Aula 2 - Material - How Many Doctors Does It Take To Make An Autism Spectrum Diagnosis
Aula 2 - Material - How Many Doctors Does It Take To Make An Autism Spectrum Diagnosis
Aula 2 - Material - How Many Doctors Does It Take To Make An Autism Spectrum Diagnosis
spectrum diagnosis?
V I R G I N I A H . M AC K I N TO S H Virginia
Commonwealth University, Richmond, USA
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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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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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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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
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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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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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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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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
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