Category Archives: Autism Spectrum

The Rain

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Today a music video, literally inspired by events from my own life, was released. The band is Lyria: Aline Happ (vocals), Rod Wolf (guitar), Thiago Zig (bass), Thiago Mateu (drums). The album is Immersion, the song is track #4, “The Rain”. It is all due to the band members and their musical talents the song is now a music video. To celebrate this occasion here is “The Rain” by Lyria, and below there are a couple of book extracts and photo which I sent Aline Happ years ago to help in creating the song.

Quotes below taken from the book Human: Finding myself in the autism spectrum.

One of my favourite memories occurred in this early period of my life. I remember walking out into the rain wearing a raincoat. The details that I recall are all sensory:

  • What I could see was limited because of the dense rain pouring around me creating a misty effect.
  • What I could hear was limited because of the constant crash of the rain.
  • What I could feel was the pressure of the rain on my rain clothes, and it felt wonderful.

I remember the glorious isolation. I was in my own world. Inside my raincoat I was protected from the wet and I was having an awesome sensory experience. This is how I recall it – I evoke sensual aspects from the memory, usually starting with the pressure on the raincoat, and then the memory comes.

BoyInTheRain

Looking through my parent’s photograph collection I found a photo of myself in the raincoat from my memory. It probably makes me about three years old when the event I remember happened. Thinking back on this now, I love how I was free to interact with the experience in a way that doesn’t seem possible as an adult. As an adult you are expected to be socially controlled rather than interested in childlike fascinations. My sensory interaction with the world is therefore more hidden and subtle now, a finger sliding along a textured wall, enjoying the caress of a strong wind, rubbing a thumb against the edge of a table. While my senses can and do cause problems, they are also the source of comfort, fascination and joy.

This poem is called boy in the rain.

Alone.
Surrounded by the loud mist,
Of water crashing into earth,
And a coat of comforting weight.
Freedom in isolation,
Here stands the boy in the rain.

He found a photo of the boy in a raincoat,
And remembered,
The fascination of senses.
And wondered,
Why not now? Why so controlled?
When the world becomes too painful,
Surviving means hiding.

More and more he connected,
With the memory,
The between time,
A series of hurts inflicted,
By him. To him.
Hopes and dreams became self-torture.

She walked into the rain,
And loved.
She suffered because of his ignorance,
But believed.
He discovered love, he regained hope,
Together they dreamed,
She saved his life.

For those looking for another Lyria song to enjoy, have a look at a favourite of mine “Let Me Be Me”.

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Experiences of humans diagnosed in the autism spectrum as adults

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“There is nothing new under the sun” is a funny phrase. Everything was new at least once, so it cannot be a true statement. But I understand the intent and human experience does form relatable pathways, particularly when there are shared elements, like being in the autism spectrum. A research article was bought to my attention recently – ‘The Not Guilty Verdict’: Psychological reactions to a diagnosis of Asperger syndrome in adulthood1.

The paper discusses shared experiences in the transition from ‘being an outsider’ to finding identity for adults diagnosed in the autism spectrum. It describes the process as a problematic search for an explanation which reaches a turning point when understanding is gained, resulting in a mixture of emotions (usually requiring professional and personal support). “Indeed one of the strong messages from this research is that diagnosis, for the individual with Asperger syndrome at least, should be considered not as a single event but as a process that may span months, if not years.”1 There are parallels in this process with the search for meaning most people undertake during their life, however the details do show the differences and difficulties introduced by being autistic.

Before examining the research in further detail, there is another important observation in the article to highlight. It demonstrates the value of diagnosis, even for adults, as undiagnosed adults can be impacted by “a variety of mental health problems such as anxiety, depression and self-harm”.1 Also, in contrast with the adult experiences, the research does indicate an improvement for the lives of children with an “early diagnosis is associated with positive psychological outcomes for these individuals. The feelings of ‘difference’ from others, or indeed ‘inferiority’, is likely only to grow and be reinforced over time.”1

There are six common discussion areas detailed in the research paper – it is well worth reading from the results section onward. Quotes from research participants are included along with accessible commentary. Other people’s experiences has been constantly interesting to me, and reading about others was one of the recommended first steps for myself in the days subsequent to my own diagnosis. It was recommended to me as another way of testing the validity of diagnosis – probably as I am beyond trusting anyone, particularly in their judgements of me. So, here are the six areas from the research article with passages from my story2 to add further elaboration.

