Adults’ Experience of an Asperger Syndrome Diagnosis

Abstract

This study explores the impact on 74 adults attending an Asperger syndrome diagnosis clinic. Feedback forms containing quantitative and qualitative measures were completed 3 months post-assessment. Qualitative responses were analyzed using thematic content analysis. Regarding questions about their emotional response, participants reported themes of “Relief,” “Feeling better about self,” “Mixed feelings,” “No clear feelings,” and “Negative feelings.” Regarding the impact of the diagnosis on their lives, participants reported themes of “Understanding and explanation,” “Self-acceptance,” “Social interaction,” and “Support.” A “sub-clinical threshold” group reported a theme of “Diagnostic disappointment” relating to their experience of not receiving a full diagnosis. There were no differences between pre- and post-assessment on standardized measures of anxiety, depression, or satisfaction with life. However, on a self-report Likert-type scale, participants who received a full diagnosis reported a significantly more positive effect of the diagnosis on their lives, compared with those who did not.

Keywords

Autism Spectrum Disorder Asperger syndrome adults diagnostic assessment emotional reaction effect on life

The autistic spectrum describes a set of heterogeneous neurodevelopmental conditions, characterized by clinically significant impairments in social interaction and communication alongside restricted, repetitive behaviors and interests (Diagnostic and Statistical Manual of Mental Disorders, 5th ed.; DSM-V; American Psychiatric Association [APA], 2013). Differentiation of different subgroups, such as Asperger syndrome (AS), has been problematic, as research has found little support for differences between subtypes such as AS and High Functioning Autism (HFA; Witwer & Lecavalier, 2008). This has been remedied in DSM-V, which has replaced subtypes with one simpler, streamlined diagnosis of autism spectrum disorder (ASD) that contains a dimensional element, being differentiated into three levels based on severity and support needs. Because this change was introduced after the conclusion of the present study, our research applies to a diagnosis of AS under the classifications in the International Statistical Classification of Diseases and Related Health Problems (10th ed.; ICD-10; World Health Organization, 1992) and the DSM (4th ed., text rev.; DSM-1V-TR; APA, 2000).

The prevalence of autism is high, occurring in approximately 1% of the population (Baird et al., 2006; Brugha et al., 2011). A significant increase in prevalence and incidence rates from the 1990s to the 2000s (Taylor, Jick, & MacLaughlin, 2013) sparked national initiatives to develop diagnostic clinics within public services for adults with undiagnosed autism (British Department of Health, 2010; National Institute of Clinical Excellence Guidelines [NICE], 2012).

Despite a recent increase in awareness of autism, individuals born with the condition between the 1940s and the 1980s may have lived their lives with multiple problems, either without diagnosis or with the wrong diagnosis (Attwood, 2007). Specifically, it has been suggested that receiving a diagnosis of AS late in life can be a life-altering experience and can lead to positive change in areas of social impairment and social inclusion (Woodbury-Smith, Robinson, Wheelwright, & Baron-Cohen, 2005). Few studies have explored the experience of receiving a diagnosis of AS in adulthood (Punshon, Skirrow, & Murphy, 2009). Preliminary research by Punshon et al. (2009), which involved asking 10 adults about their experience of receiving an AS diagnosis, found that it tends to be a positive but complex experience, with reactions changing over time. For most, it led to a “positive shift in their thinking” (p. 277). One man commented that “it was a bit like standing up in court and hearing the jury say ‘not guilty’” (p. 277).

Diagnosing adults with any form of autism is complex for a variety of reasons. First, indicators of autism can improve over time as people learn new skills or modify underlying tendencies (Farley et al., 2009; Howlin & Goode, 1998). Seltzer et al. (2003) assessed 405 individuals who had met the diagnostic criteria for autism as children, finding that only 55% met the criteria when reexamined as an adult. Second, there is little consensus with regard to the preferred instrument for diagnosing autistic conditions in adults. In the United Kingdom, the NICE guidelines (NICE, 2012) recommend five assessment tools for adults with autism, whereas Stoesz, Montgomery, Smart, and Hellsten (2011) identified five instruments for diagnosing AS specifically in adults. Both include the Autism Asperger Assessment (AAA; Baron-Cohen, Wheelwright, Robinson, & Woodbury-Smith, 2005), which was used in this study. The AAA is linked to DSM-IV-TR and ICD-10 and will need to be revised in future to meet the amended criteria in DSM-5.

