Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in
Adults

Laura Foran Lewis

PII: S0883-9417(16)30006-1
DOI: doi: 10.1016/j.apnu.2016.03.009
Reference: YAPNU 50839

To appear in: Archives of Psychiatric Nursing

Received date: 4 September 2015

Revised date: 18 March 2016
Accepted date: 27 March 2016

Please cite this article as: Lewis, L.F., Exploring the Experience of Self-Diagnosis
of Autism Spectrum Disorder in Adults, Archives of Psychiatric Nursing (2016), doi:
10.1016/j.apnu.2016.03.009

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Original Qualitative Research Report

Title:
Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults

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Laura Foran Lewis
University of Vermont, USA

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Corresponding Author:
Laura Foran Lewis
College of Nursing and Health Sciences

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University of Vermont
105 Rowell Building
106 Carrigan Drive

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Burlington, VT 05405-0068, USA
Email: lforanlewis@gmail.com
Phone: (860) 550-3504
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Funding Acknowledgement:
This research received no specific grant from any funding agency in the public,
commercial, or not-for-profit sectors.
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Other Acknowledgements:
The researcher would like to thank the participants of this study for inspiring this study
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and for their willingness to share their stories.

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Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults

Abstract

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One in 68 Americans has Autism Spectrum Disorder (ASD), and diagnosis is often

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delayed into adulthood in individuals without comorbid intellectual disability. Many

undiagnosed adults resort to self-diagnosis. The purpose of this descriptive

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phenomenology was to explore the experience of realizing a self-diagnosis of ASD

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among 37 individuals who were not formally diagnosed. Results revealed five themes:

feeling ―othered,‖ managing self doubt, sense of belonging, understanding myself, and
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questioning the need for formal diagnosis. Healthcare professionals must have an

understanding of self-diagnosis to help individuals transition to formal diagnosis and to

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adequately educate, support, and screen this population for comorbidities.

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Keywords:
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Adults; Autism Spectrum Disorder; Mental Health; Qualitative Methods; Self-Diagnosis

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Autism Spectrum Disorder (ASD) is a type of neurodevelopmental disorder that is

characterized by ―persistent deficits in social communication and social interaction‖ and

―restricted, repetitive patterns of behavior, interests, or activities‖ (American Psychiatric

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Association, 2013, p. 50). One in 68 children in the United States has ASD, and reports

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indicate that it is as prevalent in adults as in children (Brugha et al., 2011; Centers for

Disease Control and Prevention [CDC], 2014). For those who have ASD without

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intellectual disability, approximately half of this population, delayed diagnosis is

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common and individuals may even reach adulthood before they are diagnosed (CDC,

2014; Lehnhardt et al., 2013; Spencer et al., 2011). Though these adults are often able to
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function independently, they face significant challenges that impact quality of life as well

as comorbidities such as depression, anxiety, and risk of suicide (Cassidy et al., 2014;
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Sterling et al., 2007). These symptoms are likely amplified when the individual lacks
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self-awareness and support, as is the case for the estimated 50-60% of the population

with high functioning ASD who remain undiagnosed (Baron-Cohen et al., 2009; Myhill
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& Jekel, 2008).

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Many adults who are unable to obtain a formal diagnosis or are currently seeking

a formal diagnosis of ASD have adapted by relying on self-diagnosis. For example, in a

qualitative study of 77 individuals diagnosed with ASD as adults, participants were self-

diagnosed for an average of 3.25 years before they were formally diagnosed (Author,

2016). Many of these individuals used the Internet to explore and confirm their self-

diagnosis while awaiting formal diagnosis. Internet self-diagnosis has been problematic

in many populations leading to misinformation, misdiagnosis, self-treatment, unrealistic

expectations for treatment, promoting mistrust of professionals, exacerbating anxiety, and

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contributing to ―cyberchondria‖ (Chen & Tumer, 2010; Fergus & Dolan, 2014; Holyoake

& Searle, 2015).

