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How many doctors does it take to make an autism spectrum diagnosis?

R O B I N P. G O I N - K O C H E L Baylor College of Medicine, Houston, USA

V I R G I N I A H . M A C K I N T O S H Virginia Commonwealth University, Richmond, USA

B A R B A R A J . M Y E R S Virginia Commonwealth University, Richmond, USA

A B S T R A C T Parents of children with pervasive developmental disorders (n = 494) were surveyed to determine their level of satis- faction with the process of getting an autism spectrum diagnosis. Participants in this web-based study (mean age = 37.8 years) came from five countries and reported on children with an average age of 8.3 years (range = 1.7 to 22.1). All children had a diagnosis of either autism (59.9%), Asperger syndrome (23.5%), or PDD-NOS (16.6%). Higher levels of parental education and income were associated with earlier diagnosis and greater satisfaction with the diagnostic process. Parents were more satisfied with the diagnostic process when they saw fewer professionals to get the diagnosis and when the children received the diagnoses at younger ages.

A D D R E S S Correspondence should be addressed to: R O B I N P. G O I N - K O C H E L , PhD,Texas Children’s Hospital, 6621 Fannin Street CC1560, Houston,TX 77030, USA. e-mail: [email protected]

With the increasing awareness of autism spectrum disorders (ASDs) and reported rises in prevalence estimates (Gillberg and Wing, 1999; Wing, 1993; Wing and Potter, 2002), it is valuable to garner parents’ perspectives on their experience of getting an autism spectrum diagnosis for their children. Although it is possible accurately to diagnose autism before 2 years of age, the criteria for making such diagnoses in infants and toddlers have not been well established (Young and Brewer, 2002). Thus, parents are frequently faced with a slow and frustrating period of uncertainty and worry and find themselves in the position of trying to convince their children’s doctors that there is a need for a specialist assessment. Several

autism © 2006 SAGE Publications and The National

Autistic Society Vol 10(5) 439–451; 066601

1362-3613(200609)10:5

www.sagepublications.com DOI: 10.1177/1362361306066601

K E Y W O R D S

autism spectrum; diagnosis;

diagnostic age; parent

satisfaction

studies that have qualitatively examined parents’ views on the diagnostic process have noted a tendency for some physicians to minimize or dismiss parents’ concerns about their children’s development and, instead, to encourage them to wait for their children to ‘grow out of’ their problems (Ahern, 2000; Gray, 1995; Schall, 2000; Stephenson et al., 1991). Although the average age at which autism is diagnosed has decreased in recent years, families have continued to describe a significant struggle during the process of obtaining an autism diagnosis (Smith et al., 1994).

In two reports based on a survey of more than 1200 families in the UK, Howlin and Moore (1997) and Howlin and Asgharian (1999) analyzed parental reports on their experiences of obtaining ASD diagnoses for their children. In the first of these studies, 8 percent of families received a diagnosis for their children upon their first clinical visit; 40 percent received a diagnosis through a referred agency (by the second clinical visit); and 63 percent finally received a firm diagnosis by their third clinical visit (second referral). Over a quarter of parents waited more than 5 years before diagnosis was confirmed.

Such experiences negatively colored parents’ perceptions of the diag- nostic process, with 49 percent indicating that they were either ‘not very’ or ‘not at all’ satisfied. In the second report using this same sample, Howlin and Asgharian (1999) specifically compared the diagnostic experiences of the parents whose children received either an autism or an Asperger syndrome diagnosis. They noted that parents in the Asperger group waited considerably longer – approximately 5.5 years, on average – to receive a diagnosis relative to parents in the autism group; in turn, they reported more dissatisfaction with the diagnostic process.

