Autism Awareness Month

April is the month of Autism Awareness, a month which is used to spread the word about what autism is, what life is like for people with autism, learn about what the neurotypical, also referred to as NT’s, (people not on the spectrum) can do to help and support people who are neurodivergent.

While I am behind the whole premise of Autism Awareness Month, there are still things that have made me angry this month. One of these things is the amount of NT’s who still believe it is ok to flaunt the symbol of the puzzle piece to show autism acceptance and support, whether this be on t’shirts, jewellery, key chains or even nail art. I have seen so many posts on social media using this symbol as a show of support, and while the support is lovely, I can’t help wondering if some of this “support” is just lip service rather than true support in its fullest form.

The problem with the puzzle piece, for me, is the meaning behind the symbol itself first off. When we think of a puzzle piece we think of something that needs to be solved, a problem, something that can be fixed when put together in the correct way, a missing piece, something used for amusement, something confusing or perplexing. The connotations of the puzzle piece are degrading to people with autism. We are not missing a piece, we do not need to be studied, or solved and we, sure as heck, are not a problem that needs to be fixed. Many of these connotations lead us down the route that autism is something that can be fixed or cured which is really damaging to people with autism.

Add to the mix, a whole host of charities that use this symbol and have a belief system that we can be cured (you can find so many different articles on Google, just search autism puzzle piece offensive) which many NT’s think are helpful groups and it becomes even worse for us to get our authentic voices heard.

Seeing people on social media wearing clothing with the puzzle piece on, or even (in my case especially, going by groups I follow) people asking for nail art ideas incorporating this symbol for Autism Awareness month, and having it explained to them why this symbol does more harm than good to autistics, and after that, STILL going ahead and using the puzzle piece is even worse and has really made me wonder why we even have this month when people can still be so ignorant even when faced with the facts.

While we are on the subject of symbolism and meanings, I feel like I should speak about the “light it up blue for Autism” that is doing its rounds on social media. Light it up blue is a really outdated practice that enhances the stereotype that mainly males can present as autistic, and that just isn’t true. While it is true that males tend to be diagnosed with autism at a higher rate than females, though the female/male gap is steadily closing, the light it up blue campaign makes it harder as a female autistic to be heard and taken as seriously. Blue is typically used to represent the male gender and autism (back in the 1970’s) was seen as something typically male. Lighting it up blue only goes to reenforce this stereotypical view of autism being centred around males when just as many females have autism. The biggest problem with autism being viewed for so many years is that females were not being diagnosed as easily, many struggling with different aspects of life because of this and not being able to access the support, care and understanding that they should have had. This has led to many women, myself included, being plied with the wrong mediations, being treated for mental health and going about our day to day lives wondering why we are different. It’s only recently that it has been identified that women are better at masking and copying peers behaviour to fit in, which in itself can be damaging to the individual and is so exhausting, leading to burnout and a plethora of other symptoms.

Another thing that has riled me up agin and again, especially when NT’s find out that I am autistic is the comment that has been made to me so many times, “Everyone is a little bit autistic.”. And, honestly, it hurts to hear that, and so many times I have just shrugged it off and not bothered to correct people. In fact, I have stopped speaking about what difficulties I face day to day, and how I differ from others because I feel that, if someone wants to believe that then they will not really listen to me and just brush off my experiences, thoughts and feelings as something everyone deals with. I did read an analogy relating autism to pregnancy, when you do a pregnancy test the result is either pregnant or not pregnant, there is no “a bit pregnant” line, it is a definite you are or you aren’t. And while non pregnant people may have similar symptoms (like back pain, heartburn or tender breasts for example) these are not symptoms of being pregnant. Yes, everyone can have symptoms and sympathise with those things being experienced, but there is more going on in the background that are being dealt with, which as a whole make up the “being pregnant” symptoms, and it is the same with autism. Yes, you may get anxiety when needing to make a phone call, or do something but us autistics have other things we are dealing with that make us autistic. People are either autistic, or they are not.

Another comment I deal with is one that I think a lot of autistics have dealt with at one time or another, “But you don’t look autistic”. This one leaves me wanting to eyeroll so hard… what should autistics look like? Should we have a special dress code or hair colour, or should we have a special kind of body language, facial expression or greeting to use? I never know how to respond to this one, but recently I have started to think that maybe I should respond along the lines of “Yeah, well, you don’t look ignorant”… (if anyone has a way of addressing either of these – “Everyone is a bit autistic”, or “You don’t look autistic”, please let me know in the comments section.)

