Tag: autistic

Women with Autism

Posted on by Monique Barrett

Most of my life I grew up not fully understanding myself and my autism. When I looked up the characteristics or symptoms, heard people talking about it or saw it represented in movies or on TV, I was confused because it did not quite fit me. It was like my hand was supposed to fit in a glove, but it was either too tight or too loose in each finger. There were some parts that did fit, so I continued to wear this glove, pretending that the rest fit as well.

I was diagnosed with aspergers or autism (and ADHD) when I was 5. I do not know if anyone properly explained to me about what ASD (autistic spectrum disorder) is, and if they did, I was too young to remember. When I grew up, I did not have a good understanding of it at all and I had a strong belief that it made me “bad.” I was ashamed of myself and how I treated people, even though I could not help the way I was and am.

It’s only in the last few years that I embraced my condition and accepted it. Before, I would keep it as a secret and tried my best to be “normal.” People wouldn’t know that I had autism, or at least I was convinced of that. I remember crying while confiding in certain people, feeling like I had to if I had a breakdown or tantrum in front of them. Those few people I told were extremely understanding and supportive, without a trace of judgement. That confused me, because did they not know that it made me bad? Did they not know how shameful it is?

The last two years I have completely owned my autism. It was no longer a secret and I would publicly talk about it, especially online, which felt so liberating. The thing is, even though I was no longer ashamed, I still was confused. Why doesn’t the glove quite fit? I can’t have autism because I can do this or that, right?

On the 6th of September of 2019 my partner and I went to a workshop that focused on women with ASD and I am truly so glad that we went. Even though the workshop was mainly for carers, teachers and parents, I found that it also really helped me to understand myself better too. It all suddenly made sense. The characteristics that women with autism have are different than men with autism, and because it is a lot more common for boys to have ASD, most media represented the characteristics that they have. I wrote as much and as fast as I could in the little book in my handbag, with all of the validating information I learnt. Here is some of it that I can actually understand from my scribbles.

Apparently women and girls with ASD are often artistic, which was a huge thing for me, because I had the idea that people with autism are mainly logic and maths focused. Not always the case! Another big thing that felt very true for me was that women often are able to analyse and become mirrors. The reason why girls are often not represented as people with ASD is because they are very good at pretending to be normal, by copying others. Girls are better with social skills, communication and imagination than some boys, so their autism can go often unseen and they are harder to diagnose.

We often like things to be even and colour can often affect mood and concentration. I remember this clearly from when I was in primary school, because classrooms were often very colour coded. I remember thinking at length why certain magazine files that were labelled for the different kinds of books, homework and more were coloured the way they were. I remember disagreeing with certain colour choices too. And as for liking things to be even, I never really thought that was a symptom, because doesn’t everyone like that?

Another thing is that for girls with autism, rules make sense to us so we often never break a rule. We try hard at school and are seen as a “good girl,” particularly in primary school. We are often passive and can’t be assertive and are unable to say “no” to friends and others. A lot of that rings very true for me and are things that I thought were examples of “not autistic behaviour.” I thought that they were examples of me pretending that I was normal! I always thought that often autistic children were very naughty at school, but in primary school, especially, I was always very well behaved. It was when I got home that my tantrums and breakdowns often came out. This was just the start of the workshop and already I was feeling so validated.

Girls with autism or ASD often withdraw or shutdown rather than be angry. We are unable to “read” other people’s minds and so we ask questions to be in control. We are visual thinkers, which is like we are watching a DVD in our head. Also, we tend to have increased anxiety, so we need to prepare before social events as to be socially successful. We are great “actors,” and we practice and learn social phrases. This is called mirroring or “social echolalia.” This leads to mental and physical exhaustion and therefore less desire to interact and an increase in anxiety.

We create personas based on people we perceive as successful. I remember watching this youtuber who played video games, for hours on end, learning how to talk like her and practising phrases she said in the mirror, because I thought she sounded cool and I wanted to be like her. I struggled with talking in my earlier years, but once I started medication and working hard at home in kindergarten, I excelled. I was really good at public speaking, debating and acting. People saw that and thought I was very socially competent, but what people don’t see is all the work I put in to be social.

We then went to what to do with these women and girls as teachers and carers. The lady taking the workshop said that we should build flexibility into rules, make clear specific rules BEFORE an event, state behaviour you want rather than you don’t want, give explanations, give clear boundaries and discuss what to do when rules are broken. I think these are excellent things to do with women like me. It really helps me to clearly understand the entire details of an event and what to do, including if things go wrong. Otherwise I can get extremely overwhelmed, upset and anxious. It really does help me to understand, because without explanations, everything become chaos.

Females on the spectrum can actually over-empathise. We don’t know what to do in situations that involve empathy, because we’re not NOT caring, we just don’t know what to do. I find I often get instantly overwhelmed when someone shares something they are going through with me, because I don’t know how to communicate or express how much I care for them and wish they were not feeling such pain. I suddenly feel inadequate in my communication skills and I overthink, thinking that I am bad and selfish for not replying in the “right” way.