“Negative life experiences: The impact of negative life experiences on individuals before they were diagnosed with Asperger syndrome.”

Not Guilty Verdict Extracts1 Warren’s Story2

Participants frequently experienced negative life events prior to receiving a diagnosis of Asperger syndrome, often starting in their childhood and teenage years. One of the main experiences participants highlighted was of not feeling accepted and feeling they did not fit in with their peer group.

Participants reported a number of coping mechanisms they utilized to deal with their experiences. Often, these involved becoming more withdrawn and avoidant of social contact with their peers.

As a forty-four year old adult I do not recall any time in my life when I have thought well of myself. I have always known there is something different about me.

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.

“Experiences of services (pre-diagnosis): The individual’s experiences of health services (good and bad) prior to receiving a diagnosis of Asperger syndrome.”

Not Guilty Verdict Extracts1 Warren’s Story2

All participants described having experienced mental health services of some kind prior to gaining a diagnosis […] failed interventions and reinforced feelings of not fitting in and being different.

“I knew there was something wrong with me from an early age”

“I had read loads of books and stuff . . . to try and find out why I was the way I was but . . . I never really found a satisfactory answer.”

“I am always dead paranoid that someone is going to say, ‘Oh we have made a mistake and you haven’t got Asperger syndrome . . . you are just depressed and psychotic [laughs]. So you can’t have access to any of the services. Go away.'”

Being “not me” was the communication style I had developed. I did not know how to behave in the presence of the people I wanted to help me – I ended up feeling disingenuous and hidden despite wanting to be open and as honest as possible.

Though I knew I needed help, I had not been able to ask for it in the right way. So, after many attempts, in 2011 I gave up looking with the conclusion that it was pointless. I concluded I was broken in a way not to be helped by medical professionals.

“Beliefs about symptoms of Asperger syndrome: The framework in which an individual’s difficulties were explained prior to receiving a diagnosis of Asperger syndrome.”

Not Guilty Verdict Extracts1 Warren’s Story2

Following on from their experiences of not ‘fitting in’ with their peer group, eight out of the 10 participants stated that this continued throughout their lives and that they came to believe they were ‘different to other people’. This feeling of ‘difference’ was often not specific and was highlighted either through their own personal awareness or other people’s insight into their differences.

Although many individuals stated that they held this belief, they were often unable to offer any specific explanation as to how they were different.

[D]espite their efforts to mask their difficulties, most soon realized that this was unsuccessful and could potentially make symptoms worse due to increases in stress levels.

“I knew I had something going wrong but I didn’t know what. I had known even when I was still at school that I had something wrong with me.”

“I didn’t know what was wrong with me all of my life, why I felt different.”

“I think that people only need to know me for a short time to realize that there is something wrong.”

Unlike the various hypotheses that attempted to explain me over the years – isolated child, force of nature, fatigue of work, typical man, and introvert – the autism spectrum has a comprehensive explanation.

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?

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.

“Identity formation: Experiences of integrating Asperger syndrome and its symptoms into an individual’s sense of identity.”

Not Guilty Verdict Extracts1 Warren’s Story2

All of the participants in this study had gone through their childhood and teenage years without having any understanding of their difficulties…In the absence of having any other framework within which to explain their difficulties, many individuals appeared to believe what other people were saying and internalized these ideas…[and then] felt that their lack of understanding of their difficulties had contributed to their mental health difficulties.

By the time 2013 is reached I came to believe that not only am I a ‘failure of a person’, but I have a toxic effect on the people close to me. A great deal happened in between the younger and older me, but I understood early on there was something wrong with me.

