Introduction

Autism, the prototypical pervasive developmental disorder (PDD), is conceptualised as a behavioural syndrome, defined by a triad of observable difficulties with social interaction, communication and flexibility of behaviour (American Psychiatric Association 2000). Since the disorder was first described by Kanner (1943) there have been ongoing attempts to evaluate and refine the autism diagnosis. In common with other areas of clinical psychopathology this has involved asking questions about its reliability, validity and utility.

Estimating the reliability of a diagnosis is conceptually simple and involves measuring agreement between clinicians and over time (Streiner and Norman 1995). In assessments conducted by properly trained clinicians using standardised instruments, autistic disorder (AD) and Asperger’s disorder (AsD) are reliable diagnoses that can be consistently distinguished from each other and from non-PDD (Mahoney et al. 1998). By contrast pervasive developmental disorder—not otherwise specified (PDD-NOS) appears to be an unreliable diagnosis in research (Mahoney et al. 1998) and community settings (Daniels et al. 2010).

Assessing validity is a more subjective and epistemologically complex task, as is suggested by the fact that there is no universally agreed definition of validity in psychiatric nosology, or indeed in science more generally (Kendell and Jablensky 2003). Nevertheless, a conventional process for assessing the validity of mental disorders has developed. It involves testing how well a putative disorder can be distinguished from other disorders and from normality in terms of its antecedents, its current correlates and its predictors (e.g. Kendler 1980; Robins and Guze 1970). The validity of autism and the other PDDs continues to be assessed, and a number of issues are yet to be resolved. For example there is uncertainty about the validity of distinguishing between AD and AsD and the current draft of the Diagnostic and Statistical Manual—Fifth Edition (DSM-V; American Psychiatric Association 2010) proposes they be subsumed by a single autism spectrum disorder category. Furthermore there is currently debate about whether autism is: a truly coherent syndrome (Happé et al. 2006); dimensional or categorical (Constantino and Todd 2003); a triad, a dyad or a single dimension (e.g. Mandy and Skuse 2008); distinct from PDD-NOS (e.g. Mandy et al. 2011); a single entity or a collection of ‘autisms’ (Geschwind and Levitt 2007).

Parallel to the scientific concern about the validity of AD, AsD and PDD-NOS is the more practical question of their utility—how useful they are clinically. Investigations of utility have tended to emphasise the needs of professionals rather than clients. For example, First et al. (2004) state that ‘Clinical utility is the extent to which DSM assists clinical decision makers in fulfilling the various clinical functions of a psychiatric classification’ (p. 947). They go on to define a disorder’s utility as its ability to communicate important information, inform assessment, suggest helpful interventions and predict outcomes (First et al. 2004). According to these ‘clinician-focused’ criteria we can infer that the PDDs have some utility, in that they communicate information about an individual’s likely strengths and difficulties as well as their prognosis (e.g. Howlin et al. 2004). Increasingly a PDD label also informs clinicians about interventions that may be helpful (e.g. Vismara and Rogers 2010; Reichow and Volkmar 2010; Seida et al. 2009).

The limited literature that directly investigates PDD’s utility for service providers suggests ambivalence amongst clinicians. Professionals have reported feeling dread at the prospect of conveying a PDD diagnosis (Nissenbaum et al. 2002) and uncertainty about how to help individuals with an autistic disorder (Carbone et al. 2010). Nevertheless, they have also described PDD diagnoses as being helpful in giving families realistic expectations of their child and for informing treatment (Carbone et al. 2010). Clinicians have reported the belief that a PDD diagnosis has particular utility for younger children, since they anticipate greater improvements from early interventions (Nissenbaum et al. 2002).

Clearly a disorder that has utility for clinicians is also likely to be useful to those who receive the diagnosis. However little is known about the direct utility of PDD diagnoses for the people who receive them and for their families. Clinical experience tells us that a PDD diagnosis may be useful for those who receive it through increasing self-understanding, explaining difficulties and violations of societal norms to others, offering better access to services, informing planning for the future and so on. Anecdotal evidence also suggests that there can be negative effects of a PDD diagnosis, such as stigmatisation and lower self-esteem. There has been very limited empirical investigation of these possibilities, and the current literature tells us little about how much people believe they have gained (or lost) from receiving a PDD diagnosis. Whilst no studies have addressed directly the question of PDD’s utility for service users, insights are provided by some qualitative studies.

