How many doctors does it
take to diagnose an autism spectrum disorder (ASD)? This is a question that
many parents continue to ask in response to their frustration with the
diagnostic process. For example, a survey of more than 1,200 families in the
United Kingdom found that only 8 percent of
families received a diagnosis for their children upon their first clinical
visit; 40 percent received a diagnosis by the second clinical visit; and 63
percent finally received a firm diagnosis by their third clinical visit. In
many instances, parents waited more than 5 years before a diagnosis was
confirmed.
A recent survey of parents
of school-age children with ASD across five countries (including the US) found
an average diagnosis age of 7.5 years and a consistent
concern with the timeliness of identification and frustration with the delay in
accessing services. Parents reported visiting, on average, between four and
five clinicians en route to an ASD diagnosis. Some participants responded to
our question with comments such as “too many to count.” The number 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. In effect, the more professionals a child saw during the process,
the older he or she was when finally receiving the diagnosis. Despite the fact
that the diagnostic age is decreasing, just over 40 percent of parents reported
that they were not satisfied with the diagnostic process. In fact, the more professionals
that families saw on their journey to a diagnosis, the more negatively parents
viewed the experience. Parents were more satisfied with the diagnostic process
when they saw fewer professionals to get the diagnosis and when the children
received diagnoses at younger ages.
So, what are the
implications? A late diagnosis postpones the timely implementation of
intervention services and may contribute to parental distress in coping with an
ASD. It is well established that early interventions for children with
developmental disabilities are important in increasing cognitive, linguistic,
social, and self-help skills. Assisting parents to develop effective management
techniques is also likely to avoid or minimize the potential for secondary
behavioral and emotional problems. Importantly, because more capable children
with ASD are likely to be educated in general education classrooms, delayed
recognition of their problems can result in the implementation of ineffective
or inappropriate teaching methods that fail to address the core
social-communication deficits of ASD. Delays in diagnosis and identification
also have wide implications for families. It is now accepted that autism is
most likely among the most heritable of all childhood disorders and that for
any family with a child with ASD, there is considerable risk that other
children in the family may have social, language, or other neurocognitive
problems. Family histories of autism or autistic-like behavior or having an
older sibling with autism are known risk factors. A delay in identification may
result in siblings with the ‘broader phenotype’ being overlooked and as a
result, not receive the help needed to address their problems.
Although further research
is necessary to identify what additional factors make the diagnostic experience
a negative one for so many families, it is clear that better screening and
identification practices are needed. 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 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 “out
grow” their problems. 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.
Unfortunately, many
pediatricians, clinicians, and educators take a “wait-and-watch” approach and
may not recognize the early red flags. Although no two children are alike in
terms of their development and behavior, best practice requires that a
standardized screening tool be administered at any point when concerns (red
flags) about ASD are raised by a parent or teacher or as a result of school
observations or questions about developmentally appropriate social,
communicative, and play behaviors, or where there is a family history of autism
or related disabilities. Parents should also continue to be vigilant and keep
an ongoing record of behavior that appears atypical or concerning. This
information can be very useful in any future assessments.
Recommended Resources:
Life Journey through Autism: A Parent’s Guide to Assessment
May Institute
National Autism Center
National Institute of Child Health and Human Development Autism Site
May Institute
National Autism Center
National Institute of Child Health and Human Development Autism Site
Stone, W. L. (2006). Does
my child have autism? A parent’s guide to early detection and intervention in
autism spectrum disorders. San Francisco, CA: Jossey Bass.
Wilkinson, L. A. (2010). ABest Practice Guide to Assessment and Intervention for Autism and AspergerSyndrome in Schools. London: Jessica Kingsley Publishers.
© Lee A.
Wilkinson, PhD
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