Self-diagnosis and adult-diagnosis have no doubt been influenced by the presence

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of online support groups and forums, a rise in television characters and media

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representatives from the ASD population, and popular biographical books about adult-

diagnosis of ASD such as those by John Elder Robison, David Finch, and Daniel

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Tammet. Yet, few qualitative studies explore the experience of being diagnosed with

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ASD in adulthood. In a qualitative study of 18 young adults who were formally

diagnosed with ASD at various times during the lifespan, Portway and Johnson (2010)
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reported ―harms‖ experienced by individuals who were diagnosed as older-adolescents or

young adults, including ―underachievement‖ in school or employment, ―negative feelings

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of low self esteem, high anxiety, depression and suicidal tendencies‖ (p. 81-82). They
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concluded, ―…as Asperger‘s syndrome is more widely acknowledged and understood it

becomes apparent that there are risks associated with not diagnosing in early childhood‖
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(p. 81).
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Similarly, in an interpretive phenomenological analysis of ten individuals who

were diagnosed with ASD as adults, Powell and Acker (2016) reported that individuals in

a subclinical threshold group who displayed ―significant autistic traits but did not reach

full diagnosis‖ (p. 73) experienced themes of ―Diagnostic disappointment: ‗I hoped for

clarity … I was disappointed not to get a clear diagnosis‖ (p. 76) and ―Lack of clarity: ‗I

didn‘t get the clarify I needed … I was hoping for answers but didn‘t get them‖ (p. 77).

In these studies, researchers acknowledged that there was a gap in understanding

of those who are ―undiagnosed and inaccessible‖ (Portway & Johnson, 2010). Though
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self-diagnosis is not formally confirmed by its very definition, examination of the

experiences of those who are self-diagnosed allows healthcare professionals insight into a

previously unexplored population. Examining this group can potentially provide

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information on the risks and benefits of not diagnosing ―borderline‖ cases of ASD in

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childhood, on barriers to formal diagnosis in those not diagnosed, and on the self-

diagnosis experience of mental health disorders as a whole.

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The purpose of this study was to explore the unique experience of reaching a self-

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diagnosis of ASD. This study was borne out of participant feedback from a previous

phenomenological study on the experience of being diagnosed with ASD as an adult

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(Author, 2016). For the original study, inclusion criteria required that participants self-

reported that they had received a formal evaluation and were diagnosed with ASD, or at
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least had seen a professional who informally evaluated the individual and concluded they
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likely had ASD. Upon starting data collection, the researcher was contacted by four

individuals, reporting that they did not meet the criteria, but that they were self-diagnosed
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and wanted to participate. One individual responded on a public forum in which he

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explained:

In my case my general practitioner put a referral in to the regional mental health

authority for an autism assessment, but the response back was that they do not

have any specialist in the field who works with adults. So I have not seen a

mental health professional about it, because there isn‘t one in my region.

He further stated, ―At this stage I cannot support this study, precisely because it is

inherently flawed in that it misses a significant portion of the population.‖

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This is a population that has been largely ignored, begging to be researched and

understood by professionals. This study aims to empower and understand the

experiences of those who feel confident that they have ASD but have been unable or

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unwilling to seek formal diagnosis. All healthcare professionals who encounter

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individuals who are self-diagnosed, particularly those working in mental health, must

understand the experiences that have brought these individuals to self-diagnosis to

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adequately educate and support adults with ASD and to understand barriers to formal

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diagnosis in adulthood.

Method
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This study aimed to answer the research question: What is the experience of being

self-diagnosed with ASD? Using Husserl‘s (1954) descriptive phenomenological

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philosophy, truth is viewed from the eye of the beholder. In translating this philosophy to
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method, participants are selected because they have lived the phenomenon of interest.

They are asked to describe their experiences, and the researcher‘s goal is to present an
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unbiased, un-interpreted view of participants‘ perceived truth. The researcher brackets

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all preconceived ideas before and during the research process, called epoche or

phenomenological reduction, to prevent these ideas from influencing data. This element

of phenomenology was particularly important to this study, as the idea of ―self-diagnosis‖

is often seen as illegitimate in the medical, nursing, and research communities,

particularly in mental health. The researcher kept a journal throughout this study to

ensure that the experience was described without personal influence.

After gaining approval from a University Institutional Review Board, a

convenience purposive sample was recruited via posts on public forums and online
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support groups for individuals with ASD with permission from site moderators. Data

were collected from April to August 2015 via an SSL encrypted open-ended survey

website. Inclusion criteria required that individuals be over age 18 and be self-diagnosed

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with ASD but not formally diagnosed.

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Individuals were asked to respond to the following statement: ―Please describe

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your experience of coming to a self-diagnosis of Autism Spectrum Disorder. Please share

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any thoughts, feelings, and specific experiences.‖ Since mistrust in the healthcare system

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was an anticipated barrier to formal diagnosis, the researcher opted not to collect any

personal identifying information or contact information to encourage participation of

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individuals who might not have otherwise responded. Therefore it was not possible to

contact participants to ask follow-up or clarifying questions. Data were collected until
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saturation of new information was reached.