In a small (n = 4) pilot study interviewing parents of a child with autism, it was reported that a PDD diagnosis had helped parents to make sense of their child’s difficulties, to adapt better to their child’s condition and to form more realistic expectations for the future (Midence and O’Neill 1999). Studies exploring the views of individuals who have been diagnosed with a PDD are especially rare and have involved adults rather than children. Hurlbutt and Chalmers (2002) interviewed three adults with autism about ‘perceptions of their life experiences’. For these participants their diagnosis had helped them foster a positive self-concept, as ‘autism’ was felt to connote originality and honesty, in contrast to the perceived narrow-mindedness and biases of ‘neurotypicals’. In another qualitative study some of the adults with a PDD reported finding their diagnosis useful as a way of explaining their difficulties to people outside the family (Portway and Johnson 2005).

Despite strong arguments for the value of including children as participants in order to obtain first-hand accounts in qualitative research (e.g. Jones et al. 2001; Kirk 2007) there are no formal studies of the views of children with a PDD regarding their diagnosis. Chilvers (2007) published first-hand accounts of children with a PDD that indicated mixed emotions about their diagnosis, with some children reporting that it helped them to feel more normal and others saying that it had a negative, restrictive effect upon their lives. Whilst these accounts provide some insight into the worlds of children with a PDD, they were not analysed in any systematic way and therefore it is difficult to draw conclusions or common themes from them.

The present study aimed to explore directly the utility of a diagnosis for children with a PDD and their parents. It was designed to delineate the perceived benefits and costs of being labelled with a PDD. Given the ongoing uncertainty about the validity of distinguishing between AD and AsD and the proposals to merge these disorders in DSM-V, we were particularly interested to learn from our participants about their perceptions of the value of having distinct autism and Asperger labels.

Families’ views on the utility of PDD diagnoses are under-researched, making it difficult to develop hypotheses or measures for quantitative investigation. Accordingly a qualitative approach was employed for the current study in which framework analysis (Ritchie and Spencer 1994) was used to organise and interpret data from in-depth interviews. This approach, which has to our knowledge never before been used with a PDD population, is designed for the systematic investigation of pre-determined research objectives (Pope et al. 2000), and is especially well suited to the detailed examination of people’s understanding of concepts and terms. Qualitative studies, unlike those using quantitative methods, are not designed for hypothesis testing, and nor do they provide generalisable descriptions of a whole population. Instead they aim at systematic exploration and the generation of hypotheses (Willig 2008). Accordingly, we intend the current study to yield insights into the utility of PDD which will in turn facilitate the development of measures and hypotheses for subsequence quantitative investigation.

Methods

Procedure

Participants were recruited from a specialist clinic for the assessment of children and adolescents with a possible high-functioning PDD. The service accepts referrals from across the United Kingdom. Families were contacted if their child was aged between nine and 16 years old, had a verbal IQ in the normal range and had received a diagnosis of AD or AsD. PDD diagnosis was assigned according to DSM-IV-TR criteria by clinical consensus amongst experienced psychiatrists and clinical psychologists, based upon information from parents and teachers, as well as direct observation. Standardised methods of assessment were used, including the 3Di (Skuse et al. 2004) and the Autism Diagnostic Observation Schedule (Lord et al. 2000). Intelligence was measured using Wechsler intelligence scales appropriate to the participant’s age.

This study’s age- and IQ-based inclusion criteria reflect a desire to recruit individuals at varied stages of development, tempered by the need to ensure that participants would be able to conceptualise and express their experiences. Furthermore, we did not set limits on age at first diagnosis or time elapsed since diagnosis, with the intention of promoting sample heterogeneity so as to maximise our chances of eliciting views and experiences from a range of young people with a high-functioning PDD.

Families were contacted after ethical approval had been obtained from the Research Ethics Committee of the hospital where the research took place. Of the 20 families who were contacted and invited to participate in the research 12 agreed to take part. Two of these were excluded as the young person’s expressive language was described by their parents as very limited. The final sample therefore consisted of ten families. Nine young people were interviewed; the tenth gave consent for his parents to participate but opted not to be interviewed himself. The parent interviews were undertaken with the mother alone in seven cases and with both parents present in three.

Participants

The young people’s ages ranged from nine to 16 years (mean = 11.7 years, SD = 2.5) and all of them identified themselves as ‘White British’. Nine were boys. Six of the young people had received a diagnosis of AsD and four had been diagnosed with high-functioning AD. Eight had a full-scale IQ (FSIQ) in the ‘average’ range (80–120), with one each of the other two participants scoring in the ‘high’ (120–130) and ‘low’ (70–80) range. The age at which the young people had been diagnosed ranged from 4 to 15 years old (mean = 9.3 years, SD = 3.0 years). They had been diagnosed for between a few months and six years before participating in the present research.

We examined the clinical notes of participants to identify significant additional mental health, neurodevelopmental and physical difficulties. Significant difficulties in the current study were defined as those identified by the clinical team as requiring intervention. By this definition, two children had no additional difficulties. Three met criteria for attention deficit hyperactivity disorder (ADHD), four met criteria for an anxiety disorder, one had serious conduct problems, one had dyspraxia and another was in remission from an eating disorder. Two participants had more than one type of significant difficulty additional to their PDD. None had an identified genetic syndrome, or a physical health problem requiring treatment.