The primary aim of this study was to explore how participants who attended a new clinic felt about their diagnosis of AS and in what ways it affected their lives. A secondary aim was to examine differences in experience between those who failed to meet diagnostic criteria but displayed a number of features of AS (subclinical threshold group) and the diagnostic group.

Method

Participants

This study used an opportunity sample of consecutive attendees at the authors’ adult AS diagnostic clinic. All participants had undergone an assessment, based on their scores on the AAA, along with clinical judgment, and received either a diagnosis of AS (score of 10+ spread across domains) or fell into the subclinical threshold group (score of 6–9); this second group had significant autistic traits but did not reach full diagnosis. One hundred eight people were sent feedback forms 2 to 3 months after assessment, and responses were received from 74 people (69% response rate). Individuals who had received no diagnosis of AS were excluded from this study. This no-diagnosis category included anyone who scored below 6 on the AAA or had another primary diagnosis (e.g., social phobia, obsessional compulsive disorder). For the purpose of this study, we did not differentiate between participants with a specific language delay who might have been given a diagnosis of HFA and AS. The diagnostic group contained 54 participants, and the subclinical threshold group contained 20. All participants consented to participate in the study, and all were assessed as having the mental capacity to make this decision. Eligibility criteria for assessment at the clinic included having a general practitioner in the county and a referral detailing evidence or belief of ASD/AS symptomatology. Referrals came from primary care (63%) and secondary care (37%). In 14% of cases, referral was preceded by a child in the family receiving a diagnosis of being on the autistic spectrum.

Of the 74 responders, the average age was 36.08 years (SD = 12.10). Fifty-nine percent of the sample were male. Thirty-four percent were in steady employment, 36% were in steady relationships, 29% had children, and 35% had attended further education. Common co-morbidities included mental health difficulties of anxiety and depression (35%), attention-deficit hyperactivity disorder (ADHD; 14%), borderline learning difficulties/dyslexia (10%), history of previous psychosis (6%), and previously diagnosed borderline personality disorder (BPD; 6%).

Protocol

Assessment procedure and measures

All participants completed a battery of standardized screening questionnaires after being referred and while on a 2-month waiting list for an assessment. Scores on the Autism-Spectrum Quotient Scale (AQ; Baron-Cohen, Wheelwright, Skinner, Martin, & Clubley, 2001), the Empathy Questionnaire (EQ) or Cambridge Behavior Scale (CBS; Baron-Cohen & Wheelwright, 2004), and the Relatives Questionnaire (adapted by Baron-Cohen from the Childhood Asperger Syndrome Test; Williams et al., 2005) were fed electronically into the AAA, which is a structured diagnostic assessment tool. The assessment interview lasted approximately 2.5 hr and was conducted by one of two clinical psychologists, both trained in the use of the AAA (Baron-Cohen et al., 2005). The participant’s parent, relative, or partner was involved if available. The assessment consisted of reason for referral, implications of diagnosis, an in-depth personal history, and an interview using the AAA. Results were fed back to participants in the session or in a follow-up session. A detailed report with explanations of assessment results was sent to the referrer and the participant.

AQ

The AQ is a 50-item self-report questionnaire that measures the extent of autistic traits. This measure has been shown to have good test–retest reliability (.70) and diagnostic validity (≥.75; Baron-Cohen et al., 2001).

EQ or CBS

The EQ, or CBS, is a 60-item self-report scale measuring affective and cognitive aspects of empathy. This measure has been shown to be reliable (test–retest = .85; Lawrence, Shaw, Baker, Baron-Cohen, & David, 2004), but further evidence is required as to its validity (Baron-Cohen & Wheelwright, 2004).

AAA

The AAA is a three-part diagnostic instrument that includes the AQ, the EQ, and a diagnostic interview. Baron-Cohen et al. (2005) provided evidence for the validity of this measure, but evidence for the reliability of the full AAA is not available.

Relatives Questionnaire

The Relatives Questionnaire is a scale adapted by Baron-Cohen from the Childhood Asperger Syndrome Test, which gathers information on the individual’s developmental history from a close relative.

