When her teenage daughter was finally diagnosed with autism, everything fell into place for Caroline. Here she shares what she learned at a talk on girls and autism by renowned expert Sarah Hendrickx and relates it to her own experience in the hope it will help other parents also concerned about their child.
My daughter, B, has always been super fun, empathetic and creative with a cheeky glint in her eye but has also had some persisting and at times debilitating challenges. When she was around age six or seven we decided to seek guidance on how to fully support her and subsequently push for an ASD assessment.
As part of this process and my newly found need for any and all information ASD related I attended a Children In Scotland talk at an Edinburgh conference centre hosted by Sarah Hendrickx, a renowned expert on Autism. She began by setting some key terms into context, ones that you may well be familiar with but are always helpful to be clear on...
Autism is a lifelong, developmental condition that affects how a person communicates with and relates to other people and how they experience and process the world around them. Asperger's is a term commonly used to describe high-functioning autism - and whilst it may mean that others experience less of the individual's autism - because they internalise and learn to adapt with coping strategies - the impact on the individual is no less severe. Both diagnoses are now covered under the umbrella term Autistic Spectrum Disorder (ASD). In both cases, and along the spectrum, you have people who are trying - often with great physical and mental strain - to cope with on a daily basis.
Now if that sounds a little clinical, perhaps this quote from an autistic woman Sarah had worked with will help:
"I feel like I have a different operating system and a very good emulator running on top of it. The few people I tell are shocked to find I'm autistic. I can fit in, I can behave like others up to a point, but it isn't me and doesn't fulfil anything within me. It's empty and meaningless"
A useful image is also that of the swan - in many ways a perfect visual representation of someone with ASD 'masking'. On the surface you see the swan gliding effortlessly across the water (as someone who is masking would seem perfectly natural) - however no one sees the huge effort needed beneath the surface to appear this way, with the swan's legs going like the clappers!
Diagnosing ASDs is clearly an important step, but Sarah and others have explained how, until recently, diagnosis only really looked for 'male-typical' signs - characteristics that are now known to be typically presented in boys. What this has meant is that there are now generations of 'lost girls' who have not received the help and support they needed and deserved.
This could not have been any more clearly illustrated by the fact that she herself was only diagnosed with Asperger's at the age of forty-three, having studied and researched in the field for many years!
It's commonly accepted that girls are less likely than boys to be identified as having an ASD and tend to receive a diagnosis three or more years later than boys if at all. The delay seems to be because in childhood autistic girls tend to have better social skills than autistic boys. This ability typically means they are better able than boys to interact socially through copying behaviours - often a delayed imitation - and this masks what might otherwise be more easily observed.
This doesn't endure though and by their teenage years, autistic girls will tend to have poorer social skills than teenage boys. However, at this point females with ASD may feel they don't fit in anywhere and in trying to appear 'normal' will be constantly masking their feelings and copying others. This can be absolutely exhausting and in the early-to-teen years can lead to 'meltdowns'.
Two behaviours that are now commonly observed with girls are that - in peer relationships - they may appear either very controlling or else very passive. These are two complete contrasts: they may want to be in absolute command of what's going on around them - perhaps appearing to 'mother' other children or to want exclusivity in friendships - or else they choose to selectively choose to remain silent. This is often about avoiding becoming overwhelmed; staying disengaged as a safety net.
They may also seek or be sensitive to sensory input, for example, constantly stroking or fiddling with a special toy or blu-tack, avoiding loud noises, bright lights and crowded places. They may be sensitive to certain clothes and things touching their skin, or having hair or teeth brushed. Many may also have obsessive hobbies or something specific they are interested in, to the exclusion of all else.
Girls with ASD can be very trusting and naïve. This can make them vulnerable throughout life and a number of additional protective and educational support steps need to be put in place for major life changes and milestones. There can often be issues understanding subtler forms of communication e.g. body language, tone of voice and taking things literally can cause confusion and misunderstandings, which can lead to unintentional issues and conflict in personal and, later in life, professional relationships.
Sadly, it is very common for those with the condition - but especially females - to develop severe mental health issues such as eating disorders, exhaustion, stress, depression, anxiety and self-harm. These can lead to higher suicide rates if appropriate supports are not put in place.
Amidst what can seem a stream of disconcerting and negative thoughts it's only natural to wonder what your children's future might be like, and how they might fit in with the world around them as adults and thrive. Sarah noted for all of us parents in the audience that in terms of future prospects, a number of highly technical fields look specifically for people with ASD to employ because of their unique characteristics e.g. the pharmaceutical, research, analysis and technological fields.
Sarah also pointed to the fact that the often observed trait of having obsessive, uniquely creative and perfectionist tendencies in certain areas can lead to people with ASD becoming the expert in their chosen field. Some famous examples I have found during my research (who have been diagnosed or are thought to have ASD) are Tim Burton, Temple Grandin, Albert Einstein, Susan Boyle, and Stanley Kubrick.
Mimicry is used in the artistic fields for acting and the ability to pick up and copy accents and mannerisms on cue is also a very useful skill, as the likes of Anthony Hopkins, Dan Aykroyd, and Daryl Hannah have all shown.
On a personal note, the ability for B to perfectly mimic the accent of newly found friends on holiday has led to some "interesting" conversations and I can only imagine what the parents of her friends thought as her voice changed from broad Scots to Irish or American within the same sentence, it certainly made us smile.
Sarah certainly made some interesting observations on this front: about how although people with ASD will often tend to have a genuine desire to make people happy, there can be a lack of recognition for hierarchy, meaning that everyone is treated as being on a level playing field irrespective of age, grade or title. She also noted that an open, honest and straightforward way of being and communicating tends to be a preference and that those with an ASD are less comfortable trying to play political games, attempting one-upmanship, or trying to make others look bad.
Out of all the research I have done, I particularly enjoyed Sarah's talk and wanted to share her point that her observations were not intended to frighten or scare - but to encourage and inspire.
I can only agree with this and as a parent say that you know your child or relative better than anyone else does and that - if need be - you should fight for an assessment and diagnosis. And keep pushing if you need to. Sarah noted that some people have been known to refuse to leave the doctor's or school office until a referral was made.
Just remember that the whole process can take a long time, and in some cases up to several years. What I have found is that there are some excellent support groups and resources out there too and you will not be alone.
As an unexpected result of going on this ASD journey with B, I found that I also ticked a lot of the boxes and have recently been diagnosed with ASD myself. Getting the diagnosis was a bit of an epiphany and 'ah-ha' moment as it certainly answers a lot of questions about my life growing up and my many (I hope endearing) "quirks".
Caroline; finding that sometimes working from home - and wearing noise-reducing headphones - can help minimise the sensory overload.