I was not able to express those feelings to anyone. There are things I knew to be core truths, but they were difficult to translate into words. For me, I knew I was different. It seemed something was wrong with me, but there was nothing I could name. I could see in people’s reactions and how they treated me there were things I should have understood. How could I talk about it or even explain it when I didn’t understand? I didn’t understand what was happening, or that it was exceptional.

“Effects of diagnosis on beliefs: Changes in an individual’s beliefs and views of themselves, following a diagnosis of Asperger syndrome.”

Not Guilty Verdict Extracts1 Warren’s Story2

[Diagnosis may be helpful in these ways:]

  • provide a framework for them to explain their difficulties both within themselves and to wider society
  • offered an explanation for their previous experiences
  • exonerated them from being blamed for their previous difficulties
  • allowed individuals to access services and support that they had previously not received
  • meeting other people with Asperger syndrome, making friends and feeling as though they ‘fitted in’ with a group of people

However, despite this positive reframing of some symptoms, all individuals were still aware of their difficulties.

“Slightly depressed . . . not because I had Asperger syndrome but because I felt . . . like somebody released from prison after 20 years, or in my case 40 years and being told, ‘We are sorry we put you in there, we got the wrong [person]’ and then realizing that I won’t get another 40 years of life to make up for it.”

I did not imagine the diagnosis would improve my current situation, nor would it change anything about how my life had been.

For a while I thought there would be a reversal of this verdict. Perhaps a mistake was made, or maybe it was a joke, another prank on me. Neither of these retractions, or any others, transpired.

And there were other people in the world like me.

What an absolutely fantastical idea. More people like me with similar life experiences. Not so alone anymore. There were books about us. So many books, and articles, and blogs, and videos, and forums.

“Effect of societal views of Asperger syndrome. The impact of others’ beliefs about Asperger syndrome on the individual.”

Not Guilty Verdict Extracts1 Warren’s Story2

[Typical reactions:]

  • been aware of their differences for a long period and therefore were not surprised when they heard of the diagnosis
  • families felt relieved about the diagnosis as it absolved them of any blame for their relative’s difficulties

[R]egardless of the nature of the reaction by friends and family, all participants had realized that there was a lack of understanding of what Asperger syndrome was and how it affected the individual.

Family members who had been alienated by me now made sense of their experiences with me. For children there are interventions that will make a difference during their life. Many people question the value of an autism spectrum diagnosis for adults. Contrary to the doubt in those questions, the value of understanding extends well beyond me. It positively affected many people around me. Diagnosis was just the beginning of understanding though.

Though I have mentioned the reason for adult autism spectrum diagnosis previously, this has been a good opportunity to delve further and elaborate on the subject. Here are a few statements from the paper about adult diagnosis:

[It is important to recieve] a diagnosis in order to provide an explanation of behaviour, discuss previous negative experiences (including bullying and ‘not fitting in’) and gain access to support. […] Of particular note is the significant feeling of alienation and ‘difference’ from others experienced by the participants in this study … often without an apparent explanation. […] [E]arly identification and support for individuals with Asperger syndrome must be the ongoing goal of services yet, in cases of late diagnosis, there is a clear need for post-diagnostic support, informed by an understanding that a lifetime of negative self-appraisals is unlikely to be undone in a single assessment appointment.1
  1. Punshon C, Skirrow P, Murphy G (2009) The ‘not guilty’ verdict. Psychological reactions to a diagnosis of Asperger syndrome in adulthood. Autism 13(3): 265–83
  2. Mayocchi, W. (2015). Human: Finding myself in the autism spectrum. Brisbane: Crusma Pty. Ltd.
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Human book launch

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WinnieAndWarren

My book was launched on 30 April 2016. The people who attended heard me give a talk on “What does it mean to be human?”. Then the book was formally launched by Dr Winnie Lau, she described described six aspects a person will observe as they read the book:

  1. Knowledge and scientific information on the Autism Spectrum.
  2. Journey of an adult within the Autism Spectrum, pre-, during, and post-diagnosis.
  3. A peek into a human soul.
  4. A life of paradoxes.
  5. An honest reflection on humanity.
  6. A love story.

