Autism and Mental Illness

A guest post by Ellen Jones

Imagine being told that you had been living with a disability all of your life, but you never knew, or even suspected it. This disability had coloured your every interaction with the world, from the way you perceive light and sound, to your ability to communicate with others.

That was my position nine months ago. Aged eighteen years old I learned that – not only did I have a mood disorder, Bipolar Type II – but also that I was autistic.

Autism is a developmental disability existing on a spectrum. It is experienced differently by each person, but broadly affects our behaviour, social interactions, communication and the way we receive sensory input. It is important to know that autism is not something which can be cured or treated, it cannot be caused by vaccinations (and even if it were, that wouldn’t be a problem as there is nothing wrong with being autistic) but is in fact to do with the way the brain develops, hence the condition is from birth.

Autism was thought to effect 1 in 100 people, although experts now believe that it may be significantly more common. Increasingly, it is being recognised how underdiagnosed autism is amongst women and other marginalised groups, such as in the LGBTQ+ or BAME communities.

There are two primary reasons for under-diagnoses: firstly, the diagnostic tools are geared towards autistic young white boys, so much so that it is now recommended that autism assessments be adapted for women and girls as it is recognised that they may not fit the typical profile. Additionally, certain groups of people may ‘mask’ or camouflage their symptoms, for example social difficulties may be less visibly pronounced in girls who often teach themselves how to socialise.

In hindsight, I was so incredibly fortunate that I was ever diagnosed at all. After all, I never actively sought a diagnosis – something which many people spend years fighting for. It was only happenstance that one very perceptive doctor asked all the right questions and picked up on small things about my life I never knew even were autistic traits.

I never realised my lifelong inability to socialise, to not understand facial expressions (I did not even realise that was something other people could do!), my propensity to become overwhelmed in loud or bright environments, repeating what others said back to them, repetitive calming gestures, obsessive special interests and the hysterical meltdowns I had when plans changed, were all clear signs I was autistic.  I now realise that many of my eccentricities – for want of a better word – and the things I found difficult growing up, were not personal failings but a symptom of my condition. My diagnosis was a step toward me berating myself less for things I could not change.

Whilst autism itself is not a mental illness, autistic people are significantly more likely to experience comorbid mental illnesses than the general populace, in particular Anxiety, Depression and Obsessive-Compulsive Disorder. A combination of biological differences in the structure of autistic people’s brains, communication issues creating isolation, social difficulties and low self-esteem are often attributed to being contributing factors in the poor mental health of autistic people.  Frustratingly however, there are very few mental health services providing specialist support for autistic folks in the UK and thus many of us struggle to access appropriate levels of support.

Personally, I am yet to find a mental health team who knows what to do with me, frankly.  I have Bipolar Disorder and I am autistic, and treating the former means having significant understanding of the latter and how it affects me.

As a result, I have two diagnoses and almost no support. But for many, I know they will go without any diagnoses or any support and that simply is not good enough. We need to ensure all autistic folks have access to a formal diagnosis should they want it and appropriate & accessible services which understand our needs whether they be physical or mental.

  1. Don’t be afraid to tell people you are autistic. I do not ever like to use my autism as an excuse per se, but it is helpful for me to have my friends know that I am autistic as sometimes a situation might arise where I make a social faux pas or need to leave a loud environment (as a student, that would be a night out) and it is reassuring for me to know they do not think I am mean or bailing.
  2. There are lots of online support groups for autistic people. If you have a question, no matter how niche or weird, I can guarantee someone else in those groups has asked that before.
  3. Find tools specifically designed for autistic people looking to improve their mental health. There are also resources for clinical practitioners and providers which can be very helpful to share if your team is not so clued up on autism and I have found them invaluable.

Ellen is an activist and writer, check Ellen’s blog HERE. You can also find her on Twitter.