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Data were analyzed using Colaizzi‘s (1978) seven-step method. First, the author

closely read all ―protocols,‖ or interview transcripts (Step 1). Next, significant statements
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were extracted from protocols (Step 2), and meanings were formulated from each
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significant statement (Step 3). Formulated meanings were sorted into theme clusters

(Step 4). Table 1 depicts an example of significant statements and their formulated

meanings sorted into theme clusters.

INSERT TABLE 1 HERE

Theme clusters were integrated into an exhaustive description of the phenomenon of

interest (Step 5). This exhaustive description was then reduced into a fundamental

structure of the phenomenon, which is as unequivocal an account as possible (Step 6). At

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this time, a Masters-prepared nurse reviewed the author‘s audit trail and findings. No

changes were recommended based on this review.

Finally, this fundamental structure was reviewed with participants and edited

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based on their feedback (Step 7). Using another SSL encrypted survey tool, participants

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were recruited once again via online forums and were asked to read a description of

themes and to provide feedback. An unexpectedly high rate of 21 individuals responded.

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Based on this feedback, no changes were made to the themes themselves, and only minor

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additive changes were made to the descriptions of themes. Thus, member-checking,

audit trails, and ―thick description,‖ in which the researcher provides rich quotes and
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detailed description of data, were used to ensure trustworthiness (Geertz, 1973; Lincoln

& Guba, 1985).

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Results
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Sample

Nineteen individuals participated in the original open-ended survey, and 21

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participants provided open-ended feedback during the member-checking phase of this

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study with three individuals participating in both phases. In total, 37 individuals

participated in this study. Demographic information is provided in Table 2. Participants

were mostly White and male. On average, participants had been self-diagnosed for 3.8

years at the time they participated in this study, ranging from 1 month to 22 years.

Individuals from 11 countries were represented. Participants described five themes that

captured their self-diagnosis experience.

INSERT TABLE 2 HERE

Theme 1: Feeling “Othered”

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Participants reported that they ―always felt different,‖ describing feeling

―othered‖ and ―isolated.‖ One participant said:

Ever since I was young, I have felt broken and that I wasn‘t trying hard enough to

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be like other people. It felt like there was some secret language that I was trying

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to view in a closed off room through a muddy window.

Individuals described dealing with symptoms of ASD since childhood, listed in

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Table 3. As one participant wrote, ―I am struggling with understanding how to do life.

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What should be obvious and appears to be for everyone else baffles me and I feel

inadequate, stupid, and very scared.‖

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INSERT TABLE 3 HERE

Theme 2: Managing Self Doubt

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When participants initially learned about ASD, often from family members,
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friends, the Internet, or television programs, most felt an immediate ―fit‖ and then began

to doubt themselves. Several discussed asking parents or romantic partners to review

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criteria and provide their input, and others took to online forums. Most took online self-
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tests for ASD. For some, researching ASD became an obsession in an attempt to confirm

or refute a self-diagnosis: ―Learning about ASD consumed me, every moment I was

thinking/reading about autism and I alienated myself from everyone.‖

For most participants, the more they learned about ASD, the more confident they

became in their self-diagnosis. As one said, ―It came to the point where I was no longer

capable of the extreme level of denial necessary to NOT conclude that I am autistic, and I

was forced to give in to the self-diagnosis.‖ Another described disclosing her suspicions

to her mother:
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She initially told me that I was making a big deal about nothing, that I was

perfectly normal and to stop worrying, and I really started to doubt myself. …

After a while I got out the diagnostic criteria again and went through it with her,

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without saying what it was for, both of us listing ways in which I met each point.

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At the end she told me that this summed me up almost to a T, and asked me what

it was. ―Aspergers.‖ ―…Oh.‖

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Some participants described that this denial was rooted in not wanting to accept

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the diagnosis: ―I tried to find any excuse as to how I could just be close but the more I

read, the more I couldn‘t convince myself I was Neurotypical.‖ Another explained:
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Denial also is a significant issue because the more you read about ASD, the

symptoms, the consequences, the statistics, the problems people with diagnosed
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ASD face, the less you actually want to belong to that group due to the sheer
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amount and gravity of the issues that you‘ll have to deal with consciously once

you‘re pretty sure you have it.