Hospital Anxiety and Depression Scale (HADS)

This scale (Zigmond & Snaith, 1983) is a widely used 14-item scale for assessing anxiety disorders and depression across clinical groups and in the general population. Reliability (r = .82–.83) and validity (.80) of this measure are well documented (Bjelland, Dahl, Haug, & Neckelmann, 2002).

Satisfaction With Life Scale (SWLS)

The SWLS (Diener, Emmons, Larsen, & Griffin, 1985) is a measure of life satisfaction using five statements scored on a 7-point scale. This measure has been found to be reliable (r = .50–.84; Pavot & Diener, 1993) and valid (r = .42–.81; Pavot, Diener, Colvin, & Sandvik, 1991).

Post-assessment procedure and measures

Feedback forms were sent to participants who received a full diagnosis or were in the subclinical threshold group 3 months post-assessment. These forms included standardized measures (HADS and SWLS) and additional questions designed by the researchers to address research questions. This consisted of the following:

Impact of Diagnosis on Life Measure: A 5-point Likert-type scale for the question, “Has the outcome of the assessment affected your quality of life in any way?” Answers range from positively to negatively.

Impact on Emotions and Impact on Life questions: Two open questions, with free text boxes for a coherent picture of the participants’ experience:

Please describe, in a few sentences, what having a diagnosis of a neurodevelopment condition such as Asperger syndrome means to you. What was your reaction and what were your emotions?

Briefly describe in what way(s) the assessment and diagnosis has affected your life.

Analysis

Quantitative assessment

Statistical analysis of quantitative data was carried out using SPSS. We used t tests to compare pre- and post-assessment questionnaire scores for the whole sample. A Mann–Whitney U test was used to compare scores on the Impact of Diagnosis on Life Measure between the diagnostic group and the subclinical threshold group.

Qualitative assessment

The two open-ended text questions were analyzed using thematic content analysis (Braun & Clarke, 2006). First, each relevant unit of meaning was highlighted according to the first and second research questions. These units of meaning were then coded, using wording from the text as far as possible. The researcher then looked through the entire transcript, coding and revising codes where appropriate. Coding units were reconsidered several days later, and this process continued until the researcher was confident that they comprehensively represented responses from the original text. The frequency of each coding unit was recorded. A second researcher independently coded the forms according to the same coding instrument 2 days later, and the frequencies were compared. Inter-rater reliability between the two coders was high, at 95.4%.

Results

Quantitative Results

Representativeness of the sample

A total of 74 of 108 questionnaires were returned and analyzed (69%). There was no significant difference between individuals who did respond (feedback group) and those who did not return their feedback forms on measures of anxiety, depression, or satisfaction with life, obtained at the time of the initial diagnostic assessment, indicating that the sample was representative on relevant clinical measures. There was a significant (p < .01) difference in age between the feedback group (M = 36.08 years, SD = 12.10) and the rest of the sample (M = 31.44, SD = 10.97), and a significant (p < .01) difference in gender between the feedback group (40.8% = female) and the rest of the sample (25.7% = female), indicating that participants who were female and older were more likely to respond.

Pre- and post-assessment quantitative measures

A statistical analysis of pre-assessment and post-assessment measures of anxiety, depression, and satisfaction with life was nonsignificant for both the diagnostic and subclinical threshold groups. Pre-assessment HADS anxiety scores for the diagnostic group were significantly higher (M = 12.37, SD = 5.4) than those for the subclinical threshold group (M = 8.28, SD = 3.79); t(36) = 2.49, p < .05. In addition, post-assessment HADS anxiety scores for the diagnostic group were significantly higher (M = 12.65, SD = 4.03) than those for the subclinical threshold group (M = 7.82, SD = 3.40); t(36) = 3.81, p < .001. This indicates that the diagnostic group members were more anxious than the subclinical threshold group members. A Mann–Whitney U test revealed a significant difference between participants who received a full diagnosis (n = 54, mean rank = 40.01) and those in the subclinical threshold group (n = 20, mean rank = 27.38), on the impact of the diagnosis on the person’s life scale, where U(70) = 337.5, Z = −2.379, p < .05. The full diagnosis group therefore reported a more positive effect of the outcome of the assessment on their lives. See Table 1.

