#ActuallyAutistic Mental Health Awareness

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TRIGGER WARNINGS!: suicide, self harm, graphic descriptions, mental health, descriptions of personal struggles

This is an…extremely late post considering mental health awareness day was such a long time ago now, but I still wanted to write a blog post raising awareness about the mental health struggles specifically autistic people struggle with and, although when it usually comes to autism I’m not okay with awareness as I am with acceptance, awareness does need to be spread when it comes to our mental health.

Causes of Poor Mental Health

Autistic people, those with learning disabilties or both are more likely to experiance mental health problems than the general population. There is some more information on the MIND website here, which agrees with me that the main reasons for this is a lack of available resources, we’re much more vunerable to abuse especially by parental figures and others with authority, a lack of support for basic coping skills, a lack of resources to make the world more accessible, difficulty getting a job or keeping a job, difficulties keeping and maintaining friendships and other relationships, stigma both online and offline, discrimination especially from services and in the workplace as well as biology and genetics (which is true for anyone, you’d be more like to experiance mental health problems if others in your family have or do).

I think a lot of enviromental factors contribute to our poor mental health, as well. For example, there is a link between being autistic and being homeless which was published in an article by The Big Issue. Because of a variety of reasons such as being vunerable, more likely to be abused, and difficulting getting and maintaining a job, autistic people are more likely to be homeless than the average population. Of course, when an autistic person becomes homeless, this means that it is even harder to access support than it was before.

There is also the big problem that a large group of people don’t understand autism and don’t try to, making the world even more difficult for us to live in. It’s inaccesible, and we aren’t listened to or given the care that we need. We are often misunderstood, judged and excluded. We are often spoken over, especially by those that are meant to help us – parents, support workers, doctors, ‘activists’, etc. They are often spreading misinformation, even if they think they mean well, which only harms us more.

Something that I have not read in any studies directly but I feel like is a contributing factor myself is that we live in a world where abuse against autistics is normal. That means outsiders won’t even see it as abuse so we’ll be suffering in clear view of the world but everyone is just smiling at it. Alongside that, the anti-vax movement means that people would rather their child is dead than be autistic. Hearing that on a nearly daily basis will of course take an emotional and mental toll.

Statistics

The NHS website states that autistic people are dying younger than the general population. A study in Sweden showed that the average age of death for an autistic person is 54. The average age of death for others is around 70 years old. So, that means we could die on average 16 years younger than our peers. One of the leading causes of death in autistic people is suicide. We are NINE TIMES more likely to die by suicide than the average population. This was done in a case control study involving the records of 12, 122 people diagnosed with autism and compared it to non-autistic people. The actual results could be even higher, as there are so many autistic people undiagnosed or misdiagnosed with something else.

There is even more research done by the NCBI. 

72% of autistic people involved in the study were above the reccommended psychiatric cut-off for the suicide risk on the SBQ-R. This is significantly higher than the general population, which only scored 33%.

Suicidal behaviours and thoughts are increased in autistic adults than non-autistic adults. A sample was done on 374 autistic people, 66% had contemplated suicide, whereas the general population scored 17%. Patients with psychosis scored 59%.

35% of autistic people in the study had planned or attempted suicide, but non-autistic people scored between 2.5% and 10%.

There are also some statistics from the National Autistic Society (although I can’t say I support them entirely as a group). Roughly 40% of diagnosed autistic people have had experiance with an anxiety disorder but the general population had a percentage of 15%. Anxiety can also lead on to other mental illnesses, like depression.

OCD occurs in 2-3% of the non-autistic population and is much more common in the autistic population, although the website did not give a percentage for comparison.

How Can We Help Autistic People?

This section includes some of my own opinions as well as responses I recieved from asking this question Twitter (@autiedragon):

TW Suicide and Self Harm

If you are able to answer this question, and you have been/are suicidal and/or self harm, what do you think could be provided to help you?

