professional and are characterised by a change in perception and behaviour. The person suffering feels different to their usual self. When people are mentally unwell it is often difficult for them to engage in work or their usual activities without treatment and most importantly it feels like a negative experience for the sufferer. Although some people suffer from chronic mental illnesses which either persist for many years or keep recurring, there is always potential for somebody to get better; just as they might get better from a physical health condition. There are cures and treatments available. Many people do eventually end up feeling better ( ie – they return to their usual levels of cognitive functioning ) after talking therapies, taking medications which help to balance brain chemistry or by learning to make changes or get support that helps them to manage a particular life situation such as a bereavement or redundancy.

Autism is a developmental condition. This means that I am autistic , I have been autistic from birth, ‘ autistic’ is ‘normal’ and usual for me… Autistic children will not “ grow out of it”. Any kind of ‘ #treatment ‘ is either aimed at trying to help autistic people cope better in mainstream society or at helping them ‘ learn to behave less autistic’ ( something I disagree with, but perhaps more on that another time”!) . Treatments are not aimed at eliminating a person’s autism and helping them return to their ‘usual selves’ or a ‘ self’ with whom they feel comfortable with. That ‘ self’, will always be autistic no matter what, because that is how our brains have been wired since birth.

How would one evidence a successful ‘ treatment’ anyway?! There is no comparison.. There is no way of measuring whether or not they have got ‘ better’… or returned to a ‘ usual’ way of being ‘ before they ‘ got autism’. It has always been there! They have always been autistic. Just because an autistic person might participate in a behaviour modification programme that makes them behave more like other people in their society it does not mean they have ‘ got better’ they have not ‘ returned to their usual self ‘.. they have become markedly different .. less like their usual self and it doesn’t usually feel like a positive change for that individual. It feels like a lot of unnatural effort and seems to create a lot of tension, shame and sadness in people who feel that their true self is unacceptable… which in my opinion is more like becoming mentally unwell that getting ‘ better’.. but I won’t rant on about that for too long ( for now)!

My point is that autism is a natural difference that exists in human beings just like different sexualities , genders or skin colours. It is a neurological difference; a brain difference, a different way of perceiving life, a different way of being. It is characterised by sensory processing differences, differences in social communication and interaction and restrictive or repetitive behaviours; all of which come naturally to an autistic person.

I will talk more about the autistic spectrum of neurological and social differences and how that manifests another time, but to give some examples :

Sometimes these differences can be advantageous; for example somebody with exceptional visual perception might see more detail or colour than others which supports them in creativity and they might become a great artist.

Often however, 'differences' tend to hinder people when trying to live within their society's culture . For example, an autistic person might naturally behave in ways which differ from the generally accepted ‘ normal’ code of behaviour and this might make communication and relationships difficult.

Autistic people can sometimes appear to behave in emotional, erratic, ‘ desperate’ ways, because they feel unheard or misunderstood, they are stressed or temporarily overwhelmed by a confusing/ loud/ highly social situation, or simply because that is the way they express themselves .. openly and without inhibitions or adherence to social conventions. They might present an informal argument or perspective in meticulous detail, with dates, times, examples etc which can be seen as pedantic, ‘ over the top’, ‘too formal’ or ‘ unnecessary’, but it’s just they way we process things. We might make decisions or take actions that seem unusual or difficult to understand in a neurotypical environment. This does not mean that we are unwell and it is dangerous territory to suggest that normal autistic behaviours are a sign of mental illness , because it leads to misdiagnosis, delays in getting the right support and in some cases even inappropriate sectioning and medicating in mental health units.

When we say or do things that society deems unacceptable or abnormal, that can lead to us being rejected by people around us; sometimes even people we love or care about. Misunderstandings happen all the time- for example, I think I’m being helpful, but I’m perceived as arrogant. I intend to be kind, but people think it’s ‘ too’ kind and presume I have an ulterior motive !! People think we’re ‘ weird’ or ‘ odd ‘ or ‘ inappropriate’. For me , it creates a lot of confusion. Sometimes I’m too blunt or I over-share and people are surprised by things I say in the wrong place or at the wrong time. I have high emotional sensitivity and certain people find that annoying … all of this means it’s not uncommon for me to suddenly find myself being ignored , shouted at or simply cut off and I literally can not understand why. Maybe it was me… maybe it was them…Sometimes it probably is them, but I can’t always tell. I have spent a lot of energy and time trying to work these things out. It’s exhausting !