Lots of girls come home from school and have meltdowns, or we rest or sleep. We recharge by being alone, or in a fantasy world. We have obsessive interests and I outlined those two words many times in my little book. God, I have obsessive interests. And it always seems to be in a cycle – I often get very invested in video games, art, video making, comics, TV, drag, writing, etc. for hours on end for days or weeks and then suddenly I move on. Then in the future, the obsessive interest comes back.

We often start a lot of projects and stop. I do this all the time and I hate it! It makes me feel like I never finish anything. Also we can have friends, but not know a lot about them or want to see them outside of school. I have some lovely friends but I hate how I just can’t seem to keep in contact with them or see them in real life. I think it’s been a year or more for a few of them. I find it very hard to keep hold of friendships. We can be aware that we are different and therefore we can be self-conscious because of this. We often have a lack of emotional talk and so we don’t open up. It’s only been recently that I have pushed myself to open up to friends, because all of my primary school and high school friendships were very one-dimensional. I felt like we didn’t really know each other at all.

We withdraw due to perceived or real lack of success in friendships, so we just give up. I am guilty of this many times, because we view things that are not “mistakes” as mistakes. We do not like to be seen as different, we can take things personally and we can take on other people’s emotions. We “marinate,” which is sitting with something and letting it process. An example is getting results from a test, being happy and then after a while thinking, “I’m bad at maths because I got 1% wrong.”

As I said before, women with ASD can have a lot of anxiety. We are uncertain about future events, so we worry about negative outcomes. We live on high alert and so things feel out of our control. We are perfectionists with high expectations and we have more anxiety triggers. We want a sense of control and for things to be predictable. We wake up with higher levels of anxiety, but we find it difficult to recognise and label anxious feelings. Lots of things that add up are not recognised, so we look for the main event when there are actually many little ones.

Women with ASD are often misdiagnosed with things like BPD or bipolar. Like I said before, autism is portrayed in a very certain way in media, which can be good for boys, but not for girls. I am so glad I went to this workshop, because now I understand myself so much better and I feel validated in my condition. Some of these things I thought were examples of me not having autism were actually traits that proved that I did have it! I hope women or AFAB people feel validated as well from reading this. It feels so good to feel proud of myself not despite, but because of who I am and my autism. I would not be me without it, so I am grateful. Thank you so much for reading and I hope you found some understanding of yourself or others as well. Understanding our condition or ourselves is a life-long journey and is always growing and changing, so validation is important and I hope we continue to find it.

I am autistic and proud!

Disability and Art

Posted on by Monique Barrett

To me, disability and art goes hand in hand. When I struggled to communicate what I needed or wanted as a young child, I would draw pictures of it and then show my mum. When I felt isolated or misunderstood at school, I would walk around the playground, daydreaming about the different artworks and stories I could create. I had trouble understanding faces and emotions, so I drew them over and over to understand them better. I would go to the library and draw with my peers as a way of relating to them in ways I couldn’t with speech. I use my voice through art and I always have, because for me, art is about communication, from vague to complex ideas, for others and for myself.

Art has taught me things that I used to find hard to grasp and it bridged that gap between myself and others. My autism has informed my art in ways that I hope other neuro-divergent people would also understand. I used to be ashamed of my condition and how I believed it limited me, but now I’m proud of the unique insight of the world, its living inhabitants and complex topics that it has given me. Art has helped me to tackle the problems and trauma in my life that I hope makes others feel understood and validated too.

About a year and a half ago I went through my first psychosis episode that hospitalised me for nearly two months. A while later I was diagnosed with schizo-affective disorder which is a combination of schizophrenia and a mood disorder. It completely changed my life and this new disability has brought so many new trials. But art, like always, has helped me. During those days in the psychiatric ward, I would spend my time painting and therefore processing my reality and emotions. At that time I found it hard to communicate what was happening for me, even to myself, so I would dump my thoughts, hallucinations, fears, questions and feelings onto a canvas. Just like when I was a kid, art helped me connect to others and myself in ways I couldn’t without it.

Art has the power to let us process emotions and become more brave with each stroke, which can be difficult to accomplish with those unable to voice their truth in other ways. Everyone who picks up a paint brush or a pencil or anything else to make a mark is a leader. It means having the courage to convey your being to others, communicating feelings and thoughts that can change the world and the way people think and act. People with disabilities often are incredibly insightful and wise and so their art is vital in our society that goes against emotional intelligence. We are needed.

Testing Limits

Posted on by Monique Barrett

I have known that I have needed to write about at least a slither of my experience in 2016 even while I was living through it. I could write a book on just that year alone, but as I struggle to even think about some of those memories, let alone speak or write about them, I know that I need to start at the first step, which for me is just writing something – to try to capture a moment, no matter how fleeting.

So many people have asked me the question, “How was it?” whenever I mentioned the fact that I spent three seasons in another country. I know that these people mean well, but I also know that they are looking for the “correct” response, which is the one I always give. “It was such a great experience! I really have learnt so much from it.” This statement is true, it was a good experience, at least partly and I certainly learnt and have grown from every moment I spent on Japan’s soil. I still fully stand by my belief that if you have the opportunity to go on exchange, please do it! It is honestly an experience that is quite unique and is something that could not be replaced by any other. I saw so many beautiful places, met so many wonderful and nurturing people and I have so many exciting memories. My exchange involved a lot of beauty, fun, excitement and happiness, so why is that every time that the topic of my exchange in Japan is brought up that I get a huge lump in my throat and I begin to tear up?

