Girls on the Spectrum
We have included this section on female presentation as the way girls or women can present as autistic can be different from males and the ratio of diagnosis reflects this. In 1993 a study of Asperger syndrome in mainstream schools in Sweden, Ehlers and Gillberg found a boy to girl ratio of 4:1 and in 2017, a study by Loomes and other researchers analysed existing prevalence studies and found that the male-to-female ratio was nearer 3:1. Many professionals now believe the ration is nearer to 1:2.
Why the difference in male/female ratio?
The difference between male and female diagnostic ratios is mainly due to the diagnostic criteria, not taking into account how females present. Instead, it focuses more on the recognised way males present, especially in the ADOS2. This can lead to females either not receiving an accurate diagnosis or no diagnosis at all.
There are also some recognised differences in the presentation of their ASC characteristics:
- Girls are much better as masking – mimicking what those around them are doing to try and fit in
- Girls are generally better at ‘holding it together’ at school or in other social situations, with the explosion then occurring at home in their ‘safe space’
The impact of this, results in some diagnostic challenges, with 50% of boys receiving an autism diagnosis by the age of 11, whilst only 20% of girls receive their diagnosis by this age.
This situation gives rise to a higher proportion of undiagnosed females which in turn can lead to other problems manifesting themselves in poor mental health:
- High anxiety
- OCD behaviours
- Eating disorders e.g. Anorexia
It is not right that is still happening, but this is changing for the better as more and more people and medical professionals begin to understand autism and how it presents.
What are the main differences in the presentation in females?
Below are some key generalisations on differences. By no means are we saying this is always the case, but it is a helpful insight into understanding our girls/females.
- Girls on the spectrum tend to dress and do their hair for comfort rather than for fashion
- Much effort is often made to avoid drawing attention to themselves and making sure they fit in
- Tend to have intense friendships with 1 or maybe 2 people, rather than a circle of friends
- Within play they tend to control what is happening as this then makes it feel safer
- Girls are often more able to manage a reasonable level of eye contact and more likely to use gestures though these may be exaggerated
- Usually, girls want to have friends and are therefore socially motivated, but find it difficult to understand the rules and interactions needed for success. Extreme shyness is often an issue and there tends to be a reliance on others making the first social contact
- While a good range of vocabulary may be present, it may be expressed in a scripted way
- Maintaining two-way (reciprocal) communication is often challenging
- Mimicking of mannerisms and social behaviours in an effort to fit
- Girls tend to hold things together and then explode then they get home
- Perfectionism is a common feature
- May have intense interests, but they tend to be for more typical subjects
- May opt for playing with things for younger children. On closer observation, mimicking or re-enactment may be more at play than imagination.
En-Fold’s founder, Diane Johnson, shares some of her own personal journey to an adult diagnosis and how it has influenced her passion to make a difference.
Childhood was a place of confusion and isolation. Intense bullying and difficulty fitting in and understanding the world made life a challenging and rather miserable experience. To the onlooker, there was a slightly odd young person, but one who was achieving; after all school was for learning! Diagnosed with clinical depression by the age of 9, but no mention of why I didn’t seem to fit.
Open-ended tasks for homework would mean that literally hours would be spent producing work that would be ‘good enough’ for the perfectionist self-critic. By the time senior school came, teachers would be reminding me that we were working towards our GCSEs and not writing a PhD!
Becoming involved in scouting was a great experience, and again to the untrained observer, a young person was shining and achieving. The reality was a young person obsessed with collecting the proficiency badges and working towards the highest achievement of Queen Scout Award (which was achieved). Becoming a patrol leader gave permission to organise, plan and control the activities of the group - facilitating and leading and delegating becoming a coping strategy for controlling the world that overwhelmed.
Self-esteem was wrapped up in this constant gaslighting and masking, with burn out and a full mental health breakdown leading to an extensive hospital admission at 16 years old. Sadly, deterioration in mental health is not uncommon for undiagnosed females on the autistic spectrum. Refocussing and engaging in life with the dogmatic determination to achieve, a range of volunteering activities were embarked upon.
University as an independent student was pursued, and passion for making a difference to the lives of others was sparked. The more involvement in the world of disability, the more understanding of differences was gained, alongside changes in home and family life.
Experience has been gained through different job roles within the world of disability and in the role of foster carer for children. After being approached to set up a support group by parents with children on the Asperger end of the spectrum, High Five was created. It soon became very apparent that the descriptions in that meeting were of the masked inner self.
Skipping some more time and with the arrival of children, soon, the autism diagnostic pathway was much closer to home. Having a clear understanding of the condition, and indeed personally questioning, the journey for all the females began. Here we are today as a family, with all the females diagnosed with ASC.
High Five, now over 10 years old, involvement in the Northamptonshire autistic community over the last decade and more, along with a lifetime of lived experience, has given rise to wanting to see change. There are many amazing bloggers, champions and activists for change who are doing a fantastic job of altering perception and generating awareness.
En-Fold was born from my passion and drive to be part of a change that sees individuals and families impacted by ASC getting the support and information that they need. All too often, once a diagnosis is given minimal explanation is offered, or information on what support is available. This system navigating and setting people up equipped for their life journey is En-Fold’s mission, and something I am proud to be taking forward.
My diagnosis has given me an explanation of who I am and why I am the way I am. It is not an excuse, but it gives me a reason for the things I find so difficult, and therefore permission not to beat myself up (so much). Many people will look at me, and see a confident, intelligent and organised individual – certainly in the ‘you don’t look autistic’ group, Grrrr. Only those who know me well will see the critical self-reflecting perfectionist.
Within my ‘professional’ mode, I am articulate and capable, and yet the challenge and anxiety experienced around the unfamiliar, unstructured or emotive can be debilitating. Every activity, is planned and simple changes are hard to deal with. Do I view my autism as a disability – Yes I do! Do I think it makes me less a person – NO! There are some things I can do as well as anyone else, there are other things I need to go about differently or use some support with.
Dare I say it, there are even some things I may be better than others at… I am an individual, and I have autism. I consider myself fortunate that my ‘special interest’ is autism. Through En-Fold, I am able to use my knowledge and passion to support other people.
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Disclaimer: En-Fold does not endorse treatments, interventions and therapies but lists them so people can make informed choice. This site is for information purposes only and is a starting point for readers to look into options that may fit or resonate. Remember, therapies for autism, like any condition, should be discussed with a trusted medical practitioner or certified therapist before use. All information, data and material contained, presented or provided here is for general information purposes only and is not to be construed as reflecting the knowledge or opinions of En-Fold, or as providing legal or medical advice. All treatment decisions should be made by the individual in consultation with a health care provider. Case studies provided are done so in good faith, and based on the personal experience of the individual submitting them. En-Fold are in no way endorsing the establishments that are mentioned but offering peer reviews to inform readers.