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, 8 May 2015

Do We All Have Autism?

'Everybody is on the spectrum somewhere'

I'm sure this statement is familiar to most of us. It's a statement that many of us with, and indeed without an actual diagnosis may have been told or perhaps said, but is it true?

I personally would answer that no we are not ALL on the spectrum. I believe there is a clear boundary between having and not having an ASD, and don't find the view that you can be 'a bit' autistic accurate or helpful, and this is why...

Lets start by looking at what autism actually is. Autism is a neurological condition affecting how the brains neurotransmitters communicate and deal with information. It is a life long condition that cannot be cured. The way it affects an individual can vary but the symptoms can be categorised into groupings, this is where the term 'spectrum' comes in.

There is a common misconception that the word spectrum means there is sliding scale from 'non-autistic / neurotypical' to 'severely disabled'. This is not the case, it's more accurately a grouping of conditions (eg. Classic Autism, Aspergers Syndrome, RETT Syndome, PDD NOS) each condition sharing patterns of how the underlying neurological difference has caused an effect, all under the umbrella of 'Autism Spectrum' The National Autistic Society explains this as,

            'It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways.'

One difficulty I have noticed in explaining autism to someone is the fact it's a hidden disability. How ever much you stare at a person you won't be able to see their neurotransmitters, so how can you tell if they are different from yours? You can't, so it's the outward signs you'll see. This is where it can get tricky.

With specialist equipment there are undeniable differences clearly seen between those on the spectrum and those not. Brain scans show distinctly different patterns between neurotypical and autistic individuals. Another example is eye movement research which again clearly shows distinct differences in how people on and off the spectrum process information. So this seems clear cut, why would there be any doubt?

If you saw me having Sensory Overload, Shutdown, Meltdown, in a non verbal state or stimming, you'd instantly say there was something going on here that most people don't seem to experience, but I don't tend to display those traits in public if I can help it! Instead you get to see effects you can relate more to.

The social awkwardness, anxiety, confusion and general day to day difficulties are actually experienced by everyone at some point. If I said I feel so overloaded I just need to go to sleep I think most people could relate to that. Again if I explain that if I'm stressed I get tongue tied you could probably relate. How about shopping... the supermarket can be overwhelming because it's so busy, yep I guess you've felt that too at times. This gives the impression that these traits SHOW that someone has autism, so if everyone can relate then everyone has a degree of autism?

Lets myth-bust this theory with the statement that social awkwardness is a sign of autism. Just think back about your own experiences, how many times have you said something you regretted afterwards? How many cringe worthy jokes did you tell at the office party? How many times did you try to talk to your crush and make a fool of yourself? You thought of a few didn't you? I guess we all have a stock of encounters that make us squirm a bit when we remember them, but does this make us all autistic? No, it makes us all human! These social awkward moments happen to all of us, autistic or not, where the difference is comes back to the pesky neurotransmitters. In an autistic brain they are so busy processing the world in their own eccentric way that I often make social faux-pas without even realising, on a daily basis. Imagine those embarrassing moments you recalled earlier - now that is what 'mild' autism feels like when socialising EVERYDAY. Even a quiet and uneventful evening out can result in a bad meltdown for me (which is literally where part of my brain stops functioning for a short while, similar to a seizure), if this is something everybody experiences on a regular basis they certainly keep quiet about it! So you still think you have mild autism?

So we've established that some traits of autism can be related to by all. If I were to take the same approach here are some of the conditions I must therefore have...

I have hypos when my blood sugar drops which means I must have mild diabetes? Some days I have mood swings which means I must have both mild bipolar and menopause? I have a headache right now which means I must have mild brain tumour? Every day I get tired and go to bed which means I clearly have mild ME? Doesn't work does it? Perhaps you thought this was a bit insensitive and insulting to those with these conditions?

Yes it was insensitive, and that's how I feel about this statement towards autism. To say that EVERYONE is autistic in some way creates a number of problems for me.

By removing the distinction; removes the need for support for those on the spectrum by saying  that they don't really have a condition requiring support or therapy. It belittles the struggles faced by all those affected, however hidden it may be to you. It also makes support conditional on the effects being clear and obvious. I can tell you that when I'm having a hard time the last thing I want is to have to justify my diagnosis to someone with no medical knowledge who has never seen me at my worst!

It also creates a barrier to those not yet diagnosed. There is enough stigma with autism and related mental health concerns as it is, so please let's not create another one by dismissing someone's genuine struggles by saying that we all go through it.

On the flip side however I do still see it as important to recognise that regardless of diagnosis, many of the struggles I face as an aspie can be related to and even shared by those not on the spectrum. Although a strongly feel that there is a distinct divide separating those on and off the spectrum, this is simply a realisation that I the condition is a real thing and not a scary evil thing that should be used to create a gap between 'us' and 'them'. It is good to have the distinction when dealing with medical interventions and support; but with friends and family? Often I will share an experience I have had that I think of as being an 'autistic' trait only to find a friend not on the spectrum also can relate. This is great to bring us closer and our shared experiences and often different approaches to overcome obstacles unites.

This to me embodies neurodiversity - the celebration that we are all wonderful and valuable in our uniqueness - each and everyone of us regardless of functional labels.

For me it is important to ring-fence and understand my diagnosis as a medical and neurological thing that I (as a person) can take control of, I find this helpful and beneficial in my own journey at coming to terms with the diagnosis. Others take a very different view, and this is totally fine. What is important is that we find our own way to understand what the condition means to us.

In this post I've expressed strong views on why I don't think we ALL have autism, but they are just that, my opinions, based on my journey and experiences. Many have very different views and very different reasons why they hold them true. There is no hard fast correct answer here and I have presented you with my feelings, but how about you? Let me know your thoughts, whether you agree or disagree, I'd be very interested in your opinion, do YOU think we ALL have autism?

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