It is unclear as to why many clinicians hesitate to address families’ initial concerns about their children’s atypical development. One possible expla- nation is a lack of information about ASD. For example, Shah (2001) discovered that fourth-year medical school students averaged fewer than five correct responses on a 10-item questionnaire about autism. However, there are challenges to early diagnosis of ASD by primary care physicians that extend beyond training issues (Siegel et al., 1988). Autism spectrum disorders are heterogeneous, with a continuum of symptoms that can range from mild abnormalities to severe behavior problems (American Academy of Pediatrics, 2001a). Behavior difficulties and speech delays are common developmental concerns for parents of children between the ages of 1 and 3, leading physicians to be cautious about incorrect labeling or diagnosis (Filipek et al., 2000). Children with speech delays most often do not have autism, and a wrong diagnosis could cause unnecessary anxiety in families whose children are developing typically, albeit at a slower rate. This is the necessary tension between sensitivity and specificity that every pediatrician

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must face: to diagnose every child that truly has autism but to avoid mistaken diagnoses of children without the disorder. Routine screening of development at every preventive care visit could lead to earlier identification (American Academy of Pediatrics, 2001b; Filipek et al., 2000), but most pediatricians do not consistently use developmental screening tools at well- child visits because of such barriers as time constraints and lack of insur- ance reimbursement (Filipek et al., 2000; Sices et al., 2003).

Whatever the reasons for the slow diagnostic process, it remains clear that delays in obtaining an ASD diagnosis (1) contribute to parental distress and difficulties in coping with the disorder for families whose children are on the autism spectrum (Goddard et al., 2000; Quine and Pahl, 1987) and (2) postpone children’s eligibility for early intervention services, which, in turn, may affect their long-term outcomes (Goin and Myers, 2004). For these reasons, improvements in the diagnostic process that diminish the time between symptom appearance and formal diagnosis are necessary. In fact, so important is this mission that the 1998 National Institutes of Health Coordinating Committee ranked it second highest in terms of ongoing autism research (Bristol-Power and Spinella, 1999).

The purpose of the present investigation was (1) to describe parental satisfaction with the process of getting an autism spectrum diagnosis and the age at which parents report receiving a diagnosis for their children and (2) to investigate associations of these outcomes with demographic charac- teristics of participants and aspects of the diagnostic process. Because some studies (e.g. Gray, 1995; Schall, 2000) had examined this phenomenon intensively with small samples, we aimed to capture the extensiveness of the diag- nostic experience, in a fashion similar to Howlin and Moore (1997), using a large sample. We hypothesized that (1) diagnostic ages would differ between genders, racial groups, and children categorized as either older or younger at the time of the questionnaire; (2) parent education and income levels would both be related to the age at which children received a diag- nosis; and (3) children’s diagnostic ages and the number of professionals visited en route to the diagnosis would predict parent satisfaction with the diagnostic experience, with younger ages and fewer professionals visited contributing to greater satisfaction.

Method

Participants Participants included 494 parents of children with autism spectrum disorders.1 Their average age was 37.8 years (SD = 6.7, range = 22 to 58 years), and their average educational level was 15.2 years (SD = 2.4, range = 9 to 26 years), equivalent to the third year of college. The majority of

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respondents were mothers (n = 438, 88.7%), with the remainder being fathers, stepmothers, or grandmothers (collective n = 43, 8.3%). Most self- reported as white/Caucasian (n = 433, 87.7%), but additional racial groups included Hispanic/Latino, black/African American, Asian, biracial/mixed, Native American Indian, or some other, unlisted group (collective n = 51, 10.2%). The largest number of participants came from the US (n = 377, 76.3%), with almost every state in the union represented, followed by those from England/Ireland (n = 32, 6.5%), Canada (n = 30, 6.1%), Australia/New Zealand (n = 18, 3.6%), and other, unlisted locales (n = 6, 1.2%). Families were divided fairly evenly in terms of annual income (with the exception of those making fewer than US$10,000 per year).

