When I was asked to write a piece for The Spectrum Women Magazine I was blown away by the invitation. Who me? Little ol’ me? What would I have to offer any other Autistic woman in the world?
I know that many Autistic women may feel similar. The world today doesn’t look kindly on us and our eccentricities. We are forced into wearing a “normal” facade that doesn’t fit us. It’s obvious that it doesn’t fit us, and yet we are made to wear it day after day. But what is so bad about being different? I mean really?
Autistics are very different. Our whole neurology is different. And in an effort to make us normal we are forced through therapies and treatments. While the average child is off playing and living life, an Autistic child can be subjected to many therapies and at times extreme and dangerous treatments that may include the following: Chelation therapies, bleach enemas, ABA (Applied Behaviour Analysis), diets, eugenics, and even shock therapy…… so that they can “pass” in the typically designed world. Instead of raising children with acceptance and teaching them how to be the best they can be with their gifts, as would occur with most children, it is still too often we see children being moulded to fit into society and made to feel it is never acceptable to just be their unadulterated selves.
As an Autistic mum of an Autistic child my perspective is different to typical parents. I don’t see a separation from my son and autism as they cannot be disconnected from each other. I want him to be the best little person he can be, with his gifts, letting him grow into the person he wants to be. As with many of us Autistic mums we do things with a fierceness and protectiveness, with every little bit of research power we have (oh boy are they the research queens, and will back up their findings with graphs and flow charts and statics going back three centuries!).
I love being an Autistic mum and I wouldn’t want to be anything else other than what I am. If you ask any Autistic if they hate being Autistic, the majority will tell you that it is the world they hate; that makes them feel bad or disconnected for being born with the neurology they have.
I do everything I can to teach my son all the things I wish I had known when I was his age. I try to teach him not to make the same mistakes I did. But in the end I don’t think it will be something I will need to be that fearful about. I know he will make the mistakes he will need to learn from, but in the end he has a mother who knows, who KNOWS, what it’s like to be him.
I know that my mother did what she thought was right for me when I was little. But in the end, the things she did caused long term problems that I will probably not ever move away from. Not in this world anyway.
In an effort to make me normal, and pass into a typical society, I was prevented from stimming (self-stimulatory behaviour which serves to self-regulate a system on the verge of overload), which has led to my adult self-destructive behaviours. I remember trips to lots of doctors and specialists. I went through school having no idea why I was there and always left at the bottom. Last picked for teams and always picked on. I endured a lot of bullying. I knew I was different but I didn’t know why. I went through my whole school life feeling like everyone was in on a secret, and that they wouldn’t tell me what it was. I thought I was defective. I thought I was stupid.
When I changed schools in year 10 I actually told my parents not to tell the school I was stupid, because I wanted to see if I could make it there on my own. Oh boy, what a mistake that was. I was suddenly being made to do work no one had bothered to teach me before. As you can guess I didn’t make it past year 11. The amount of stress I was under from the work I didn’t know and the bullying I had suffered had me home most days. I’m surprised I didn’t develop an ulcer!
It wasn’t until I left school that my mother finally told me the reasons for my struggles. I had Aspergers Syndrome. After many years of enduring abusive relationships, one after another that I was finally on my own for the first time. Just my son and I in our own little place. I love those times. Oh I complained a lot about the state of the place, and the real estate agency, and so many other things, but it was just my boy and I. And it was during those five years I started learning.
I learned about Autism. I learned about me. I learned a lot. What prompted this was having my son receive his diagnosis of Autism/ADHD. I wanted to do everything I could to help my son. Yes, I did go down the diet path, but not in the effort to cure, but because of dietary sensitivities. I also wanted to be the best advocate for my child and have all the information I could get to help with that.
The most important thing I learned in those days was that I was ok. There wasn’t anything wrong with me. I was ok. I was a good person. I was a nice person. I did things differently but what was wrong with that? I moved past caring what other people thought of me stimming in public. Of skipping through the shops with my son hand in hand. Of speaking fast and flapping when I was happy. I wasn’t hurting anyone. In the end there will be social rules to live by. To be polite. Be nice. Don’t just care about yourself, care about other people too. So while I won’t stop doing the things I need to do to get through the day like anyone else, I won’t deliberately make someone uncomfortable with those things. I try to not be blunt in a way that will be offensive or hurtful on purpose. I won’t be rude. I try to make sure I’m not dominating a conversation (and oh boy that can be hard, when I’m excited about something). Of course I don’t need to be as worried about these things around others of the same neurology as I am.
But in everything I do and learn, I also teach my son.
One thing I learned is that while a people in general are born with the innate knowledge of reading facial expressions and social cues, Autistics usually do not have this inherent life skill. That is what messes us up in social situations. We are raised by trying to force our brains to think and pick up things that we are not programmed with in the first place. It took me till I was in my early 40’s to realise this.
Experimenting with my son we did online tests on body language and facial expressions. On body language we scored very high. On facial expression we scored very low. So in social situations what messes us up and confuses us is that what people are saying with words is not what they are saying with their body. But the majority of Autistics are not even aware of this, because they are taught from day dot to read facial expressions. But it’s not a language that we can easily pick up. Not without a lot of difficulty and error. I can read my husband’s body language so well it’s almost like I can read his mind, which he hates.
I learned a lot about my senses too. It seems the older I get the more sensitive I’ve become. I have gotten to the stage where I can smell when someone is sick. This can also work in the opposite in that I hate perfumes and hair spray and can’t tolerate any chemicals in my house.
I love how visual I am and how I can pick up details and see more of the colour spectrum, but I can’t watch or see anything graphic or violent because I can physically feel what I am seeing. This is one of the reasons for the term empath that more and more people are becoming familiar with in relation to an Autistic. I can “feel” people, their frequency, their wave length. Some are stronger than others and this can be very uncomfortable to be around. I believe it’s a mix of subconsciously reading another’s body language (because even though I am aware reading faces is not my first language, I still forget that) and picking up the frequency that everyone gives off. It’s being very over sensitive to everything in the world, from the environment, to atmospheric pressure, the phases of the moon and so on.
I love how I can hear our cat breathing through a closed door, but hate high pitched or loud banging noises. So while there are some things I would like a better filter on and control over, I love being what I am. My son loves being what he is. He sees his abilities as a super power. He can’t understand why his dad doesn’t accept him for the way he is, so I try to compensate for that.
I have an assistance dog named Kobash. He helps me in the outside world. He stands behind me in lines so no one can get up behind me. He branches out when people are walking too close and are too many. He also does deep pressure therapy when my system is over loaded from excess stimuli from being in public. He is needed right now. He is needed because this world is not made for me. It’s loud, it’s disordered, it’s chaotic, and it’s not Autism friendly.
What we as Autistic people need is not awareness. We have enough of that now. What we need is acceptance. We need this world to make adjustments for us. We are here, we’ve been here for a very long time now, regardless of the theories of autism causes, plus we are becoming more numerous. All we want is to have the chances that any other person wants and deserves. I can see a world where differences and neurodiversity is embraced and celebrated and cherished. But in reality I don’t see that world coming any time soon.
There are so many positives about us. Our fierce loyalty, our logical brains, our research capabilities, our child-like playfulness that lasts all our lives. The list goes on, and maybe one day I will embellish more on my personal studies of Autism.
The best thing that anyone can do for the month of April who wants to support Autism is EDUCATE yourself. Do your research. Involve Autistics, ask Autistics. We have a voice. Even those of us with no physical voice. You just have to learn how to tune in to our wave length. Instead of making us do all the work, why not meet us half way?
Kobash. Service Dog in Blue
Kobash Mats by Elle