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Though participants described ―writing off‖ symptoms for most of their lives, they felt
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that the more they learned about ASD, the less they could doubt their own belief that they

had ASD.

Theme 3: Sense of Belonging

Many participants described feeling like ―others were describing my life‖ when

reading about ASD. Participants said, ―I felt like I could have written half the stuff I was

reading,‖ and ―It was both an incredible relief and very unsettling to hear them more-or-

less tell me my life story in their own words, from their own experiences.‖
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Once they identified themselves as having ASD, participants felt a sense of

belonging, particularly in online communities of individuals with ASD. One participant

said, ―This was the first time I felt deeply understood, and had my own perspectives

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communicated back to me,‖ and another, ―It is comforting to know there are other people

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like me.‖ However, for some, belonging was a double-edged sword: ―I have since found

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a sense of belonging in the online ASD community – although, on the flip side, I do feel a

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bigger sense of separation from other people as a result.‖

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Theme 4: Understanding Myself

For some individuals, realizing a diagnosis was ―a relief‖ and ―freeing.‖

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Participants felt that the diagnosis gave them a new level of self-awareness and

understanding. One said, ―It felt like I finally had a basis for understanding me.‖
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Another shared:
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[The self-diagnosis] finally, for the first time in my life, makes me make sense.

Nothing in my life has ever made sense, and the difficulties I have with things that
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are ―no big deal‖ to others have made me feel utterly worthless. Now that I know
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the explanation behind it all, I don‘t feel so cruddy. It‘s a weight off my

shoulders.

Several participants explained that the self-diagnosis helped them to identify their

strengths:

I have some weaknesses that others don‘t but I also have strengths that others

don‘t … Everyone has things they can‘t do but want to and they make peace with

it. You wouldn‘t look at a fork and think about not being able to eat soup.
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With knowledge of ASD, participants felt better equipped to deal with ASD symptoms.

Participants said: ―For the first time and going forward, I really know who I am and what

I‘m dealing with so I can make more informed and useful choices, and how to deal with

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some of the problems I‘ve experienced,‖ and, ―I am slowly peeling away the shell I have

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built up in order to protect myself from being hurt by others and it gets easier to deal with

these issues.‖

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Theme 5: Questioning the Need for Formal Diagnosis

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Some individuals reported that they were satisfied with a self-diagnosis and did

not feel the need to pursue a formal diagnosis. Others still wished for a formal diagnosis
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to give them ―peace of mind‖ or to help them with work, school, or financial

accommodations. One participant said:

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One major reason for pursuing a formal diagnosis some time in the future is so
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people I choose to tell believe me. I am not obviously autistic so I fear being told

by others that I am making it up and/or I just like making out I am a ―special

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snowflake.‖
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Many individuals reported facing barriers that made formal diagnosis impossible or at

least very unlikely. The following list summarizes participants‘ reported barriers to

formal diagnosis:

 Adult specialists were not available

 Cultural norms did not recognize ―adult autism‖

 Inability to afford a formal evaluation

 Extreme anxiety during appointments with professionals prevented them from

adequately describing their symptoms

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 Concern that they would be evaluated and would be told they do not have ASD,

particularly among females who felt their symptoms were not ―classic‖ for ASD

and among those who recognized that their symptoms were different than those

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seen in children

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 Fear that they their symptoms would not be believed if reported to professionals

 Poor experiences with past professionals who ―blamed‖ or ―misdiagnosed‖ them

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 Strong misperceptions about ASD that delayed their own self-diagnosis

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 Parents did not want them to be diagnosed in childhood, and they were just now

pursuing a diagnosis
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 Concern about stigmas related to autism or "mental illness"


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Mistrust of "institutions" in general, and concerns about having a formal record of

a diagnosis
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 They did not perceive that there would be any benefits to being diagnosed
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Most individuals felt that a diagnosis of any kind, self or formal, gave them words

to explain the previously unexplainable, saying, ―I found the words to describe many
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thoughts I could never explain.‖ Many wished they had known about ASD earlier in life:

My biggest regret is that I didn‘t know sooner, as this understanding has shown

me how life choices I‘ve made, which might have been right for others, have been

very harmful to me simply because I‘m autistic and have different needs and

abilities than other people. I had felt pushed to live up to the ―normal‖ standard,

and while I have achieved it quite successfully, I am miserable maintaining it. I

wish I had known sooner.

