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.

10 Things You Shouldn’t Say to Non Autistic Person

There are many things that I do and say that can range from amusing to exasperating to those around me. That’s the joy of having a brain that’s hard wired slightly differently to that of the average person. In my post ‘10 things you shouldn’t say to an aspie’ I took a light hearted look at some of the things that have been said to me that have been less than helpful, but I also recognise that sometimes the things I say aren’t helpful in return. It’s great to recognise that the way I understand other’s communication is strained, but it’s also important for me to recognise that the way I communicate back is also potentially different to yours. Communication works both ways after all. Here is a look at the top 10 things I sometimes say that hasn’t had the response or affect I’d expected.

So anyway let me start by say ‘Hi, How are you?’

1: Answering honestly ‘How are you?’

‘Not so good’ I reply, ‘I didn’t sleep well last night as it was hot. My bedroom doesn’t cool down very well so I was up at 4am. Otherwise I’m not too bad but I’ve had a few concerns on my mind lately about the increase in water rates and whether I'm on the best phone tariff. At the moment I’ve been trying to figure out whether to visit a friend this weekend as they live a long way away but at the same time I’d like to see them. I am however really enjoying writing this blog about life with autism.’

-          puzzled look back

‘Oh sorry, fine thanks and how are you?’

You see to me the question ‘How are you?’ requires an answer. In true aspie style it is so easy for me to automatically bombard the poor recipient with exhaustive details about ‘how I am.’

This isn’t the askers’ intention. It is simply a greeting that requires no more than a simple ‘fine thanks, and how are you’ type response. Any more results in being given a very strange and scared look back from the person who asked!

2: How old are you?

So how old are you?

            You NEVER ask a woman her age!

                        Why?

                                    Why just women?

In settings where I’m surrounded by fellow aspies the question of age doesn’t appear to have such a stigma as it does out in the wider community. It is a simple factual statement. In reality as an adult, knowing someone else’s age has never been that important. I’ve always tended to either enjoy someone’s company or not (regardless or age or any other demographic). It’s when the conversation starts taking a bewildering dance around age that I have the tendency to just say ‘How old are you?’

            ‘I’m so much older than you!’

            ‘You look so young’

            ‘How old do you think I look?’

These questions will all likely result in me bluntly telling you how old you look or asking your age (you’ve asked mine in a roundabout way after all!) – if you don’t want to know then don’t ask.

I’ve been advised that telling everyone that they’re 21 is the best approach (Although it mystifies me why anyone would want to be 21 – I hated that age, 31 is so much better!)

3: Who are you voting for?

So people fought and died to give me a right to vote and live in a democratic country but I can’t talk about politics?

I can understand the reason that politics talk can lead to disagreements but I will and do openly talk about politics when an election is looming.

Filtering information from a random selection of leaflets on who to vote for is bewildering. I’d much rather balance my opinions by having open chats with those people around me who’s opinions I respect.

4: Do you have a faith?

This is one I both understand but also find frustrating. Whatever your faith may (or may not) be is a deeply personal thing that quite clearly can and does cause great conflict. Two people who hold opposing views but both have deep convictions justifying their respective stance can clearly clash on this issue so the reason for having discretion when discussing faith is clear.

The frustration comes for me when deciding where and when is an appropriate time. Faith has played a big part in my life. It has been a fluid journey with times of holding a Christian faith close to heart and more recently settling for more agnostic views. I have a genuine interest in faith and religions but exploring this has always felt restricted due to lack of open communication. I have no answers here, so lets quickly move on before arguments erupt or I’m smited by the almighty…..

5: Lets talk about the birds and the bees…

There are no birds and bees involved so at least there aren’t going to be any seagull sized bee hybrids, but if there were it’s certainly be much easier to talk about than the subject in question.

The unwritten rules on how, when and where sex can be discussed is so perplexing that it can be a huge minefield. Saying the wrong thing at the wrong time can not only lead to huge embarrassment but has the potential for much worse. A single statement that could be light banter in one setting could lead to formal action in another. Knowing the boundaries can be challenging enough for anyone. One thing is certain; no one seems to know how to talk about this. It’ll cover this more in a future post, but for now I’ll stick with the giant bee hybrids, they scare me less!

