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?

Diagnosis Dilemmas - Q&A on autism diagnosis

Diagnosis is a topic that pretty much everyone on the spectrum has at some stage been affected by. Perhaps you were diagnosed as a child or as an adult, perhaps you have no formal diagnosis and feel it is something that you don't need or you want a diagnosis but really don't know what to expect from it.

This week I wanted to have a look at the topic of diagnoses in the form of a question and answer session.

Before I get started I just want to note that here in the UK the services offered vary wildly depending on where you live, my answers are based on my experiences alone. I'd love to hear your story, especially if you live in a different area or country. Feel free to add your views to the comments section.

How old were you when you were diagnosed with asperger's?

I've actually been diagnosed officially twice, so I've got two answers to this. The first diagnosis was when I was 16, or to be precise on my 16th Birthday. I was leaving full time school and it was clear to me that there was something going on for me that really needed addressing. I had terrible problems during my teenage years and the wishy-washy explanations I'd been given just didn't make sense to me. Finding myself on the brink of starting my adult life in such a vulnerable position spurred us into getting me a conclusive diagnosis. 12 years later I received a second diagnosis that matched the first. I had hit some difficulties at work and my line manager was refusing to accept that I was on the spectrum. She had dismissed the first diagnosis claiming that autism is a childhood thing (suggesting that I had grown out of it if it was even there to start with) and that I clearly didn't have it (she truly believed that those on the spectrum can't talk). Getting the re-diagnosis not only helped secure some adjustments to the working environment for me but also helped me re-confirm things for myself.

Why did you not get diagnosed as a child?

Diagnosis in childhood becoming far more common these days, but back in the early 80s when I arrived into this world it was fairly rare. In the years since far more research and knowledge is available allowing for much earlier diagnosis. For me the signs were missed and it was all the more autistic traits I displayed as a child were put down to things such as bad parenting / premature birth / bad behaviour / food additives etc, as I got older this moved onto almost random guesses at 'your son might have..... ADHD? / bereavement issues / ADD? etc' but at no point was any diagnosis offered. When an actual diagnosis was brought up it was generally considered that it shouldn't be offered as I might use it as a label to hide behind.

What did the diagnosis involve?

A series of tests are carried out ranging from a full IQ test to manual dexterity and problem solving tasks. There was an extensive series of questions relating to how I feel about various scenarios and a fairly long and invasive questionnaire relating to my behaviours and development as a child. The questions can feel quite intrusive and intimidating so I recommend taking time over the questions and asking someone close to help you out if you find you're struggling with them.

Following this diagnosis more in-depth testing and therapies often get offered. I've had follow up tests to manage the sensory processing aspect of autism, sensory integration therapy and various therapies to address meltdown management and social skills.

The National Autistic Society has a very comprensive guide on how to request and what to expect from an adult diagnosis for those in the UK at this link: http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx

I've not included any links to information about diagnoses in other countries or for children as I don't want to give you bad information as I don't know those areas very well myself - I welcome you to add any information you have that may be of use to others in the comments for others to see.

How did you feel about the diagnosis?

When I first received the diagnosis I was a bit shell-shocked. I remember having a typical teenage strop and telling my parents that it was a really crap 16th birthday present! I was given a list of things that I wouldn't be able to do because of the condition and really nothing positive was presented to me. Once the shock had passed it turned to relief. For a long time I had known there was something different about the way I was experiencing the world but having a reason why meant I could stop blaming myself and start to live my life, and I wanted to prove those who said I would never achieve anything wrong, I had mission!

What benefits has the diagnosis provided you?

There are two main benefits I have found from having an official diagnosis.

The first is a personal one. Having a piece of paper in my hand that conclusively proves that the struggles I've had are real and not just a weakness of character really helps me to overcome the pain of times things are bad. The diagnosis also provides me with a really useful tool to use to seek help, understanding why and how I'm struggling really gives me the key to figuring out what the solutions are.

The second benefit I have found is a purely practical one. By having a diagnosis I am officially classed in the UK as having a disability which automatically provides certain levels protection and support. It also opens up doors to getting specialist services, home support, treatments, advocacy etc, that are only offered to those with a diagnosis.

What disadvantages has the diagnosis given you?

None. I'm not saying this jokingly either, there really haven't been any disadvantages as such. The only negatives I could scrape from the barrel are that the process of actually getting one is frustrating and lengthy. Since getting the diagnosis it's only ever been beneficial for me.

The concern posed to me before my diagnosis was that it could be a label I could use to hide behind. In my experience it seems to actually work in reverse and having the label gives me more power and control over the struggles. To be fair if I was going to hide behind a label then I'm sure I would have found something to hide behind anyway and the effort in fighting for diagnosis would have been too much of an effort!

I've also heard often the concern that having a diagnose might disadvantage you if someone is prejudiced against those on the spectrum. In reality if you encounter small minded people like this then having the diagnosis legally protects you, actually in this situation not having the diagnosis would be the disadvantage. If I ever feel self-conscious or wary about disclosing my diagnosis then it's perfectly OK just to keep quiet and not tell anyone, having a diagnosis doesn't mean that I have to declare myself as an aspie to everyone I meet (although having a blog kinda does that for me!).

I suspect I am on the spectrum, would you suggest I get a diagnosis?

For me having a diagnosis has been a very positive thing but that doesn't mean I will be insisting everybody rushes to their doctors tomorrow for a test. There has been clear advantages for me in getting support as I often struggle but the process of diagnosis is frustrating and intrusive. I'd recommend assessing yourself if you feel a diagnosis is right for your own personal situation. I attend a support group in my local area that attracts many people both with diagnosis, self diagnosed and those just finding about the condition for themselves or someone they know. If you have questions about diagnosis groups like this and online support groups are a great way to chat things through with people who have gone through the process themselves. It's good to get a variety of views on the subject to help you make your own decisions.

I hope you've found this weeks topic interesting. As always I welcome your feedback and views. Please feel free to send me in your comments and questions below.