Autism is mine – my thing, my special filter on the world. It is who I am. But what annoys me most about being autistic? In spite of the overriding feeling of relief after my diagnosis, in spite of the positive things Autism brings to my life, and in spite of my genuine pride at being one of the one in a hundred born with the condition, let’s be honest: sometimes Autism is…well, not that great.
As we speak, psychiatrists are scrambling around to try and divide Autism up into different experiences. High and Low Functioning have fallen out of favour as terms, partly due to their eugenics connection, partly due to the increased understanding that Autism will cause the people it inhabits to be both high and low functioning at different times. Asperger’s is no longer used as a diagnosis in the UK: it is a part of Autism, not a separate condition. Whether scientists successfully manage to draw dividing lines between different types of Autism that actually find favour with the community – who tend to prefer Autism alone as a diagnosis – is anyone’s guess. But I would argue that, if we are talking about the negatives of Autism, then a non-verbal autistic person who cannot self-care will experience different troubles to an autie who is largely verbal, independent and capable of forming social attachments.
If I had been diagnosed fifteen years ago (and believe me, I wish I had) then my diagnosis would have been Asperger’s. People still describe me as “high functioning” even now. I am verbal most of the time, often too verbal for my own good. I hold facts easily and rattle them off, I am quick, intense and wear spectacles. In short, I rather sadly conform to the awkward, aspie nerd who only comes alive talking about their interests but doesn’t bother to hide the fact that they find a lot of other people slow and dull. This version of Autism comes with its own set of problems. Some things that I struggle with and I hear a lot of similarly expressed sentiments on autistic social media are:
Shame: those of us who are relatively successful at masking often find that we internalise the hatred and distrust that other people show towards those who are different. We spend so much time hiding our condition that it becomes something to be ashamed of.
Imposter Syndrome: we feel (are often made to feel) that we are “less” autistic because we do more things that neurotypicals approve of, such as work and form relationships. Therefore, we feel less able to ask for help.
Guilt: we suffer because we are very good at some things. Other people then judge us on that basis and find us wanting in other areas that they consider easy and basic. We realise that we can’t live up to their neurotypical standards and expectations.
Hiding burnout: we feel more guilty about burning out and needing to take time away from others.
Many would argue that all of these problems, these negative feelings about our autistic selves, are not part of the actual condition of Autism. They stem from being autistic in a world that is neurotypical, and the accompanying lack of understanding and care that goes with this in our daily life. I would agree. So, looking at autism in as much of a vacuum as we can, what is, in my opinion, the trait that I struggle with the most? The answer may come as something of a surprise and possibly an anti-climax. The thing that I hate the most about my Autism is…. echolalia.
Echolalia (a rather annoyingly beautiful word) is common in most children up until the age of three. But if you are repeating words or strings of phrases unconsciously or impulsively after that time, it tends to be interpreted as a sign of Autism. As a condition, echolalia can co-exist with schizophrenia and appear after brain trauma; it doesn’t always co-occur with Autism. But around seventy-five percent of auties also have echolalia, so it is a commonly shared experience.
My echolalia takes many forms, all of them, to my mind, sneaky and a bit embarrassing. I will repeat the last word in a sentence involuntarily, directly after a person has finished speaking. Sentences of other people, whether they are directly in front of me or on the TV, float like threads through my consciousness, coming out of my mouth days, weeks, months or years later. I also say the word “back” when I am stressed, as a kind of involuntary mechanism to calm me down.
All of the above is odd by neurotypical standards, distinctly odd. I get funny looks, raised eyebrows, exclamations. My parents stoically ignore it. I feel my own face freeze in shock and embarrassment when I realise (always too late) that I have echoed in public. In Greek mythology, Echo was a nymph condemned to echo others as a kind of curse. It separated her from others until she faded away. I sometimes feel so frustrated and ridiculous because of my echolalia that I can see why the Greek Gods wielded it as a punishment.
Why do I hate echolalia so much? To me, it is living proof of the everyday tyranny that autism can exert: no matter how successfully I mask, how much I manage to get through things, how neurotypically well I think I am doing, “in the jam section” I suddenly say to myself. It was a line I read. A joke from Jeanette Winterson about her novel “Oranges are not the only fruit” being misplaced in bookstores, just in case you were wondering. It was also a timely reminder that I have a neurological condition that will last a lifetime.
Are there any positives to echolalia? Well, maybe one: in its weird, unwelcome way, it is helping me unmask. I used to be horrified by echolalia and label it the product of an “overactive imagination” to friends/colleagues/waiters/the dustman when something slipped out in public. Now, it is a really good cue to actually pull myself together and tell people that I am autistic. This is what getting an Autism diagnosis was all about, being able to explain things both to others and to myself. So, I suppose that even echolalia is a cloud with a silver lining. However I choose to look at it, echolalia is part of me.
Lastly, an apology: sorry about the negativity everyone, I had to get that all off my chest about echolalia. This post was rather a cathartic experience. The words flowed easily, smoothly, as though they just slipped out. Rather like my vocalisation of them, whether I want to vocalise them or not. The power to speak or stay silent, the words we choose to say – that choice and power is not something that autistic people always enjoy.
