CAT McGILL

I set out writing this post with the intention to reflect on the last 14 months or so since my autism diagnosis; however I’ve found a lot more to reflect about than I had expected(!) so this is going to end up as a series of posts, each with a particular theme. (Or more likely, it will be one post and then get forgotten.) This particular post is about how my diagnosis has helped me to manage the social interactions in my life, and reframe some of the negative beliefs I held about myself as a person.

Since being diagnosed with autism just over a year ago, I’ve been fairly open about it, both in my online life and my ‘real’ one. I feel the need to talk about it in a way that I never have with sexuality, mental health, or other aspects of my personality. Autism has become part of my identity.  

Many people are under the impression that autism exists on a linear spectrum, going from not-at-all-autistic to extremely-autistic (“Oh we’re all a bit on the spectrum, aren’t we?!!”). 

Autistic people are given labels that put us on a scale from ‘low’ to ‘high’ functioning. Most autistics I know aren’t that interested in the idea of lining ourselves up in order of who is the ‘most’ autistic (much as we may enjoy a nice orderly line) so effectively these labels are just a shorthand for professionals. This idea of graduated difficulties can be useful in some situations, and is essential under a medical model - for example an A&E nurse responsible for triaging patients needs to know that a broken leg is more severe than a sprained ankle. However, is it really appropriate to apply the same kind of scale to something that is simply a difference in how we are wired? Is there a risk that the use of functioning labels could mean people who are seen as ‘high functioning’ have their struggles dismissed or ignored, and people who are ‘low functioning’ are presumed incompetent and unable to communicate, when that may not actually be the case?

This year was my 39th Christmas as an autistic person, but the first Christmas that I have known I'm autistic. It's been interesting. One of the things I have found a little weird about exploring my autistic brain is that I keep getting these little moments of "Oh, that's why I've always done this...", and this Christmas has been no different.

I had a big one today. I've been reading lost of posts from other autistics on Twitter talking about coping with Christmas - the sensory overload, having to be social, and how they survive it all - all the while thinking that I've never really had issues with Christmas. I did have a little weep yesterday (Christmas Day itself), but that was because I had a stinking cold and didn't get enough sleep... wasn't it??

I am taking part in the Instagram Chronic Illness January Photo Challenge, and I thought I'd try and write a few blog posts to go along with the pictures I'm posting. Today's theme is 'Diagnosis'.

One of my main motivations for writing about my experience with autism - aside from using the process of writing to help me work through my thought process - is to provide another voice for women who have lived a significant portion of their lives without knowing that they're autistic. I'm certain I will know other people who are on the spectrum, but haven't realised it, and if writing honestly about my experiences can help someone else make a connection with their own life then I feel I ought to do it.

In my daughter's school at the moment they are having a 'Reading Challenge'. The rules of this challenge are: read to an adult, get the adult to sign your Reading Record, and when you have a signed record you are allowed to put a tick on the chart in the classroom. If you get a certain number of ticks in a week you get some extra playtime on Friday.

My daughter reads a *lot*, so on the surface of it this challenge shouldn't present a problem; as a minimum she usually reads to herself for at least half an hour every day before she goes to bed.

However, I found out that my sweet little girl has been denying herself ticks on the chart (and therefore her extra playtime), because her understanding of the rules is that you only tick if you have a signed diary; it has taken any amount of persuasion from me (and two conversations with the class teacher) to convince her otherwise. As a grown up, obviously I can understand that there is some flexibility inherent within the rules of the challenge; however my daughter strongly identifies with 'being a good girl' and takes pride with doing as she's been asked.

Autistic people aren't supposed to be any good at communication. It's this word that is always used - deficit - like there is something wrong or something lacking from the way we choose to communicate. Granted, autism is a spectrum, and some people on the spectrum do find communication difficult, and aren't very good at it. But then, some people who aren't on the spectrum also find communication difficult, and aren't very good at it.

