‘I have been called ‘weird’, ‘aloof’ and ‘not quite right’’

Claire Burke

Claire Burke

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Although I was not ‘officially’ diagnosed with Asperger’s Syndrome until I was at the age of 35 – myself and my family always knew there was something ‘different’ about me.    

From an early age I had limited social skills, had repetitive and stilted interests and my sheer honesty and plain talking often earned me the label of a rude child.   

I never understood social interaction and the exclusivity of living in ‘my own world’ is something I value even more as an adult. 

Of course autistic children, will grow into autistic adults – and this is when life can get difficult for an adult on the spectrum. I have lost count of how many times I have been asked;“Oh, when did you take that?!”  or “You don’t come across like Rainman”  or “You don’t look autistic!”

For many, the stereotypical notion of an adult with autism is the classic depiction of Raymond – an autistic savant, portrayed by Dustin Hoffman in the Oscar winning film Rainman. 

However, in terms of adults on the spectrum, perhaps a more accurate picture can be gleaned through scenes displaying adherence to routine, the need for structure in one’s life and sensory problems – which can range from anything from clothing being irritating to bright lights and sounds becoming just too overwhelming.  

For an autistic adult like myself, routine is a huge part of my life – in order to get on with life on a day to day basis, there will always be a strong inherent desire to live my life exactly to my routine and structure – if not, well, this is when things can go downhill.  

For example, if I have planned my day a certain way – i.e. to set structures and timescales, then I will rigidly stick by that – there is no margin for error!   If something happens that interrupts the routine, then the best way I can put it is ‘that all hell is going to break loose’.  

For an individual such as myself, as I lead such a structured life, my life can descend into chaos if timescales are not adhered to. 

To give an example of how one may understand this, I would say for most people in life who are given an appointment time (doctor) – and that appointment time maybe is delayed, as perhaps the surgery is running late – that is fine for the majority of people.  They can deal with that.  However, to the autistic adult, this creates unnecessary stress and anxiety – as we have planned for our appointment to be at a specific time; the disruption has ultimately created disorder to our routine and structure, the rest of the day now cannot correspond with the planned routine and the knock on effect of the appointment being late has now contributed to a complete melt down. 

To me, disrupting my planned routine is terminal – there is no justification for it – therefore communication can shut down and become closed – this is why it is so important to explain what is happening to an autistic adult – whilst I hold a law degree, I cannot comprehend why a doctor would be 10 minutes late for an appointment when I had been given a specific time to be there – if I am not late – then why should he be – there is no room for rational thinking – the appointment time was given, and I was on time – I expect the same courtesy.  There can be no in-between.  

Whilst having a meltdown, many in society may only associate such behavioural ‘oddities’ with children on the spectrum, however, this is not the case. 

As an adult, it may seem that I should have more control over my outbursts – after all, to most people I am seen as a highly articulate educated woman,  nonetheless, when the stress and anxiety become too much I feel myself actually shutting down, communicating less and ultimately wanting my own space.   

It is difficult for others to comprehend why a few minutes of lateness can spiral into confusion and chaos for the autistic adult, however in order for the day to go ahead as planned then the appointment needed to go ahead at the correct time in order for the day to run smoothly. 

Of course structure is not just exclusive to appointments – again, routine is important even in socialising – something that most of us take for granted.  

As an autistic adult, I have set times and criteria for when I feel the need to engage with others.  

Indeed, it is seen as normal, that as a human being, we gravitate towards each other – whether that be for companionship,  or just the sheer enjoyment of being in the company of others; I myself do not feel this overbearing need to be part of a group or socialise or spend innumerable hours in the company of others.To me it achieves nothing.  It is time almost certainly idly wasted, and again has quite literally drained me.    

Of course I have been called weird, aloof, not quite right, and people tend to view me as devoid of emotion.  However, this is not the case, whilst people with autism do have feelings and emotion; we tend not to put on such a ‘dramatic’ display of our feelings. Again, I see this as a coping mechanism – not someone who cannot emotionally relate to what others are going through.   Nonetheless, if it does not affect my life on a personal level, then I could be seen as being somewhat clinical and detached.   

I do not see there being anything wrong with this, however I do somewhat understand why others cannot relate to me – whilst the neurotypical seems to thrive on company and the whole social aspect of life – my enjoyment stems from being on my own. 

I often wonder how I can explain to my GP that I am feeling a bit autistic today – I have not worked it out yet!

Others may find the world of autism strange and impermeable. Indeed I know they do; nonetheless different people find enjoyment from different things.  

I have no problem that people find me ‘weird’.  To many I am.  

To myself, I am another autistic adult just trying to make sense of life.