Human: Finding myself in the autism spectrum

By Warren Mayocchi

Written after Warren was diagnosed with Asperger Syndrome at age 43, this is a memoir focused on the cause, effects and outcomes of being born different from others. You will find fascinating personal stories placed against technical information to give an understanding of autism that is wider than Warren’s own story. Warren shares the pla

• Language: English
• Publisher: Crusma Pty. Ltd.
• Release date: Sep 22, 2016
• ISBN: 9780994441621

Book preview

Hello

a still gift

incubates a thinking symphony

sweet blackness whispering a dream

(29 December 2003)

No-one really knows me. If they attempt to befriend me, I keep them out. For a moment let me consider remaining open to life’s intruders – you know those people; friends, family, work colleagues. It is stressful, maybe the correct term is anxiety. I never thought I was an anxious person until I read a piece of paper saying my high anxiety can be helped. I thought, What high anxiety?

It is evident in those early mornings where sleep is desired, but fearful thoughts of the coming day will not abate. It is in the mental training required for new people or situations – going over endless variations of how events will proceed. Turning up and being aware that one wrong step will mean complete failure and self-criticism. My heart flopping and pounding as I survive the day. I guess those experiences are anxiety.

Even perceived success does not bring an end to my turmoil. Once a situation is over, there is the constant rumination on my performance. Did I say the right thing? What did you really mean when you said, Interesting? Why can I hear everything so well and your voice so poorly? Was I too competent and overbearing? Was I not competent enough and now going to be excluded or monitored until my performance improves? It goes on. On and on. Exhausted because of the demand this has on me, depressed because I cannot fit into our world.

Some peace is achieved when I am in my internal world; experimenting, researching, playing, drawing, caught up in the brilliance of beautiful music.

I’m at home in the internal space of the person you call Warren. There is no need to wonder why I want to keep you out. Do not enter because this is my sanctuary.

Living has been hard for me in a number of ways, so I learnt to be self-protective. I am afraid of what could be revealed if I let you in on my thoughts. I am not a conventional thinker, and you are likely to judge me because some of my views seem bizarre. I’m also afraid I cannot cope with the incoming flood of you, or you might be accidentally hurt by my actions or words.

There are things I fail to decipher. That girl you said was interested in me, well I thought she was only talking to you and didn’t notice me. My behaviour may appear to be erratic and rude if I release the inner me. I am inconsistent. Why did I try to dance with the girl who has a boyfriend, but I’m unwilling to acknowledge this girl who you think is clearly interested in me?

How can I be so intelligent and understanding, but so naïve and insensitive? Why am I so hard to figure out? There have been many questions in my life, I have been a mystery even to myself.

Do not worry for me, I’m no victim, and I have been doing this all my life. I know I am the only person who can be relied on to be responsible for myself and take action – no one else understands. There are people around me who have come to be familiar with and endure my traits. Well, there is one person. My wife Cyndella. Others have had opportunities to become familiar with my ways, but none bear the mental scars of Cyndella.

As for ongoing friends, Cyndella fills that role as well. There are other people who have entered and exited my domain. All have drifted away. I expect I am a hard person to know, and keeping in contact with distant people is not high on my priority list.

I learnt during my life that to survive, it is better to be invisible, but not anymore. Take a deep breath, for the first time in the history of the world, you have been granted access. Take a tour, but don’t touch my music collection or move my stuff around.

A different brain

In April 2013, as my life was about to end, I was diagnosed with Asperger Syndrome. Now formally known as Autism Spectrum Disorder. For convenience I will use the word autism regularly from now on as an inclusive term to encompass Asperger Syndrome and Autism Spectrum Disorder.

This book started as my attempt to understand what this diagnosis meant for me, and how to make sense of my life with this knowledge. It contains theoretical information as well as how it relates to me. You will find the story of my life and how I survived.

It is important to note that autism is a broad term which can be loosely defined as a set of behaviours arising from a brain difference. Autism is not yet completely explained or understood by science. There are worldwide centers of excellence with scientific investigations in progress to quantify the brain difference and advance various theories.

You can obtain a list of common behaviours by doing a simple search on the internet, reading a book or a scientific paper, watching videos of people on the internet, seeing depictions in movies or TV shows. It is evident in the public forum and you probably know people who are in the autism spectrum even if they have not revealed it to you. They may not know for themselves. They may be succeeding or struggling through life. They may be completely independent, or they may rely on the care of their community and loving families.