I am *exceptionally* good at communicating my feelings, thoughts, opinions, and desires to other people. I say *exactly* what I mean, no more, no less. The trouble is, I have realised as I've got older, that most people don't like this at all.

I have been thinking a lot lately about identifying as autistic, and why - especially as a person who thought I knew quite a bit about autism - it took me so long to realise that I have it myself.

There are still a lot of misconceptions about what autism is and how it displays, particularly in females. When I was learning about autism in the late 90s, the lack of theory of mind was an essential part of diagnosis, and we were taught that autism is much less common in women, but much more severe. As I've been doing more recent research, I've found I don't really identify with a lot of the prominent autistic female narratives that I've found in books or blogs. For this reason I've decided to explore this in a series of short blogs as I get a chance to put my thoughts down, partly as a way of making sense of it myself, and partly for any other women who feel different but don't quite know why.

I've chosen noise as my next topic to explore as it's one that fascinates me, and I haven't quite got my head around it fully yet.

I have a very mixed relationship with noise. I'm a musician by trade, and a music teacher. I LOVE noise. When I was teaching secondary music I could quite happily sit at my desk surrounded by a class of thirty kids playing keyboard while I marked my A level essays, and still be able to pick out the ones who were hitting the demo button instead of doing their work. My classroom was noisy and chaotic, and I loved it.

On the flip side, sitting in a restaurant trying to have a meal I can literally lose the ability to speak, because I can't process the level of noise around me. Or maybe it's the type of noise - people speaking, glasses clinking, plates and cutlery, waiters walking around... I remember feeling a complete failure because every time I would go out for a nice meal with my ex-husband we would sit in silence. I found it really hard to hear what he was saying, even though he was only just across the table, and it was such a gargantuan effort to me to get my thoughts in order to think of anything to say.

I thought I couldn't be autistic because I didn't have any sensory issues.

Then I remembered how much I hate stickers. Thin, shiny bit of paper that stick to your skin. Urgh. And then they peel up at the edges and when you brush up against them they make a flicking noise... it makes me cringe. I hate going on training courses where they make you wear name stickers. I have learned to tolerate it, but I will take them off as soon as I can. The trouble is, taking them off involves touching them, and then when you try to throw them away they get stuck to your fingers...

While I'm on the subject on thin, shiny bits of paper, I also can't stand receipts. When I was younger I literally couldn't touch them without feeling a bit sick. Now I have desensitised myself enough that I can hold one with a thumb and finger until I can find a bin to put it in. Or I stuff them into a particular pocket of my handbag (which I can then steel myself to empty all in one go). If I'm shopping with my husband or daughter I will just get them to take the receipt. My husband is always telling me off for not keeping them, but, urgh, WHY WOULD I DO THAT???? I can't think of many things worse than a draw full of receipts. Actually, I can. Finding one in the bottom of a shopping bag.

So here goes, the start of a self-exploration of what autism means to me. In this first blog I'm going to talk about stimming.

The term 'stimming' refers to self-stimulating behaviours that are often used by people with autism or other developmental disorders. The most common one you're likely to think of is flapping your hands - my son does this a lot when he's excited! Some people rock, some people jiggle, hum, bang their head, make noises; there's really no end to the variety of stims possible.

My autism diagnosis is still a really new thing for me, but I’ve been feeling more and more over the last couple of weeks that I wanted to tell people about it. One reason is because there are quite probably tens of thousands of people like me, who have no clue that they’re autistic, and the only way that is going to change is by amplifying autistic voices and providing an alternative to the ‘awkward geeky guy’ stereotype that most people associate with the word ‘autism’.

The other reason though, I think, is because I feel this real need to live my new life as authentically as possible. My life since diagnosis has been a series of lightbulb moment - sudden realisations that explain so many different aspects of my past. I do feel like a different person. I feel calmer, lighter, more aware of myself. I’m enjoying getting to know the person under the many layers of masking that have built up over the last 38 years.

My life since diagnosis has been a series of lightbulb moment - sudden realisations that explain so many different aspects of my past. Click to Tweet