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Discussion

Findings provide insight into the experiences of individuals who are self-

diagnosed with ASD. Comparisons between findings from this study and studies on

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individuals who were formally diagnosed with ASD are shown in Table 4. In general,

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the self-diagnosis experience is very similar to the formal diagnosis experience (Author,

2016; Punshon, Skirrow, & Murphy, 2009). However, self-diagnosed individuals

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reported feeling self-doubt as opposed to the validation experienced by those formally

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diagnosed. Also, though services for adults with ASD are limited in general, those who

are self-diagnosed lacked access to community resources or professional support of any

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kind despite managing complicated symptoms such as those described in Table 3.

INSERT TABLE 4 HERE

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Philip Wylie (2014), an individual with ASD diagnosed as an adult, recognizes

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self-identification as an important precursor to formal diagnosis in his 9-stage model of

―very late diagnosis of ASD.‖ Results from the present study fit within the earlier stages
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of Wylie‘s model. Even without experiencing the stages involved in formal diagnosis
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and disclosure, participants in this study described elements of a later stage in the model:

finding self-acceptance and understanding of their strengths. This implies that self-

awareness may be more influential than actual diagnosis on reaching this milestone and

warrants further investigation.

The risk versus benefit of acknowledging self-diagnosis as truth must be

examined. Portway and Johnson (2010) found that there were significant short- and long-

term risks of not diagnosing young adults with ―borderline‖ cases of ASD that arguably

outweighed the benefits of not ―labeling‖ these individuals, since these individuals
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already recognized themselves as being different from others. Findings from the present

study also indicate that participants experienced low self-worth, feelings of inadequacy,

and isolation prior to self-diagnosis. Individuals with ASD are prone to developing

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depression and anxiety and are at risk for suicide (Cassidy et al., 2014; Sterling et al.,

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2007). If these individuals are experiencing significant symptoms and are in a

transitional stage, either exploring a self-diagnosis or moving towards formal diagnosis,

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they may be at even higher risk while they work through this identity ―crisis‖ and self-

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exploration.

Thus, though self-diagnosis cannot be recognized as legitimate without formal

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evaluation, healthcare professionals who encounter self-diagnosed individuals across care

settings should still recognize and validate the experiences and perceptions of these
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individuals. In his proposed self-diagnosis, self-treatment, and self-monitoring model,

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Charlton (2005) described self-diagnosis:

Of course, introspection is not reliable (although, to be fair, neither is any other

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form of clinical diagnosis). The results of introspection should therefore be

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regarded as a working hypothesis, and open to revision on the basis of experience.

On the other hand, it is reasonable to assume that consciousness evolved because

it was adaptive, so the results of introspection are worthy of consideration.

Regardless of whether or not they are formally diagnosed, healthcare professionals must

recognize the critical need to screen these individuals for comorbidities and situational

grief.

Of current studies that have explored the diagnostic experience of ASD in

adulthood, all describe a complex mix of positive and negative emotions, often describing
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concurrent relief and regret for delayed self-understanding (Author, 2016; Powell &

Acker, 2016; Punshon, Skirrow, & Murphy, 2009). In the current study, for example,

despite the positive feelings towards diagnosis described by most participants, others

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indicated that their self-diagnosis was ―unsettling,‖ ―separating‖ them from others,

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difficult to accept, and made them reflect on their pasts and mourn the loss of ―not

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knowing sooner.‖ Several participant stories mirrored Kubler Ross‘s (1969/2014) five

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stages of grief. Participants described initial denial of diagnosis, anger over their

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situations and for not being aware of their diagnosis earlier in life, bargaining with self

trying to account for symptoms without diagnosis, depression, and ultimately self-
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acceptance. Without formal diagnosis, these self-diagnosed individuals may cycle

through this grief process as they continue to grapple with denial.