Semi-Structured Interviews

The young people and their parents were given the choice of being interviewed alone or in one another’s presence; in the majority of cases they opted to be interviewed alone. Where both parents participated in the research they were interviewed together. All interviews were conducted by the first author in participants’ homes and were audiorecorded.

In line with guidelines for semi-structured interviews (Smith 1995), interview schedules were constructed to cover topics relevant to the aims of the research, whilst also allowing for flexibility in follow-up questions and prompts in order to elicit elaborated accounts. Parent interviews began by gathering information on the background to their seeking a diagnosis, their experiences of the process and initial reactions to receiving the diagnosis. Questions then explored parents’ understanding of the meaning of the diagnosis and their views on the impact and usefulness of the diagnostic label. Interviews with the young people focussed on their understanding of the labels and how helpful or unhelpful they had found them. Parent and young person interview schedules are presented in the appendix to this report.

Analysis

Verbatim transcripts of the interview recordings were analysed using the ‘framework’ approach (Ritchie and Spencer 1994), which involves a structured sequence of steps for systematically identifying themes in qualitative data. Framework analysis was chosen for its applicability to health policy research; it allows a detailed examination of people’s understanding of terms and enables the researcher to concentrate upon pre-determined objectives (Pope et al. 2000; Ritchie and Spencer 1994). It also allows for between-group comparisons, which in the present study facilitated the identification of both shared and unique ideas expressed by the young people and their parents. Guidelines for good practice in qualitative research were followed (Mays and Pope 2000; Pope et al. 2000; Stiles 1999). In order to avoid relying upon a single researcher’s interpretation of the data, a consensus approach was employed (Barker and Pistrang 2005; Pope et al. 2000); the first author took the lead in the analysis but all three authors regularly discussed emergent themes and different ways of conceptualising the data, eventually reaching a consensus on the final set of themes and sub-themes.

Results

Context

All families interviewed had spent many years pursuing a diagnosis for their child before finally obtaining one. The majority of families did not discuss the possible diagnosis with their child before it had been confirmed by the service in which this research took place; the decision to pursue the diagnosis was usually made by the parents independently of their child’s wishes.

Themes and Sub-Themes

In order to address the research objective, themes in the data were organised into those which provide support for the utility of a diagnosis of Autistic Disorder (AD) or Asperger’s Disorder (AsD); those which suggest that the utility of these labels is limited; and those regarding how useful families felt it is to distinguish between high-functioning AD and AsD. The themes and sub-themes for each category are presented with supporting quotations from parents (P) and young people (YP). In cases where both parents participated in the research, a quotation from the father is indicated by (P–F) and from the mother by (P-M). ‘R:’ is denotes a question asked by the researcher. Frequencies of themes are provided in Tables 1, 2 and 3. In cases where both parents participated their data were combined; therefore the highest possible frequency for parent themes is 10.

Table 1 Summary of advantages of an autism or Asperger’s disorder diagnosis
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Table 2 Summary of limitations of an autism or Asperger’s disorder diagnosis
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Table 3 Summary of usefulness of distinguishing autism and Asperger’s disorder
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Advantages of Diagnosis

The perceived advantages of diagnosis fell into three broad themes: bringing understanding, allowing access to practical support, and empowering parents (see Table 1). All parents identified multiple advantages to their child’s diagnosis, but only three young people identified any advantages.

Brings Understanding

The understanding brought by the labels was a central theme for parents: all felt that their better understanding of their child was one of the most useful outcomes of the diagnosis, allowing them to respond in a different way to their child’s difficulties:

It actually makes you accept the child as they are and try to work with them rather than trying to change them into something they’re not. (P8)

For some parents, the diagnosis had also provided a way to explain their child’s difficulties to other people. Parents often felt that prior to the diagnosis their child’s school had struggled to recognise their difficulties and that the label provided a shared understanding through which the family could work collaboratively with the school:

When I go to school now they work with me. (P1)

The diagnosis was also experienced as useful when the child’s behaviour caused members of the public to question their parenting skills:

… he’s still hard work for me, but I think I’m more relaxed about it because I know I can say ‘well, he’s Asperger’s’ and the people will say ‘oh’ and I won’t have that locking horns with them all the time. (P1)

However some parents were hesitant to inform strangers of their child’s diagnosis, feeling that they should not have to explain themselves to people they did not know:

P: It’s just people don’t understand and they thought that he was a naughty boy who needed his bum smacked. R: Did you ever try to explain it to them? P: No, most of them were strangers actually…we’d never even seen them before! (P8)