Of the children whom parents described, 393 (79.6%) were male (a male-to-female ratio of 4:1). Their average age at the time of the ques- tionnaire was 8.3 years (SD = 4.3, range = 1.7 to 22.1 years) and the largest group was described as white/Caucasian (n = 427, 86.4%). Accord- ing to parental report, all children had a primary ASD diagnosis of either autism (n = 296, 59.9%), Asperger syndrome (n = 116, 23.5%), or PDD- NOS (n = 82, 16.6%). A specialist doctor (e.g. neurologist, neuropsy- chologist, developmental pediatrician) provided an ASD diagnosis in 231 cases (46.8%); psychologists and psychiatrists provided diagnoses in 116 cases (23.5%) and 68 cases (13.8%), respectively; the remainder (71, 14.4%) were diagnosed by either a team of professionals, a family physi- cian, or another professional (e.g. occupational therapist or special educator). At the time of the questionnaire, almost all children were living at home with their parents (n = 486, 98.4%).

Instrument Participants completed a questionnaire as part of a broader survey on the overall development of their children with autism. The questionnaire was posted on the internet from August 2002 until February 2004, and partici- pants submitted all responses electronically. For the purposes of the current investigation, we focused on items concerning (1) participant and focal child demographic information; (2) children’s primary autism spectrum diagnoses and the ages at which they received diagnoses; (3) who made the diagnoses; (4) how many professionals families saw during the process of getting an autism spectrum diagnosis; and (5) the level of satisfaction with the process of getting this diagnosis (extremely satisfied, moderately satisfied, or not satisfied).

Procedure The questionnaire was advertised to potential participants through announcements made by autism organizations. More than 220 such groups

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in the US and seven English-speaking countries were contacted for cooper- ation (e.g. local chapters of the Autism Society of America, National Autistic Society, Cure Autism Now). Study advertisements in the newsletters, websites, and e-mail messages of these organizations contained a link to the website hosting the questionnaire, which described the study in detail and provided informed consent. Submission of a completed questionnaire indicated an individual’s consent to participate; all data were stored elec- tronically for later analysis. This study was reviewed and approved by the university Institutional Review Board.

Results

The average age at ASD diagnosis was 4.5 years (SD = 2.9, range = 0.8 to 15.3 years), but differed according to diagnosis, F(2, 481) = 122.72, p < 0.001. A Tukey’s HSD post hoc test revealed that children diagnosed with either Asperger syndrome (mean = 7.5 years) or PDD-NOS (mean = 4.2 years) received their diagnoses at significantly later ages relative to those diagnosed with autism (mean = 3.4 years, p ≤ 0.02), and children with Asperger syndrome were diagnosed significantly later than children with PDD-NOS (p < 0.001). Because the maximum age of children at the time of the survey was 22 years, the child sample was split into older (greater than age 11) and younger (age 11 and younger) groups in order to compare ages of diagnoses. Within all diagnostic categories, children in the older group were diagnosed at significantly later ages relative to children in the younger group. Results are provided in Table 1.

Overall, girls were diagnosed with an ASD at later ages relative to boys (see Table 2) but a significant sex difference in age of diagnosis existed only for the Asperger syndrome and PDD-NOS groups, F(1, 109) = 7.49, p = 0.007, and F(1, 79) = 4.41, p = 0.039, respectively. No differences in age

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Table 1 One-way analyses of variance for diagnostic-age differences between older and younger children per type of ASD

Type of ASD Age groupa n Mean (SD) F p

Autism Younger 231 3.0 (1.2) 41.534 < 0.001 Older 60 4.7 (3.1)

Asperger Younger 73 6.1 (2.2) 54.809 < 0.001 Older 39 10.1 (3.5)

PDD-NOS Younger 65 3.6 (1.6) 30.560 < 0.001 Older 16 6.6 (2.9)

a ‘Younger’ refers to children aged 11 years or younger at the time of the survey, while ‘older’ refers to children older than this cutoff age.