Winnie’s use of six points referenced an idea from the book: the “Cube of Abilities”. It is used in the book to describe autism, and is reproduced below.

Now, about the cube. A cube is a six sided, square faced object. Having voiced previously my dislike of the “triad of impairments” phrase, I will offer an alternative – the “cube of ability”. The alternative defines six ability categories, which can then be mapped on each face of the cube:

  • Imagination:
    • can be highly creative and original,
    • routine oriented,
    • literal interpretation of communication,
    • difficulties in taking on other perspectives.
  • Relationships:
    • loyal,
    • unique ways of showing emotion not understood by others,
    • desires friendship but has difficulty sustaining them.
  • Communication:
    • truthful and tactless,
    • delayed language,
    • may fail to understand the full message in person-to-person talk,
    • accurate language,
    • little desire in conducting meaningless talk.
  • Physical:
    • hypo or hyper sensitive to sensory input,
    • clumsy,
    • stomach/bowel problems,
    • self-awareness and calming assisted by repetitive movements,
    • epilepsy,
    • increased congenital minor physical anomalies.
  • Talents:
    • deep interests,
    • intense focus,
    • recognising patterns,
    • systemising the world.
  • Unique thinking:
    • detail oriented,
    • uneven intelligence profile,
    • high risk for intellectual disability,
    • higher fluid intelligence,
    • great long term, poor short term memory.

That list is already unwieldy and it is in no way exhaustive! There could be many abilities listed under each category, I have listed a few to illustrate the idea. The Rubik’s Cube was a great puzzle from the eighties so good it is still available in toy shops today. It is a mechanical device dividing each face of a cube into nine coloured squares and allows those small coloured areas to move around. A mixed up Rubik’s Cube will have many colours displayed together on one cube face. The challenge of the puzzle is to return it to full colour faces – I loved the puzzle when I was in the last years of primary school. To better understand autism, imagine the “cube of ability” with the abilities of the same type lined up on six sides. Now, mix them up so it is like an unsolved Rubik’s cube!

A cube is a three dimensional object. So, if it is mixed up a certain way, you could rotate the “cube of ability” a certain way and you would mostly see autistic strengths. Turn it another way and autistic weaknesses are in the majority.

This is how it is for me. In public life it is probably easy for you to look at me and see stronger abilities within a total package including quirks and an introverted style. That is because I am putting in a significant amount of energy to keep certain aspects of the metaphorical cube facing toward you. I am sure this is something to which everyone can relate. Just as you dress up to go out, you ensure the best you is on display in public. What is not the same for me, as for everyone else, is the aftermath of being in public.

Live with me and you will see the impact of the energy expenditure on me and what I need to be able to recover. This is despite my intentions to hide the impact even from the people with whom I live. If you stay with me, you will probably see other weaker abilities revealed as well. Guests have been unintentionally offended by my ways simply by staying in my house for a couple of days. Relaxing from the vigilance required outside the house has often resulted in misunderstandings or unexplained situations.**

** Quote taken from the book Human: Finding myself in the autism spectrum.

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What does it mean to be human?

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What does it mean to be human? It is one of those impossible questions people have contemplated for years with no clear answer. It is a question I have considered in my life. Why? People around me appeared to be having a collective human experience from which I was strangely separate. While what you see in me might make you think of me as a well-integrated human, living almost killed me.

Due to my various abilities I am a functional human most of the time – but there are times when the functional façade collapses. I do think everyone adjusts their approach to the circumstances – for example, by acting professionally when attending work. However, for me, adjusting to be functional is difficult to reconcile with the effort it requires, whether that is at work, at home with close family, or just navigating daily life.