6: You don’t understand

Chances are you don’t, but then again at least you’re trying to relate? Saying ‘I know how you feel’ is often said and tends to illicit a blunt but factual statement back from me, ‘no, you don’t understand’

I’m seeing it as a whole and there is no way you can understand everything from my perspective, but by saying this I’m missing the point. You can understand and relate to certain emotions, situations or experiences I have (fully understanding the intricate details isn’t really relevant).

It’s probably best I reserve my judgement on your understanding and keep my mouth shut. After all, you may just understand far better than I give you credit for…

7: I don’t understand you

As above, but chances are I don’t understand either. Again I tend to look at the intricacies of things rather than just trying to relate. When faced with a situation I will quickly judge that I don’t understand you and say so. This gives one clear message – I’m aloof, am above your problems and un-empathetic. This is far from the truth and avoiding saying that I don’t understand you is wise.

Perhaps you’ve just split up with your girlfriend and are upset. I would feel unable to relate as I haven’t dated this particular girl, gone through what you’ve gone through, been on your journey – but I have split up with girls before and experienced the grieving process that follows. If I step back from the detail then I may find I do understand far better than I give myself credit for…

8: You’re wrong

There are certain subjects that I know a lot about. We all have areas like that. Our interests, hobbies, studies all give us an expertise somewhere. Even personal matters like your family or even your long term health issues are probably areas you personally can call yourself an expert in. I’ve studied fungi extensively (yes, I’m aware that this is strange) and unless you’re a seasoned mycologist then I will probably dismiss your knowledge on this subject as inferior. The difficulty is that no one wants to be told they’re wrong. If someone approaches me and informs me that all fungi are poisonous, instead of pompously dismissing them for making such an uneducated remark it helps to step back. Does their lack of knowledge affect me at all? No! Perhaps this is a good opportunity to have a chat about a topic that interests me. In turn they are guaranteed to have something of interest to tell me about a topic I know little about. Not saying ‘you’re wrong’ can open up very interesting new conversations.

9: Being direct about pretty much anything

An autistic tendency that doesn’t seem to blend well with the British societies' politeness is being blunt and direct. If there is a problem or difficulty I’d rather just say it than meander aimlessly around the subject.

‘You upset me’ Is confrontational, ‘My washing machine is broken so I’m stressed and don’t know how to get it repaired’ is pessimistic. Instead we have to weave around what we’re saying.

‘Hello, splendid day wouldn’t you agree! I wonder if you could advise me, my washing machine has broken. Have you got any recommendations for good repair centres? Isn’t it jolly good that we live in such a blessed position to not have to wash out clothes in a dirty river!’ or some such gibberish.

10: Talking about myself

Talking about myself comes naturally, I know a lot about myself. I can easily go into a never ending monologue that will put you in a coma given half a chance. I have to remind myself frequently that you really don’t need or want to know every last detail about my evening’s plans.

I was once set a challenge, try having a ‘you’ day. The challenge was simple; to not talk about myself for a whole day, even direct questions about what I’ve been doing should be turned around and directed back to the person asking.

‘How was your lunch?’

Instead of replying with the details of my lunch I could say, ‘Great thanks, what did you have today?’ Following this up with questions about their favourite foods or places to eat.

Sounds easy? It was actually quite challenging but very rewarding and it was a great way to connect more with those around me.

I hope this post has been of interest and shown how the challenge of communication is a two way street – but also a very rewarding one. I would be very interested in hearing your views on this topic. Please feel free to add your comments and share this post if you found it interesting.

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 professionals. Unfortunately 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.

Autistic Meltdowns - A Timeline to disaster!

TRIGGER WARNING - This post describes in detail an autistic meltdown - please do not read further if this may act as a trigger

The autistic meltdown is possibly the most feared, misunderstood and daunting aspects of ASCs. This will be the first of number of posts exploring this topic as it has been by far the biggest topic I've been asked to write about, but it is probably one of the hardest. Why? Well it is such a huge and complex topic, is fuelled by so many elements and labelled with terms that are often misleading to a neurotypical audience.

So I guess the best place to start is to give a basic explanation my understanding on what is actually occurring in the body during a meltdown cycle and the different elements at work. 

Living in a neurotypical world us aspies have a battle on our hands every day just to get by. With sensory and communication difficulties even the simplest tasks can become problematic and require levels of 'translation' in our heads. The constant mental gymnastics can sometimes get just a little too much and every so often the brain has a quick break. It is like a computer crashing. You've got too many windows open and things slow down, the more you click the worse it gets until it freezes then reboots. This is like what our brains do. It comes back on line, de-frags itself then away you go. I will try my best to describe the effects of average meltdown for me.