of diagnosis were found between racial groups, F(5, 476) = 1.40, p = 0.222.2

Parents reported visiting, on average, between four and five clinicians en route to the ASD diagnosis (range 1 to 29). Seven participants (1.4%) responded to this question with comments such as ‘too many to count’. Numbers of professionals visited did not differ significantly based on child’s gender, race, or type of ASD diagnosis. Child diagnostic age was positively correlated with the number of professionals seen during the process of obtaining a diagnosis (r = 0.15, p = 0.002). Essentially, the more professionals a child saw during the process, the older he or she was when finally receiving the diagnosis. Child diagnostic age was negatively associ- ated with parent satisfaction with the diagnostic process (r = –0.15, p = 0.001), parent level of education (r = –0.13, p = 0.007), and annual family income (r = –0.11, p = 0.017). Thus, the younger that children were when they received an ASD diagnosis, the higher the parents’ level of education, the greater their family income, and the more satisfied parents were with the process of getting a diagnosis.

A total of 198 parents (40.1%) reported that they were ‘not satisfied’ with the diagnostic process; 174 (35.2%) indicated that they were ‘moder- ately satisfied’; and 116 (23.5%) were ‘extremely satisfied’. There was an inverse relationship between parent satisfaction with the diagnostic process and the number of professionals seen en route to a diagnosis (r = –0.31, p < 0.001). Satisfaction did not differ significantly, however, with respect to type of ASD diagnosis, χ2(4) = 0.91, p = .924, or the professional making the diagnosis, χ2(8) = 13.33, p = 0.101,3 nor was it related to time since diagnosis (i.e. child’s current age minus diagnostic age), r = –0.081, p = 0.08.

A logistic regression analysis was conducted to predict parental satis- faction with the diagnostic process using (1) child’s age at diagnosis and (2) number of professionals seen en route to the diagnosis as independent variables. After the number of professionals visited was taken into account,

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Table 2 One-way analyses of variance for gender effects on ages of diagnoses by diagnostic category

Diagnosis Male Female

n Mean (SD) n Mean (SD) F pa

Autism 240 3.3 (1.6) 51 3.7 (2.8) 1.902 0.169 Asperger 84 7.0 (3.0) 27 8.9 (3.6) 7.493 0.007 PDD-NOS 61 3.9 (2.0) 20 5.1 (2.6) 4.41 0.039

a Bold type p-values denote significance.

there was no significant relationship between age at diagnosis and satisfaction with the diagnostic process, χ2(2) = 3.84, p = 0.147. There- fore, a logistic regression analysis was performed using only the number of professionals visited as a predictor variable and satisfaction with the diagnostic process as the response. A significant relationship between the two was found, χ2(2) = 36.0, p < 0.0001, and this relationship is illus- trated in Figure 1. The vertical axis shows the predicted proportion of participants in each of the satisfaction groups depending upon the number of professionals visited. That is, in the case of one professional visited, the satisfaction proportions are 0.28 for ‘not satisfied’, 0.39 for ‘moderately satisfied’, and 0.32 for ‘extremely satisfied’. Odds ratios were calculated to show how the ratios of these proportions changed with every unit increase in the number of professionals visited. Two odds ratios were calculated: the odds ratio of ‘moderately satisfied’ to ‘not satisfied’ and the odds ratio of ‘extremely satisfied’ to ‘not satisfied’. The odds ratio of the ‘moderately satisfied’ proportion to the ‘not satisfied’ proportion was OR = 1.12 (χ2 = 12.5, p = 0.0004, 95% CI = 1.08, 1.25), and the odds ratio of the

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Figure 1 Relationship between number of professionals visited and satisfaction with the diagnostic process

0.0

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‘extremely satisfied’ proportion to the ‘not satisfied’ proportion was OR = 1.19 (χ2 = 15.1, p = 0.0001, 95% CI = 1.16, 1.42).