There is a great deal of advice which tells you to “be yourself” for success and happiness. It implies people should be liked when they are their authentic selves. I do not think these philosophies apply to me, or anyone else for that matter. In fact, I believe the philosophy is regularly interpreted in an unhealthy way, allowing people to place the onus for improvement on everyone else. The philosophy implies: “My base self is the ideal expression of me, I have no need to improve because I am perfect as I am. The fault is with you if you do not accept me – you need to change.” How is the “be yourself” philosophy workable if it depends on change in other people? Besides I would never accept surrendering the option of improvement to everyone else.

It is simply a fact of life that I have to be unnatural and inauthentic to function in the world and succeed. If I wanted a girlfriend, an education, a job, then putting effort into behaving in a typical manner has been required. I do not think of this as bad, and I have never intended to be deceitful – I just want to be involved with the world around me, but it is a lot of work. Perhaps it is unfair, but staying in my comfort zone would not have allowed me to be independent.**

There are those who do say my approach is dishonest, unethical, deceptive, just wrong. Being functional in this way is called “passing” in the autistic world and it does have negative consequences – I put myself in the position where I am acting so unnaturally that I feel I am not human, my mental health is negatively affected, life has to be carefully structured to cope, the energy required to be functional means I am constantly at risk of burnout, and my family is punished because I am always recovering.

It is hard to imagine what life would be like if I did not push myself to be functional. Perhaps it would be closer to what I call “Deep Dive Mode”?

When I was five years old I remember my parents retrieving me from the shower cubicle because they thought I had fallen asleep. However I was completely engaged with the sensation of the water – enjoying the experience of water droplets massaging my skin and the isolation from outside noise inside the shower. I was not asleep, I was just not responding to them because of my intense engagement with the water. Deep dive mode is a wondrous place to be, but it is not compatible with functioning in our world. It only requires a low energy investment. Probably because it requires low energy, I can devote extreme energy and attention to what I am doing. Especially if I am pursuing an interest. A great deal can be achieved in this mode because I am directing energy into my interest rather than engaging with others or survival.

My sense of exterior events, people and even my own body will be muted or non-existent in deep-dive mode. It is pleasant to be in this mode, however it does require effort for me to remain engaged with the exterior world. In fact eating, relationships, sleeping, responsibilities, and so on, all become extremely annoying. I can become fixated on something, like an activity, a song, a sensation, or a thought. Sometimes it will be enjoyable to repeat a simple act – rocking in a chair – other times I will be immersed in the pursuit of an interest.

Yes, deep dive mode is my sanctuary.**

It is a dilemma – what do you do when “being yourself” is not functional?

books-small

For me, the title of this book – Human – is a reminder and aspiration. I reminds me not feel inhuman because I am different…and being a functional human is not enough, there is more to the human experience than survival. I aspire to “be more”, Human is a challenge for all of us. Rather than aspiring to be functional, how do we make quality of life a higher priority in our own lives and for those around us?

** Quotes taken from the book Human: Finding myself in the autism spectrum.

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Diagnosed, for science!

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For the third time I went through an autism diagnosis process today, all in the interests of science. They used an approach called the Autism Diagnostic Observation Schedule (ADOS), so this was the third unique diagnosis method I have experienced. After that, I spent time talking with a psychiatrist, and then did many tests. It is for a research study conducted by the Autism CRC. Walking in I had been going through, and experienced, the usual “meet new people” issues. Complicating the meeting was the fact that they were focused on me. Would I behave appropriately? What is appropriate behaviour when my behaviour is being studied? Could I relax sufficiently for them to properly evaluate me? A problem with this situation is that no interaction with another person feels natural. Everything is a conscious and energy draining decision…

Do I respond? What is the message I should transmit? Can I do that with a gesture, or do I have to translate it into words? Is my response natural, am I relying on a learned script, or am I wrongly influencing the outcome by logical analysis of expectations?