Table 1.

Comparison Between Diagnostic Group and Subclinical Threshold Group on Pre- and Post-Assessment Measures.

	Diagnostic group^a		Subclinical threshold group^b
Measures	M	SD	M	SD	t test
HADS–Anxiety
Pre-	12.37	5.4	8.28	3.79	2.49*
Post-	12.65	4.03	7.82	3.4	3.81**
HADS–Depression
Pre-
Post-	7.74	5.0	5.35	4.22	Ns
SWLS	13.67	5.94	16.3	7.98	Ns
Pre-
Post-	13.51	5.34	17.42	8.29	Ns

Note. HADS = Hospital Anxiety and Depression Scale; SWLS = Satisfaction With Life Scale; ns = not significant.

n = 54. ^bn = 20.

p < .05. **p < .001.

Qualitative Results: Main Themes for “Emotional Reaction” to Assessment

For main themes, see Table 2.

Table 2.

Coding Units Grouped Into Themes and Split Into Frequencies of Participants Who Received Either a Full Diagnosis of AS or Were in the Subclinical Threshold Group.

			Frequency
Question	Theme	Coding units	AS group (54)	Subclinical threshold group (20)	Total (74)
Emotional reaction to assessment	Relief	Relieved/pleased; hopeful	25	5	30
	Positive feelings	Feel better about self; happy; less lost	21	5	26
	Negative feelings	Abandoned; feel worse; daunted/overwhelmed; depressed/offended; frustrated; numb; angry, surprised/shocked; sad; uncomfortable; worried	15	6	21
	Mixed feelings	Angry not recognized earlier; confused/mixed; initial relief then sadness about limitations	14	2	16
	No clear feelings	No reaction	5	3	8
	Diagnostic disappointment	Disappointed; “In limbo”/lost	1	6	7
Effect of assessment on life	Understanding and explanation	Put pieces together in my mind; confirmation/proof; easier to explain; better diagnosis; framework/format; reflecting on life	57	6	63
	Feel better	Feel more normal; self-acceptance/self-confidence/less self-blame making progress; positively increased activity level	27	2	29
	Support	Daunted by lack of support; improved support; positive effect on working conditions	22	3	25
	Social interaction	improved relationships; people treat me differently	13	3	16
	Nothing has come of it	No effect on life; nothing has come of it	7	6	13
	Lack of clarity	Did not get answers I need; test not thorough enough; unsure what to do	2	6	8
	Negative effect	Confirmation I’m a failure; feel negative about things; worried about future	5	1	6

Relief “Immense relief . . . gratitude.”

The majority of participants (73%), especially those who received a full diagnosis, reported being relieved or pleased. They stated, “I was relieved to have it confirmed,” “relief that it’s not caused by my inadequacy,” or “not to be labelled a ‘weirdo.’” One person commented that it had been “a huge relief . . . at finally being able to make sense of a lot of things in my life.” The words “relieved” or “relief” were the most commonly used emotional words, mentioned in 30 of 74 responses (40%). Despite not receiving a full diagnosis, relief was also seen among the responses from the subclinical threshold group: “The ‘probably AS’ diagnosis is quite sufficient—It explains so many of the puzzling, painful memories and misunderstandings, and why I still get it wrong a lot.”

Positive feelings: “I was happy . . . I feel validated . . . liberated.”

A significant number of participants who received a diagnosis described being “happy” or “pleased” about it. They stated, for example, “I was happy . . . ” and “the diagnosis has liberated me.” Others experienced positive feelings linked to their sense of self: “I feel slightly more empowered”; “makes me feel glad, and stronger, and independent”; “I feel validated”; “I feel more understood.” One person described an almost euphoric experience: “I was so happy I could not sleep that night. I was ‘high’ for about two weeks . . . the only thing I could compare it with was falling in love.” Others described a positive reaction to the diagnosis when it replaced a previous diagnosis: “Not being labelled BPD or just stroppy by the Community Mental Health Team (CMHT) means a lot to me.”

Mixed feelings “Relieved but daunted . . . angry and sad that it wasn’t picked up earlier.”