Discussion

These results largely corroborate the findings of Howlin and Moore (1997) and Howlin and Asgharian (1999) in terms of parents’ satisfaction with the diagnostic experience. Forty percent were ‘not satisfied’ with the process. Parents whose children (1) received diagnoses at earlier ages and (2) visited fewer clinicians reported greater satisfaction. Similarly, children with Asperger syndrome were diagnosed at significantly later ages relative to those with autism or PDD-NOS. This makes sense, as with Asperger syndrome there are no clinically significant delays in language acquisition, cognitive development, self-help skills, adaptive behavior, or curiosity about the environment (American Psychiatric Association, 2000). These children’s differences manifest as impaired social interaction and the development of restrictive, repetitive patterns of behavior and interests, and these are commonly not clear problems until school age (Hyman et al., 2001). However, unlike Howlin and Asgharian’s (1999) work, we did not see differences in levels of satisfaction with the diagnostic experience among the autism, Asperger, and PDD-NOS groups. This finding is puzzling, especially in light of the fact that the Asperger group experienced the longest delays en route to the diagnosis; it may reflect a combination of cultural differences (i.e. British versus largely US sample) and the increase in autism awareness over recent years.

When compared with the aforementioned studies, our sample revealed younger average ages of ASD diagnoses. Howlin and Moore (1997) and Howlin and Asgharian (1999) found autism diagnosed in their UK sample on average at 5.5 years and Asperger syndrome at 11 years. Our sample reported an average diagnosis at 3.4 years for autism and 7.5 years for Asperger syndrome. Moreover, within our sample, there was evidence that children 11 years old or younger at the time of the survey received diag- noses considerably earlier than did those older than 11 years at the time of the survey. These findings suggest a continuing trend in clinicians’ more timely recognition of ASD. This progress is further reflected in parents’ satisfaction with the diagnostic process, as younger parents (who tend to have younger children) were more satisfied with the diagnostic experience relative to older parents.

That parent education and income were associated with earlier diag- noses and subsequent higher satisfaction with the diagnostic process is not necessarily surprising but is worthy of emphasis. Healthcare and education providers who work with families experiencing disabilities should make

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every effort to ensure equitable diagnostic pathways for parents and children in lower socioeconomic brackets. These families may have fewer resources from which to draw support and information and may, in turn, put forth less of a ‘push’ toward clarifying their children’s issues and needs. Assuring that underprivileged groups are receiving the same services as are those from more advantaged backgrounds is pertinent to the global management of ASDs and their effects on children and families.

Despite the fact that the diagnostic age is decreasing, just over 40 percent of the sample reported that they were not satisfied with the diag- nostic process. While this is less than the 49 percent in Howlin and Moore’s (1997) report, it seems high relative to the corresponding drop in average age of ASD diagnosis. Howlin and Asgharian (1999) noted that parents of children with Asperger syndrome reported more dissatisfaction with this process than did parents of children with autism, and they attributed it to their lengthier wait for a formal diagnosis. However, in the current sample, such dissatisfaction was expressed in fairly equal proportions across differ- ent diagnoses: 39.4 percent of the autism group, 42.6 percent of the Asperger syndrome group, and 42 percent of the PDD-NOS group were not satisfied with the diagnostic process. We learned, too, that the more professionals that families saw en route to the diagnosis, the more negatively parents viewed the experience. Obviously, more doctor visits, especially to new doctors, mean more hassle, more money (especially in the US), and more of a wait before receiving a formal diagnosis. But if these related factors are improving over time, perhaps there are others that bear on parents’ discontentment with the diagnostic experience that warrant future exploration.

Limitations With regard to the number of professionals seen during the process of obtaining a diagnosis, it was unknown whether participants included in this count the practitioners that the family may have visited following the ASD diagnosis. Although we have no evidence of this, it is plausible that some families visited professionals after receiving the ASD diagnosis to disprove the diagnosis, and this may have been construed as part of the diagnostic process.