Differences in sensory perception might make things seem extra ‘bright’ or ‘ loud’ compared to how other people perceive them . For me, that makes everyday experience like going to the supermarket on a Saturday extremely overwhelming to the point where it feels impossible to cope. Noise from a building site carrying on all day can not only cause an annoying distraction, but actually makes me feel like crying .. or screaming unless I am able to put on music or earphones to drown it out.

(These are only a few very basic examples used to demonstrate a point. Hopefully as I continue to write over time, we can explore further how autism is experienced by different people. )

Abandonment, rejection, relationship breakdowns, alienation, family disputes , overwhelm, confusion and burnout characterise the lives of most of the autistic people I have ever met.

It is no wonder that despite the fact that autism itself is not a mental illness, a significantly high number of autistic people experience mental illness at some point in their lives.

Everything gets on top of us.. the noise, the lights, the conflicts, the abandonment, the misunderstandings….. the losses, the stress , the anxiety …….

According to the mental health charity Mind, autistic adults are much more likely to develop mental illness than the general population.

According to NHS figures, 25% of all people experience some kind of mental health issues at some point in their lives. By comparison, the charity Autistica states that around 80% of autistic people experience mental health issues.

Indeed, autistic people, ( who do not have learning disabilities.. and Autism is not a Learning Disability either by the way...though it can present challenges to learning … more on that another time too!), are often diagnosed with mental illnesses such as recurring generalised anxiety disorders before they are diagnosed with autism…. because nobody looks at the underlying cause. Yes – generalised anxiety can have a number of triggers. So can PTSD, but these conditions are common in autistic people, because simply engaging in everyday activities like work, shopping or raising children can cause us exceptionally high levels of stress Something like having to get a train to work at rush hour every single day can feel like trauma for some people….. Autistic #meltdowns without the right support are traumatic themselves… and trauma often leads to mental illness right? Not to mention the shame , embarrassment and the #shutdown that happens afterwards.

So if autism is not a mental illness to be treated, what can be done to reduce the incidence of mental illness in the autistic community?

Speaking as somebody who was diagnosed as autistic at the age of 40, after a long history of mental illnesses such as depression , anxiety and PTSD, here are some interventions and types of support that I feel would help autistic people . They are around education and coping mechanisms which I feel could help reduce the risk of mental illness, but are by no means a ‘ fix- all’ or a definitive list for all people on the spectrum . They are simply a few suggestions and ideas :

1/ Early diagnosis and more efficient diagnostic tools . For me, if I had known from an early age that I was autistic, I could have learned from an early age to accept my sensitivity, my meltdowns … I could have been taught that other people commonly perceive things in a different way to me and why. That would have helped reduce feelings that I was ‘ strange’ or there was something ‘ wrong ‘ with me.. something that I felt I had to hide or ‘ mask’ from others. It would have reduced the shame associated with meltdowns and I could have reduced the number of meltdowns sooner, because I would know what triggered them and therefore what to avoid or at least ‘ prepare myself ‘ for. Other people’s expectations of me would have been different ; for example I would have been given longer to do my A level coursework which would have caused me less stress and anxiety ( which can accumulate for a variety of reasons over time and eventually lead to a mental health breakdown ).

2/ Education and understanding in society as a whole – A lot of people’s perceptions of autism are still based on very old, outdated research and carry a lot of stigma and misunderstandings. Many peoples still believe that ‘ everyone is a little autistic’, which simply is not true ( something else I’ll explain another time !). If the wider population understood autism better, then maybe as a society we could start becoming better at accepting people for their sensitivities and differences, so autistic people would therefore feel more comfortable in being themselves. We wouldn’t need to be ‘ brave’, ‘ strong’, sit still’, ‘ pull ourselves together ‘, ‘ keep our voices down’, ‘ stop being so over-emotional’ as much . I am fortunate to have found my sensitive and accepting neuro-diverse tribe and have been living happily in that little bubble for some time, but it hasn’t always been that way with all people. Certainly in some workplaces and certain social groups, ( which I have since detached from), I have felt the need to confirm to a certain standard of behaviour and communication, which was really hard work for me and I believe has led to not only mental health issues but also physical health issues over time.

