autism © 2006

How many doctors does it SAGE Publications

and The National
Autistic Society
take to make an autism Vol 10(5) 439–451; 066601
1362-3613(200609)10:5

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 AC K I N TO 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 AC T Parents of children with pervasive developmental K E Y W O R D S

disorders (n = 494) were surveyed to determine their level of satis- autism
faction with the process of getting an autism spectrum diagnosis. spectrum;
Participants in this web-based study (mean age = 37.8 years) came diagnosis;
from five countries and reported on children with an average age of diagnostic age;
8.3 years (range = 1.7 to 22.1). All children had a diagnosis of either parent
autism (59.9%), Asperger syndrome (23.5%), or PDD-NOS (16.6%).
Higher levels of parental education and income were associated with
satisfaction
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.
ADDRESS Correspondence should be addressed to: RO B I N P. G O I N - KO C H E L ,
PhD,Texas Children’s Hospital, 6621 Fannin Street CC1560, Houston,TX 77030, USA.
e-mail: kochel@bcm.tmc.edu

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
www.sagepublications.com 439
DOI: 10.1177/1362361306066601

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

AU T I S M 10(5)
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
440

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

 G O I N - KO C H E L E T A L . : H OW M A N Y D O C TO R S
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
441

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

AU T I S M 10(5)
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
442

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

 G O I N - KO C H E L E T A L . : H OW M A N Y D O C TO R S
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

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.

443

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

AU T I S M 10(5)
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.

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,
444

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

 G O I N - KO C H E L E T A L . : H OW M A N Y D O C TO R S
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

1.0

0.9

0.8
Satisfaction proportion

0.7

0.6
Extremely satisfied
0.5 Moderately satified
Not satisfied
0.4

0.3

0.2

0.1

0.0
1 3 5 7 9 11 13 15 17 19
Number of professionals

Figure 1 Relationship between number of professionals visited and satisfaction

with the diagnostic process

445

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

 10(5)
AU T I S M
‘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
446

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

 G O I N - KO C H E L E T A L . : H OW M A N Y D O C TO R S
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
447

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

AU T I S M 10(5)
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
448

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

 G O I N - KO C H E L E T A L . : H OW M A N Y D O C TO R S
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.

References
A H E R N, K . (2000) ‘Something is Wrong with My Child: A Phenomenological
Account of a Search for a Diagnosis’, Early Education and Development 11: 187–200.
A M E R I C A N AC A D E M Y O F P E D I AT R I C S , C O M M I T T E E O N C H I L D R E N W I T H
D I S A B I L I T I E S (2001a) ‘The Pediatrician’s Role in the Diagnosis and Management of
Autistic Spectrum Disorder in Children’, Pediatrics 107: 1221–6.
A M E R I C A N AC A D E M Y O F P E D I AT R I C S , C O M M I T T E E O N C H I L D R E N W I T H
D I S A B I L I T I E S (2001b) ‘Developmental Surveillance and Screening of Infants and
Young Children’, Pediatrics 108: 192–6.
449