It should also be noted that questionnaires concerning satisfaction, whatever the topic, generally produce rates indicating at least moderate satisfaction well above 50 percent (Hensel, 2001), and 58.7 percent of the parents in the current sample indicated either moderate or extreme satis- faction with the diagnostic process. Therefore, it is difficult to judge the sensitivity of this type of measure. In addition, some researchers view the concept of ‘satisfaction’ as relative, and, for patients receiving medical

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services, Fitzpatrick (1997) suggested that ‘satisfaction’ reflects the differ- ence between the quality of care expected relative to what is actually received. While this is the concept we aimed to capture here, it is possible that other factors, such as the confirmation of disability in a child – regard- less of how sensitive and appropriate the diagnostic process was – may have more profoundly influenced parents’ perceptions of the experience as negative.

Finally, all information obtained was strictly by parent report, includ- ing ASD diagnoses. Because data were obtained electronically and anony- mously, it was impossible to validate such information. Moreover, the internet data-collection method may have excluded participation by families who did not have computer and internet access or skills, and findings may not generalize to this group. However, Gosling et al. (2004) recently analyzed the validity of results from both questionnaire-based and web-based investigations and concluded that the two were congruent. It is possible, though, that the method of recruiting families through autism support organizations introduced some systematic bias (e.g. toward more informed or educated families), thereby suggesting that results may not accurately represent the experiences or beliefs of families who are not affiliated with such organizations.

Future directions Because our study focused on parent perceptions of the diagnostic process, it was not known how much information their children’s clinicians had about autism or why they may have hesitated to diagnose ASD. Our data also cannot reveal how many children initially showed slow or unusual development but then, as their doctors had hoped and predicted, eventu- ally caught up and were unaffected by any disorder. Given the possible rising incidence of autism and in light of Shah’s (2001) findings, it seems worthwhile to ensure that physicians are well informed about autism through both their initial training and their continuing education programs. It further seems worthwhile to learn more about physicians’ perspectives on the matter of ASD diagnoses among young children. This would help to clarify whether diagnostic delays are the result of their lack of knowledge about ASD symptomatology or due to some other factors.

Similarly, we were limited in attributing parents’ level of satisfaction with the diagnostic process to a few quantitative variables (i.e. number of professionals visited, demographics) and could not say what else may contribute to their disappointment with the experience. Qualitative studies on this topic (e.g. Gray, 1995; Schall, 2000) suggested that parents’ dissatis- faction largely centered around clinicians’ minimization of their concerns about their children’s development and subsequent diagnostic delays. Our

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findings indicated that parents’ dissatisfaction was strongly associated with the number of professionals they visited to obtain the diagnosis. We further noted that the largest percentages of parents in each diagnostic category were not satisfied still with this process, despite decreases in ASD diagnos- tic ages. Further work is necessary to identify what additional factors render the diagnostic experience a negative one for so many families.

There is no way of knowing how often the delay in diagnosis turns out to be the right action. Certainly, many children are slow to talk and distant in their social interactions for reasons unrelated to autism. Some of these children later catch up in their development; for them, a professional’s ‘wait and see’ stance was wise. For others, the delays are significant; for them, a mistaken diagnosis of autism could set treatment on the wrong track. Parents of children who do have autism spectrum disorders are understand- ably anxious to know as early as possible what is wrong. The potential harm of a wrong diagnosis must be balanced, however, against the frustration of a delayed diagnosis.

Acknowledgements We would like to thank the parents who cooperated with this project for sharing their stories about their families’ experiences with autism. We are also grateful for the assistance of Al Best, PhD, in the Department of Bio- statistics at Virginia Commonwealth University, for his assistance with database organization and management and statistical analyses.

Notes 1 The original sample also contained data from 27 parents who reported ‘no clear

ASD diagnosis yet’ for their children, five parents whose children were aged 29 years or more at the time of the survey, one parent whose child was diagnosed with childhood disintegrative disorder, three professionals working with affected children, one sibling of a child with autism, and one self-report. These data were removed for all analyses in the present investigation.

2 The ‘Native American Indian’ category was excluded from this analysis because there was only 1 child described as such.

3 The ‘Family Physician’ category was excluded from this analysis because there were only 6 children diagnosed by this type of professional.

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