I once asked an Asian person if all white people looked the same to him. This was because I’d heard other people say all Asian people look the same and I was interested because I had just met a number of different Asian people who were similar enough to confuse me. At the time my question was prompted by simple curiosity. Since then I have learned it was a rude question, particularly since I posed it to someone I didn’t know well. (Please don’t think I am racist because of this illustration – the person I asked became a friend and was the best man at my wedding.)

It remains an interesting question though. People might ask what autistic people are like and then attempt to identify with the similarities. Do we all act the same? Limited eye contact – yes, poor social skills – yes, rocking – yes, and so on. There is a fundamental flaw in this identification approach. Autistic people may also be defined as being inconsistent, average at this, great at that, challenged elsewhere – with no-one having the same profile. Identification based on similarities becomes problematic when the similarities change from person to person.

So, just as we are all unique with our own set of characteristics, the group of us who are called autistic have differing similar characteristics. Identifying autistic people by similarities results in matching problems. However that is the current challenge for medical professionals because there are currently no biological tests for autism.

Further complicating identification is the fact that the autistic person has developed coping strategies and will be unlikely to display the extent to which they are affected. Certainly there are times in the life of an autistic person where peculiarities are obvious to others. That is probably a tipping point when help becomes more accessible. However, with visible disabilities the person has to deal with being treated differently, probably underestimated, and perhaps abused by individuals or institutions. Coping strategies to mask differences allow a person to hide from negative treatment, but it also means identification is harder, and help is less accessible.

Why is it important to dwell on identification and what autistic people are like? If you are looking at my behaviours and trying to compare me to someone you know, or yourself, then you may be complicating the comparison by using my personality and behavioural profile. It’s something to keep in mind.

My story is unique, so is yours. Autism is a major influencing factor in my story, but the people we are is dominant. Also, reducing autism to a set of behaviours is convenient but incorrect. It is wrong to think of autism as rocking in the corner, finding clothing labels irritating, avoiding eye contact, and so on. Remember, autism is a brain difference which results in a different life experience – that means all the time. The observable bevahiours you might find unusual are simply how we cope with the world.

For example, rocking is a soothing movement. Avoiding clothing labels is an indicator of a sensory system which is overreacting. Looking away from a person is a way of giving more attention to what they are saying. An autistic person is always – every second – dealing with a different hearing, seeing, feeling, smelling, and tasting experience. We are adjusting for our differences with a cognitive system which produces different thoughts and ideas.

When you look at a list of autistic behaviours remember they are simply some of the external signs of what is happening within the person. There is usually a good reason for the behaviour. Behind those visible signs is a person who is likely doing their best to integrate with our social world, using whatever resources they have available to compensate for cognitive and sensory differences.

I can’t imagine life with a brain different from mine – how unlike me would I be? Who are we without our experiences, memories, and life choices? It is obvious I would be someone else had I been born differently, so I cannot wish I was born with a typical brain. There are times when I do wish I knew about my difference sooner. It would have averted misunderstandings and mistakes – it would have made a huge improvement to how my life progressed.

Subtle deviation

I am usually extremely quiet and reserved. It is a coping strategy. The less I say, the fewer chances there are for other people to notice the differences in me. There’s not much to identify me as autistic to the casual or maybe even prolonged inspection, especially when I am being unnaturally normal. You know, attempting to act as people expect a fellow human would behave and speak. If I am not behaving with unnatural normalness, or you know me for long enough, it becomes apparent there is something going on with me. Perhaps you would look at all I can do and explain away the strangeness. Perhaps it would annoy you. Perhaps it would affect how well we interact. There are many possibilities and I do put effort into minimising what is displayed, but it is still there.

For me this is a subtle deviation at best, and major weird at worst. Most people never have to see the major weird as, unfortunately, it is usually imposed only on those whom I love most in the world. Even a subtle deviation can have a major impact. Consider the following scenario:

The situation is my first disclosure of my autism diagnosis. Sitting at the table are my parents and my wife, Cyndella. My wife has been with me from the start of this process, so she knows everything, yet she is nervous. My parents raised me, so they are aware of how I was growing up.

My parents are listening to my summary. My wife is offering clarifications and her viewpoint of significant items. Suddenly, my father stops the conversation and talks with my wife. After some words are exchanged my mother is telling my father, Enough! and my wife has walked out of the room.