Another harmful thing that NT’s seem to believe is that being autistic means that the person is not clever, I have been spoken down to in voices that are used for children, over explained things to, and treated as if I am stupid. And I’ve even had comments along the lines of “but you have so many qualifications and even a degree!” or “but you have a full time job”, as if I shouldn’t be capable of, or clever enough to learn things or hold down a job. My brain is wired differently, I may approach things in a different way, or understand things differently, but this doesn’t mean I am incapable of these things.

So, what can you do to really get on board with Autism Awareness? Firstly, if you are one of those people who have used such phrases as “everyone is a bit autistic” or “you don’t look autistic”, please stop now, dig deep and try to work out why you use these phrases, and realise they are not compliments or helpful in any way, and could be doing more harm than good. I know, from my own experiences with such comments, that I shut down talking about autism, and it leaves me feeling like my feelings and thoughts are invalid.

Secondly, learn about the meaning behind the puzzle piece, seriously, do your research before jumping onboard with something that has so many negative connotations. If you do still choose to use the puzzle piece to represent autism then have your arguments ready, if you have sound reasons for using it then that is fine by me.

Start listening to the autistic community rather than those that are of the neurotypical community who cannot really speak for the autistic community. Start talking to those who are autistic and really listening to them.

Think about your behaviour towards those with autism, instead of treating them differently, learn what makes hem different and learn about what strengths they have rather than just seeing weaknesses.

Learn that we are not something to be cured, and that we don’t want to be cured. My autism is part of me, and like everyone else, I have my own strengths and weaknesses whether they are caused by my autism or not.

Learn to make reasonable adjustments, some things that cause me issues are too much noise, flashing lights and interruptions to what I am doing. I find it hard to think or get distracted by loud noises and lights, and interruptions can make it hard for me to return to what I was doing before that.

Learn about the different autism charities/communities. Autism Speaks (one of the main charities behind the #lightitblue campaign) goal is to end autism. They spends a chunk of its money in investigative work to cure autism and offers women who are pregnant a test to see if their unborn baby has autism and much of the publications released by this charity have a negative effect on autism.

Treat us like human beings, with respect and kindness, and realise we are all individuals with a different set of needs. While we are on the spectrum, stay away form labels such as “high/low functioning”. We all present with a different set of unique traits, as different as one finger print to another. I don’t class myself as high functioning or low functioning. I am on a sliding scale, some days I can be confident, make eye contact, go out and spend time with people, meet new people and be social. Other days I can barely make eye contact, and choose not to say too much to anyone. Some days I can make phone calls and make small talk and there are other days where I will avoid all social contact. There are days when I am able to go to the shops and days where it seems like too big a task. And when I do these things for too long, or have days that are busy and full on, or days where I experience too much, I need my own time, withdrawing from the world, just to recover and get my energy back. It doesn’t mean I am incapable and shouldn’t do these things if they make me feel like that, I prefer to see it as an athlete that works out and needs their rest days so on the days they are training they are running at their optimum and giving the best they have.

Don’t be afraid to ask questions, I love being asked about autism and what it means to me, but take your time to really listen and to learn from my answers and other autistic voices. I think that is what anyone ever truly wants in life.

Asperger’s and Me

I have Aspergers, or as some would say “high functioning autism”, though I hate the “high functioning” part.  If you have flu, it’s neither described as “mild flu” or “heavy flu” or anything like that, it’s just the flu.  So I have Aspergers, or autism.

“Asperger syndrome (AS), also known as Asperger’s, is a developmental disorder characterized by significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of behavior and interests.” (Wikipedia)

I was diagnosed back in the autumn of 2017 though I had an idea way before that, back in 2015, that I had Asperger’s.  It was a relief to get my diagnosis, I finally knew that I wasn’t the weird kid obsessed with art and stationery who was easily overwhelmed by things.  And neither was I the loner that was forever seeking acceptance from the other kids at school.

This presents several issues to me – I have a difficulty in verbalizing things and often have no idea what to say, sometimes what I do say can be classed as inappropriate.  I get overwhelmed by certain things, like certain noises or tones of noise and it can be difficult for me to follow a conversation in noisy atmospheres.  I have difficulty processing things like feelings and can bottle things up until I erupt.  I don’t handle stress particularly well, and can get stressed out pretty easily in certain situations.  I have a hard time concentrating if there is too much noise or other triggering factors.  I don’t like being interrupted when I am working on something as I like to focus fully on that and that alone, this means it can be hard for me to switch my focus to something else and then return to what I was doing before.  I talk too much about the same subjects, usually something I’m super interested in which can mean that I monopolise conversations.  I have a hard time deciphering what people can mean and need people to be really clear in what they say.

