A topic that is often associated with Autism is Mental health and I don't this is a coincidence at all. This week marks world mental health day (Sunday 10th October 2021) so I wanted to share a post on this subject. I am aware that is this a hard subject for everyone but for some more than others so if you don't feel in the right place right now that is completely fine, this post isn't going anywhere and will be here ready when it feels right for you.
'But I want to live, and not just survive'.
It use to be a constant question in my head, when will life be more than day to day survival. Each day felt like an out numbered battle, the neuro typical world vs me. It is exhausting and hard work. I felt so isolated.
Research suggests that as many as 80% autistic individuals struggle with their mental health (Ambitious about Autism, 2017). Being autistic myself, I don't find this a difficult figure to believe.
When you look at mental health challenges as a co-morbidity of another diagnosis it makes the picture with autism more stark*:
ADHD & mental health diagnosis - 64%
Diabetes & mental health diagnosis - 19%
Asthma & mental health diagnosis - 2 -26%
Learning disability & mental health diagnosis - 15-52%
Autism and Anxiety often go hand in hand but this doesn't make it okay and something that we should just live with. Alongside this constant sensory overload and burnout can lead to autistic individuals being more vulnerable to depression. Despite this mental health services often don't meet the needs of autistic individuals which further emphasises those feelings of isolation, anxiety and burnout fighting to get the right support.
So what about my experiences of mental health. I have struggled over the years. If you have all ready read any of my previous posts then you will be aware that I struggled thought out my teenage years, particularly my years in education. For me these were low years in terms of my mental health. While I didn't have a formal diagnosis of any mental health disorder at this point reflecting back I really struggled with anxiety and depression. I guess I just accepted this was normal, I hadn't experienced any different.
I then moved off to London and started my degree, at this point my mental health took a real turn, there were a number of things going on in life, a big change in location and life style (Starting uni!), challenges with my physical health and being away from home for the first time. I really struggled and ended up being diagnosed with depression in 2018. I moved back home and had a few really tough months. Getting out of bed was hard work. I had no motivation to see anyone and cut off ties with a lot of friends. I sought help from my GP who prescribed me anti-depressants and that was that. I felt quite abandoned by the GP, it was as though they dint really know what to do with a depressed autistic person so here's a prescription and off you go!
I was really grateful for the support of one or two close friends who really made an effort to keep in contact with me and of course my family who were there everyday, keeping me going.
I later decided to seek support via talking therapies when I started at university again a year later. I quickly realised that this was not designed for those who's brains work like mine. Sitting down with a stranger and having to explain how I felt was impossible. I didn't understand what I was feeling never mind being able to tell someone else this. One thing that I was pointed towards that I still find really helpful are mood cards. These are a box of cards with a variety of emotions on that help individuals to identify and express their emotions.
Another thing that sticks in my head most from the mental health support I received at university was the great use of a mental health first aid kit. This is a box that you put together that works as a self soothing tool for you. The idea is that there are items in it to engage each sensory receptor: Smell, Taste, Touch, Sound and Sight. I was also encouraged to write a letter to myself in first person written from Happy Hannah to Sad Hannah. This letter lives in my mental health first aid box and is something that I can read when I feel anxious or low that helps direct me to do something more helpful that when I am feeling happy I wouldn't struggle to think of. Why not have a go at making your own self soothing kit, make sure it represents all your senses, these are just a few ideas of what is in mine:
Smell: Lavender essential oil, bath bomb
Taste: Haribo's
Touch: A fiddle toy, a smooth stone, soft fabric, One of Maisie's (my lovely dogs) toys
Sight: A collection of photos of happy memories/ people that are special to me
Sound: a list of music/ podcasts/ audiobooks that I know I like. I also have an app on my phone of white noise
I also keep my mood cards in my box so that they are easy to find and also I can use them to try and understand and explain how I am feeling at down moments.
While on the whole now my mental health it good I do still have days that I struggle. I call these days whoopsie days, they are often triggered by burnout and can lead to me just feeling quite tearful, low and anxious. I have written a separate post (Self Care & Burnout) so won't go into much detail about this but I think it is so important to highlight how real and exhausting autistic burnout is.
Sometimes I can pin point what is causing me to feel low, e.g. a busy few shifts at work, to much people time etc. But other times there isn't any obvious cause. I like to call these days 'Whoopsie days'. Days when for one reason or another I am just feeling rubbish. I have learnt over the years that this is very real and important to acknowledge. I have taken days off work/ university because of a whoopsie day.
Linking back to the first part of this blog and the lyrics 'But I want to live, and not just survive' I now feel on the whole I live, and really enjoy living. But whoopsie days are much more about survival. If I have eaten at least one meal, maybe had a walk or a shower and made it to bed in the evening then that is more than enough for a whoopsie day. I'd say on average I have one of these every month or two now and I'm okay with that. And I have learnt that others are more accepting of that now. I don't feel guilty telling friends can we re-arrange I am having a whoopsie day and just cant face going out. This isn't to say I don't beat myself up for being useless and lazy on these days (I'm still working on that!!)
I am aware that this is a massive topic and I have done it no justice within this post. It all feels such a muddle in my head trying to write this, so sorry if it makes no sense. But if you can take away one thing from this please let it be this. Autism does not mean that you need to live with poor mental health, yes we may be more vulnerable and the traditional mental health services offered may not be completely appropriate for our needs but it is so important to not let this put you off seeking help. There is hope and things are improving. Reach out and find just someone to talk to. At the end of this post I will put a few links to helpful websites that have more information about autism and mental health.
Please don't suffer alone.
Autism and Mental Health Links:
- Mental health (autism.org.uk)
- Autism and Mental Health | Signs & Symptoms of Autism | YoungMinds
- Samaritans | Every life lost to suicide is a tragedy | Here to listen
I would also really recommend the following apps:
- Molehill Mountain
- SAM: Self-help Anxiety Management
- Rootd
- Mypossibleself: Mental Health
- Breathing Bubbles
*There are many different statistics out there so don't take these as 100% official and correct, just an average from my research!
Very, very helpful Hannah. And honest - thank you for sharing. I really hope that others find this and get a boost, or an idea to try and help along the way. Well done again. X
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