Welcome to Steve’s Aspie Adventures

Whether you are reading this as a parent, carer, friend or are on the spectrum yourself, a warm welcome to the blog and I’d welcome your comments. I was diagnosed with an autism spectrum condition as a teenager. Throughout my life this has brought unique challenges, deep lows but also very happy times. I hope with this blog I can share some of my experiences, challenges and successes with you. My hope is that it can help along the way at breaking down some of the fears, misconceptions, stereotypes that come hand in hand with Autism by giving an insight into what it’s like as an individual living with the condition.

At times when I’m affected most by my condition life can grind to a halt, but that has given me a drive to experience all I can when I’m feeling well. Travel brings a new perspective on life and the experiences it brings have made my good days even better and given hope in my bad days. For me it’s a metaphorical middle finger to a life-long condition. In my other blog (Roaming Steve) I share some stories of my travel and adventures.

I hope you enjoy reading this blog. Feel free to share this with your friends if you've found it helpful. I'd love to hear your thoughts, any topics you'd like to read about and own experiences so please comment or message me.

Please note, that in all my blog entries I can only relay my personal experiences and perspective. It is important to remember that every single person on the spectrum is an individual with a different story to mine. I have no medical expertise or training and am writing to share my personal experiences only.

Friday, 4 July 2014

Can I call you an Aspie?

‘Can I call you an aspie? Don’t you find that offensive?’ I’ve been asked this a number of times since starting this blog, ‘Call me what you like!’ would be my flippant reply, but in reality this question hints at a deeper issue. One of personal sensitivities, political correctness and fear of offending. A huge obstacle to open communication is right here staring at us – simply because of not knowing what to and what not to so say.

Why should this be the case? I believe this can be broken down twofold.

As an individual growing up I’ve encountered my fair share of abusive and nasty comments, relentless bullying at school and often unhelpful remarks even from professionalsUnfortunately this experience is all to common for those on the spectrum. Clearly this shapes the way each individual will refer to themselves and which words they find acceptable. When talking with friends on the spectrum I tend to steer my words to match theirs and let them take the lead. After all it is unlikely they will refer to themselves using a term they find unpalatable. For me, the terms I use change to suit the audience. I tend to generically refer to myself as ‘autistic’ to a neurotypical (NT) audience, whereas I sway towards HFA with professionals and ‘Aspie’ amongst friends.

For professionals we encounter a new obstacle. The dreaded political correctness. I appreciate the need for a set standard on terminologies but the ‘correct’ terms changeover time and vary regionally. As a (patient / client / service user / whatever I officially am labelled as!) what I want to be called is irrelevant. Set guidelines are in place as to what to say. This is designed to try and create a unified and inoffensive set of terms for professionals to use.  

Because of all of this, in a hypothetical conversation between myself, my key worker, doctor and friend, we may all be using different terms for the same thing. Confused? I don’t blame you! Lets unpack a few of the phrases and terms you may hear…

Informal Terms:

My blog is called Steve’s Aspie Adventures, so the term Aspie is clearly a good place to start. This is a shortened and slang term for Asperger’s Syndrome. I use it commonly amongst friends and when asked will tend to say, ‘I’m an Aspie’. I do not see it as insulting at all, although it is definitely casual. It would sound strange if my doctor called me an Aspie, but it certainly wouldn’t concern me.

‘So you call each other Aspies, but we (NTs) shouldn’t?’ asked a friend. Good question, but it’s not that simple. For some people the term Aspie is actually very offensive. It could be that it is simply too casual. For other’s it is a cutesy label.

How can you tell if it’s ok to use or not? Listen and ask.

I tend to use the term Aspie in relation to myself, as that pinpoints closer where I fall in the spectrum. But sometimes I use the term Autie. This is a shortened form of Autistic.

It’s not just informal terms for people on the spectrum you may hear, we have lingo to describe those not on the spectrum as well. The term Normie can be used as a slang version of Neurotypical.

Let’s get more formal:

How about Asperger’s Syndrome? This one’s simple right? Wrong! Lets start with that word ‘Syndrome.’ Many people don’t like this word at all and drop it altogether, simply saying ‘Asperger’s’ for others they prefer to abbreviate it to A.S.

The confusion doesn’t stop there. What about pronunciation?

Asperger’s takes it’s name from an Austrian pediatrician named Hans Asperger. In his native Austria the pronunciation would be As-Bur-Ger, so why do we often hear it pronounced As-Bur-Jer? This is simple, we have a clear case of bully fodder here. As South Park’s Eric Cartman so eloquently put it, ‘I’ve got ass burgers!’ while pulling a hamburger from his trousers! I’ve never felt troubled by this pun. In fact I find it quite amusing, however clearly some people can take great offense to this, especially if they have been subjected to cruel taunts in thepast. So let’s stick to the professional terms?

What’s politically correct?

Well Asperger’s (however you pronounce it) officially no longer exists in a professional sense! Since last year the diagnosis has switched to High Functioning Autism (HFA), which is an Autistic Spectrum Condition (ASC) (If you live in England) or an Autistic Spectrum Disorder (ASD) (If you live in the USA) – for other countries this varies. Why the difference? The word condition is seen as a better descriptor and less negative. I agree, but as this is a recent change I'm still used to saying ASD.

To the best of my knowledge, at the present moment in time this is the politically correct term to use is……

A person with an Autistic Spectrum Disorder / Condition

What a mouth full!! I’d never actually use this in real life. Imagine if I used this style of speech for everything.

‘Hi, I’m a person with the name of Steve. I’m a person with 30 years of age, I’m a person with masculine gender, I’m a person with Caucasianness…..’

It’s clumsy, but that’s what we’ve got for now. Until they change it again…

A Final one: Retard

NO! I hear you cry. Indeed, this is never an acceptable term. This, however, was the politically correct word we were using 100 years ago. How times change. What will we be saying in another 100 years I wonder?

I’m Confused!

I know, sorry. There simply are so many terms and so many variations on what is seen as acceptable that it’s bound to be confusing. In a professional sense it’s important to follow whatever the official guidance is for you locally, but in an informal setting? Just use common sense. After all I’d much rather you use the wrong words to me than avoid conversation at all. Us people with Autistic Spectrum Conditions have FAR more pressing issues to deal with than the words you use. Your support is vastly more important to me than whether you use the correct terminology.

I hope you have found this blog useful and hasn’t scrambled your brains. Please share this post if you have enjoyed reading it.

I’d love to hear your comments about theterms you like best and those you dislike. There are so many I’ve not been able to fit into this post and it would be great to hear your feedback.

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