Editor’s Note: On 11 March, David Skuse and William Mandy presented evidence to support the notion that the tools available for diagnosing girls with autism show an inherent gender bias with Sfari.org. Skuse is professor of behavioral and brain sciences at University College London, and Mandy, his colleague and frequent collaborator, is senior lecturer of clinical psychology.
The complete replay of the one hour webinar is available here on their website or you can read Tania Marshall’s excellent summary below.
Autism Daily Newscast would like to thank Tania Marshall for taking the time to summarize the webinar for our readers and to Sfari.org (and the presenters) for allowing us to share it with you.
By Tania. A Marshall, M.Sc. (App. Psych), ASsoc. MAPS
Thank you to Sfari.org and female Autism researcher and experts David Skuse and Will Mandy for presenting a fascinating webinar discussing the gender bias.
Part One by Dr. David Skuse
- Studies are not recruiting a representative sample of females with Autism and therefore are making spurious conclusions.
- The under identification of females with Autism Spectrum Condition (ASC) with average IQ
- A South Korea Study screened approximately 55,000 school age children and found that the overall prevalence rate was 2.5:1 for male to female.
- A National Health Statistics Report (2013) found that changes in the prevalence of parent reported Autism Spectrum in school-aged children found that there was an 80% increase in the identification of school-age boys with ASC in the 5 year period as opposed to only a 43% increase in identification of school-age girls.
- By 2013, approximately 1 in 30 boys in the United States of America had been given a diagnosis of Autism Spectrum Conditions and ONLY 1 in 140 girls had been given a diagnosis of Autism Spectrum Conditions and this is most likely an underestimate. School-ages children (mostly boys) were largely responsible for this increased prevalence. Largest increase is between 14 and 17 years
3. Identifying, ascertaining and assessing teenage females with Autism Spectrum Conditions if particularly challenging and problematic. Why is this?
4. Compensation: Females from preschool onwards are much more aware to social behaviours and norms Girls are less able to identify due to their superficial social skills, fewer social communication issues, less stereotyped behaviours and/or unusual motor behaviours
5. Co-existing Conditions: The majority of females internalize their problems with depression, eating disorder, depression and a lack of “conduct” or behaviour problems and less ADHD in school, but behaviours are often seen at home. Boys are often picked up earlier due to their disruptive behaviours at school.
6. Biased recording of behaviours, symptom profiling, using standard instruments and tools. Autism has been defined as a male stereotype. Girls have less repetitive and stereotyped behaviours and less motor behaviours.
- If Autism is defined by the male autism stereotype, we will not find the girls. The definition of Autism is based upon the male stereotype and there is biased identification
Examples from the Interests and Behaviors section of the ADI-R
- Is she unusually interested in things like metal objects, lights, street signs, or toilets? No, she is obsessed with Justin Bieber!
- Does she play with the whole toy or seem more interested in part of the toy (e.g., spinning the wheels of a car or opening and shutting the door? No, sheis obsessed with her doll’s hair
- Does she have anything to which she is particularly attached, such as a pieve of pipe, a clothes peg or a stone? No, but she does have a collection of 2000 soft toys which are all pink, makeup collections, stationary items (my observations are erasers, pens, pencils, journals)
A population survey of gender differences in Autism traits which was a whole population epidemiological survey of autistic traits called the Avon Longitudinal Study of Parents and Children (ALSPAC), Bristol, UK. All participants were screened with the Social Communication Disorders Checklist (SCDC). Results showed that there were not dramatic differences by gender in parent’s answers on the questions. The results showed a 1.9:1 ratio for boys to girls.
Can females with high verbal IQ compensate for their ASC traits? Yes, females may compensate to some degree.
Females are at high risks of developing co-existing psychiatric disorders in response to social adjustment difficulties in later life.
In secondary school, females often become alienated, depressed and/or suicidal. They may become obsessed with people (to the point of stalking) or self-harm. Obsessions with people are common and can be towards professionals (doctors, psychologists, a best friend) with use of the Internet used to stalk the professionals, their families or their webpages.
The definition of ASC is based on the “male” stereotype. Current diagnostic criteria and the way it is implemented in research and clinics and assessment tools are biased against females and a large proportion of girls are missed in assessment or not included in the research.
We need to develop a better understanding of the ASC female phenotype which is founded on empirical and scientific information.
Ascertaining and assessment of girls with and ASC in the teenage years if particularly problematic.
Part Two by Dr. Will Mandy continues here
We need to understand the female Autistic phenotype
Current ASC assessment processes are biased against females
A disproportionate amount of girl are underdiagnosed and/or misdiagnosed and incorrectly excluded from research studies
The current DSM5 on page 57 now states ”girls without intellectual impairment or language delay may go unrecognized, perhaps because of subtler manifestation of social and communication difficulties”
The key task is to develop a better understanding of the autistic female phenotype founded on empirical and scientific investigation. So, what does current research, clinical experience, anecdotes, a network of collaborations with professionals and narratives by females with Autism themselves say?
The Autism Female Phenotype and distinctive tendencies, patterns and trends (some males have traits of the female type and vice versa).
- Females with ASC are more socially motivated than males with ASC, more typical and gender stereotyped interests (Hiller et. al, 2014). Females show greater interest in people and initiate friendships more.