It was common for participants to write that they had mixed or complex feelings. Often they described a sense of relief in combination with a feeling of being daunted or sad about their limitations: “Relieved at first but I am now starting to see how difficult it can be having AS, not least the disclosure issue”; “Relieved but a bit daunted and overwhelmed, particularly as there is so little support”; “Initially I felt relieved, but at times it feels like confirmation that I am unlikely ever to be normal.” The process of being diagnosed seemed to trigger reflection about past experiences, and some participants described being upset, angry, or frustrated that the diagnosis had not been previously recognized. They stated, “I was upset, because I thought back to many instances in my life and how different and better they would have been if I had been diagnosed earlier in life”; “Relieved and angry that it wasn’t picked up earlier . . . although I’d much rather be angry than confused and depressed”; “[I am] very sad to think my life would be far better today if I had known earlier.”

Negative feelings “Shocked . . . daunted . . . confused.”

Certain participants expressed negative feelings: “Shocked because I didn’t think I had it” and “Angry that I’m the one in a hundred.” Others felt that they were overwhelmed by new information and were unsure what to do next: “Experiencing a feeling of being overwhelmed with information and how to move forward.” For a few people, the diagnosis negatively affected their self-perception and at times brought a sense of hopelessness: “Very depressing to realize that I will never change or get better.”

No clear feelings: “I don’t know how I feel about it.”

A number of participants (10%) described having no emotional reaction to the diagnosis or not being able to describe or label any emotion. Comments included, “It has had no effect—I feel no different”; “No feeling, I am not bothered”; and “No reaction.”

Diagnostic disappointment: “I hoped for clarity . . . I was disappointed not to get a clear diagnosis.”

One third (33%) of the subclinical threshold group reported some disappointment at not having a full diagnosis of AS. One person summarized, “I was hoping that the assessment would give me clear answers, but it didn’t, I’m disappointed and feel that I’m stuck in limbo.” Another said, “It leaves me in No Man’s Land.” Some participants reported frustration following a description of subclinical traits: “I was expecting a diagnosis of Asperger’s, whereas apparently I am ‘borderline’ . . . I was disappointed in the seeming arbitrariness of the measures”; “An AS diagnosis would be a relief.”

Qualitative Results: Main Themes for “Effect on Life” of Assessment

For main themes, see Table 2.

Understanding and explanation: “It puts the pieces together in my mind . . . helps because it explains so much . . . I reflected on my past.”

The most frequently noted theme here was “Gaining understanding and explanation” (a theme expressed in 83% of responses). Many participants made comments that indicated that the diagnosis allowed them to understand themselves better: “It allows me to understand . . . the root of the problem,” “It puts pieces together in my mind,” or “It was like the light being turned on . . . , had answered 50 years’ worth of questions.” The assessment was seen by some as “a useful framework; a format . . . to work with.” One person said, “I am just more understanding how my traits (however slight) work.” Participants described their “suspicions” being confirmed, and the diagnosis made sense of what had previously been very confusing. It seemed to widen participants’ perspectives: “[It] gave me knowledge, understanding, a new way of seeing things.” Understanding could be retrospective and prompted reflection: “When I look back on my life in the light of the diagnosis, things make more sense”; “I have spent time retracing awkward moments”; “Now I know why I have struggled with social situations all these years.”

Feeling better: “I feel better about myself because . . . I know it’s not my fault.”

Participants reported that their sense of worth had improved following diagnosis. For some, the diagnosis provided a greater level of self-acceptance: “In a very real way, the diagnosis has validated my life and made me able to accept that I am not just a failure with a large IQ.” For many participants, the diagnosis had helped them reattribute blame from self to the diagnosis: “I am more content with myself because I know it’s not my fault,” “I have permission to accept that I find some things hard.” Interestingly, in many cases, getting a diagnosis prompted people to act with greater confidence and self-compassion: “It helped me gain confidence in who I am,” “Having a diagnosis means I don’t have to spend my time trying to fix myself.” For some, feeling better about themselves was linked to improvement in mental health: “Although I still feel like a misfit, I feel better about myself—My mental health has stabilized.” Another person commented, “It has not changed the anxiety that I live with; however, it makes it a lot easier to deal with.” One participant described the positive effect of the diagnosis on self-esteem: “I am also all the more proud of my achievements and personal qualities, some of which [sic] in spite of this condition.”

