Autism and mental health

TW: self-harm, suicide, eating disorders

This week I was listening to a podcast [1] about the link between autism, self-harm and something called 'alexithymia' which is common in autistic people and is basically the inability to identify or express your emotions [2]. In this podcast, Dr. Rachel Moseley reads out some statistics which were seriously concerning: 

• "Autistic people without intellectual disability are on average dying 16 years earlier than non-autistic people... One of the most common causes of death is suicide."
• "There's some suggestion that autistic people are 9 times more likely to die of suicide."
• "66% of autistic adults report suicide ideation and up to 35% report attempt.

These numbers are really frightening but also unsurprising to me, given that I myself have struggled a lot with mental health issues, self-harm and suicidal thoughts and the majority of late-diagnosed autistic adults, and in particular women, that I have seen speak about this topic both in support groups or on social media say that they were initially misdiagnosed with one or a number of mental health issues such as anxiety or depression before they finally got their autism diagnosis. 

Mental health is something which isn't talked about enough even within the neurotypical population and this means that many autistic people are just being completely left out and not getting the support that they need, which would offer a possible explanation as to why the suicide rates are so high. I wanted to make this post to explain how mental health issues can affect autistic people differently and why it's so important to offer specialised support for us. 

Firstly, I'll take you through my own experience with this. I started showing signs of depression and anxiety from an early age, the earliest my mum noticed was when I was around 9 but chances are it was probably even earlier than that. This worsened as I got into secondary school and I finally hit a really low-point at around 14-15 when I was referred to a psychiatrist and I was diagnosed with anxiety and depression. However, looking back a lot of the things I was struggling with were either autism-related or a product of trying hard to mask - severe social anxiety, meltdowns which were often mistaken for panic attacks, extreme perfectionism and fixations etc. 

Despite this first psychiatrist being unaware that I was autistic, some of the techniques that they gave me for these issues actually helped, however only a few years later I noticed that the problems were returning and manifesting in different ways - I went through a period of restrictive eating and then once that stopped I began self-harming. At 19 when I finally broke down and told people about the self-harm, I went back to therapy but it just didn't seem to be working, so I stopped. The doctor had put me on medication and that wasn't working, even when I was at the highest dose. I started seeing another therapist just before Christmas and again, it wasn't working. Finally, I got diagnosed and now I can understand exactly why. 

What seems to be the trend for autistic people is that they are first diagnosed with mental health issues such as anxiety or depression and then they receive treatment for these issues which isn't effective because it doesn't consider the fact that our brain processes those disorders in a different way to everyone else. My anxiety wasn't because I was nervous around people, it was because I was struggling so hard to understand how they worked and how to mask and I thought that whenever something went wrong it was my fault. My perfectionism was because a typical trait of autism is fixating on things and needing things done a certain way. Restrictive eating/eating disorders are common with autistic people. The self-harm is because I have alexithymia and sensory processing issues and when I can't process or express how I'm feeling, it's easier to release it in physical way. 

To give an example of how this translates into therapy, a number of therapists told me to try grounding techniques for my anxiety and in particular, the 5-4-3-2-1 method. For this exercise, you're supposed to look for 5 things you can see, 4 things you can touch, 3 things you can hear, 2 things you can smell and 1 thing you can touch. For a neurotypical person with anxiety, it may be grounding to get back in touch with your senses and this might calm you down. But as an autistic person, my senses are already heightened most of the time and when I'm anxious this just gets worse, so what I absolutely did not need was someone telling me to focus on it even more. 

In combination with this, most mental health issues such as anxiety and depression come with this idea that you can recover with the right therapy or medication and for many people that is the case. However, part of me knew that I would always be like this and it was the cause for many of my suicidal thoughts. I felt like something was wrong with me because I couldn't get better and people were telling me that I needed to just get on with it or that I was putting too much thought into it. 

Meanwhile, my pain continued and it felt like it would never end because I knew that something about my brain would always be the same. The reality was, the part I would never get rid of wasn't the mental illness, it was being autistic. I've always been autistic, I always will be and that's the part that will stay constant, but the more I accept that, the less I will suffer with mental illness. 

When I was finally diagnosed, one of the biggest reliefs for me was knowing that people could no longer tell me that I need to fix it or sort myself out because now they know that I can't change this, I can only learn how to manage it and even that is less my responsibility and more the responsibility of those around me to accept me for who I am. 

It feels a bit deflating making this post in the sense that I can't offer an explanation on how to help autistic people with these issues. The only real solution is more diagnosis to avoid this whole process of being misdiagnosed and given medication and treatment that isn't suitable for us. However, my hope is that the more awareness we can bring to issues like this, the more doctors will start to look for autism instead of shying away from it, the more kids like I was, who have all the signs but don't fit the stereotypes will finally be diagnosed and receive the right support, hopefully as early as possible. 

If this is a post that people find helpful or educational, I might go into more detail about some of the more specific issues I talked about here such as self-harm in autistic people or alexithymia but I wanted to just give a general overview because it's something that needs to be talked about more. 

Thank you so much for reading,

Ashleigh x 

Link to Action for Asperger's if you want to donate: https://www.actionforaspergers.org/ 

Sources:

1. Leonard, J., 2019. Alexithymia: Symptoms, diagnosis, and links with mental health. [online] Medicalnewstoday.com. Available at: <https://www.medicalnewstoday.com/articles/326451> [Accessed 3 April 2021].

2. Grant, T. and Moseley, R., 2019, The One Percent, Autism, Self-Harm and Alexithymia with Dr. Rachel Moseley, [Podcast], 13th June 2020, Available at: https://open.spotify.com/episode/2TQUCSvGqySNreejiFpqqI?si=b_-KbFMOQEKAEEVCJz0Wxw (Accessed: 3rd April 2020)