Assessing Autistic Girls

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Assessing Autistic Girls: A Common Situation

Many parents contact me to find out more about assessment for their daughters and they express concerns that professionals will not recognise masking, that they will not see any differences because their daughters are so accomplished at camouflaging autistic differences.

Parents are often used to being told that no one else sees any signs of neurodivergence, and that no one shares their concerns. Extreme self-consciousness, embarrassment, difficulty talking in front of others, are all put down to shyness and seen as appropriate behaviours. Reports of friendship difficulties are regarded as a normal part of growing up, something that many children experience. Parents’ stories of difficulties regulating emotions and losing control at home raise questions about parenting skills because other professionals do not see this behaviour. The discrepancy between what parents report and what others see, e.g., at school, in therapeutic interventions for the neuro-majority, does not always raise red flags. Parents want their child to be assessed, but they worry that they will be told that assessment shows no signs of neurodivergence, and they will be left with no answers and no guidance on how to manage difficult situations at home.

This is a very confusing time for parents. Things are hard at home, their child is very distressed after school, parents often notice increasing levels of anxiety, particularly separation and social anxiety. Tics and obsessive-compulsive behaviours sometimes become apparent at home, and many girls suffer from low mood and when they are very distressed say that things would be better if they were not around. This is so hard for parents, so upsetting, so worrying and yet when they tell teachers and other professionals many find that their concerns are not shared and often not acknowledged.

Understanding Neurodivergence

I had all of these experiences as a parent, but that was a long time ago and in a part of the country that does not have the resources that cities and wealthier parts of the country have. I think of my own experiences when parents contact me and tell me their story and their concerns. I feel so disappointed that there is still such a lack of understanding, not only of autism, but of neurodivergence in general. I question whether we can neatly box and label different types of neurodivergence. There may be a primary diagnosis, e.g., autism or attention deficit hyperactive disorder (ADHD), but the edges often blur and there is a mix of features from other forms of neurodivergence, such as dyslexia, dyscalculia. Many people self-identify as being neurodivergent without formal diagnosis, and many people might recognise features but be told that they do not reach the threshold for formal diagnosis. Does that mean they are not neurodivergent?

We all think in different ways and the concept of neurodivergence can be confusing for some people as it might not be clear what it means. Diagnostic labels, such as autism, dyslexia, adhd, are very helpful for many people as they relate to a diagnostic criteria that states what these labels mean. However, diagnosis and can be complicated, particularly in the case of girls, who often do not meet the threshold on the ADOS for a range of reasons, which is discussed below. This raises so many questions, not just for parents, young people who think that they might be neurodivergent but for clinicians, like myself, too. I think about this a lot. I am neurodivergent and this is a factor in my thinking. No one ever questioned my neuro-type when I was growing up. Admittedly, that was in the 1970s, when flares were at the forefront of people’s minds more than neurodivergence! Even as a diagnosed adult, who knows a lot about neurodivergence, my diagnosis is questioned by others at times. I keep my responses to that firmly in my head!

assessing autistic girls

People have very set ideas about what it is to have a different neurotype and I find this interesting as these ideas can be very rigid and hard to change. Many people interpret other people through their own experiences, their own knowledge, thoughts and feelings – in other words they find it hard to put themselves in other people’s shoes – which is Damian Milton’s Double Empathy Problem (https://www.autism.org.uk/advice-and-guidance/professional-practice/double-empathy) Turns out that rigid thinking, getting stuck on ideas, and difficulties seeing things from other people’s perspective happens in all neurotypes. Differences are not always as stark as many people think.

Stereotypes

We are all different in a wide range of ways, e.g., hair colour, gender, religious beliefs, ethnicity, neuro-type. However, a lack of knowledge and understanding about many differences persists and strong stereotypes continue to exist. Many parents find that no one listens to them because what they are describing does not match stereotyped ideas about what it is to be autistic. Many people have two main ideas about what it is to be autistic; one is that you are non-verbal, that you rock back and forth and flap your hands and arms, that you get very distressed and hit your head on the floor or the wall. The other stereotype is that you are an eccentric genius. Why do so many people still have these ideas? Parents are commonly told, “Your daughter makes eye contact, so she can’t be autistic” “Your daughter has friends, so she can’t be autistic” “Your daughter has an incredible imagination, so she can’t be autistic.” The stereotypes are wheeled out and parents are told that their daughter does not fit in to these boxes, therefore she is not autistic. I was told the same countless times. My child’s childhood was savaged by unmanageable environments, high levels of social anxiety, processing differences that were unrecognised and became difficulties, sensory differences that were massively exacerbated by the school environment, deteriorating mental health….. I could carry on listing for a long time. I have to say that a driving force for me in my job is to try to prevent others suffering as my child has done. I can’t change the past, but I can try to change the present, even if this is in a tiny way.