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5 Comments

  1. Lynne Warner
    May 27, 2018 / 3:12 pm

    My daughter has autism, anxiety, depression etc. 4 yrs ago verbal and physical attacks on her by other teens came to a head. After experiencing these attacks daily for most her school life, she finally couldn’t cope any longer and had a breakdown. She literally over night stopped eating or drinking much at all and shook constantly. She lost 3 stone in 2 months ! CAMHS couldn’t help as she had autism and that meant everything they’re taught goes out the window ! Her anxiety caused her to become housebound and as she’s epileptic , this meant I couldn’t go out either as I needed to supervise her. (Her seizures were no longer controlled , likely due to the anxiety) Now 4yrs on, at age 18 , she has been on and off various seizure and anxiety med, gained 10 stone in a year and lost her physical strength. We still are struggling and haven’t even had a weekend away , though she does now leave the house as long as myself or her carer are with her ( it took 10yrs to get her what was called a statement, now called EHCP. This has helped by giving her a one to one carer most the week, 9.30am till 3pm. ) If you have autism along with mental health issues you get virtually no help at all. It affects far far more people than thought and needs addressing as these young people deserve to be able to live a reasonable life too.

    • David Tugby
      May 31, 2018 / 2:33 pm

      Hi Lynne.

      You haven’t mentioned how intelligent your daughter is?

      Autism can cause learning difficulties and your daughter could be at the right age to attend a residental college like Derwen https://natspec.org.uk/find-a-college/colleges/derwen-college/. This is where she will learn life skills to become semi-independant in her later years.

      If your daughter is high functioning then try some voluntary work at a charity shop as a pathway into the land of work. Young people tend to avoid these shops and there is little preasure to make a sale. Hopefully the charity work will build self-esteem in a young life blighted by bullying.

      • Lynne Warner
        May 31, 2018 / 3:41 pm

        Hi , thank you for your reply. Yes I looked at trying her with those but her fears have been so severe she wouldn’t leave the house. The carer that I mentioned , is a charity for those with disabilities. She is 18, as stated, and this charity are teaching her various life skills now. It’s taken a year for them to get her there. They started off with just visiting and making friends, gaining her trust. 🙂

        • David Tugby
          June 1, 2018 / 1:01 pm

          I know exactly what you are going through, the lack of help and understanding, the medical profession, schools, the useless yearly SEN reviews that made us parents feel depressed. However an open forum like this is not the place to dicuss these things. So seek me out of Facebook or Linked in if you need a private chat.

          What I will say to any parent is to try and treat your autistic child as normally as possible. Also set them goals like cooking you a meal, organising the music at a BBQ, talking to the waitress on a meal out. There’s no need to rush this of course but the goal needs to be significant.

          Personally I got over my social anxiety by talking to people on trains and on holiday because I’m never going to see them again and it doesn’t matter if I mess things up. I was taught body language on a management course at work and this really helps me. So I can tell whether someones enjoying the conversation and this is an awesome feeling.

          I’ve also found that I can talk about autism to almost everyone i meet because people care and they all have loved ones with this condition. I remember one young lady I sat next to on a train. She was from a large family, so on family get togethers her autistic sister waited in a quite room and each family member went and introduced themselves personally. They would say “Do you remember me?” and where they last met. Then “Come and join us when you are ready” they would say. When she did arrive they would all cheer and make a fuss of her.

          I bet she felt like a film star.

  2. David Tugby
    May 31, 2018 / 3:32 pm

    Hi Ellen.

    Welcome to the start of your journey, one which took me 40 years to complete.

    Firstly, the good news, everything is most likely fixable, you just need to know whats the problem. So if your doctor has a list of your autistic traits ask him what they are and what issues they may cause. Then you can start working towards becoming a content and happy autistic. Maybe start by asking some older autistics like myself because we could have found a really simple solution.

    Let me give you an example for solving an OCD.

    Imagine you are on a night out and you have parked your brand new car in the pub car park. You look out the pub window and think “did I lock that door”? It’s a brand new car so you make an excuse, sneak outside and check the car door.

    Now this could easily become an OCD of course. So what could you do to prevent this from repeating on the next night out? Well you could check your watch whenever you park the car. Now when you look out the pub window all you do is to ask yourself the time. If you know the time then you will also remember looking at the watch and locking the door.

    It’s a memory technique for remembering mundane events.

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