Timeline: 3 DAYS TILL MELTDOWN

The first signs I am heading for a meltdown usually start to occur a long way in advance. At the stage we are starting our journey into the meltdown together I have already noticed the warning signs and we are 3 days away from the meltdown. I don't yet know exactly how long I've got but I know it's imminent so I need to start preparing. I've learned the importance of spotting the early warning signs as a surprise meltdown can be catastrophic. My brain is beginning to get tired and 'glitch'. This is a sign I need to reduce it's load and fast. A few things have happened in the week leading to this point, a busy week at work, disturbed sleep, argument with a friend, nothing too daunting to have caused alarm but I've now started to get irritable about things vastly out of proportion. A random and un important issue is playing on my mind and I'm losing my temper about it. My ability to act neurotypical has dropped and a few people have commented on this. I'm struggling to follow my daily routines and I've noticed that I'm not eating properly, keeping up with housework, keeping personal hygiene in check etc (did i brush my teeth this morning? I've not done the ironing, when am I going to do the ironing? Oh no, I forgot to have dinner!). This quickly escalates and simply trying to process what needs to be done vs what is irrelevant becomes a major task. I start to cancel things from my diary and prepare as I know what is coming next....

Timeline: 1 HOURS TILL MELTDOWN

Clearing the diary and allowing a few days to let my brain rest should have returned me to normal by now, but not this time. A few tricky commitments have remained. A friend has been unhappy about me cancelling plans, noise from a neighbour is triggering sensory overload, someone cut me up on the drive to work. My ability to respond correctly has now vanished and my brain is approaching it's capacity. I feel a wave of emotion and confusion vastly out of proportion to the situation. As I have started to loose the ability to filter and process information whatever this 'final straw' has been is probably now the focus for the meltdown. Although the meltdown has technically started I have enough time to get myself somewhere safe and this is my priority as I know I've reached the point of no-return.

Timeline: 10 MINUTES TILL MELTDOWN

My brain is beginning to go offline. My speech has become repetitive and obsessive. Due to the fast breakdown of my cognitive function, all the emotion, fear, frustration etc is being projected on this single trigger. The supermarket having run out of my favourite brand of cereal, my friend turning up late or the TV show I was about to watch being cancelled isn't the real problem, and I know this - but my ability to express anything at this stage is fast decaying so I'm stuck in a loop of venting at some random issue. (This is why it can be mistaken so easily for a temper tantrum).

Timeline: MELTDOWN HAPPENING - CODE RED CODE RED!!!!!

My brain has now gone offline. This is the most dangerous stage of the meltdown, but only lasts a few minutes. During the brain freeze stage I simply cannot process the information around me. It is scary and confusing. I simply cannot make sense of anything going on. Sound is painful, my vision is blurry and more importantly for you - At this stage I don't know who I am, who you are or where I am! If am still talking, it will have reduced to a loud repetition of words. (this is not conscious, it's like a record being stuck)

My body is trying to be helpful and released an enormous surge of adrenaline into my bloodstream. This is to protect me while I'm not able to cognitively function. As in the classic anxiety attack this is to facilitate the fight or flight response and becomes a huge factor in the immediate aftermath.

Timeline: 10 MINUTES INTO MELTDOWN

After shutting itself down, the brain has now started to come back on-line. But it doesn't happen all at once. Things go in one of three directions from this point on....

Route 1: I have retained enough cognitive function to put in place a helpful solution to the adrenaline overload. Either by regulating breathing, walking around the block, using a punch bag etc or by using sedatives to allow me to sleep through the re-boot.

Route 2: An internalised response (What I call a shutdown). The extreme reaction has turned inwards and I am shaking or rocking like in a seizure, I'm unresponsive and vacant, very hot and clammy and my breathing has become wheezy and stilted. I've either collapsed right where I was stood or I've positioned myself in an inexplicable place (under the bed, in a corner etc) probably as a subconscious means of protecting myself. This is the most frequent type of meltdown I experience. It WILL resolve itself fast if you let it run it's course. I will not die, suffocate, pass out etc, please try not to panic while this is happening, in reality it looks far worse than it is.

