Girls are different: Expanding our understanding of Autism.

In the United States, one out of every 54 children, is suspected of being autistic (1). This rate has increased each time that the CDC performs studies to explore the rate. One of the reasons is our increased understanding of autism and how we define autism. Our ability to detect and label early signs of autism is improving and this allows for early intervention strategies to be employed during key developmental growth time-windows.

Rates of autism vary around the world, and this may be a factor of access to resources, parental feelings about diagnostic labels, and growth in the prevalence of autism in general. Males outnumber females at a ratio of 4.5:1. (6)  In the past 10 years there has been a renewed exploration of girls and autism – to see why autism is less prevalence among females. We are discovering that our diagnostic criteria and approach to girls may mean that many girls have been missed. This has significant impact. Girls do not get access to early intervention which would benefit them. Additionally, they may be labelled as having other disorders that are an element of their autistic traits, rather than a diagnosis on their own. (6)  

How is autism in girls missed?

When researchers explore clinicians and school records of autistic girls, it seems that they were missed because they ‘fly under the radar” (8). One reason is that girls need to be bimodal- diagnosed – early and late (9) because of preferential diagnosis towards boys. Practitioners have been using indications of social isolation as a method to identify ASD (Autism Spectrum Disorder) and girls simply do not play alone as much as boys (9).

This inability to see autism, and label it as such, seems to happen at all the stages that typically identify a child as being autistic.  These stages include when a)  their parent thinks something is different and of concern with their own child, b) if teachers or another significant adult in the child’s life has concerns or has suspicions that this child is different from other kids, c) if the family doctor believes that this child’s agrees with the suspicions of those adults, and that then, d) a  psychologist observes and conducts appraisals that might be decisive that this girl child is different from other children and that autism may be the cause of those differences (8) .

In describing how it is that girls look different and get missed (7) , Carpenter and his colleagues write, “Many autistic girls have a desire to fit in with their peers. It appears that, to a greater extent than most autistic boys, many girls use protective and compensatory factors to give the appearance of social conformity and integration with their peer group. They may use observational learning to interpret and imitate facial expressions, create scripts for social interaction and apply rules by rote to social-emotional situations and friendships”. (7)

Girls with autism can use compensatory behaviours such as staying in close proximity to pears, weaving in and out of activities, which appear to mask their social challenges (9). Girls can even learn to “linguistically camouflage” using “Um” and “Uh” appropriately to create pauses in conversations (10). We call these compensatory behaviours camouflaging. It includes the skills of Blending and Masking (11).

It appears that girls are flying under the diagnostic radar in terms of being labelled autistic. It’s important to understand that when autistic girls act in a manner that looks normal, it doesn’t mean that they are typical. It is exhausting to mask. But girls do it because they seem to want friendships (11, 12). And there are consequences to this.

Firstly, girls are being diagnosed in a manner that Professor Francesca Happé , from Kings College in London, describes as diagnostic over-shadowing. In this process by which these girls are brought to the attention of psychologists struggling with other problems, or an educational or mental health nature. Happé comments, “Autistic girls seem more likely to conceal and internalise difficulties. Over time this imposes a detrimental psychological burden, making autistic girls vulnerable to emotional difficulties and mental health disorders such as anxiety, self-harm, depressive, personality and eating diseases. There are a growing indications that autism may be an underlying case of a significant number of undiagnosed girls experiencing those difficulties”(7).

From my personal perspective I meet teen girls that come for help, presenting with learning profiles such as dyspraxia, and anxiety together with communication challenges, or with ADHD, depression and signs of OCD, that are quite possibly autistic. Autism is the core component of their experience and these other challenges, are manifestations of living with autism and masking. Identifying that autism is part of the profile is a mental health, and learning therapy, game-changer.

We need to support autistic girls. Whilst they may look like they can manage friendships, and their cleverness to blend may distract from an autism diagnosis, research indicates that they also have trouble within those friendships. When compared to typical girls, autistic girls encounter more social and communication challenges and can find friendships much more difficult and stressful to manage than their neurotypical peers (12,13).

These problems include troubles with bullying, difficulties with conflict in friendships, understanding flexibility in friendships, understanding who they are versus playing personas, and understanding social rules (12,13). Indeed, it seems that whilst these girls are doing really well, we need to help them do better.

For too long girls’ abilities to fit in may have dismissed their need for support for their autism. Just because you can hide it, doesn’t mean it doesn’t exist. These autistic girls are the potential poster children of accomplishment, and we need to support them as such, not wait until they are overwhelmed and need help because they present to psychologists with another mental problem.