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Participants in this sample described mistrust in healthcare professionals as a

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potential barrier to diagnosis. Healthcare professionals working in mental health should

recognize the concerns of those who are self-diagnosed just as they would treat an
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individual who is formally diagnosed. If professionals begin an assessment by refuting

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the self-diagnosed individual‘s concerns based on the merit that no formal diagnosis

exists, they are likely to reinforce existing feelings of mistrust. Instead, professionals

should begin the appointment by listening and validating the experience of the self-

diagnosed individual. For example, professionals might ask, ―What symptoms are most

troubling to you?‖ ―How are these symptoms affecting your daily functioning?‖ ―How

did you arrive at a self-diagnosis?‖ ―Tell me what you know about ASD.‖

Professionals should be mindful of their own preconceived judgments about self-

diagnosis in general, recognizing that ―fear of not being believed‖ can prevent a self-
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diagnosed individual from confiding her or her concerns. Furthermore, professionals

should understand that a self-diagnosed individual might only be self-diagnosed because

formal diagnosis is not possible. They should assess, ―Have you considered participating

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in a formal evaluation for ASD?‖ ―If so, what has prevented you from participating?‖

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―If not, why not?‖ Professionals who encounter individuals who are self-diagnosed in

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any clinical environment should screen for comorbidities in this population, particularly

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anxiety, depression, and suicidal ideation.

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This study had several limitations. First, this study relied on participants‘ self-

report of self-diagnosis. Participants were not evaluated by mental health professionals,

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and thus may represent subclinical cases, misdiagnosed individuals, or individuals who

incorrectly attribute unique personality traits to ASD. Data described in this study should
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be viewed only in the context of self-diagnosis, particularly in considering the symptoms

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described in Table 3. Another limitation was the reliance on online communities for

recruitment. Individuals in these communities may influence one another, potentially

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reaffirming negative views of the healthcare system or of mistrust in professionals, which

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would skew findings (Brownlow & O‘Dell, 2006; Giles & Newbold, 2010). These

individuals may be more likely to experience self-acceptance, belonging, and support

from their online community than those on the outskirts who do not belong to such

groups. For example, the theme ―Sense of Belonging‖ might be unique to those

individuals participating in an online ASD community. Though individuals were

recruited from a variety of online forums, it was not possible to recruit those who are not

currently involved in some form of ASD community. Finally, the inability to ask
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individual follow-up questions was a limitation, though the large sample size of this

qualitative study allowed the researcher to adequately ensure saturation of data.

Future studies should quantitatively examine barriers to formal diagnosis of ASD.

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While this study was able to qualitatively capture reasons that participants opt for self-

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diagnosis, future studies should examine presence of barriers among individuals who

were able to reach a formal diagnosis in adulthood and generalizability of these barriers

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across the adult ASD population. It is also significant that 44% of this sample was

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female despite the fact that ASD is 4.5 times more prevalent in males than females (CDC,

2014). This is consistent with findings in children that report that diagnosis is more
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likely to be delayed in females than males (Daniels & Mandell, 2013; Russell et al.,

2010), but also warrants asking the question, do females face more barriers to formal
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diagnosis than males?

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Findings from this study bring life to the experiences of those who are self-

diagnosed only, either as a precursor or an alternative to formal diagnosis. Healthcare

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professionals who encounter individuals who are self-diagnosed with ASD should
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validate the self-diagnosis experience, be mindful of preconceived notions about self-

diagnosis, and should assess for comorbidities even if an ASD diagnosis has not been

formally confirmed.
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Table 1. Partial audit trail of theme ―Understanding Myself‖

Significant Statement Formulated Meaning Sub-Themes Theme
―It was the first time anything The self-diagnosis made him make
about me had made any sense.
Self-Diagnosis
sense.‖

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Makes Sense
―Suddenly, almost my whole When she was self-diagnosed, her

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of Life
life started to make sense.‖ whole life started to make sense.
Experiences

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―I understand my past so much He understands his past better after
better now.‖ self-diagnosing.
Understanding
―Now I‘m happier. I know so He is happier since self-diagnosis.

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Myself
much more about myself and I He knows more about himself and
Self-Diagnosis
like how I interpret the world.‖ likes his worldview.
Allows
―I have struggles, but I also

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The self-diagnosis is allowing him
Individuals to
have strength and the to start seeing his strengths.
see their
pragmatic in me is starting to
Strengths
see the usefulness in my
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strengths.‖
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Table 2. Demographic characteristics of the sample (N = 37)

n %
Gender (N=36)
Male 20 56
Female 16 44
Age (N=36)

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Mean: 29.9 years

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Range: 18-52 years
Highest Level of Education (N=36)

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High school graduate 5 14
Trade/technical/vocational training 3 8

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Some college 13 36
College graduate 9 25
Some postgraduate work 2 6
Postgraduate degree 4 11

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Employment Status (N=36)
Employed 25 70
Unemployed or disabled MA 3 8
Student 8 22
Race/Ethnicity (N=35)
Asian 1 3
Black 2 6
Hispanic 1 3
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White 31 88
Country (N=36)
Argentina 1 3
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Belgium 1 3
Germany 1 3
Canada 4 11
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India 1 3
Russia 1 3
Norway 1 3
Slovenia 1 3
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Turkey 1 3
United Kingdom 5 13
United States 19 52
Note: Sample size is provided for each demographic characteristic to account for missing
data. Total sample size N = 37.
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Table 3. Examples of ASD symptoms experienced by participants.