The situation is emotional, something is going on here but I missed it. I quickly decided that my father was behaving in a concerned, caring way, that he was interested in easing the nervous agitation evident in my wife. What should I do? Here are two of the most likely options:

Response A

Being confused about what happened, but accepting I may have misread the situation (because I am aware and accepting of autism) I continue with the discussion.

After saying goodbye to my parents I go cuddle my wife and we debrief on what happened.

My father calls after a few days to apologise for the outburst.

Response B

I tell my parents not to worry because Cyndella has been stressed lately, and I continue with the discussion.

After saying goodbye to my parents I go ask my wife why she fought with my father, she explains how he was angry with her.

I trust my impression of her being the aggressor, and we have an argument after which both of us are emotionally damaged and hurt.

My father calls after a few days to apologise for the outburst.

In this situation life worked out according to Response A. Which is a major improvement for my relationship with Cyndella. Now imagine twenty years of misunderstandings in the style of Response B. The only autistic impact in this scenario was my incorrect understanding of the situation.

Remember, my understanding of the situation began with confusion – I decided my father was being sympathetic and my wife reacted angrily. Note my skill in understanding the situation has not changed between responses, but my awareness of autism allows me to question my skill in Response A. This awareness leads to a better outcome than the damage to my relationship with my wife, as well as both of us feeling betrayed and hurt, in Response B.

So, there is a potential for damage with a subtle deviation, but then there is the major weird. I will provide some examples of the embarrassing-weird things I have done while telling my story.

I have been highly aware we’re not at all alike for as long as I can remember. For much of my life I’ve wondered about the difference between us, and I’ve looked for explanations through personal research and professional help. Nothing explained me. Let me rephrase, I did not discover the explanation.

I coped with the differences as best I could in isolation but I made mistakes. Unfortunately, a number of these mistakes were serious and I hurt people around me. Self-forgiveness is not a skill I have obtained during my life. I’m working on it, but meanwhile I judge myself harshly.

Why did I write this?

You can tell something is wrong when you contemplate the plummet from a high rise balcony as more appealing than living. It seems an obvious sign of a problem, yet for me it was normal because I’d been experiencing thoughts like this my entire life.

Until recently, I’ve been unaware of being in the autism spectrum. This means I’ve lived most of my life in ignorance of my differences from other people. I grew up unaware of aspects of life most people take for granted, and this created problems for me. That is why autism is called a developmental disorder, because it affects how you develop as you grow.

Do I now recognise these missing aspects of life? In some cases, yes I have. But how can I tell aspects are missing when I haven’t experienced them? There is never a clear sign. I can attempt to measure the evidence of my difference in the reactions of people around me, but I first have to be suspicious of a difference to start measuring. My suspicions can be raised in my dealings with other people – for example, why am I regularly confused when everyone else around me understands?

After realising something is missing, through observation and reflection there is a certain amount I can learn and for which I can compensate with a personal set of rules of engagement. Even though this allows me to act unnaturally in order to appear natural to you, longer term relationships do leave others with an odd sensation. Something about me is unexpected. Many times I’ve heard people say my reaction was different from how they thought I would behave. Others tell me I confuse them, or they cannot read me at all. This is another source of evidence highlighting my difference – the feedback from others.

If only other people could be trusted.

Question everything has been a personal motto. It was a hard lesson learnt through personal disappointment and shame. Trusting people and taking what people say literally often leaves me appearing foolish, or being taken advantage of, or working from the wrong set of facts.

The consequences of not adhering to my questioning approach to other people can be a hurtful experience. So it is difficult to put my distrust aside when accepting the feedback from them – especially as it often conflicts with my own perception of what has happened. It becomes a matter of trust, and importantly, who to trust. And I have trusted no-one.

Going back to the balcony, I looked down at the ground I was beyond coping, and seemingly without options. Work, home and sleep were all torturous. But as I’m here writing this now, there was a way out. I needed to reduce the intensity of my question everything approach and begin trusting people again. This was something I vowed I’d never do because of events at my eleventh birthday party.

Here is my autism story, it is written by a questioning mind, a mind that apparently works differently from most. Acceptance of my autism diagnosis was hard, I wanted to be as certain as possible. So began the notes that would become this book.