Support: “It helped me get support . . . benefits . . . ” or “daunted by the lack of professional support.”

Some respondents described the diagnosis as positively “opening the way” for tangible gains, including study support, financial benefits, AS-related specialist support, and AS-friendly working practices. Comments included, “[The diagnosis] improves my job prospects,” “[It has had a] positive effect on my working conditions,” “It helped me to get . . . benefits,” “It helped me get help from social services,” and “I have contacted local support groups . . . done research.” Some participants described concern about a lack of support: “[I feel] daunted by the lack of professional support,” “I had hoped that the CMHT and psychiatrist would follow up the report, but they seemed uninterested. The psychiatrist acknowledged that he had little or no knowledge of the subject.”

Social interaction “It changes how others relate to me.”

Many participants described how the diagnosis had changed how other people react to them in either a positive or negative way. Comments included, “I get taken with more understanding now,” “Work understands more now,” and “My family is more understanding now.” For some, the change in other people’s reaction was negative, and the person was more aware of being scrutinized: “Close relatives, wife, mother, daughter have become more focused on coping with me”; “My boyfriend treats me differently.” One person said, “It limits the expectations of others, who watch me more closely, or assume I will never be able to do things at work or socially that I think I can do.”

Lack of clarity “I didn’t get the clarity I needed . . . I was hoping for answers but didn’t get them.”

Many participants (30%) without a full diagnosis reported being disappointed not to have a clear-cut answer to explain their differences and feeling frustrated that their questions regarding diagnosis (and how to label their difficulties) had not been answered. One man said, “Getting a definite yes or no would have put the whole issue to bed”; another person stated, “I’d hoped for answers but did not get them”; and another commented that there were “lots of questions left open.”

Discussion

Main Findings

The most frequently reported emotional reaction was “relief and positive feelings” (73% of responses), with the word “relief” mentioned in 40% of the free text responses. The most frequently reported impact on life was that the diagnosis offered “an explanation and framework for understanding” their experiences (83% of responses). The two themes would appear to be linked, as participants described relief at finding an alternative explanation for why life in the social and emotional worlds has been such a struggle, reallocating blame from self to the condition of AS and creating a less problem-saturated narrative. This reaction resembles the “not guilty verdict” in Punshon et al. (2009) and the “liberating revelation” that can result from a diagnosis of dyslexia, where there is a shift in thinking away from self-blame (Kong, 2012). For some participants, emotional reactions were complex, often combining positive and negative feelings, as illustrated by one participant, who reported, “I cried like a baby and felt like dancing with joy at the same time. I was just happy and relieved but also sad and frightened.” Many participants experienced some anger that the diagnosis had not been made earlier and sadness at how life might have been if the diagnosis had been made earlier. A process of reflection and reassessment of the past often occurred.

The theme of “support” was viewed in both positive and negative lights. For most, the diagnostic assessment opened the way for better support, but a smaller group came to a realization of the lack of support available. Additional funding since this study has allowed this service to develop additional support, and the service now offers a post-diagnostic psycho-educational “Being Me” group, individual post-diagnostic psychological therapy where required, and training and supervision for mental health workers.

A further theme that emerged was the differing “reactions of others.” For some respondents, a diagnosis was positive, helping create better understanding, whereas for a smaller group, there was a negative aspect, with feelings of being blamed, scrutinized, or treated differently. For participants in marital relationships, obtaining a diagnosis often appeared to alter the dynamics of the relationship, and some were signposted to relationship counseling. A small group (approximately 10%) of participants reported that there had been “no effect” of the diagnostic assessment on their lives or said, “I don’t know how I feel about it.” Many people with autism are considered to be alexythymic (Hill, Berthoz, & Frith, 2004), meaning that they struggle to identify and find words for their feelings, which may partly explain this response.

