Faith
and I have been kindred spirits ever since I began nannying her seven years
ago. We, like most kids like to go to the mall, are suckers for a good selfie,
and often chat about life.
However, not everything with Faith is like a typical
child. For instance, when we would want to go to the mall, she would often
complain that it is "too noisy". Or when we were at the mall trying
on clothes, she would say that her clothes are "too scratchy". And
instead of going out in the community, she would prefer to play at home with
her same dolls, like we did almost every day after school. Faith's insistence on
sameness and odd requests, as I saw it, was just what made Faith, Faith, and
didn't raise any red flags for me.
However, my perspective on Faith's cravings for sameness
and some of her apparently odd behaviours finally seemed to all make sense when
she received an
Autism Spectrum Disorder (ASD) diagnosis at the age of eleven. As a psychology student,
I wondered why Faith received her diagnosis at the age of eleven
when the typical age for an ASD diagnosis is four ("What
Is Autism"). I was baffled why Faith received her diagnosis so late when
she had a psychology student as her nanny, involved parents and teachers, and
yearly doctor appointments. That was until I turned to academic literature and
found out girls are often at a higher risk for being left undiagnosed,
misdiagnosed, or diagnosed later and much less frequently than boys with ASD (Knutsen,
Crossman, Perrin, Shui, & Kuhlthau, 2018). Currently, ASD affects one out of
every 66 children in Canada. Males are four times
more likely to receive an ASD diagnosis, despite expert's belief that the
actual prevalence of ASD may be lower than popular approximations ("What Is Autism"; Knutsen,
Crossman, Perrin, Shui, & Kuhlthau, 2018).
So, why should we care?
Girls being underdiagnosed and diagnosed later isn't just a problem for Faith, but would help girls who are going undiagnosed and not receiving resources and support they need. For instance, if we look back at Faith's
complaints regarding her clothes being "too scratchy" for her, had
she been diagnosed earlier, she would be more likely to receive clinical
services to help teach her ways to overcome the feelings of scratchiness of her
clothes. Hence, if girls are going undiagnosed, then they are living without
access to resources and available clinical interventions that are linked to
impacting their quality of life.
There is no one definite reason as to why girls are being
left unseen; however, one going theory is that girl's symptoms and behavioural
presentation of ASD are different than boys (Hull, Mandy, & Petrides, 2016).
For instance, to receive an ASD diagnosis,
an individual must display behavioural deficits in their:
- social communication
- restricted and repetitive behaviours and interests (RRBIs) ("Diagnostic Criteria", 2019)
But first, what are RRBIs?
("Diagnostic
Criteria", 2019)
RRBIs are behavioural symptoms that appear different in
individuals but are clustered into four main diagnostic categories (i.e. the
categories doctors use to diagnosis individuals with ASD). To best understand
the different types of RRBIs that kids and adults with ASD present, I will be
using Faith's RRBIs as an example.
- Stereotyped Repetitive Motor Movements or Speech
This category is
utilized to describe behaviour that is overly patterned and repetitive, such as
saying the same line from a movie over and over, or playing with your dolls the exact same way
every time. An example of this for Faith is when she would play with all her
toys, she would meticulously line them all up during play and do this all throughout
her play with them.
- Insistence on Sameness and Inflexible Routines
Insistence on sameness is
generally categorized as a need for wanting to maintain rigid schedules and
feeling distressed when changes are made to the routine. For example, Faith
would prefer to perform the same afterschool routine every day, and changes to
her routine would be distressing.
- Highly Restricted or Fixated Interests
Remember for all kids these
are different but are related to the individual's specific highly focused rigid
interest. Faith has a fixated interest in dolls, as she only wants to talk
about her toys and is not overly interested in anything else.
- Increased or Decreased Response to Sensory Input
This category means that
the individual is highly responsive or unresponsive to sensory input, such as
smells, hearing or touch. For example, when Faith would say her clothes are
"too scratchy", that is her way of saying that she is more sensitive to her clothes than what someone typically without ASD would experience.
So, what did the literature review find?
McFayden and colleagues examined multiple research articles and found that on the whole, prior
research has actually demonstrated mixed results for the presentation of RRBIs
in females relative to males. You may be thinking, "hmmm, this isn't really helpful". But in
reality, mixed results are an indication that further research needs to be
conducted. Moreover, these mixed findings may predict and represent how complex
it is to measure these RRBIs. For instance, one study in their review found, in
a large sample of youth, that males and females demonstrated differences in the
frequency and severity of certain RRBIs. This study found that boys expressed
more stereotyped and restricted interests, yet, girls displayed increased behaviours
related to insistence on sameness. These findings are fascinating in that they
may predict that girls and boys show differences in their RRBIs. These predictions may link to why girls' RRBIs are not being recognized as easily. In spite of these
potentially promising findings, other studies in their report observed no
significant sex differences in young children in terms of RRBIs, demonstrating
the need for more comprehensive studies in this growing research topic. One
explanation that McFayden and colleagues offered for the inconclusiveness of
their analysis was the effectiveness of the diagnostic tools. utilized in
practice. They theorized that these tools may be linked to not being sensitive enough to assess a female's RRBIs
comprehensively.
Nevertheless, I am optimistic that the increased focus on
differences in the behavioural presentation of ASD in the sexes is one positive step forward. These studies have the potential to help learn more about why girls are being
underrepresented in diagnoses. By shining a light on the different behavioural
presentations of ASD, girls like Faith will hopefully be diagnosed sooner and
get the resources they need. Because in the end, ASD is linked to being variable between the sexes.
Interested in reading the articles yourself, look here!
Diagnostic
Criteria. (2019, August 27). Retrieved from
https://www.cdc.gov/ncbddd/autism/hcp-dsm.html.
Hull,
L., Mandy, W., & Petrides, K. (2016). Behavioural and cognitive sex/gender
differences in autism spectrum condition and typically developing males and
females. Autism, 21(6), 706–727. doi:
10.1177/1362361316669087
Knutsen,
J., Crossman, M., Perrin, J., Shui, A., & Kuhlthau, K. (2018). Sex
differences in restricted repetitive behaviors and interests in children with
autism spectrum disorder: An Autism Treatment Network study. Autism, 23(4),
858–868. doi: 10.1177/1362361318786490
Mcfayden,
T. C., Antezana, L., Albright, J., Muskett, A., & Scarpa, A. (2019). Sex
Differences in an Autism Spectrum Disorder Diagnosis: Are Restricted Repetitive
Behaviors and Interests the Key? Review
Journal of Autism and Developmental Disorders. doi:
10.1007/s40489-019-00183-w
What
Is Autism. (n.d.). Retrieved from
https://www.autismspeaks.ca/about-autism/what-is-autism/.
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