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

AU T I S M 10(5)
A M E R I C A N P S Y C H I AT R I C A S S O C I AT I O N (2000) Diagnostic and Statistical Manual of Mental
Disorders, 4th edn text rev. (DSM-IV-TR). Washington, DC: APA.
B R I S T O L - P OW E R , M . M . & S P I N E L L A , G . (1999) ‘Research on Screening and
Diagnosis in Autism: A Work in Progress’, Journal of Autism and Developmental Disorders
29: 435–8.
F I L I P E K , P. A . , AC C A R D O , P. J . , A S H WA L , S . , B A R A N E K , G . T. , C O O K , E . H . ,
DAW S O N , G . , G O R D O N , B . , G R AV E L , J . S . , J O H N S O N , C . P. , K A L L E N , R . J . , L E V Y,
S . E . , M I N S H E W, N . J . , O Z O N O F F , S . , P R I Z A N T, B . M . , R A P I N , I . , RO G E R S , S . J . ,
S T O N E , W. L . , T E P L I N , S . W. , T U C H M A N , R . F . & VO L K M A R , F . R . (2000) ‘Practice
Parameter: Screening and Diagnosis of Autism: Report of the Quality Standards
Subcommittee of the American Academy of Neurology and the Child Neurology
Society’, Neurology 55: 468–79.
F I T Z PAT R I C K , R . (1997) ‘Patient Satisfaction’, in A . B AU M , S . N E W M A N ,
J . W E I N M A N , R . W E S T & C . M C M A N U S (eds) Cambridge Handbook of Psychology, Health
and Medicine. Cambridge: Cambridge University Press.
G I L L B E R G , C . & W I N G , L . (1999) ‘Autism: Not an Extremely Rare Disorder’, Acta
Psychiatrica Scandinavica 99: 399–406.
G O D DA R D , J . A . , L E H R , R . & L A PA DAT, J . C . (2000) ‘Parents of Children with
Disabilities: Telling a Different Story’, Canadian Journal of Counselling 34: 273–89.
G O I N , R . P. & M Y E R S , B . J . (2004) ‘Characteristics of Infantile Autism: Moving
Toward Earlier Detection’, Focus on Autism and Other Developmental Disabilities 19: 5–12.
G O S L I N G , S . D . , VA Z I R E , S . , S R I VA S TAVA , S . & J O H N , O . (2004) ‘Should We Trust
Web-Based Studies? A Comparative Analysis of Six Preconceptions About Internet
Questionnaires’, American Psychologist 59: 93–104.
G R AY, D . E . (1995) ‘Lay Conceptions of Autism: Parents’ Explanatory Models’, Medical
Anthropology 16: 99–118.
H E N S E L , E . (2001) ‘Is Satisfaction a Valid Concept in the Assessment of Quality of
Life of People with Intellectual Disabilities? A Review of the Literature’, Journal of
Applied Research in Intellectual Disabilities 14: 311–26.
H OW L I N , P. & A S G H A R I A N , A . (1999) ‘The Diagnosis of Autism and Asperger
Syndrome: Findings from a Survey of 770 Families’, Developmental Medicine and Child
Neurology 41: 834–9.
H OW L I N , P. & M O O R E , A . (1997) ‘Diagnosis in Autism: A Survey of over 1200
Patients in the UK’, Autism 1 (2): 135–62.
H Y M A N , S . L . , RO D I E R , P. M . & DAV I D S O N , P. (2001) ‘Pervasive Developmental
Disorders in Young Children’, Journal of the American Medical Association 285: 3093–9.
Q U I N E , L . & PA H L , J . (1987) ‘First Diagnosis of Severe Handicap: A Study of
Parents’ Reactions’, Developmental Medicine and Child Neurology 29: 232–42.
S C H A L L , C . (2000) ‘Family Perspectives on Raising a Child with Autism’, Journal of
Child and Family Studies 9: 409–23.
S H A H , K . (2001) ‘Research in Brief: What Do Medical Students Know About
Autism?’, Autism 15: 127–33.
S I C E S , L . , F E U D T N E R , C . , M C L AU G H L I N , J . , D RO TA R , D . & W I L L I A M S , M . (2003)
‘How Do Primary Care Physicians Identify Young Children with Developmental
Delays? A National Survey’, Journal of Developmental and Behavioral Pediatrics 24: 409–17.
S I E G E L , B . , P L I N E R , C . , E S C H L E R , J . & E L L I O T T, G . R . (1988) ‘How Children with
Autism Are Diagnosed: Difficulties in Identification of Children with Multiple
Developmental Delays’, Journal of Developmental and Behavioral Pediatrics 9: 199–204.

450

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015

 G O I N - KO C H E L E T A L . : H OW M A N Y D O C TO R S
S M I T H , B. , C H U N G, M . C. & VO S TA N I S , P. (1994) ‘The Path to Care in Autism: Is It
Better Now?’, Journal of Autism and Developmental Disorders 24: 551–64.
S T E P H E N S O N , E . , M C K AY, C . & C H E S S O N , R . (1991) ‘The Identification and
Treatment of Motor/Learning Difficulties: Parents’ Perceptions and the Role of the
Therapist’, Child: Care, Health, and Development 17: 91–113.
W I N G , L . (1993) ‘The Definition and Prevalence of Autism: A Review’, European Child
and Adolescent Psychiatry 2: 61–74.
W I N G , L . & P O T T E R , D . (2002) ‘The Epidemiology of Autistic Spectrum Disorders:
Is the Prevalence Rising?’, Mental Retardation and Developmental Disabilities Research Reviews 8:
151–61.
YO U N G , R . & B R E W E R , N . (2002) ‘Conceptual Issues in the Classification and
Assessment of Autistic Disorder’, in L . M . G L I D D E N (ed.) International Review of Research
in Mental Retardation, vol. 25, pp. 107–34. San Diego, CA: Academic.

451

Downloaded from aut.sagepub.com at Yale University Library on May 18, 2015