******************************

About the author: Angela Watkins is a counsellor and psychologist working our of the RED DOOR Counselling practice in Hong Kong. In addition to her work with teens dealing with issues such as depression, learning styles, anxiety and perception of self, Angela is SEN educator working with teens with a variety of Special Educational Needs. Angela is the proud mum of Alex – an autistic teen girl.

References and Resources

  1. Australian Bureau of Statistics survey of Disability, Aging and Careers (2015)
  2. US CDC figures
  3. US census data 2019
  4. National Autistic Society UK
  5. Epidemiology and Research Committee, Child Assessment Service, Department of Health, Hong Kong. https://www.dhcas.gov.hk/file/caser/CASER3.pdf
  6. Naguy, A; and Alamiri, B (2018). Girls and Autism – Any sex-based peculiarities? The Journal of Nervous and Mental Disease. Vol 206(7) page 579.
  7. Carpenter, B; Happé, F, and Egerton, J. (2019) Girls and Autism: Educational, Family and Personal Perspectives. Routledge. Quotation from Chapter 1: Where are all the autistic girls?
  8. Happé, F. (2019). What does research tell us about girls on the autism spectrum. Chapter 2 of Carpenter, B; Happé, F, and  Egerton, J. (2019) Girls and Autism: Educational, Family and Personal Perspectives. Routledge.
  9. Dean, M; Harwood, R; and Karsari, C. (2016). The art of camouflage: Gender differences in the social behaviours of girls and boys with autism spectrum disorder. Autism. Vol 21(6), 678-689.
  10. Parish-Morris, J; Liberman, MY; Cieri, C; Herrington, JD; Yerys, BE; Bateman, L; Donaher, J; Ferguson, E; Pandey, J; Schultz, RT. (2017) Linguistic camouflage in girls with autism spectrum disorder. Molecular Autism. Vol 8(48).
  11. Ryan, C; Coughlan, M; Maher, J; Vicario, P; and Garvey (2020). Perceptions of friendships among girls with autism spectrum disorders. The European Journal of Special Needs Education. April.
  12. Cook, A; Ogden, J; and Winstone, N. (2018). Friendship motivations, challenges and the role of masking for girls with autism in contrasting school settings. European Journal of Special Needs Education. Volume 33(3), page 302-315.
  13. Sedgewick, F; Hill, V; and Pellicano, E (2018). It’s different for girls: Gender differences in the friendships and conflicts of autistic and neurotypical adolescents. Autism. Vol 23(5).

We need to talk about Mental Health

We need to destigmatize talking and being ashamed about mental health. Especially in times of heightened anxiety such as the global pandemic is creating.

September 10th is observed as the day to raise awareness of Suicide and Suicide Prevention around the world. Whilst people attempt suicide for a variety of reasons including loneliness, depression, physical illness, loss of self-worth, shame, bullying, and hopelessness, compromised mental health is a common factor. In Hong Kong we lose 800-1000 persons a year from suicide. Suicide is preventable death.

We need to help ourselves, our families and our friends better cope in moments of compromised mental health.

In order to help ourselves and others de stigmatize mental health we need to (1) evolve our understanding of mental health and (2) learn to talk to others about their mental health in a helpful, rather than unhelpful, way.

Understanding mental health.

A helpful way to understand mental health is to consider it, as you would physical health, as a continuum.

On one end of the continuum is good mental health and at the other end, very poor mental health. On any given day we may find ourselves moving along this continuum, just as our physical health is sometimes better, and sometimes worse on any given day.

Sometimes we have a chronic illness which lasts weeks, months, years such as a bad flu, diabetes, asthma, and this can make it harder for us to experience good health. We may need medications, undertake a change in lifestyle and seek out expert help to assist movement along the continuum towards better health. At no time do we expect that we will be completely recovered the next day, or do we expect this of others.

Similarly, mental health conditions can affect us for a day, a week, or for chronically long periods. Again, we may require additional help, medications, and a change in lifestyle to move towards the healthier end of the spectrum. Unlike physical health, people sometimes misunderstand that recovery takes time, and is certainly not just a matter of “getting over it”.

Mental health is a continuum.

Talking to someone about their mental health.

So how can we talk to people who might be experiencing mental health issues, or an episode of poor mental health?

Remember you are dealing with a GLACIER of an issue. What you see is not all of the issue. You are just seeing the part of an issue that is above the water. In order to reinforce this message, I have highlighted my “thoughts to remember when you talk to someone about their mental health” within the framework of the word Glacier.

Thoughts to remember.