Only two young people reported that a label could be useful in bringing understanding. They indicated that it might make others more tolerant of the behaviour of an individual with AD or AsD, and it could also help their school to understand their behaviour:

R: What do you think it’s important for people to know [about Asperger’s]? YP: That people have got Asperger’s because if they don’t know, they could get into a fight. (YP8)

Apparently when my primary school found out I had Asperger’s syndrome they were like dancing; they were like ‘Yay, we know what’s wrong with him now, we know what to do with him and sort it out!’ (YP5)

Both of these participants had comorbid ADHD, and it is interesting to note that each of the mothers of the three participants with ADHD commented that a PDD diagnosis had been useful in promoting understanding of their child’s difficulties at school.

Practical Support

The desire to help their child gain the support they needed at school was an important factor in parents’ decision to pursue a diagnosis, and the majority felt that the diagnosis had been useful in achieving this:

The autism support worker for the council got involved at that stage, as did the chairman of the board of special educational needs for the borough, and they all supported his diagnosis and worked with the school to make sure that all his needs were met. (P10)

A few families had succeeded in accessing appropriate support even before a diagnosis was given to the child. In these cases the family obtained the diagnosis to ensure that the support would continue throughout their child’s school life:

I think even though we had a Statement [of Special Educational Needs Footnote 1] it’s important to have the diagnosis of Asperger’s because we don’t want them to say he doesn’t need help anymore. (P7-D)

Some parents also reported that the diagnosis had opened doors and enabled their child to access specialist services or additional sources of support:

I then became a [registered] carer for him which gave me financial assistance which would pay for [his] drama lessons, which has been massively supportive for speech, peer integration, spatial awareness; for confidence as a whole. (P10)

However, some families were hesitant to use these sources of support, feeling that their child’s difficulties were not severe enough to require such input or that their child would feel abnormal for using such services:

I think he could go to specific youth clubs and things like that but at the moment I think he’d prefer to just go to the one with his friends…I think that would be something we would probably access if he wasn’t able to go to anything else really, so [the diagnosis] hasn’t made that much difference. (P8)

A few parents had encountered extreme difficulties in obtaining support for their child and viewed the diagnosis as a “weapon” to assist them in their fight:

For me [the diagnosis] was a positive thing because I thought now I’ve got some ammunition to get [my child] the help he needs. (P9)

For parents who had felt isolated by their child’s difficulties the diagnosis also provided access to an understanding support network of parents who had children with a similar diagnosis:

I believe the label, although it has got its negativity, has a great underlying support network which is only accessible through that label. (P10)

In contrast to parents’ accounts, only one young person mentioned the diagnosis as leading to extra practical support:

I get more help at school and stuff. (YP1)

Empowerment

Some parents had worried that their parenting was the cause of their child’s difficulties or had felt that others blamed them for their child’s challenging behaviour. The diagnosis gave them a different explanation for the cause and maintenance of their child’s difficulties or legitimised their belief that they were not the cause. This resulted in less self-blame and greater self-confidence:

It was what we knew in the back of our minds all these years; it was just someone saying ‘look, you’re right, you’re not neurotic, you’re not a bad mother’. (P2-M)

In addition two parents felt that the diagnosis allowed them to begin planning for their child’s future and empowered them to identify potential obstacles and ensure their child reaches their potential:

He’s going to be an Asperger’s adult and I’m gonna do everything in my damn power to make sure he’s ok in the future. (P1)

Limitations of Diagnosis

There were three perceived limitations of diagnosis: its failure to effectively communicate the young person’s needs; the limited information it provided about an individual’s strengths and difficulties; and the stigma that could result from the label (see Table 2). All but one of the parents identified limitations of the diagnosis, with some identifying multiple factors that reduced the label’s utility. All of the young people identified limitations of the diagnosis.

Diagnosis Ineffective as Communication

Whilst many parents reported that diagnosis had brought improved understanding to themselves, family members, schools, friends and the general public, no one said that the diagnosis had brought understanding to the young people being diagnosed. Most of the young people themselves expressed indifference about their diagnosis and had not attempted to find out about its meaning:

I’m not that interested [in the meaning of the diagnosis]. (YP1)

When they did attempt in the interviews to describe their label they seemed to define it in terms of their own primary difficulty and did not appear to have a sense of its broader meaning:

It means you find it hard to make friends because I find it hard to make friends. (YP4)

I thought that it puts development behind by a couple of years; it did to me. (YP9)

Some parents reported that they had hoped the diagnosis would help their child understand their difficulties but they were doubtful that this had occurred:

I was hoping he’d think ‘oh well, I’m different and that’s fine; that’s the reason why I’m different, it’s not that I’m stupid or odd or anything like that’ but I don’t know whether he’s quite come to that conclusion. (P8)

I don’t believe that [he] had any concept or understanding of what [high-functioning autism] was and as he just said ‘I am what I am, I wouldn’t know any different’ and to try and say ‘this is who you are’ in black and white or even verbally is very difficult. (P10)

It was only parents of older participants in the sample (aged over 10 years) who commented on the lack of impact the PDD label had on their child’s understanding of their own difficulties.