  • “Psychs and therapists that at the very least acknowledge that autistic brains work differently from allistic ones, and we are not being uncooperative when their usual tools aren’t working for us as I was talking about in a thread the other day as well, I wish more focused on reducing the number and severity of self harm episodes rather than always eliminating it for good within a few months of seeing them, (especially) when (people) like me have done it since very young. I get that they won’t actively encourage you to do it, but the vibe you get that progress is nil if you relapse is not helpful. It would be better for them to acknowledge e.g for me litle and often actually reduces my overall harm, but I get why they’re wary to do so. I also wish they’d take you seriously when you say you’re planning or very close to doing something instead of waiting until you do. We fantasise a lot about things and know the difference between that and planning stage but I’ve heard “but you didn’t actually do it, so”” –  Evander V @soul_into_hades

 

  • “A lot of the self harm happens through the stress of masking, for me, or dealing with people who cause me problems that an allistic person wouldn’t have, which traps me in a position of meltdown/no response” – @chesneycat

 

  • “Acceptance, allll of the acceptance. Some NT’s think that because what they see of autism is behavioural that it can be controlled if you just try hard enough. And if you aren’t controlling it then you should try harder. Well (fu*k) that! Accept autistic people for who they are.” – @aut_cheerful

 

  • “Not being constantly abused” – Anonymous

 

  • “Someone I can talk to who I feel comfortable with. I have had friends in the past like this, but sadly no longer, but I have always found just knowing I had a friend I could turn to, really very helpful. These behaviours kick in for me when I feel very lonely and in pain” – Hannah, @QH_0000

 

  • “That’s a good question, I actually can’t think of anything other than stop forcing me into things that are harmful to me. But that’s really, really needed. I started self harming around the same time I started preschool and before that I had a type of nanny who only took care of me because of reasons. And now I self harm (and) have suicidal ideation almost every time I get upset (daily). In all honesty, the only thing that has helped so far is medication, therapy has only been neutral – making things worse. For me I really think we need to make it okay on a societal level to have different needs and that disability isn’t something to (be) fixed” – Asy, @photon_barrier

 

  • “I don’t fuction without 3 antidepressants a day. Even if you’ve never been suicidal before your anxiety can get so bad you’ll get panic atacks daily that could be triggered by anything. And this point whether you wanted to live or not the pain is so unbeatable you instinctively try to end it in the quickest way possible. I’m in the EU so my meds are free or like £10 and I can get them almost anywhere. I don’t know about the US I’ve heard the fu*king du*basses even LOOK DOWN on mental illness meds. If there was a way to like insta knock myself out like a sesative I’d have done it instead I tried to kill myself thrice. I went to a doctor and told him everything and now I gotta take three meds a day and an emergency one in case of a panic attack. Didn’t fix me but I function” – Empress Catra, @ForceCatra

 

  • “AUTISTIC ADVOCACY. Not autism advocacy, but for suicidal autistics by autistics. If you’re being abused and controlled in all parts of your life and nobody is advocating for you from your side of the neurotype divide, it can go south quickly. Autistic twitter friends, for me. They helped me recognise my own struggles as real, valid, explanation and importantly worthy of accommodations and adjustments. And they gave me the confidence to switch my office light off and wear my ear defenders when I need to” – Alex Heighton, @aheighton83

 

  • “The best advice or idk acceptance? I ever got about SH was when I met nurses who acknowledged that it can be a coping mechanism and for some people prevention isn’t always possible, so they gave me a lot of advice surround safety as far as possible,  and regulating methods, to have health care profs that actually understood that sometimes abstaining from sh can lead to worse relapses was all the support I needed! And with regards to what would help with attitude towards suicidality and sh is people acknowledging that autism doesn’t necessarily imply deceased mental capacity, I’ve been infantilised so many times after attempts or episodes as if because I’m autistic I wasn’t sure what I was doing or I surely couldn’t have meant to hurt myself or that I wasn’t aware of how it can affect the people around me and how people will view me” – Ash, @hzlhrst

 

  • “What I needed was stability, financial, social, just not constantly being one mistake away from disaster” – Skye, @disabilisaur