- Female obsessions or focused interests include: fashion, people (peers or celebrities or professionals), Barbies, hair, animals, Manga and Anime
- More vulnerable to internalizing disorders and are prone to Eating disorders like Anorexia Nervosa, anxiety, depression and less likely to have conduct issues outside the home (Mandy et. al, 2012, Mandy & Tchanturia, in press)
- Social difficulties are misattributed to shyness or social anxiety
- Greater ability and capacity to “camouflage” and/or hide their autistic tendencies (Lai et. al, 2011)
- Gender differences play out or appear across the lifespan, in a developmental context. The greatest risk in gender differences across the lifespan is the issue of females; the greater female risk of missed diagnosis in the young, in pre-schoolers, in adolescence and into adulthood.
- Friendships: Girls are often ignored by others rather than rejected
- Female autistic difficulties are underestimated in school
- A much greater risk for anxiety and depression in primary school and then eating disorders in adolescence and sexual exploitation
- Camouflage: the “masking” of ASC behaviours in social situations and/or the performance of behaviours to compensate for difficulties associated with ASC
- Masking: Can be conscious (deciding to suppress stimming behaviours in public as they attract negative attention (Mandy & Tchanturia, 2015) or automatic (“doing social mimicry against whomever I’m with. I guess it’s like a cloaking device…I had no idea I was doing it until I as diagnosed”) (Bargiela & Mandy, in press)
- Acquisition of new skills and capacities to compensate for autistic difficulties and can be conscious (copying popular peers, dress, gestures, talk and practice it over and over at home; Mandy & Tchanturia, 2015) and unconscious (implicit learning from social experience; “it used to take me weeks to figure out what I had done wrong, but now I know pretty much immediately” HM, 15 years old)
What processes underpin camouflage? What drives the capacity to drive and adapt?
- Social Motivation
- Socially focused special interests; for example, psychology, anthropology, Jane Austen novels to crack the “social code”, to develop strategies to function socially
- Socialization experiences and pressures; the social pressures and expectations placed on women as opposed to men
- Executive control: the ability to inhibit, shift and generate plans
- Better social imitation and awareness
- Better Capacity for reflection
- Higher intelligence quotient and using intelligence to camouflage
So is Camouflaging a friend or foe? Both
The Pros include: allow people to function better in the workplace, in the social context, can open up a social world of friendships and can be a form of personal development/self-help
The Cons include: Exhaustion, loss of identity or identity confusion, underestimation of needs, missed and mis-diagnosis
At what age does female compensation start?
It begins in early childhood and breaking down in early adolescence, with adolescent talk and chit-chat being very exhausting, boring or uninteresting. Young girls have to learn from a very young age that you have to be nice, sweet, hug your relatives, act normal, develop a face you can put on and often acting convincingly so, which then makes it so much harder to get a diagnosis, leading to the theory that girls don’t get Autism or get is much less than boys.
Q & A Session with David Skuse and Will Mandy continues here
Q1: What does all this mean in the context of early intervention?
A1: Information from at-risk siblings revealed if assessment is done skilfully it can be picked up early in females. No evidence of intervention for females. The focus is on co-existing conditions or disorders. It is imperative to screen adolescents with anxiety, depression, self harm or eating disorder for an Autsim Spectrum Condition.
Q2: If someone is able to camouflage and there functioning better, what does this mean in terms of intervention and getting better, can this be seen as getting better?
A2: People often find their own effective ways and strategies of handling difficulties. We need to be aware of the consequences (i.e. lying down in the foetal position after a demanding day pom arriving home). Many adolescents strive to be model students at school and all hell breaks loose at home. Parents are concerned and mental health, blame the parents because they are not causing difficulties at school; which them leads to family therapy and parenting programs for the parents. This is sometimes seen in primary or elementary school.
Q3: Is there a higher percentage of Gender Identity issues in females with Autism?
A3: There is small growing literature on gender identity issues in females with ASC, but we are not aware of how common the wish to change gender is.
Q4: In the parent reported study you mentioned they weren’t formally diagnosed?
A4: The Korean study ascertained cases that had not been diagnosed in the general population. A small proportion of those in the general population had been ascertained as being autistic. A lot of kids were picked up as school aged children, particularly girls who had not been picked up earlier as in clinically diagnosed. In the Bristol one, we screened at 8 and by mid-adolescence virtually everyone who had a diagnosis at that time had been picked up as having a high score in our survey and of course there were lots of children on our survey, the vast majority, almost all of them up with them, those who scored as high on the Social Communication Traits of an Autistic type may well have had secondary psychiatric problems during adolescence but those data are still being analysed.
Q5: Are there any resources in particular for supporting suspected or maybe undiagnosed girls, teens, women for females, that are suspecting that they themselves or someone else
A5: We are not aware of anything here in the UK. We have similar problems in the UK are almost certainly not being picked up and even if they are, the resources to help them are very limited indeed under the National Health Service (NAS). There is enormous popular literature on being a female with ASC. It is worth checking out the work of Tony Attwood on this topic and Tania Marshall and people like them. We are at the stage of interesting, rich and powerful descriptions of the female phenotype but now we need to get a proper evidence base that reflects scientific testing of all these ideas coming out in the literature and to my knowledge those studies haven’t been done yet.
It is wonderful to see clinical anecdotal and qualitative evidence and evidence-based research merge. Thank you to Sfari, Greg Boustead, Dr. David Skuse and Dr. Will Mandy.
About Tania. A Marshall
For more information on female Autism, please visit www.taniamarshall.com