Parents also felt that the diagnosis failed to convey effectively an understanding of their child’s difficulties to others, with people either failing to see that their child had needs or only having a stereotyped understanding of autism:

I don’t think there is any understanding or acceptance of autism in the mainstream. (P2-F)

I think with friends and other mums they just say ‘my little boy’s like that’ or ‘my little boy does that’ so they don’t really understand. (P7-M)

One young person also said that he did not feel his friends had understood when he had told them about his diagnosis.

Nearly all parents felt that the diagnosis had not served as an effective enough communication of their child’s educational needs, and in this sense had failed to meet their expectations. In some cases the label had not given schools sufficient understanding to allow the young person to reach their full potential:

I’ve read up on it myself a little bit and it seems like the SENCOs Footnote 2 don’t really know a great deal about it and they tend to feel it’s a behavioural issue and something like the cliché that middle class parents with children who can’t read very well say it’s dyslexia; I think they tend to think it’s middle class parents with children who can’t behave very well, it’s Asperger’s. (P8)

Of the young people interviewed three felt that the diagnosis had not changed anything at school. All of these participants had a comorbid anxiety disorder.

A few parents reported that little support had been provided by services once they were referred back to their local area for follow up and that they had been left to manage their child’s difficulties alone; it seemed that local services did not understand their child’s needs or did not know how to meet those needs:

[The hospital] introduced us to a circle of people and I thought she was going to get that help there, and then they wrote and said now she’s got the diagnosis it has to happen at your end and we didn’t get anything at our end at all. (P3)

Provides Limited Information

Most parents said that the diagnosis on its own provided limited information about their child. In particular, most felt that the utility of the diagnosis was limited by the heterogeneity of presentations that fall under the labels of AD and AsD, resulting in limited applicability of the literature:

What I’ve read in the books is not her…she’s completely different to what it says. (P3)

Sometimes I mix with mothers of children with the same diagnosis and their children are in special schools but they’ve got the same label. I find that hard to understand. I look at their child and think they’re nothing like my child; I can’t see any similarities but they’ve got the same diagnosis. (P4-M)

One parent identified the limited information available regarding the aetiology of AsD and AD as a concern:

I wish there was an actual answer [about cause] because I would like to know, not that I could whip myself for having done the wrong thing if it was something I’d done, but then at least you would know. (P8)

Another identified the lack of available information on prognosis as an issue:

The only thing that upsets me is when people say ‘is he going to be able to get a job?’ and ‘is he going to be able to get married and have kids?’; I don’t know how his future’s going to be. (P5)

Only one young person reported a sense that the heterogeneity of presentations that fall under the label AsD made it difficult to identify with many aspects of his diagnosis:

I don’t do a lot of Asperger’s but I do some of it. (YP4)

Stigma

This was a theme identified by some of the young people and their parents and could be broadly divided into the young person feeling different and the young person being treated differently by others. Parents reported that they tried to avoid discussing the diagnosis with their child as they did not want them to feel abnormal:

I’ve been trying to skim round [the diagnosis] a bit because I want her to have as normal an upbringing as possible; to think she’s normal. (P3)

We don’t want to load him down with a label and although it’s important to have a diagnosis we don’t want him thinking that he’s got to wear this badge all his life. (P7-D)

Nearly half of the parents expressed concern that other people treated their child differently because of their diagnosis or discriminated against them:

… the people that know [about the diagnosis] treat him differently. Other children if they know what he’s got can be a bit unkind. (P4-F)I don’t want people to make assumptions that he’s going to be a certain way. (P8)

However only two young people reported feeling different to their peers:

I keep thinking that I’m one of those disabled persons going like this [pulls body in tight with his hands against his head]. (YP6)

A few young people were also worried what others would think of them if they knew about their diagnosis or felt that those who did know treated them differently:

Students act differently because they know I’m autistic, they’re like ‘he’s the weird kid’. (YP5)

Autistic Disorder versus Asperger’s Disorder: Usefulness of Distinction

The majority of parents and young people expressed uncertainty regarding the difference between AD and AsD. Most expressed indifference to which label was given, despite the fact that over half of the parents also expressed a view that one label may have advantages over the other (see Table 3).