G – Do no grandstand. Whilst everyone experiences anxiety and depression, we need to avoid depleting someone’s experience by comparing it our own challenges. It is sometimes enticing to share your experience, especially if you think you feel worse than they do. For example, teens often compare each other’s experience of anxiety, each teen detailing, in turn, how their experience of anxiety was worse than the person who spoke before them. This grandstanding is unhelpful for two reasons. Firstly, rather than helping to connect with your friend, you may be dismissing their experience as inconsequential. Secondly, it isn’t a competition where only the person who has the worst experience is entitled to have their feelings acknowledged or be deemed worthy access to help. We all need help and to be heard.

L – Listen. Real listening is an important skill to learn. When we listen properly, rather than focusing on continuing a dialogue we need to take the time to demonstrate that what has been said, has been heard. Reflecting back to the person some of the words that they said, or a summary of it, and asking for clarification, is helpful.  For example, what follows is a conversation between Laura and Sam. Sam is demonstrating reflective listening skills.

Laura: I have been feeling really anxious about the pandemic

Sam: so you feel anxious?

Laura: Yeah, the numbers keep going up, I’m worried if we should be in the office

Sam: So you feel anxious about keeping safe from the virus?

Laura: Yes, every day my stomach is a bundle of knots

Sam: Sounds like you feel pretty worried.

Try listening like this instead of jumping in with our opinion or even a solution. See how it changes your conversations and connections with people.

A – within the listening skill set is the simple act of ACKNOWLEDGEMENT. Help normalize people’s feelings but at least accepting that they are occurring, and that they are valid. In the example above Sam doesn’t give his opinion of Laura’s feelings. He simply allows them to exist and be acknowledged. The process of acknowledgement can be challenging if we believe that our college shouldn’t feel the way that they do. If you feel like this, I would ask you to consider if you can allow your colleague the respect and space to have their experience, even if you disagree with it. It may be more important for them to be heard, rather than “corrected”.

C- use the word CONSIDER rather than give advice. When we see people in distress we can rush to “solve” the issue, including providing solutions to the problem. Its is a real skill to sit with someone in their anguish and just simply experience their condition, rather than move to fix it. This is true empathy. Once you have listened and sat with someone, acknowledged their feelings, if you want to give advice you might like to frame it as a consideration rather than a recommendation. Rather than, “You really should give up drinking”, or “You really need to go to a counsellor”, or “You need to get medicated”, suggest it as something to consider. “Do you think you could consider changing your relationship to alcohol? Do you think you might consider counselling? Do you think you could consider if medication might help you”? Think of any advice as sowing seeds of trees that might start to grown on another day, not necessarily today.

I – Don’t IGNORE. Denial or ignoring a problem will NOT make it go away. Telling someone they “shouldn’t” feel the way that they do, is not a form of treatment. Telling them how you would like them to see the issue, also not helpful. Let people have their experience. Respect their experience of the world, and encourage change rather than deny or demand it.

E- ENCOURAGE people to seek help. As you would if you saw if a friend or colleague had a physical injury, ask them to consider if change could be possible and they could find a resource to help them feel better. Even top performers encourage coaches and counsellors to move from good to great.

R- REFER them to experts. There are people who are great with people in a crisis. Natural talent is not the same as training. Mental health issues are best addressed by mental health experts. These experts are trained in listening, testing, helping to build allegiance, methods of behavioural change, and usually have a network of other experts that they access when required. Like any expert a personal recommendation from another user is always helpful. In the days of Facebook, a recommendation is only one post away.

I hope this helps you to help yourself and others. If you have any questions about your own mental health, or the mental health of a friend, feel free to contact the RED DOOR team at our email. Let’s talk about mental health – our own and that of others. reception@reddoor.hk

++++++++++++++++++++++

Angela Watkins is a qualified counsellor and psychologist working with teens and adults within the RED DOOR Counseling practice in Hong Kong.

Talk to your Anxiety

You may feel that you are powerless over your anxiety. Using the following anxiety dialogue exercise may well help you learn to manage your anxiety during this time and in the future.

Talk back to your anxiety, as if it is a small child that lives inside you. Help this young child understand the risks that exist, in a realistic rather than catastrophic manner. Hold their hand whilst you explain the actions that you are going to undertake to help mitigate the risks ahead. Don’t tell dismiss their worries, by saying that worry is silly. Do not try to simply silence your anxiety. Rather, listen, and talk back. Acknowledge the fear, but explain that you do not need to let worries disable you. Reassure your internal anxious child that you will take care. Thank your anxiety for reminding you that there are threats in the world, and that there is danger, but that you have the resources and strength to face challenges.

Dialogues with your anxiety may run as waves lapping at the shore of a beach. Let the anxiety roll in and regress, as if your anxious child, and your adult self, are engaged in a dance – make it a waltz.