Some people reading this may, like me, be looking for a definitive answer for their own autism story. In the absence of an objective test for autism, the best you can do is gather enough subjective evidence to support a judgement one way or another. If this is you, try not to be too black and white when reading what I have written. You may have personal experiences in conflict with mine or with textbook descriptions. It’s all part of the variability of autism.

When I was asked to read autobiographies to see if they correlated with my experiences, I looked for too much – I was too extreme in my approach and rejected evidence because other life experiences were too different to my own. There is a great book called, Been there. Done That. Try This!, edited by Tony Attwood, Craig R. Evans and Anita Lesko which presents many views held by autistic authors and artists on seventeen common issues. I found in this book pieces I could have personally created and pieces foreign to me. It was good to have a collected set of viewpoints and see some of the varied experiences possible for people in the autism spectrum.

When I was diagnosed with Asperger Syndrome I needed to put together a personal case; doing this helped me understand my life with autism information as a new framework. Re-evaluating experiences, making some sense of confusing memories, and looking for the indicators through my life to verify the diagnosis.

I needed to do this because, for me to alter my life – change career aspirations, trust other’s perceptions over mine – I needed to be absolutely certain of the truth of the diagnosis. So I kept a growing collection of notes about my life and the process I underwent. I was encouraged by a number of people to continue writing and developing my personal notes into something more – something which could help other people.

If you are reading this to better understand someone in your life who is like me – Thank You. If you are reading this out of interest, then on with the show. First I will discuss how I came to understand autism before starting on my life story.

chapter two

What is Autism?

Autism is a broad-spectrum multi-factorial condition which onsets in the first years of life and persists throughout the lifetime. A triad of deficits in the areas of social communication, language development, and repetitive activities/restricted range of interests defines the core symptoms used in the diagnosis of autism (DSM IV, 1994). The affected areas show a broad range of variability in terms of both symptoms and severity; co-morbidity of epilepsy and mental retardation are often observed. Autism spectrum disorders (ASD) is a commonly used term to cover the wide variations of autism. The dramatic rise in the prevalence of ASD in recent years is of major public concern.

A strong genetic component underlying ASD has been firmly established from various lines of studies.

(Kumar, et al., 2011)

To me there is a clear distinction between autism causes, effects, and outcomes which I will go into further. For the moment, it’s important to note the various definitions of autism usually use limited information. There is a focus on one or two of cause, effect and outcome. Usually cause and effects, or effects and outcomes. Even within the two focus areas, definitions will limit the information provided. A good example is the Diagnostic and Statistical Manual of Mental Disorders commonly known as DSM with a version number, like DSM-IV or DSM-5.

By definition the DSM is a manual for diagnosing psychological conditions and is therefore used to recognise autism through autistic behaviours (effects) and life impacts (outcomes). It is less concerned with cause simply because it is a manual for diagnosis. However, there are effects and outcomes not covered by the DSM – for instance a substantial amount of research has concentrated on negative effects and outcomes of autism. However sensory differences, evident in many autistic individuals, has only recently become a regular topic for research (Bogdashina, 2003) and sensory differences have only become a diagnostic characteristic in DSM-5.

To be clear, I do not disagree autistic people are disabled and/or disadvantaged, but this is to various degrees. For some people the negative aspects are overwhelming, and for some, autism is an inconsistent set of characteristics in which there are both strengths and drawbacks. Autism does have several traits which are neutral and can become disabling or enabling dependent on circumstances and environment. The point I’m making is there is more to autism than is usually given in definitions.

Personally, I do not like the phrase triad of impairments which appears in many definitions. The psychological studies by (Wing & Gould, 1979) and (Wing, 1981) produced this famous phrase. This type of study improved our knowledge, particularly in recognising autistic individuals. So the triad of impairments was a great improvement at the time. However, as a definition of autism for today, it is deficient as it focuses on a negative subset of the effects and life outcomes of autism.

Nor do I care for autism labels in common use such as mild, high-functioning, low-functioning, and severe. These terms provide a simple scale which allow other people to classify autistic people based on non-standard criteria and limited access to their life. These labels are dependent on when and where an observer views an autistic person. The time of day, stage of life and personal environment are all factors in how a person will appear. The same person may be classified by others as low-functioning as a child, high-functioning as an adult, mild during the everyday, then severe when overwhelmed.

In many research papers the distinction between high and low functioning is made on the presence of intellectual disability defined as an IQ test result less than 70. There is no need for a special classification based on IQ. However I have seen other scientists refer to the difference between