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Autism and Females...Challenging what we thought we knew...

Updated: May 8


Let’s start with a little free association…think of the first three words that come to mind for each of the words/terms/people/places below …be honest… (there is no test).
·        ADHD
·        California
·        Cancer
·        Ghandi
·        Taylor Swift
·        Vietnam

Now, identify the one you know the most about and quickly (90 seconds) provide seven additional words…do the same with the one you feel you know least about. Be as unabashedly unbiased as possible😊
 
As you reflect, did you notice any patterns emerge? Were the first three words more general and the latter more specific? Was there an ease or difficulty at which you can produce words based on your understanding, exposure, and experience? This exercise is simply to demonstrate how our perceptions of certain people, place, conditions, etc. change based on the breadth and depth of our individual knowledge and experience.
 
Now, take a moment to consider Autism… what immediately comes to mind? If you were to create a picture in your mind what would be the first few words that come to mind? Try writing down what you know, keeping it in mind as you read.
 
As research and practice come together, we grow in our knowledge regarding a multitude of things. Sometimes we confirm our understanding of what we previously knew…other times we are challenged by new information that may expand or contradict what we initially took as definitive truths. Sometimes our perceptions become so ingrained that we have a challenging time shifting or allowing ourselves to see beyond what we know or have been taught, even in professionals. For instance, autism prevalence rates have shifted more recently to include significantly more females than originally thought (4:1 to 3:1). So why?
 
Over the past couple of decades, including the more recent five years, we are gaining knowledge of how autism may present differently in females than males, especially those that have more subtle presentations. We are also examining how the tools we use to assess autism condition may impact the efficiency and accuracy of a diagnosis. One significant factor is on considering is how these tools were developed and for whom. Many batteries have been developed using predominately male sample populations. As a result, these tools have disproportionately excluded females from being properly identified. For instance, the Autism Diagnostic Observational Schedule- 2nd Edition (ADOS-2) has been touted as the ‘gold-standard’ in Autism assessment; while it is a competent assessment for some populations; this not necessarily the case for all. If we rely solely on these tools, it can become a numbers game. Relying on a number to classify individuals alarming and inappropriate for a number of reasons. Even the authors of the ADOS correctly emphasize ... No test instrument is any better than the person using it. There is no substitute for extensive experience working with children with ASD. Relying on a "negative" ADOS to "rule out ASD" is fool-hardy and destructive. ...people who lack sufficient clinical experience are placed in the position of making diagnoses "by the numbers." -James Coplan, M.D. neurodevelopmental pediatrician. 
 
….Also important is one’s ability to distinguish between an ADOS classification and an overall diagnosis of autism. ADOS is intended to be but "one source" of information used in making a diagnosis of ASD. Because coding is made from a single observation, it does not include information about onset or early developmental history…. This means that the ADOS alone cannot be used to make complete standard diagnoses.                                                                    Wilkinson, Lee A. 2017 bestpracticeautism.com
 
We need to better educate parents, teachers, physicians, practitioners, and the community as a whole as to characteristics of Autism in females and the great deal of variability that exists across all those with the condition. No singular characteristic should be used to confirm or deny the presence of ASD. So, let’s consider our preconceptions (which may be accurate or inaccurate) and consider how autism may show up differently in females…
  • Often hyperverbal at an earl

  •  Play can be characterized by mimicking behaviors or setting up visual scenes.

  • May be controlling or inflexible in the course of play (i.e. ‘bossy’)

  • Difficulty initiating play narratives without adult support.

  • May display poor boundaries (i.e. poor physical boundaries/limited understanding of ‘stranger danger’, may be overly friendly).

  • Resistance to change (i.e., can show up in ways like rejecting a change in parents’ hairstyle or color…insistence on playing the same song or audio on the way to school)

  • Transition difficulties (i.e., poor or delayed transition at the beginning or end of school years, heightened anxiety at the end of the weekend anticipating school or transitions from school breaks, vacations, etc.)

  • May misname objects or people (i.e. poor facial memory).

  • May use accents or use alternate names for things.

  • May escape into books.

  • May engage in scripting, mimicking, and practicing of social scripts (i.e., movie lines, songs, regular patterns of peer/adult behavior)

  • May have separation anxiety and refusal to engage or acclimate to group activities.

  • May refuse to speak in certain settings despite adequate oral language skills (selective mutism)

  • May have unusual fears and/or separation fears.

  • Special interests which may be missed because they are often more ‘socially acceptable’ (i.e., animals, princesses, movie characters, individual people, etc.)

  • May be more socially motivated and therefore may work to mask their differences.

  • May exhibit a strong sense of social justice and fairness.

  • May be extremely detailed researchers on particular topics which may change across time but can be all-encompassing.

  • May be highly empathetic (maybe to a fault – assigning problems to themselves that have nothing to do with them).

  • May have strong or ‘big’ emotions.

  •  May keep it together (mask) during school, but meltdown at home.

  • May demonstrate restrictive eating patterns and are at higher risk of developing anorexia.

  • Lastly, in my practice, I have seen characteristics become more pronounced in middle/high school years. Females are often identified based on a referral for anxiety, depression, increasing social withdrawal, changes in behavior or personality, resistance to treatment interventions, and/or a general ‘failure to launch’ despite adequate skills and abilities.

 
Takeaways:
#1 Qualified practitioners are encouraged to improve efforts to educate others on autism in females (i.e., psychologists, educators, medical professionals, service providers, parents, etc.).
#2 Be mindful of the gender variances that exist in individual on the autism spectrum so that appropriate referrals can be made.
#3 Acknowledge biases. Use caution regarding absolutes… They are way too social to be autistic…They don’t look autistic…It’s just social anxiety…They don’t X (i.e. flap, spin, or otherwise have noticeable stims).
#4 Be mindful of the limitations of assessments used to identify autism (and any other condition).
#5 Be selective when choosing or referring to a specific evaluator…there are differences in specialties as well as competency in all professions. (i.e., Not all physicians are qualified to treat cancer…Not all teachers not qualified to teach math...not all mechanics are not qualified to rebuild an engine…etc.). Don’t be afraid to ask questions.
 

Dr. Lake is an Licensed Psychoeducational Specialist and School Psychologist. She is in private practice in Mount Pleasant, South Carolina.

Contact Information: Renee Lake, Ph.D. - lake@carolinaanchor.com

Carolina Anchor Psychological & Educational Consulting

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