#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 7

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The Autistic Community

This is probably one of my favourite things about being autistic. I have never found a community so loving and open and supportive. I don’t know what I would do without my friends and my partner that I’ve found in this circle. I’ve lost a few people, and I’ve had friends and lost them, but I’d rather have experianced true friendship then never have experianced it at all.

I’ve been friends with some of them for a couple of years now. I’ve been with my partner for over a year.

It’s also wonderful to be able to relate to and connect to other autistic people, like being with my “own kind”. There’s a value in this that I think people who are always around their “own kind” don’t understand. The lonliness and isolation can be painful, but the autistic community can help with that.

I do and always will have apprechiation for them.

A.W

Autism Acceptance Month Days 4, 5 and 6

Oops…completely forgot to do these, again. I’m just going to do them all in one post this time instead of uploading three different posts. I might write some ahead of time just so that I know they will be published on the right day. Wow, I’m so good at this writing thing…

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Day 4: Reactions to “Coming Out”

Due to the young age that I was diagnosed, I never had to come out as autistic. However, that doesn’t mean that new people I came across throughout my life would automatically know I was autistic just because I have a diagnosis. Obviously, I don’t go walking around wearing my diagnosis.

Some of the reactions have been mostly positive. Some have…not been so great. A lot of the reactions have been something like “oh, you don’t look autistic” or “I knew there was something up with you!”. Both of these are, of course, quite offensive.

I think I’ve mostly been lucky so far because I’ve had mostly positive responses. Some people to this day are still denying my autism, or denying the autistic traits, due to how I look so “high functioning”. Otherwise, it’s mostly been okay.

Day 5: Special Interests

Oh, I’m kind of upset I didn’t dedicate an entire post based on this one because talking about my special interests is one of my favourite things to do and not something I get to do often.

Some of my special interests include books, of course. I like writing, but I haven’t really ever taken it seriously. I don’t believe I have potential as an author. I do love reading, though. I currently have four bookshelves and I’m trying to acquire a fifth. I like collecting them, looking at them, smelling them, buying them, reading them, reviewing them. Books are very important to me. I briefly took an English Lit class for three years once I finished school, and that really took away my love for books for a little bit. I think not taking it seriously has worked well so far.

I really like Disney, toys, food, the paranormal (mostly ghosts) and animals. Anytime I am set up to talk about my special interests, I end up completely forgetting what they are. I’ve been thinking about talking about my special interests on my blog, but I know nobody really cares. I’m happy to talk about books, anyway.

Oh. I also like movies.

Day 6: Supports and Apprechiation

I didn’t understand this last year, and I can’t say I understand it much this year. Since last year, though, my situation has changed. I live in supported accomodation. This is different for everyone depending on the level of their needs and where they live. For me, it means I live with another autistic person and we have a set amount of hours that support workers come in everyday. So far, it’s four hours a day and we get extra hours on Mondays for any activities we want to do.

My support workers will help me with bills, going out, cleaning and cooking. Sometimes they will help us with other things as they come along like showering, medication and food shopping. Despire being labelled as “high functioning”, my function levels change day to day so my support workers can help accomodate that. I’m very lucky that I have support workers.

I’m…not really sure what the second half means, if I’m honest. I was just as confused last year.

Anyway, I’m now all caught up on Autism Acceptance Month posts so until tomorrow (maybe).

A.W

 

Autism Acceptance Month Day 3

 

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My Diagnosis/Discovery Story…

For this one, I don’t have much interesting to say because I was diagnosed very young and I remember very little about the diagnosis. My mother noticed something very early on, when I was around two years old, that something was up as she worked with children (and still does) and is very famlar with the way children “normally” develop.

I wasn’t too good at eye contact, I wasn’t social at all (to the point where I didn’t even cry for attention or cuddles, I just cried for what I needed and prefered to be alone), I was very sensitive to touch and sound, and I often had meltdowns as well as tantrums and there was an obvious difference between the two. One was caused by being overloaded, and the other was caused by not getting what I wanted.

This did not get better with age. If anything, it got more obvious. I had a flurry of constant school reports saying how I wouldn’t socialise, how I wanted to be on my own, how I had difficulties paying attention in class and doing what the teacher asked me to do.

At some point, I was diagnosed with Autism Spectrum Disorder when I was around ten years old through a series of tests, interviews and observations. After that, I was taken out of school where I was severely bullied and into an Autistic Unit attached to a mainstream school. It was pretty good, actually, for my overall mental health in the end. I’d reccommend that.

Sorry for four posts in one day but I’m caught up now so it should go back to normal soon.

A.W

Autism Acceptance Month 2019 – Intro Post

Last year, I did this same meme…question thing, but on my Twitter. So, this year, I thought it would be fun to try and do it on my blog. I’m about three days behind so you’re going to get three posts in one day, and I’m sorry about that! But the rest of the posts will be on time.

autism acceptance month

So, Day One, is the introduction post.

I’m A.W (not my real name, but I like to hide from people I know), I’m 22 and I live in Wales in the UK. I was diagnosed with Autism Spectrum Disorder at age ten. I also have depression and generalized/social anxiety disorder. Possible borderline personality disorder, as well.

I study Animal Management Level 3 at college, and until recently I volunteered at two local dog daycares. Due to a dog bite, both placements are being postponed for a bit.

I live with my friend and an elderly cat called Tessa, with two young rats called Groot and Rocket. Guardians of the Galaxy, of course!

I’m into reading a lot and paranormal horror. I’m not really sure what my other interests are – I suppose I’m into writing a lot, and I really love Disney. I’m gay, so of course I’m a stereotype and I love unicorns and rainbows. Witches are also pretty cool.

I think it would be interesting to see how much I’ve changed in a year but I can’t find the post I did on Twitter last year – typical!

Anyway, if you’re autistic too, feel free to join in