Recently I was cleaning out my desk and I came across an old notebook, hardly touched, that had several pages that 14 or 15 year old me wrote in. If the words were summarised it would be,

Living in Japan will be so challenging, so difficult and incredibly hard. But I will get through it, I have to, because I need to prove to myself that I can.

When I was 4, I believe, I was diagnosed with high-functioning autism, or Aspergers, depending on the year and what the doctor was most comfortable with, and ADHD. There are so many stories I could tell about my beginning years, how I was a horrible, tantrum-throwing brat and about my struggle with words, speaking, reading, writing and mostly understanding humans and what was socially appropriate. That will be another blog post, because I have a lot to say on the matter. However, when I was a bit older, I became so grossly ashamed of how hard I made it for my parents who raised me and also I became grossly ashamed of who I was as a person.

I believe when I was around 8 or 9, I made a promise with myself that I would be well-mannered, polite and most importantly, that I would try my best to be what I considered, “normal,” aka: neurotypical. I did not want anything more in the world than to be able to do what I thought everybody else could. I did not want my condition to define me, but by striving so hard to be “normal,” I completely rejected who I truly was and I simply did not accept any weaknesses from myself. I worked so hard on understanding what all the different facial expressions and body language meant, what was considered socially appropriate, to always think hard before I opened my mouth and essentially, how to act “appropriately.” I transformed from Satan’s loud and angry spawn to a quiet, polite, but constantly self-judging child. I worked hard on my studies, thinking I would dazzle everyone and become a doctor or lawyer, as I used to be a child who almost did not make mainstreaming education. I wanted to be perfect and I allowed no mistakes. But the most reoccurring thought in my mind was, “There must be nothing that I can’t do. And if there is, I will do it anyway. I will never let my condition stop me or tell me that I can’t.”

I have a lot to thank myself for, due to having that mindset. If I didn’t work as hard as I did basically “studying human behaviour,” and improving my reading, writing and speaking, then just maybe I would not have the capabilities that I do today. But this adamant goal I had to “pass,” was actually incredibly toxic and harmful for my self-esteem and acceptance of who I truly am. If I wasn’t perfect, I punished myself and made myself do it anyway. This mindset followed me way into my adolescent years and it was a reason, if not the main one, why I needed to go on exchange in Japan, that I had no choice but to. I needed to prove to myself that I could do something that involved going against almost every single one of my limitations and what I considered, “flaws.”

So when I got the response back from my application for an exchange in Japan, I was crushed and offended by the word, “No.” Their reasoning was that because I had autism, that an exchange would be impossible for someone like me – I would not be able to cope. This reinforced the insecurities I had about my capabilities and made my blood boil.

“They are judging me based on some meaningless words on paper! If they met me, they would know that I am more than capable and hardworking enough to be able to do this!” I would angrily tell anybody who would listen.

I still believe that an organisation should not judge someone’s applicability based on their condition, but even so, I have often asked myself, “Was this one decision the catalyst? Would my depression have gotten as bad as it did if I never went to Japan?” I admit that a lot of things that contributed to my mental health was because of my experience as an exchange student and I made certain decisions that had terrible consequences because of it, but I also am aware that my mental health became a problem years before I even considered going on an exchange. The jury is still out on this.

After they declined my application, my parents and I worked hard on changing their mind. And it worked! The organisation had several meetings and one day I got the response I was looking for – that I were to pack my bags because I was to arrive in Japan very soon. I was leaving one month after than originally planned, therefore cutting my 10 month exchange to 9, but I was so incredibly excited – the thing I worked so bloody hard to be able to do, was now a reality!

It is so interesting to reflect on this experience and through writing these words, I now understand that I must continue. Those 9 months in Japan was a rollercoaster like no other. The lessons that I learnt from it that I hold the dearest to my heart, are that I could no longer hide from who I am, that my condition is not something I should be ashamed of and most importantly, that it is okay to have limitations. Through it I learnt to shed myself from having to be “perfect,” or “normal.” I learnt so many things about myself and how that even though I am very capable, acknowledging my weaknesses does not make me weak. The only reason that I lasted the entire exchange was because I was running from the reality of these limitations that I had. Yes, I am now able to be proud of myself to have achieved something that was honestly really difficult for someone like me, but there was a lot that could have been avoided if I just allowed myself to be human.

Not only is it okay to make mistakes and to be gentle with your limitations, but it is also crucial for building character and to achieve true wonders…

The wonders of being human and therefore flawed.

This is part one of, ‘Testing Limits,’ as I want to explore with further blog entries my experience of the lows and highs of living in Japan and how I came to this lesson of teaching myself self-acceptance. Thank you for reading, (you are wonderful!) and allowing myself to explore a topic that I have struggled with talking about truthfully until now. Love and light and please always choose compassion.

Proud to be neurodivergent!