Route 3: An externalised response. The extreme reaction has turned outwards. This is the loudest and most daunting response. The adrenaline is being released in pure violent force, aimed directly at whatever the stimulus that caused the overload to occur was. The danger isn't for you (Unless you do something unhelpful like grab me or shout in my face - but even someone not experiencing meltdown may react badly to this!) The real danger is to me as one of the effects I'm experiencing is the almost complete loss of my sense of pain. This can clearly result in some nasty injuries if I'm somewhere unsafe. The only real factor that turns a meltdown loud and violent is the source of overload still being present. Remove this and it will quickly run it's course. I will be doing everything I can to get away from the source of overload. It is important that you help me do this or get out of my way. Unless you can directly help, you will be a hindrance. Do not expect logical communication from me even if you are helping me. Remember that autism seriously affects my ability to communicate and at this moment in time I have very little cognitive ability. It the source is too much noise, get me somewhere quiet. Too much light? Get me somewhere dark. Simple. If it's you, then go away! This may sound blunt, but my inability to communicate 'please leave me alone for a few minutes to calm myself' has resulted in very blunt and out of proportion requests from me for you to back off. By the time I've reached meltdown I don't have the luxury of being able to communicate, you do! Please use it wisely, leave your hang-ups at the door and give me the space I desperately need at this point in order to recover safely.

Timeline: 1 HOUR SINCE MELTDOWN

The meltdown has subsided and the adrenaline has left my system but now I face a new hurdle. The extreme affects of the meltdown have caused my blood sugar levels to drop dramatically. I need sugar fast. I carry glucose syrup for this reason. I am also experiencing a wave of extreme exhaustion. I need to sleep for a while. I may have simply fallen asleep wherever I am. Please leave me be unless I'm somewhere unsafe, I will move when I'm ready. In the following hours I may go through the cycle again a number of times, like an earthquake and it's aftershocks.

Timeline: 1 WEEK SINCE MELTDOWN

By this stage, a week later, things have stabilised. Now is the time to repair any damage that has been caused. I am likely to have been off work, missed appointments and social commitments. Perhaps I have people to make amends with or people to thank for their support. After a big meltdown like this I always try to do this personal evaluation. Unfortunately the medical input regarding meltdowns is at best lacking and at times dangerously incompetent so personal insight is the only real means of improving things for the next time it happens, and having a meltdown is the only time I can gain that insight.

Thanks for reading and I hope this can be of help in understanding this subject. This has been a very difficult post to write and one that can be expanded upon much further. Please feel free to comment on your own experiences with meltdowns.

10 things you shouldn’t say to an Aspie

Most people on the autism spectrum have probably had their fair share of comments and questions directed at them that make their blood boil just a little. Sometimes these are callous and hurtful remarks, but mostly it is from someone genuinely interested and trying to understand. When faced with an often misunderstood condition like autism, it is natural that people will have misconceptions, questions and an interest, but unfortunately this can come across in unintentially hurtful or unhelpful remarks.

I’ve compiled a humorous look at the top ten list of comments I’ve personally received. Please note that I have High Functioning Autism / Asperger’s Syndrome so my responses reflect this.

1. You look so normal. Are you sure you’re autistic?

Ok, so how does autism look?!? This type of statement is so common that I’ve lost count of how often I’ve heard it. I believe this statement is often intended as a compliment, but that’s rarely how it comes across. In reality it can offend on so many levels. After all what exactly is ‘normal’? So am I sure I’m autistic? Yes! Do I need to prove it to you? No! Unfortunately this was once raised by a manager at work who insisted on second opinion and sent me for re-diagnoses, and the results…‘See, I told you it was!’. The reason it’s not always evident is a combination of peoples misconceptions of how a person with autism should behave and my own strategies at blending in with the neurotypical world.

Now would it help you if I wore a label….

2. Stop hiding behind the label of autism.

Well you wanted me to wear the label! The difficulty of autism is that it’s invisible. Sometimes it’s really in everyone’s benefit if I can explain why I might need to approach something in a different way or may be acting in a slightly unexpected way. Good examples are the police alert card and times where I’m feeling overwhelmed and need to leave a situation.

So if you don’t want me to have the label afterall, perhaps you can wear one so I know you might be asking me silly questions…

3. Get yourself out more, that’ll make you feel better.

Ah yes I see you’re wearing the label, I’ll answer this before you open your mouth again!

Often a generic response to anyone feeling a bit down is to tell them to get out more and cheer up. That’s not what’s happening here. I might feel down or anxious at times, just like anyone else, but getting out more will probably make it worse. One of the more distressing aspects of autism for me is sensory difficulties. When I’m feeling run down for what ever reason my ability to process the world around me drops significantly. This can quickly cause a sensory overload where it feels as though the brain has crashed. Sounds and light become painful and communication almost impossible. I’d rather this doesn’t happen and I’m sure you wouldn’t like it either. I think I’ll stay in and listen to some soothing music thanks.

