Experiences of humans diagnosed in the autism spectrum as adults

“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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