Uncertainty Regarding Distinction

The majority of parents felt that AD and AsD were very similar or even interchangeable terms and were unsure why they were distinct disorders:

I think that Asperger’s and autism are exactly the same thing. I can’t see why there’s a difference at all. (P7-M)

When you read about it sometimes they say high-functioning autism and sometimes they say Asperger’s. (P4-M)

Despite this, only one parent stated that they had directly accessed information on the other diagnosis in order to obtain ideas about how best to help their child:

…I get an online thing about parenting for Asperger’s children and all the problems that these people face and talk about with Asperger’s, it’s what [my child with AD] does. (P9)

Five of the young people also reported that they did not think there was a difference between AD and AsD:

I think Asperger’s is high-functioning autism because I’m high-functioning. (YP5)

I’ve always heard [Asperger’s] was the same thing as autism, I thought they were the same thing. (YP10)

Indifference to Distinction

All but one of the parents who were interviewed stated that they did not mind which label their child was given as long as they had some label with which to gain understanding and access to services:

It wouldn’t make any difference to me [if my son had been diagnosed with high-functioning autism instead], to be honest, because he’d still be the boy he is; I wouldn’t feel any different towards it. I think if I’d have come away and they’d said he’s got nothing wrong with him I don’t know what I would’ve done. (P1)

It’s just a label really. [My son] would be the same boy whatever label you attach to him. (P4-F)

Several parents felt that it would be clearer and would aid people’s understanding if the two labels were combined:

I think it would simplify it; people would know that it’s all the same condition. (P8)

However one parent felt that combining the labels might be unhelpful and could potentially reduce understanding:

To lump the two into the same category just seems unfair to [my son]. In that respect I wish there were more categories because [he’s] got mild Asperger’s as opposed to full-blown Asperger’s; there should be some special word for him, for just purely on the social side. (P4-F)

Only a few young people expressed a view about distinguishing between the two labels and all of them stated that they were indifferent to the prospect of the two labels being combined:

R: How would you feel if high-functioning autism and Asperger’s were given the same name? C: That would be fine. (YP5)

Valuing Individual Labels

Parents varied in their views on whether AD or AsD would be the more useful term to describe their child’s difficulties. Just over half the parents spontaneously observed that they felt AD is better understood by others and is a clearer label:

You probably would be advised to say high-functioning autism because people understand autism; when you say Asperger’s people don’t know what you’re talking about anyway. (P3)

Being called Asperger’s syndrome doesn’t give any hint that it’s on the autistic spectrum…I think that’s confusing. (P6)

However half the parents expressed concern about the stigma attached to the term autism and were concerned by the ‘Rain Man’ stereotype that people often hold and the impact this might have on their child’s future:

Unless you’ve got a child with it, if you say to someone ‘what do you think of autism?’ the first thing they think of is Rain Man, even now. (P2-M)

I think it’s probably easier for [my son] when he’s older to say he’s got Asperger’s rather than autism because of what people are going to think about it at work and things like that. (P7-M)

None of the young people expressed a preference between the terms high-functioning AD and AsD.

Discussion

The main aim of the present study was to understand better the utility of PDD diagnoses by exploring the views of young people with high-functioning autistic disorder (AD) or Asperger’s disorder (AsD), and their parents. A related aim was to investigate the perceived usefulness of distinguishing between AD and AsD, to contribute to the debate about whether these two disorders should be merged in DSM-V.

Previous research has tended to assume that the utility of a PDD diagnosis far outweighs any disadvantages (e.g. Howlin and Moore 1997; Siklos and Kerns 2007; Williams 2006). Our findings suggest a more complex picture, with most participants expressing ambivalence about how useful the diagnosis had been. All parents elaborated advantages associated with their child’s diagnosis. By contrast, few of the young people we interviewed identified advantages to their diagnosis, and all of them indicated that there were limits to its utility. In general, participants expressed a pragmatic approach to the question of whether AD and AsD should be distinguished, basing their opinions on the practical implications of such a change with little concern for its scientific merits.

Views of Young People

Landsman (2003) found that mothers of children with developmental delay believed that the disability would become a core aspect of their child’s identity, but this did not appear to be the case with the young people interviewed in the present study. All the young people we interviewed found it difficult to think about their diagnosis, and were keen to distance themselves from it. Many had avoided finding out information about their PDD and were reluctant for others to know they had been given this label. Most could not identify any benefits to having the diagnosis.