 

  • “Time and space to process. Rather than forced to behave and process in ‘acceptable’ ways. Pushing and rushing never ends well.” – Alex, @AlexClarkes

 

  • “The times when I’ve thought about killing myself have usually been when I’ve felt isolated. Therapy and a healthy social life have effectively kept me from trying it so far.” – @Alternativestr8

 

  • “Never touch my hands without permission. And never ask me to make eye contact when I don’t want to. Those are my top two items. Like…I mean…whatever it is someone does to help, if they do these two things they shouldn’t? Their efforts won’t work” – Anonymous

 

  • “I used to do self harm, never been suicidal. Sadly I don’t know what could have helped me. I’m not even sure why I stopped. I either don’t remember or there was no particular reason. Wish I could have been more help. Not sure why I harmed, only theory I have is wanting to see the pain” – @vigdisdammyr

 

  • “Actually listening to what I need instead of what others think I need. That’s been very frustrating” – @artisatsea

 

  • “Just…talking with a peer. I only get to see my therapist like…once a month. So it would be nice” – @jennie_comeaux

 

  • “Access to decent blades (because when distressed I crack open shaving razors which is dangerous, fiddly and makes me more likely to rush when I get to the damage part) and above all decent medical professionals who can stitch me up. I wrote a thread on this once – I had a trained nurse who helped me to self injure safely. I really think it is important that those of us who are going to self injure no matter what are supported to minimise harm, so much focus goes into prevention but it’s not realistic” – @silverswansong

 

  • “Feeling misunderstood or invalidated by comments such as ‘you don’t look auistic’ These lead to memories of family covering up and invalidating abuse. I have people who understand and I still can’t stop my thoughts from spirraling sometimes due to linking thoughts and rumination. I feel like the only way forward is to make so many negative and traumatic situations into something that can help others and so that is why I created my twitter page and blog. I want to stop others from suffering. It does help to know I have some people who care but it doesn’t take away the pain I don’t have certain items that I would harm myself with around me anymore” – @DanielleS2019

 

What I hope you take away from this more than anything is how important this awareness is for us, and that the only people to care about our mental health is other autistic people and almost nobody with the power to make a positive difference to us such as professional help and medication.

Thank you for reading, and please don’t forget about the autistic people who have already lost their life to suicide.

Until next time,

A.W

 

Autism Acceptance Month – Day 15

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Everyone Should Know…

Hmm. I guess here there’s a few points that I want to cover quickly:

  • Autism Speaks is harmful to us, so please don’t light it up blue. Light it up red or gold.
  • ABA is basically what conversion therapy is for gay people (I say this as someone who is gay)
  • Autistic people prefer identity first language
  • You should always listen to autistic people first and everyone else second
  • A lot of autistic stereotypes aren’t true for a lot of autistic people, like not being able to understand sarcasm

There’s probably loads more that I’m forgetting but I have loads to do today so my head is in a planet of its own!!

Let me know what you’d add

A.W

Autism Acceptance Month – Day 14

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Routine

Routine is quite important to me but I don’t know what exactly my routine is. I tend to eat at the same time, shower everyday, things like that. I can get meltdown-y if something in my routine changes. If you asked me what my specific routine was, though, I couldn’t tell you because I’m not sure I know.

I do like things in my daily life to stay the same and if there are going to be any changes I’d rather know at least a few days beforehand. I do like going out places and things like that.

I even eat the same things, which may also be due to the fact that I’m an extremely picky eater and I don’t want to eat other things because I know I won’t like them.

A.W

Autism Acceptance Month – Day Thirteen

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Family

Some members of my family aren’t so accepting of my autism, and even when they are they deny the traits that autism shows. An example is how I have developed social anxiety from a young age and many members of my family don’t understand why I can’t work, alongside how most work enviroments do not provide accomodations for autistic people.

Some members deny I’m autistic completely. They’ll think I’m weird at the same time as thinking “you don’t seem autistic”, not really making any connection between the two.

