Dr. Alisa Lipson (biography and disclosures) Disclosure: Dr. Lipson is on the Board of Directors of a non-profit society, ACT Autism Community Training. The organization provides information and training for parents and professionals. Mitigating Potential Bias: only published trial data is presented and recommendations are consistent with current practice patterns.
What was before
We learned in the 1980’s that autism was a rare condition. We learned in the 1990’s that it was becoming increasingly recognized, especially in boys, and in the 2000’s that 1 in 100 boys and 1 in 500 girls were being diagnosed. We learned in the 2010’s that the phenotype was expanding. Current prevalence for an autism spectrum disorder (ASD) in the 6-18 age group in BC is 1 in 46.
Now in 2019, we are learning that the incidence in girls is higher than previously thought. The girls are catching up to the boys. What is that about? Turns out that the girls are better at hiding their disability, but it is there. So, we have to look harder.
Kathleen is 13. She was diagnosed with ADHD at age 8, and has benefitted from medications. Through the years, her mom, a teacher, has had consistent concerns about her volatile and unreasonable behaviour. Also, Kathleen has never had a friend. During recess at school she is with the teachers. She watches TV shows about teens and studies their behaviour. Mom has overheard her peers call her ‘weird’. At age 8 she was assessed by a psychologist as below the threshold for autism. She has additional diagnoses of sensory processing disorder and anxiety. Medication for anxiety has not helped. Over time, there has been an increasing gap between her social functioning and that of her peers.
What changed my practice
In April 2018 I heard two talks by Dr. William Mandy from University College London, UK. His message was that Autistic Spectrum Disorder (ASD) is much more frequent in girls than we thought. The expression of autism is gender specific—meaning that it is somewhat different, and more subtle in girls, though equally impairing.
I learned the following about girls on the spectrum:
- Superficial social behaviour can be relatively well preserved.
Such things as eye contact, facial expressions, and gestures can be intact. Verbal exchanges with adults, such as answering questions about home and school that MD’s may ask, can come across as typical. “Boys are interested in things and girls are interested in people,” said a parent to Dr. Mandy. Girls on the spectrum can be intensely interested in animate things, including animals and people. They can be highly aware of their social environment and may love such things as doll play and fantasy stories. The typical girl interests are pursued with autistic focus and compulsiveness, however, and thus do not rule out autism.
- Social understanding and social skills are nevertheless low.
Lacking is social understanding. The social norms of behaviour—ordinary rules of politeness and respect that peers pick up by simply being in the social world—may seem puzzling and nonsensical to girls with autism. Socially offensive remarks can be made without offensive intent, and may elicit responses from typical peers of puzzlement to rudeness, social rejection, and bullying. Social cues are often missed. Such information that is conveyed through facial expression, tone of voice, and inferential comments, as when to back off or when to approach, are not noticed or they are misunderstood. Typical is chronic misinterpretation of the social responses and intentions of others, thinking a peer is angry or aggressive when they are not, or is being friendly when they are mocking. Limited are such skills as how to make chit chat, how to invite an interaction, how to maintain one, and what behaviour to use to show interest in becoming a friend—these things can be totally beyond the skill set of girls on the spectrum. Often, behaviour at home with parents is challenging and unreasonable, frequently characterized by refusal to follow routines and do tasks not of their choosing, and screaming in frustration from minor triggers.
BUT… Such subtleties of understanding and behaviour are difficult to elicit unless specifically sought. Adult observers may not offer these important diagnostic clues, but will tell you if you ask for examples. Parents may be accustomed to the impairments and no longer recognize them as unusual. Teachers may report that ‘social/emotional learning’ is low; it is the details of the behaviour limitations that tell the true story, and these must be sought.
- Girls often camouflage their deficits.
Girls have a greater interest and capacity to both hide their autism, by masking: g. supressing stimming, or pretending they have a reason to withdraw when they do not know what to say. Or by compensation: studying and copying gestures, clothing, language, way of laughing and facial expressions of peers who seem popular, or of characters in books, on TV or YouTube. Parents often see this behaviour and can report on it.
What I recommend (Practice Tips)
- Subtle autism—often seen in girls—may be too subtle to detect in a casual interview.
I have learned to give weight to a suggestive history, even if the ‘gestalt’ of a brief interaction with a girl is typical. I get direct feedback from the school, where the atypical behaviour is often expressed over time.
- Beware when there are other diagnoses already, but clarity is not achieved.
