I'm going to be talking about my autism in this post and how I feel about it. I was diagnosed with autism in 2016 aged 21 and I'm going to talk about how having a late diagnosis affected me in a few different ways. I was diagnosed with Autism Spectrum Disorder or ASD and in this post I will either refer to it as 'autism' or 'ASD.' I will also refer to 'neurotypicals' which simply means people without autism. I may also talk about 'stimming;' this mean 'self stimulatory behaviour and includes things such as flapping the hands, banging the head or rocking. I also use 'assigned male/female at birth' instead of male or female when talking about certain things relating to people's biological make-up rather than their gender identity; an effort to make sure this post is trans-inclusive (being non-binary myself.) I'm proud to wear the label of 'autistic' and prefer disorder first language (I want to be referred to as an 'autistic person' rather than person first language 'person with autism.') My ASD is an integral part of who I am and I wouldn't be the person I am today without it.
I had a lot of traits of autism growing up; hand flapping, head banging, special interests, struggling socially, connecting more with animals than people etc. I had problems with certain textures and I was bullied badly at both primary and secondary school. I didn't understand how to socialise with neurotypical children and this was a very difficult time for me. I engaged in self-harming behaviours from the age of 12 and still struggle with them to this day. As I understand it, my parents did notice these behavioural difficulties but were unable to put two and two together, as well as not wanting me to have to live under a label. I appreciate this but also feel my childhood could have been different had I been diagnosed earlier. Whether this difference would be positive or not, nobody can know. We are where we are now and that's what we've got to work with. I'm very grateful for my parents and how they brought me up to 'pass' as neurotypical but now I've gotten my diagnosis I don't feel the need to disguise my autism for the comfort or convenience of others.
Bringing me onto my next topic; Applied Behaviour Analysis or ABA. Some schools and practitioners believe in 'treating' autism with this method of therapy. Developed in the 1980s, ABA is based on rewarding 'acceptable' behaviours and training 'unacceptable' behaviours out of children with ASD, in order for them to 'pass' as neurotypical. Some ABA practitioners even claim they can cure autism; which is, of course, impossible. I wasn't given ABA therapy but I do believe it's wrong, or at least, would've been wrong for me. Autism is the essence of who I am, and if it comes along with a bit of hand flapping and certain sensitivities, then so be it. I feel that the focus of ABA is to make the child more acceptable to society, whereas I feel the real issue is making society more accepting of those who are different.
I learned to get by in the world by mimicking others and watching them to work out what was acceptable and what wasn't. I still got it wrong regularly and was seen as the 'weird' kid who didn't understand how to be friends. I got on well with my school work achieving As and A*s at GCSE, but aside from that, school was a miserable place. Even now, though I no longer suppress my autistic characteristics, people regularly tell me that I don't 'look' autistic. I find this a really difficult thing to answer to, as of course I know and see how my autism affects every aspect of my life. I think the traditional 'Rain Man' character of ASD portrayed in the media has a lot to answer for. Autism is a wide spectrum and we're not all like Sheldon Cooper. Those assigned female at birth often have more difficulty getting diagnosed as the traits they show are different and not always as obvious as those assigned male at birth. This is a general rule and in no way how it works for everyone.
ASD has affected my life in lots of ways. Prior to my diagnosis I had several inpatient stays in psychological units with severe depression, self harm and suicidal thoughts and attempts. I was having issues with lights and sound, I was going into my own head for hours on end, sometimes I was completely unresponsive to external stimulus. I couldn't make eye contact and had severe anxiety attacks. I went non-verbal at times and was unable to speak, having to communicate either through gestures or writing things down. I would hit myself all over my body but especially me head and cut myself deeply and I was very distressed when things changed or my routine was disturbed. I took several large overdoses with the intention of ending my life. Having autism alongside other mental health conditions often causes them to be experienced more intensely and severely. Autism provides a great deal of focus and therefore if focussed on self-destructive pathways and behaviours it's harder for someone with autism to break that focus and change their routines and behavioural pathways. From my experience, treatments such as cognitive behavioural therapy don't work as well in those with ASD and this can be a challenge for mental health services. I've also heard that eating disorders are more common in those with autism, due to our perfectionist nature. I had several potential diagnoses queried including personality disorders before finally getting my ASD diagnosis a few months after my most recent admission for mental health in February 2016.
Since my diagnosis, and other improvements in my situation, things have been much better. I still have many traits of autism but they don't have a negative impact on my life as much any more. Autism gives me so much and I love that. It makes me verbose and passionate and focussed and determined. It means that I can organise and schedule and make sure things are done to time. It means I'm deeply empathetic and feel the emotions of others as if they were my own. I'm kind, loyal and compassionate, and I partly have my ASD to thank for that. I still stim and I hate labels in my clothes, I need advance notice when plans change and I can still go non-verbal when anxious. I do have the occasional meltdown and if you want eye contact I'm not the right person. But ask me about hamsters or polymer clay and I can tell you everything you need to know and more. I'm one of the most loving people I've met and I see past people's differences and accept everyone without judgement.
I recently got a tattoo of a puzzle piece celebrating my autism. I might be a bit funky and wiggly around the edges, but there are perfect people out there and in my life who fit right into my wiggles like puzzle pieces do. And for me; that's amazing. The scared little child who had nobody to play with has grown up into an adult who loves their friends and always has someone to talk to or hang out with. I've formed deep friendships (predominantly with other people on the spectrum) and reconnected with family members. I've embraced who I am and let myself be as autistic as I need to be. Gone are the days of embarrassment or shame because I have a stim toy with me or I wear ear defenders. I am Alley; I'm autistic and proud.
AlleyCat xx
© Alice Daley 2017