Some members of my closer family have been very supportive and have tried their best to get me what I need, which is why I now live in supported accomodation with another autistic friend my age. I also when to an autistic unit in a mainstream school, which meant I got what I need during secondary school (although secondary school was still hell).

Family is always a complicated, emotional and often painful thing for multiple autistic people. A lot of autistic people grew up in harmful parental enviroments, meaning many autistic people suffer from postmatic stress disorder and personality disorders alongside depression and anxiety.

A.W

Autism Acceptance Month – Day Eleven

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Stims

My main stim is biting. I have several things that I use to bite on. I have a little unicorn and an Oreo thing. The Oreo one is much harder and it’s textured, that one is also good for toothache! You can bite really hard on that one and you probably won’t even see the dent marks. My unicorn one is much softer, so I have to bite less hard but I prefer this one generally.

I have a dragon necklace (that I can’t find, but I know it’s in my room somewhere) with a little ring on it so I can play with it. It’s also a good audio stim, but as I said in Day Ten noise can be overwhelming for me so I don’t use it for that really. My friend, Skye, makes stim toys for neurodivergent people with beads and wires and feathers/charms, that they specially adapt to suit the person and they’ve made me one of those. I ordered another one too, so within the next couple of months I’ll have a new stim toy.

I also bounce my knee a lot. I know it can make other people anxious, but it’s an automatic thing that I can’t seem to help. I’ve pulled a muscle somewhere on that leg from bouncing it so much but it doesn’t seem to have made much of a difference, I’m still doing it…painfully.

There’s probably something I’m forgetting, there always is, but for now this is what I got for today!

A.W

Autism Acceptance Month – Day Ten

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Sensory Life

Hmm…I’m not too sure what this means, but I guess it means what sensory topics I find overwhelming?? Which, I guess, would primarily be noise and scent. As I’m writing this, I’m currently in a very crowded room in college with people talking and it’s very distracting – so I’m not getting any work done, and I’m not reading anything. Noise can be very overwhelming for me, and I love quiet. Even little noises like hearing someone breathe can have me on edge sometimes.

With smells, it’s mostly bad smells but things like fragerence sprays can make me feel overwhelmed. The artificial scent feels like it’s clogging up all my breathing areas. It’s not fun. I deal with it by having earphones in all the time. I also avoid spraying things in my home.

I’m also quite sensitive to temperature. In my case, I find heat overwhelming. I prefer cooler/cold temperatures (so the fact the atmosphere is warming up doesn’t make me very happy). My heating is rarely on because I prefer to warm myself up with layers that can be taken off if the heat gets too much. My showers are normally lukewarm, even in the winter. In the summer, they’re as close to ice cold as I can get without it hurting my skin (and shower water can be quite painful, too, like tiny needles shooting from the sky).  I’m probably a nightmare to deal with in the summer.

I’m fairly good at ignoring pain but, maybe because of the above reasons, I find burns particularly difficult to deal with.

I only wear cotton, because other fabrics irritate my skin. That’s pretty much all the sensory things I can say, for now. I always forget something though!

A.W

Autism Acceptance Month – Day Nine

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Favourite Autistic Owned Buisness:

Okay, this one is easy! I may be biased because we’ve been friends for a really long time now, but Beth Wilson is extremely talented and I would have loved their shops regardless of whether I knew them or not – they’re rainbow and cat themed! They also do some autism related stuff on their Etsy store.

You can follow them at @doodlebeth or @doodlecats on Twitter.

Their Doodlecats shop can be found here

Their Etsy store can be found here

They can also be found at Beth Wilson on Facebook, and they can be found on Instagram as well

I think I have an extra fondness for this store because I’m an animal lover, and I have a cat called Tessa that I absolutely adore. Finding things designed with black cats in mind can be difficult. Black cats are just, unfortunately, not very popular :c

I’ve bought various pins from both stores, and some clothes and stationary from Doodlecats.

I highly, highly reccomend her.

A.W