Often unreasonable behaviour—be it constant irritability, inflexibility, bullying of siblings or parents, or refusal to comply with ordinary household routines, is diagnosed as Oppositional Defiant Disorder, a diagnosis which describes only without informing—or ADHD, anxiety, or Sensory Processing Disorder (a diagnosis not recognized by DSM). Social isolation is assumed to follow naturally. However, treatment for these disorders does not resolve issues in girls with autism. When ASD is the correct diagnosis, it is the umbrella condition which drives and modulates the other diagnoses.
- Be suspicious of possible autism when it has been ‘ruled out’ previously.
Girls on the spectrum are often recognized early as being somewhat different, and an autism assessment may have been done already which ‘rules it out’. The fact that the question was already asked is a red flag in itself. Autism testing is not perfect, and even very experienced clinicians may reach different conclusions in subtle cases at different times. The assessment is often based on a single clinical encounter in children, and if ancillary observations have not been provided to the clinician, or if the gaps between the girl and her peers are not yet evident to observers, the diagnosis may not be uncovered.
- Pay attention to these hints that ASD may be the correct diagnosis:
- A girl who never fits in socially, or has only had a few friends ever, or whose friendships, on detailed review, are not truly reciprocal and spontaneous.
- A girl who has acquired many diagnoses but there still seems to be unexplained features.
- A girl whose parents describe very unreasonable behaviour— but who do not recognize it as abnormal anymore after many years.
- A girl who takes it upon herself to study the behaviour of others so that she can learn how to behave socially and not be noticed.
- A girl who has other atypical features which may have gone unnoticed: fixated on routines, delayed echolalia, some motor and sensory habits, intense, though ordinary girl interests. Atypical behaviours and interests must also be present in addition to social impairment to make an autism diagnosis.
- Girls, however, socially incompetent, may still be interested in ‘people’. A social interest does not rule out autism.
- Even a previous negative autism assessment done when the girl was younger, though apparently ruling it out, attests to early suspicion.
Kathleen was retested and diagnosed with ASD at fourteen years of age. By then her parents were better informed and were able to report on many of the ways that Kathleen’s behaviour was atypical. The school input was critical. For her part, Kathleen was happy to have a diagnosis that recognized that she was different from others—something she already knew—and that also provided understanding and support for her in school.
- In BC, a diagnosis of ASD, for which funding to the families and schools is provided by the province, can only be made by a professional trained to administer the two specific assessment tools: the ADI-Revised (Autism Diagnostic Interview-Revised) and the ADOS-2 (Autism Diagnostic Observation Scale, Second Edition). There can be long waits for the public system. Families can choose to pay for an assessment privately. Thus the primary care physician can suspect the diagnosis, but it is either a cost to the family or a long wait to get the diagnosis established. Any primary care practitioner can refer to the publicly funded BC Autism Assessment Network (BCAAN).
- Autism is a moving target. It is well recognized that what was identified as autism in the 1980’s was only the tip of the iceberg. We are now recognizing more and more of that iceberg, where the features in the child are less obvious and intelligence is preserved. Although the diagnostic recognition is still expanding, it is vital to reserve diagnosis to those patients who show impairment, and not only fulfill diagnostic criteria, as in all DSM 5 diagnoses. Usually girls on the spectrum who are identified late, have had a childhood of challenges and frustration, and the diagnosis is a big relief.
References and Resources:
- Women & Girls with Autism, Video learning series. Autism Community Training (ACT). Updated November 2, 2018. Accessed September 24, 2019. (View)
- Edwards L. It all made sense when we found out we were autistic. BBC News. March 26, 2018. Updated March 26, 2018. Accessed September 24, 2019. (View)
- Loomes R, Hull L, Mandy WPL. What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. J Am Acad Child Adolesc Psychiatry. 2017;56(6):466-474. DOI: 10.1016/j.jaac.2017.03.013. (View with CPSBC or UBC).
- Reinhardt VP, Wetherby AM, Schatschneider C, Lord C. Examination of sex differences in a large sample of young children with autism spectrum disorder and typical development. J Autism Dev Disord. 2015;45(3):697-706. DOI: 10.1007/s10803-014-2223-6. (View)
- Young H, Oreve MJ, Speranza M. Clinical characteristics and problems diagnosing autism spectrum disorder in girls. Arch Pediatr. 2018;25(6):399-403. DOI: 10.1016/j.arcped.2018.06.008. (View with CPSBC or UBC)
- Nicholette Zeliadt. Some autism traits may show up later in girls than in boys. Spectrum. Published June 18, 2018. Accessed September 24, 2019. (View)
- Patient Referral form PHSA: view. Complex Developmental Behavioural Conditions (CDBC) and BC Autism Assessment (BCAAN) Networks, Sunny Hill Health Centre for Children (for children and youth up to their 19th birthday).
Note: each Health Authority will have a similar form.