In particular, a fear of being singled out as ‘not normal’ and stigmatised was reported by young people in our study. This has also been described in other research with individuals with a PDD (Jones et al. 2001) and professionals have reported an awareness of this risk when diagnosing PDD (Nissenbaum et al. 2002). However it contrasts with findings from studies of adults, which found that a PDD label could be a source of pride and a positive part of an individual’s identity (Hurlbutt and Chalmers 2002; Portway and Johnson 2005). The reason for this discrepancy is unclear. It could be due to small sample sizes (e.g. n = 3 in Hurlbutt and Chalmers 2002) and a response bias in which only adults who had actively sought a PDD diagnosis were interviewed. It may also reflect developmental factors, since the participants in the current study were in late childhood and adolescence, when concerns about fitting in and being normal are especially common and intense (Newman and Newman 2008). If this is the case it is possible that as the participants in the present study reach adulthood they too will come to view their diagnoses more positively. Such developmental hypotheses about the utility of PDDs warrant further investigation, ideally in longitudinal studies.

Parents’ Views

The parents in this study reported a complex collection of competing beliefs about the utility of their child’s diagnosis. This accords with findings that parents are ambivalent regarding the role of professionals in obtaining a diagnosis of a PDD for their child (Avdi et al. 2000) and experience ambiguous loss when the diagnosis is received (O’Brien 2007). This ambivalence is particularly striking given that all parents who participated in the present research reported having been convinced that their child had a PDD prior to receiving the diagnosis and tended to view the diagnosis as a welcome acknowledgement of their child’s difficulties.

In agreement with a previous study (Midence and O’Neill 1999) parents described advantages arising from a PDD diagnosis’ capacity to communicate and explain their child’s difficulties both within and without the family. This sometimes had the effect of changing perceptions of their child, creating less blaming and negative narratives about them. Parents also described the ways in which diagnosis afforded their child access to support, services and additional funding. Conversely, they reported that the PDD diagnosis was unhelpful when it bought limited extra support or funding, or when it promoted negative, stigmatising perceptions of the child. This accords with the finding of Woodgate et al. (2008) that parents of children with autism can be left feeling isolated due to a lack of support for and understanding of the condition.

Some parents raised concerns about the utility of AD and AsD that were directly related to issues of validity as defined in psychiatric nosology (e.g. Kendler 1980). In particular, the heterogeneity of presentations that warrant a PDD diagnosis (e.g. Happé et al. 2006) was raised by over half of the parents who were interviewed. Parents were concerned by the variance in the level of functioning in individuals with AD and AsD, with the majority saying that their child’s difficulties were mild and that they were keen for their child to be distinguished from people with more severe disorders. It is likely that this limitation to utility will be countered by proposals for DSM-V (APA 2010) to include an index of severity and intellectual ability alongside the autism spectrum disorder diagnosis.

High-Functioning Autism and Asperger’s Disorder

Only one parent indicated that they had directly sought information about the other label in order to further their understanding of their child’s difficulties, supporting the argument by Cashin (2006) and Mayes et al. (2001) that the current DSM-IV-TR system of separate AD and AsD diagnoses may prevent parents accessing relevant information. While the young people who participated in the present research did not express a preference between the two labels there was some division between the parents about whether it would be better to use the term high-functioning AD or AsD, with some parents arguing that the former is clearer as it contains the word ‘autism’ whilst others preferred AsD as they felt it holds less stigma. The latter argument is supported by Leekam et al. (2000), who state that while there is little evidence to validate the label of AsD it holds value insofar as it is more acceptable to parents and highlights the child’s better communication skills. However, given the number of parents who highlighted the importance of the effectiveness of any label in communicating their child’s difficulties and needs, and their sense that a label containing the term ‘autism’ was clearer to others, it seems that parents of high-functioning children on the autism spectrum may welcome the proposed change to an overarching label of autism spectrum disorders in DSM-V.

Limitations of the Present Study

It is important to consider how applicable the current findings are across the autism spectrum. Participants in this study experienced high levels of comorbid difficulties of the sort found in the PDD population (Simonoff et al. 2008). However, they were solely recruited from a specialist service for assessment of high-functioning autism spectrum disorders so it is likely that our sample is not representative of the full autism spectrum, especially of individuals with a general learning disability in addition to PDD. Furthermore, eight families declined to take part in the study and it is possible that had they participated, their experiences and views would have generated additional themes to the ones we report. Nevertheless, the sample size in the current study is typical of those found in qualitative research, and is in the range considered to be adequate for generating sufficient in-depth data for qualitative investigation of a phenomenon (Strauss and Corbin 1998).