Exceptions

It is important to note that this is not always the case, there are plenty of practitioners in schools and other agencies that have a much better understanding of neurodivergence and who notice more and are much more supportive. I know and meet many wonderful practitioners and it is such a pleasure to work with them.

A wider view of autism; possible indicators to be aware of

Below are some of common indicators that a girl might be autistic that Tony Attwood and Michelle Garnett highlight (https://attwoodandgarnettevents.com/how-to-recognise-autism-in-girls/):

  • Girls may need more time to process social and emotional information. They might take slightly longer to answer in social situations, they may avoid answering questions in class and/or may avoid speaking in groups. They may “hide” in groups, and always seem to be on the outer periphery of the group.
  • Autistic girls are often ‘too quiet’ and ‘too good.’  They may be internally struggling with social confusion, sensory issues, and executive functioning problems. They may need help, but be unable to ask for it.
  • Autistic girls might have situation mutism, which refers to an involuntary and temporary loss of the ability to speak in certain situations, it is indicative of very high levels of anxiety.
  • They may show occasional difficulties with reading the body language and facial expressions of teachers and peers. They may respond inappropriately at times because it is difficult to mask and camouflage 100% of the time.
  • Autistic girls may have difficulty verbally describing her thoughts and emotions, even though their vocabulary for other topics may be superior. For example, they cannot answer a question about what they think or feel, and they use less words than expected for emotions, “It feels bad” instead of “I feel embarrassed.”
  • Many autistic girls have difficulty expressing her wants and needs.
  • They have executive function challenges, i.e., difficulties with planning, organising, prioritising, and initiating action.
  • Many autistic girls have sensory issues. For example, lights are too bright, or certain noises or odours are stressful or overwhelming.
  • They might find uncertainty extremely stressful, e.g., transitions, changes, unexpected events and experiences.
  • They may cope well in structured social experiences but appears ‘lost’ during unstructured times, such as breaks and lunch time.
  • Their parents might be concerned about their daughter’s moods, temper tantrums, depression, or school refusal, even though teachers see no evidence of this in class.

Assessment

Currently, the gold standard model of diagnosing autism is to gather information from at least three different sources, e.g., parents, young person and school, using the Autism Diagnostic Interview (ADI) or the DISCO (Diagnostic Interview for Social & Communication Disorders with parents and the ADOS (Autism Diagnostic Observation Schedule) with the child/young person. However, there are some difficulties using these tools to fill in the current medical framework to diagnose autism (https://www.cdc.gov/ncbddd/autism/hcp-dsm.html), and the ADI/DISCO and ADOS. For example:

  • Parents might not remember information that they are asked about, which means clinicians cannot score this, which might affect the outcome.
  • All assessment tools are based on the assumption that parents are neurotypical and that they will notice autistic differences. However, we know that autism is highly heritable. If parents are neurodivergent, they might have different perceptions of their child’s development and behaviours, which could affect their responses to questions and the information they share with clinicians.
  • Masking means that girls can score below the threshold on the ADOS. They often make eye contact, take turns in conversations, show interest in things the clinician says, and they do not talk excessively about topics of particular interest, and there may be no evidence of unusual hand and finger movements or sensory interests and behaviours.
  • Some clinicians are very much guided by assessment scores, e.g., if a girl scores below the threshold and so does information given by the parents, they will not give a diagnosis.
  • The ADI and the ADOS have not been updated in line with current knowledge about neurodivergence, e.g., what research highlights about female presentation.

What does this mean?

It means it is very confusing for parents. There is a lot of information online about difficulties assessing girls, which makes parents feel very worried about the process and the outcome. All assessments are tools, and they rely on the knowledge and skill of the clinicians and there are many experienced practitioners who keep up to date with research, who attend reliability trainings and who look at all available evidence not just the numbers. We cannot just look at the numbers when we assess girls that might be autistic, it is much more complex than whether the numbers add up or not and many clinicians are very aware of that.

  • Learn as much as you can about autistic girls so that you develop your knowledge and understanding and use this to inform your decisions if you are thinking about referring your child for autism assessment.
  • Don’t doubt what you are thinking, no one knows your child as well as you do.
  • Use a screen to identify possible features before your assessment, for example:

https://tonyattwood.com.au/wp-content/uploads/2022/09/M-Q_ASC-for-Web-with-Scoring.pdf

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