When an attempt is made to study my natural behaviour, how do I know what is natural so that I can display it? Given that as a starting point, let us move onto physics. In physics, the observer effect describes how the act of measurement changes the quantity being measured. Being aware of the observer effect, and being unwilling to bias the research result one way or another puts me in an awkward position. How real are my actions when I am acutely aware of being observed. Each interaction with another person becomes an over-considered response. Then there are other actions which I usually suppress with other people – should I let them free or stay controlled? And there is consideration of both of those thoughts in the context of whether I am succumbing to the observer effect. It is impossible to think through this situation and arrive at a reasonable answer. So it is up to the researchers to be a step ahead of my thoughts, both in conducting experiments and in constructing evaluations for clinical use. I expect experience is essential in being able to pick apart unintentional deceits from natural responses in a research subject or client.

It becomes the reverse of that in which I am experienced. I attempt to free my natural behaviours, and suppress my over-thought responses. At times I amused myself by recognising what the other person was discretely evaluating, and then was even more bemused by recognising that I had become another observer in this infinite knot of interaction and observation. In retrospect, even though my goals were reversed, this messy overwrought process was actually somewhat representative of my typical interactions. Perhaps I paradoxically behaved more naturally because I am, at the least, unpracticed in being natural?

It has been an extremely draining day, and this piece of writing is me beginning to come down from the experience. Recovery may take several days. I know it is irrational to become so anxious and experience discomfort when meeting new people and participating in new activities. Knowing does not stop it from occurring, but I do prefer to be involved. Though I was not told any results, it was verbally confirmed I have a “clear” autism spectrum diagnosis. I will be provided with the results of the tests in time. That is much better than other research to which I have contributed where I felt like a lab rat – I feel like a member of the investigation team by having my data shared with me.

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Sticks and Stones

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“Sticks and stones may break my bones, but names will never hurt me.”

That was a lie that I was told as a child. I have literally experienced sticks and stones, as well as name calling. The worst physical violence done to me as a child was probably being knocked unconscious after being hit in the head by a large stick. I certainly could have been permanently hurt by that incident, but was not. On the other hand the verbal bullying did do permanent damage. “Just ignore it” is harmful advice for a bullied child. Consider the research:

Show your nobility, your human strength – halt bully behaviour. Sticks and stones break bones and names will hurt forever.

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Why do adults seek an autism spectrum diagnosis?

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swan

Being in the autism spectrum has probably gained a public image of only (or at least primarily) being a childhood experience. Early diagnosis, early education and early intervention has certainly been where most of the research and support has been focused. However, being autistic, aspie, on the spectrum – however you want to phrase it – is a lifelong experience, and requires lifelong support for many people.

Turning eighteen or gaining sufficient skills to act in a functional way does not mean that a person is no longer autistic. The challenges experienced do not disappear, they may change and there may be new ones in different life phases, but they are ever present. In fact for an adult who has lived in ignorance of their state-of-being, life has probably been a confusing journey in which mistakes have been compounded with guilt, and depression has come from not understanding why they do not integrate with the mainstream. Living this way is harmful for mental health, and living in ignorance is not the way to be the best version of you.

An analogy that I use hesitantly because I do not want to trivialise or be divisive: Imagine how the Ugly Duckling felt. After experiencing a brutal early life and then being ready to die, that “ugly duck” discovered that he was in fact a swan. With self-understanding life choices can be better managed and the damage caused by misunderstandings with the mainstream can be minimised.

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the skin between you and me

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my calm skin,
appears to be;
probably ok.
but i hurt.

i wonder what act
shows the pain?
nothing true, so:
my false smile.

you cannot see
beneath skin.
here i am,
invisible me.

my polite smile,
tells you we;
communicate well.
you misunderstand.

i struggle inside,
why not speak?
i save us,
at my expense.

our natures differ;
pretend or be judged.
here i am,
invisible me.

my abilities,
demonstrate a;
basic competence.
i dream of more,

yet i function.
so what else?
too tired –
i cannot say.

let me hide,
this world hurts.
here i am,
invisible me.

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