4. You look uncomfortable, stop doing that with your hands, it looks strange!

Well I told you going out wouldn’t help! Yes I know I look uncomfortable and I’m acting strangely. The more you point this out the more self conscious I’ll become and the more ‘autistic’ I’m likely to act. Sorry, that’s how it is! I’ve very aware of how this is. If it makes you uncomfortable then that’s your issue to deal with. If I’m feeling uncomfortable or starting to struggle please be respectful and accepting and things are more than likely going to resolve themselves without any dramas. Making an issue of it is likely to result in the dreaded meltdown…

5. Aren’t you too old to have temper tantrums!

Yes I am, that’s why I don’t have them! Meltdowns are a different beast altogether. In essence a meltdown is your brains reaction to becoming overloaded and just like a computer crashing, it reboots itself. While this is happening (for me usually 10 – 30mins) I cannot make any logical sense of the world around me. This can be deeply terrifying and disorientating.

From the outside it can appear to happen with no warning at all and be in direct relation to not getting your own way. In reality it is often simply that a small misunderstanding or upset has tipped the balance due to any number of factors you are unaware of. The biggest differentiator between tantrums and meltdowns is that tantrums are conscious and controlled, meltdowns aren’t. A tantrum is likely to quickly fade when the person gets their way or when not observed, whereas a meltdown will continue until it’s run it’s course, be repetitive and have after-effects of fatigue and confusion that can last days.

The terminology used for this experience varies from person to person which can lead to confusion. The way this manifests itself also varies greatly. Some rarely experience this, for others it’s a crippling daily struggle.

This is a huge topic that I’ll cover in more detail in a later blog.

6. You shouldn’t rely so much on your parents to help you, you’re in your 30s!

Don’t get me started on this one. Whether you like it or not in some areas I need more assistance than the average person. deal with it! I’m lucky enough to live a fairly independent and self sufficient lifestyle, but if I’ve had a bad turn things can grind to a halt. If this means that I require extra support then it shouldn’t be a concern of yours, everyone needs help some times. The level of support required and ability to live independently varies greatly from one person to the next. Perhaps instead of criticizing someone for asking for support and labelling them as lazy, you could politely ask if there is anything you could do to make things just a little bit easier.

7. How many ceiling tiles are there?

It is true that there are autistic savants out there with some incredible abilities, but not all of us can do that, maths and mental arithmetic certainly isn’t one of my strong points. One of the features common to aspies is strong and focussed interests so certain facts can roll off the tongue at ease. Ask me about mushrooms or US geography and I’ll quite happily talk at you for hours, but ceiling tiles – no. By the way, there are 136.5 tiles in this room.

8. My (friend’s kid, neighbour, cousin….. ) is autistic, you’re not like them.

No I’m not. I’m like me. Autism is a broad condition that doesn’t define who a person is. Every individual on the spectrum is just that – an individual. How and to what severity the condition presents itself in an individual varies greatly, as does that persons abilities and strategies in coping and overcoming what life throws at them.

9. let      me     speak     slowly     so      you      understand      me

OK,     let    me     reply      slowly      as       you       don’t       seem         very           bright

10. It must be hard not having any empathy with anyone.

Yes and no. Yes it is hard, but not because of lack of empathy, it’s because of this common misconception that we don’t have empathy! Personally and certainly with many of my friends on the spectrum there is no lack of empathy at all. What is lacking is the ability to instantly read the non verbal clues and signs to read what someone is thinking or feeling. This can come across as a lack of empathy, which for me often leads to great remorse at not having realised how someone felt. Recently at work I was asked if a colleague sat in my office was OK as she seemed very stressed. I had been sat next to her for 6 hours and simply not noticed anything as she had not vocalised her feelings. When I realised, I felt hugely upset that I had not been supportive or helped a colleague who I hold in high regard and been ignorant of her stress  This isn’t a sign of lack of empathy, it’s a sign of inability to read body language.

Thank you for taking the time to read this list. I’ll discuss further many of the topics touched on here in later blogs. The list could easily continue much further but If you have any comments and responses you’d like to add to the list I’d really enjoy reading them. Please feel free to post in the comments.