3/ Education for autistic children on social-skills and matters they find confusing such as boundary setting, sarcasm.. why people don’t always say what they mean, why certain tones of voice are considered unacceptable in certain situations, when it is or isn’t appropriate to share personal information and so on, could help to make early life a little less confusing and facilitate more successful social interactions that help to boost our self –esteem . I don’t mean that autistic children should be taught to be sarcastic, deceptive or inauthentic; just that if they understood what society ‘ expects’ they could make an informed choice on how to behave, whilst understanding how they might be perceived. If they still wanted to behave unconventionally that would be their choice, rather than being surprised or hurt when somebody takes a disliking to their innocent actions. It would also help to make us less naïve and confused autistic adults ; less vulnerable to deceptive people without having to learn the hard way.

4/ Support to manage sensory overload – information on stimming behaviours, fidget toys, ways of lowering or increasing certain kinds of sensory input would help reduce the pervasive, chronic stress that most autistic people experience from things like – work places being too bright, uniforms too scratchy, train stations being too loud.. not enough or too much physical contact etc. If you have ever had an injury or condition that causes you physical pain …like a backache or toothache for example.. you will know that as you go about your day, that pain is always there in the background. It makes you tense, you can’t concentrate and at the end of the day you feel tired and exhausted. Most autistic people have a similar experience when things like the fabrics in their clothes are not soft enough or the air conditioning makes a whirring noise that they can’t block out ( for example).. it feels as unbearable as actual physical pain…( but nobody else is complaining , so best ‘ be an adult ‘ about it and not whinge or moan), leading to exhaustion, which can lead to depression or even anxiety about going to the school/ workplace where the offending sensory stimulus is present. Without help and support to identify sensory triggers they can be difficult for autistic people to identify for themselves.. leading them to go to their GPs saying ‘ I feel really anxious about getting on the train to go to work and I don’t know why “…etc

5/ Greater support and understanding about meltdowns. If people knew what it was or was not ie; that it’s not a ‘ tantrum ‘ or a ‘ psychotic or manic episode ‘ .. if more people could learn how to avoid and how to manage meltdowns then they might : a/happen less , b/ be shorter lived and c/ feel a little less scary and shameful. If I had been taught ‘ this is a meltdown it will pass’, just to ask for space for myself… for quieter voices… low lighting, something soft to touch, calm music… If I had been encouraged to try and recognise whether I found it helpful to have a hug or to be left alone, I could have avoided making my meltdowns worse. I could have reduced the shame .. helped myself recover quicker and stopped the self-esteem-crippling feelings of ‘ oh my word.. what on earth is wrong with me… I must never be seen like this! “… all of which would have helped my mental health in the long term.

So you see- helping autistic people improve their mental health is not about #curing or treating autism. It’s about making living with autism less stressful and scary in our current environments.

It’s about recognition, acceptance, education and encouragement.

It is very important that autism is recognised as a developmental condition and not a mental illness, in order to provide appropriate and effective support.

I know people who have been sectioned, medicated and suffered a deterioration in their mental health, due to being misdiagnosed ( before finding out they were autistic ). I know myself that I have been written off as being ‘ crazy’ or ‘ manic ‘, by some people just because I’ve had an emotional response to something that people thought was out of proportion, or I’ve rambled on too long, too enthusiastically or incoherently about something I was passionate about . I’ve even thought I was ‘depressed; when I was simply burnt out.

I have however genuinely suffered from crippling anxiety that meant I needed to get help; crying because I couldn’t face going to work, feeling like I was shut off ‘ in a bubble’ taking my son to toddler groups.. Not eating regularly because my stomach was doing somersaults all the time. That is not my ‘ usual ‘ way of being. When I feel different in a negative way and it persists , then I know I need more specialist help and support. I am always autistic … I am not always anxious.

Right now as I write this blog I feel physically and mentally well; emotionally stable...

but if you met me and I was busy or excited about something... or even overwhelmed by something positive like a wonderful evening with friends or a beautiful sunset, I might behave in very animated ways that may seem a little strange to you!

So please try to remember; Just because somebody behaves in a way that you don’t understand it does not always mean that they are mentally ill. If they are distressed, can that be changed by simply changing their environment?

Try to consider what is ‘ normal’ or ‘ comfortable ‘ for them.. not what is ‘ normal ‘ or comfortable for you.