Demographic Information

Participants who attended the clinic were diverse in terms of ability, marital and occupational status, and socioeconomic background. The number of women attending the clinic (approximately one third of participants) was high in the context of the prevalence rate for autistic conditions in women (Baird et al., 2006), although it has been suggested that the ratio of females to males has been increasing alongside the general prevalence rate (Balfe, Tantum, & Campbell, 2011; Tantam, 2012). Fourteen percent of the total sample had a child diagnosed with an autism spectrum condition, which contributed to their reasons for being referred to the clinic and emphasizes the strong genetic component of the condition. This is a group of people who tend to experience clinical levels of anxiety, mental health difficulties, and below-average levels of life satisfaction. Although the majority reported a positive response to the assessment, there were no statistically significant differences between pre- and post-assessment outcome measures of HADS anxiety, HADS depression, or SWLS, although there were positive trends. One person provided a possible explanation: “It has not changed the anxiety that I live with; however, it makes it a lot easier to deal with.” Alternatively, the outcomes could have been affected by the instruments used, as measures have not yet been designed that adapt to and are necessarily sensitive to the autistic spectrum population.

Subclinical Threshold Group and Diagnostic Disappointment

Quantitative results revealed that participants reported a significantly more positive impact on their lives if they received a full diagnosis than if they received a subclinical threshold diagnosis. Assessors were careful to explain the dimensional approach to autism (i.e., that participants’ diagnosis lay on a spectrum with inherent “shades of gray”). Nevertheless, a theme in this latter group was that of “diagnostic disappointment.” One client memorably commented, “I’ve got it or I haven’t; it’s got to be one or the other!” The ambiguity of having a condition but not meriting a full diagnosis of AS seemed understandably frustrating for this client group, who often process the world in a literal, “black-and-white” manner. Clinical judgment coupled with AAA criteria was used particularly in “borderline” cases, where the client would obviously benefit from a diagnosis in terms of support or other positive outcomes. This situation is perhaps best summed up by Attwood (2007), who reminded us that “the final decision of where you draw the artificial line, namely, whether a person has a diagnosis of AS, is a subjective decision” (p. 52). A further dilemma for the assessor is what name or label to give to the person in the subclinical threshold group. The new DSM-5 has Social and Communication Disorder as a separate diagnosis and possible home for borderline cases, and ICD-10 has Atypical Autism, but terms such as mild Asperger, Asperger Residual, Autistic traits, broader autistic phenotype, or on the autistic spectrum could be used. The dilemmas for the diagnosing clinician are how broad or narrow to allow diagnostic categories when dealing with a condition on a dimensional scale and what choice of label to offer for the subclinical group.

Limitations of Study and Future Developments

Findings should be understood in light of certain limitations of this study. The cross-sectional design provides a snapshot or an initial reaction soon after the person received a diagnosis, which may differ from its longer-term impact. A longer-term follow-up or a longitudinal study may be useful to determine whether initial reactions persist or whether, as in Young, Bramham, Gray, and Rose’s (2008) study of ADHD, the process of accepting a diagnosis encompasses many stages. There may also be a bias in the representation of feedback forms returned, as participants with alexithymia, who have difficulties describing feelings and mood, and participants with literacy difficulties, may have not felt able to complete the forms. We also noted a bias in age and gender for this feedback group: Older people and females were more likely to send back the feedback forms.

A further limitation concerns the opportunity sample, comprising participants already in some way motivated to receive a diagnosis. Consequently, the study lacks information about persons with suspected autism who do not reach the referral stage. A further limitation was that the data collection occurred during the transition period between DSM-IV-TR and DSM-5; as a result, there is some lack of clarity around appropriate usage of diagnostic terminology. Despite such limitations, this clinic is representative of the new wave of adult autism assessment clinics precipitated by the NICE (2012) Guidelines. Future research might include an in-depth qualitative analysis of married couples who receive a diagnosis late in life (perhaps changing the dynamics of their relationship) or an examination of whether reactions to getting a diagnosis of AS is different in any way to getting a DSM-5 diagnosis of ASD.

Conclusion

The majority of the people who received a diagnosis had a positive response, with “relief” described as the most common emotional reaction. The effect on participants’ lives tended to be positive, offering “understanding and explanation” and “an alternative to self-blame.” In many cases, the diagnosis triggered self-reflection and complex reactions, including regrets about what could have been. Social relationships and support were themes highlighted both positively and negatively. For some of those in the subclinical threshold group, there was a theme of “diagnostic disappointment” and a less positive effect on their lives.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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