A second limitation is that all participants were ‘White British’. Previous research has indicated that parents’ reactions to a diagnosis of an autism spectrum disorder for their child are affected by the family’s ethnicity and culture (Blacher and McIntyre 2006; McCabe 2007) so different themes may have been identified if families from other cultural backgrounds had been involved in the research. Another limiting factor is that of the ten families who participated in the research only one of the young people was a girl. Research regarding young people’s reactions to a diagnosis of ADHD found that boys and girls responded differently with boys employing externalising strategies and girls using internalising strategies (Kreuger and Kendall 2001). It is therefore possible that there are gender differences in young people’s views on the labels of AD and AsD that have not been identified in this study. Nevertheless, the high proportion of boys in the present study does reflect the gender ratio at the higher functioning end of the autism spectrum (Skuse et al. 2009). A further consideration is that fathers were underrepresented in the study; of the ten families who participated all ten mothers were interviewed while only three fathers were. Gray (2003) found that mothers and fathers differed in their responses and coping strategies when their child was diagnosed with AD so it is possible that fathers would have contributed different views to the study. It is interesting to note that Gray (2003) found fathers tended to report feeling somewhat disconnected from their child’s difficulties and felt that the difficulties had a greater impact on their child’s mother; this may account for the decision not to participate made by some fathers.

Research Implications

Despite these limitations our findings have implications for research and clinical practice. Further empirical study of the utility of PDD will require the translation of this abstract construct into something more concrete, and therefore measurable. The results of our framework analysis can guide this process of operationalisation, and we intend to develop a questionnaire based on the themes identified in the current study. Such a measure will enable the quantitative investigation of how often people with PDD, and their families, believe they have gained (or lost) from receiving their diagnosis. It will also be useful for quantifying the types of utility afforded by PDD diagnosis.

Furthermore it will be clinically valuable to investigate which factors influence the likelihood of a PDD diagnosis being perceived as useful. Based on our framework analysis of interviews with young people and their parents, we propose a model of PDD’s utility to guide such investigations. In describing such a model we do not attempt a definitive account of the utility of PDD; rather we are suggesting a set of testable, inter-related hypotheses generated by our qualitative research.

Our model embodies the idea that the utility of PDD is dependent upon both scientific and contextual factors. Parents reported that the utility of AsD and AD is limited by the sorts of concerns that relate directly to validity, such as heterogeneity within diagnoses and uncertainty about aetiology and prognosis. This supports the view of First et al. (2004) that the utility of a diagnostic category is influenced by its validity. However our findings also suggest that a large component of PDD’s utility is derived independently of its validity, from how PDD labels are received within a specific cultural, legislative and economic context. In this sense, utility may not be inherent to PDD diagnostic criteria, but rather may arise from the relationship between the disorders they describe and the environment. For example, if an individual receives a diagnosis of AsD in an area where educators are entirely ignorant of the disorder and where people with a PDD are not entitled to any additional funding or support, the diagnosis will be of limited use (Woodgate et al. 2008; Carbone et al. 2010) regardless of how valid it is. By contrast, the same label in a context where there is expertise and financial support for people with AsD will have greater utility. Similarly our findings suggest that the utility of making a distinction between AD and AsD depends partly on how those labels are received by children, families, educators, insurance companies and so on.

Interview data intimate that additional contextual factors may also influence the utility of PDD. All parents of the three participants with comorbid ADHD reported that their child’s PDD diagnosis was useful in promoting understanding at school. Two of the young people with ADHD also independently made this point. By contrast, all the young people who said the PDD diagnosis had not been useful at school had a comorbid anxiety disorder. Qualitative research is not designed to test formally for interactions between variables. Nevertheless, these observations do point to the importance in future quantitative studies of examining the moderating effects of child characteristics, such as comorbidity and self-esteem, on utility of diagnosis. Other variables of interest include age of person with diagnosis, age at diagnosis, and time since diagnosis.

Clinical and Service Development Implications

The ideas generated by our framework analysis have implications for improving the care and quality of life for people diagnosed with a PDD. It is worth acknowledging the obvious fact that ongoing work designed to improve the validity of the current diagnostic system will improve its clinical utility, yielding insights into the causes, correlates and outcomes of autistic disorders and generating more effective interventions. However, we propose that that no matter how valid autistic diagnoses become, their utility will be constrained by the availability and nature of post-diagnostic services, and by beliefs about PDD in the wider community.

Our findings underscore the value of working to counter the effects of stigma, by helping young people engage with their diagnosis in a positive and constructive way, and by educating non-PDD peers. This suggests that the utility of the PDDs will be improved by the development of empirically evaluated psychoeducational programmes, designed to help people integrate their PDD diagnosis into their self-concept in a positive and constructive way. There was a sense from families that society does not really understand AD and AsD and ‘Rain Man’ stereotypes of such difficulties are widely held. We infer from this that the utility of PDD diagnoses will be enhanced by the dissemination of more accurate information regarding PDDs to the wider population. In addition, parents reported that they often felt they were still fighting alone on behalf of their child even after receiving the diagnosis; in order to support them it is vital that follow up services are offered and that these services communicate directly with the child’s school in order to ensure that teachers understand and can respond to the child’s needs.