But, it’s not all bad…. I love arts and crafts and am really creative.  I do something with a high degree of attention and focus and have an eye for details which others may have missed.  When I set my mind to something I will work hard at it.  I’m a really fast learner, probably because I enjoy learning.  I love researching topics and knowing the ins and outs, whys and whats of subjects and will read every book or article about that topic too.  I have a BA (Hons) in Photographic Art and have a job.

Aspergers is just me, or I am just Aspergers and it is part of me.  I don’t really think about the fact that I have it, to me it is just part of my personality.

Mental Health and Me

In a time where mental health is spoken about daily, by the hour and by the minute and in a time where there is, or should be greater understanding of the struggles and difficulties of others it can still be really hard to talk about our mental struggles.  And there is still a sense of shame about talking about our problems and also a worry that we will be defined by our illness or, even worse, treated differently because of it.

I’m writing this as I have recently been diagnosed with anxiety, stress and low mood, and consequently I have been advised to take a break from work and to start taking tablets to help me feel better.  I also have Aspergers which is part of the autism spectrum which means I process things a bit differently to others and certain things can cause me stress and anxiety on a day-to-day basis.  Normally I am pretty good at dealing with day-to-day stresses, whether it be too much noise, the lights being too bright, lots of things going on, lots of different things to do, worrying about whether I am doing things right, interruptions, the list of things goes on and on….  I have developed coping strategies for most stresses that I encounter and on the whole they seem to work.  Well, they have done until recently…I started to notice that the coping mechanisms that I normally implemented were not working so well…making lists and prioritising what needs to be done usually stopped me from panicking but I noticed that faced with several tasks to do, at home or work, I couldn’t work out what to prioritize and started to feel like I couldn’t breathe as there was “too much to do” and that I couldn’t complete any of it.  I found that I couldn’t concentrate, following conversations was becoming hard work, the background noise becoming too distracting and as loud as the person talking to me, even coming home to the relative silence of my home felt like sitting in the middle of a football pitch at half time.  I couldn’t read my book, I lost where I was and kept reading the same sentence or paragraph over and over, or forgetting what I had just read and having to go back a page to re-read it.  Even sleep, the one total shut off from the world wasn’t helping, I was waking up after having nightmares, sweating and gasping for breath, or lying there, so totally drained of energy yet unable to sleep as my mind just kept going over things that had happened. should have happened, could have happened, might happen…

And while all this was happening my skin was suffering too…I broke out with eczema on my face – on my forehead – right.between.my.eyebrows.  (Thank you body for giving me something else to add to my stress and worry list…).

I eventually, after months of pretending I was fine (I sort of made myself believe that if I got up and put a smile on and managed to go to work, I couldn’t be that bad and that it was “all in my head” and that it was just me…) went to the doctor.

The doctor that I saw went through a load of questions with me about my life, feelings, mood, work, sleep and eating habits along with lots of other questions.  He said that my eczema outbreak had been caused by stress and that he thought I was dealing with high levels of stress and anxiety based on my answers to his questions and how he read my body language.  He gave me a prescription for Sertraline tablets which will increase serotonin levels in my brain and make me feel better in due time.

I’ve now been taking the medication for a month or so now, originally I was on half a tablet each day which was then upped to a full tablet every day.  The side effects are not that good, I’ve felt sick, dizzy, hot, cold, thirsty, not hungry, my concentration levels are still really low, following anything on the tv or reading is really difficult and I can’t decide whether it’s the meds or the stress and anxiety still.  I have days where I really don’t feel like leaving the house or even seeing anyone and just existing in my own bubble, though I feel like that sometimes anyway because of my aspergers (though that sort of feeling comes after time spent with too many people and being a bit sensory overwhelmed…).  It’s hard to know what is caused by the tablets, what is stress, anxiety, aspergers, or me.

Sometimes I feel like I am just this bundle of diagnosis’ and it can be hard to sift through what is what to the extent it can become exhausting and overwhelming.  Sometimes I wonder if I am becoming my diagnosis/illness or is it becoming me?  Sometimes I just feel really lost in it all and wonder if I’ll ever feel “normal”, whatever that is?

I do  know that I am really grateful to my family and friends who I am able to talk to and who accept me for me.  I’m sure it can be difficult to converse with me at times,  I am not particularly good at explaining how I’m feeling either or putting words to what I’m thinking or feeling, so explaining how I feel can be hard work.  I’m also greatful that the doctor that I have been seeing is really patient and understanding, he doesn’t try to put words into my mouth, he sits and listens or will ask more questions to get a full picture of it all.

There is no shame in seeking help for whatever is going on in your mind, whether it is speaking to a relative or friend, a doctor or health worker, or anyone who you can trust.  If you notice that you are struggling with things then reach out and talk to someone.