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!