Symptom Evidence from sample
Anxiety, ―My heart starts to race when I need to send an email, make a phone call,
particularly in social answer the phone or open the door to someone.‖
situations

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Becoming absorbed ―I would lose myself in drawing or playing with Barbies and forget to eat
in projects/hobbies or drink.‖

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Behavioral tics ―When I was younger I used to flex/unflex my fingers until they hurt.‖

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Being bullied ―I have been bullied all my life. I can‘t remember a time when someone
wasn‘t picking on me.‖

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Depression & ―I self harmed, and was going to call my mum up to say goodbye to her
suicidal ideation before I killed myself, but as soon as I heard her voice, I couldn't‘ do it
and came home instead.‖

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Difficulty reading ―I have an incomplete understanding or misunderstanding of motivations
others of other people during social interactions.‖
―I have a difficult time understanding when and why people get upset.‖
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Experiencing ―I can get overwhelmed by certain environments and I want to run and
“meltdowns” or hide somewhere.‖
“shutdowns” ―I began to recognize my meltdowns for what they were.‖
Feeling “socially ―I was always on the fringes of social circles, if at all, and I would often
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awkward” say things that other people deemed tactless or rude.‖

Participating in ―Luckily my friends think it‘s hilarious that I sleep around and tell them
risky behaviors about it.‖
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Poor eye contact ―I have never been able to look people in the eye, and I can‘t get it right if
I try. I either avert my gaze completely or stare intently.‖
Sensory sensitivity ―I dislike touch.‖
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―I suffer sensitivity to sound and light.‖

Showing too much ―I am emotionally disconnected.‖
or not enough ―I spend most of my time between neutral and content and if I do have
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emotion other emotions they are extreme.‖

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Table 4. Comparing Themes in Current Study to Formal Diagnosis Experiences

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Current Study (Author, 2016) (Portway & (Powell & Acker, 2016) (Punshon, Skirrow, & (Wylie, 2014)

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Johnson, 2005) Murphy, 2009)

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Phenomenology; Phenomenology; Constant Mixed methods study, Interpretive Model only; no research
37 participants; 77 participants; comparative qualitative strand analyzed phenonmenological study
self-diagnosed as informally or analysis; 18 using thematic content analysis; 10 participants;

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adults (age≥18 formally participants with analysis; 74 participants; formally diagnosed as

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years) diagnosed as ASD; young adults adults receiving full diagnosis adults age 21-44 years
adults (age≥18 age 18-35, of autism spectrum or

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years) diagnosed at subclinical threshold
various times diagnosis
Themes from

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Current Study
Feeling I Always Knew I Not quite fitting Negative life experiences Knowing that we are
“Othered” was Different (not feeling accepted in different

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bullies)
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Beliefs about Asperger
syndrome (held beliefs
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that they were different

from others and ―not
‗fitting in‘‖)
Managing Self Identify formation Pretending to be normal &
Doubt (internalizing criticisms; resisting self-identification
struggling with Reaching the ―tipping
anxiety/depression/self- point‖ of self-identification
harm pre-diagnosis)
Sense of Effect of diagnosis on
Belonging beliefs (―meeting other
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people with Asperger

syndrome, making

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friends and feeling as

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though they ‗fitted in‘
with a group of people‖)

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Understanding Striving for Self- Understanding and Effect of diagnosis on Researching ASD and
Myself Acceptance explanation: ―It puts the beliefs (positive & reaching self-discovery

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pieces together in my mind negative; diagnosis Finding self-acceptance

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… helps because it explains provided a framework to through enhanced
so much … I reflected on my explain their difficulties understanding of our
past‖ & ―exonerated them from

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Feeling better: ―I feel better
about myself because … I
know it‘s not my fault‖
strengths
being blamed for their
previous difficulties‖;
―positive reframing of

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some symptoms‖)
Questioning the Wandering into the Experience of services
Need for
Formal
Future
PT (pre-diagnosis; being
misdiagnosed & mistrust
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Diagnosis in healthcare services)
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