O has always been an anxious child, she has always found something to worry about. In the past we have tried numerous techniques to try and assist O with her anxiety but all to no avail. In the second half of last year we came to the point that we needed to seek the assistance of a child psychologist. During O's second session, the psychologist took me aside and suggested that we should look at getting O assessed as she strongly believed that O was on the spectrum.
And wouldn't you know it, O now has a provisional diagnosis of High Functioning ASD, not that medical professionals diagnose children with High or Low Functioning ASD anymore. However the scale of 1 to 3 that a child receives reflects High to Low Functioning.
During O's diagnosis process I began to ask questions of the medical professionals that we were visiting frequently and also began to do some research of my own.
How on earth had I missed O's ASD traits? They were there the entire time and I had missed them. Why? How?
For a start, girls are generally brilliant at masking their traits by either copying or mimicking their peers. It is only when the social and emotional side comes more into play as girls grow older, that girls with ASD begin to struggle. It becomes more difficult to understand and mimic others emotions and social interactions as these become more complicated.
O has always been a little copy cat. I used to regularly comment when she was a baby and toddler that it was as though she was watching the other children around her before she practiced a new skill. And when she did "practice" a new skill, she often succeeded on the first try.
Last year O really struggled to understand the girls in her class and others that were older than her. She would often tell us that she didn't understand the way that they talked or acted. It was becoming harder for her to blend in.
Girls, ASD or not, often know that standing out in the crowd is generally not a great thing to do. They will have enough skills to be able to blend in with their peers. They watch and observe and then use their intelligence to join in on social situations. Girls will learn socially appropriate and acceptable behaviours such as maintaining eye contact, memorising phrases that are commonly used and imitating the facial expressions of others.
O is variable when it comes to maintain eye contact. She usually finds eye contact difficult however occasionally she will maintain eye contact but the catch is that she is in fact staring at you. It can become very uncomfortable.
It's often known as Autism camouflaging and as a consequence of being able to camouflage their traits, girls generally stay off the radar and are diagnosed at an older age, compared to boys with ASD. Girls are usually diagnosed after the age of 6 or 7 or even older as a teenager.
There are numerous females that have gone through their life undiagnosed until they begin the diagnosis process with their own children. It is during that process that they begin to relate to the criteria being used to assess their children. I am one such adult - I can see a lot of myself as a child in O. I have also been able to relate my teenage years and how I was feeling to the diagnostic criteria.
This is not to say that girls are not diagnosed before the age of 6 or 7, numerous girls are diagnosed younger than that and it is most likely due to the fact that their ASD traits were obvious. Children present ASD traits in many different ways, there is no typical way of presenting. But what Autism researchers are finding is that more and more girls and women are coming forward to be diagnosed.
The original DSM criteria was very much male biased. In fact ASD used to be thought of as a male disorder as females were rarely diagnosed. In the past girls may been misdiagnosed or missed altogether simply because at times they do present differently to what the criteria is suggesting. Or the traits simply didn't stand out to those adults around them.
When Dr Hans Asperger originally reported about Autism in 1944, he initially only found it in boys and he stated that "in the autistic individual the male pattern is exaggerated to the extreme.....it could be that the autistic traits in the female only become evident after puberty. We just don't know." (Firth, 1991, pg 85.)
In fact for every four boys who are diagnosed with ASD, only one girl will be diagnosed. Obtaining a diagnosis for a female can be a very challenging process. The idea that girls can present ASD traits differently to that of boys is a relatively new concept and as such not all medical professionals are in agreeance.
Neurotypical boys and girls differ in terms of how they socialize, how they communicate and in their behaviour. It is safe to stay that ASD children are no different.
In saying that, I do need to add that boys and girls with ASD are also similar in many ways - they all have difficulty relating to and communicating with other people, they may have repetitive behaviours, they may be fixated on a special topic or interest and so on.
But those similar characteristics which both girls and boys both experience difficulties with may present differently between the sexes.
Boys will generally act out their frustration behaviourally when they are unable to understand social situations. Girls however tend to internalize their frustration and are less disruptive at school. At school they are well behaved and generally fly under the radar. They are quiet, helpful and kind and may appear to be shy or sensitive. This in itself makes it very difficult to convince educational and medical professionals that something is not right.
O worked out very early on in her schooling that acting out at school was not a good thing, she did not want to get into trouble so she would internalize all her frustration and then release it all when she arrived home. Her teachers have never seen this other side of her.
This is the downside of camouflaging - it takes a considerable amount of mental effort to be constantly on the ball when in social situations. This leads to mental exhaustion and it does take an emotional toll on the individual and their family.
Constantly camouflaging leads to high anxiety which, for girls, rarely presents at school or in social situations. Boys may become disruptive when in an anxious state, girls tend to internalize their anxiety and let their emotions explode when they arrive home to their safe place. This is O to a tee......
At times girls with ASD will possess the ability to read above their developmental level, however their comprehension does not always match their reading skills. They may have an average or slightly above average IQ, will receive good grades and not appear to struggle academically which leads to confusion among educational and medical professionals during the diagnosis process.
Girls may be book worms or love to write creative stories and they often have the most amazing imaginations. The stories and poems that O composes are simply amazing. We have been told recently that girls with ASD do not have an imagination, however I beg to differ.
Girls with ASD will often prefer the company of much older or much younger children. They generally like to play the same game and play the same role every time! O played a game when she was younger called Mummies and Darlings. She was the Mummy and I was the darling. She would fall into the Mummy role and would not break character. This game could go on for days, we'd go to sleep at night and when we awoke the following morning, the game would continue. And if I broke character, hooley dooley, O would completely lose it!
Girls with ASD may go to a speech therapist for their speech when they are quite young but this initial speech issue is initially unrelated to Autism. As a baby and toddler, O suffered from numerous ENT issues to the point that between the ages of 2 and 2 and a half she could not hear. Missing 6 months of hearing affected how she learnt new sounds and as such when she entered Kindy she was unable to pronounce certain sounds. O attended speech therapy for approximately 18 months to correct her speech pattern.
Girls with ASD may have repetitive behaviours and special interests like their male counterparts however these can look different as well. L has an obsession with anything and everything to do with superheros - clothing, toys, books, bedding, facts, comic books, TV shows ...... O has special interests, Monster High Dolls and Shopkins are some of her interests, but these are very similar to those interests of typically developing girls. O has collections of objects, one being tiny bits of paper. This type of collection is generally not common amongst neurotypical children!
At school and in other social situations, girls with ASD may spend a considerable amount of time either alone or looking for opportunities to help out other children or their teachers. We're constantly told that O is always helping other children at school and that she likes to help the teachers during recess and lunch. Mmmmm....
Having now completed the diagnosis process with O and having to look closer at her traits, I can see that her traits were there all along but other than her anxiety, none of her other ASD traits stood out like L's did. O's stimming didn't stand out as being odd, her collections and obsessions were similar to those of other children her age, being first time parents we put her favouring of certain foods down to being slightly fussy. O has a variable pain tolerance. I could go on but hopefully you get the picture.
What I can tell you is that we have had several years of feeling like we were banging our heads against a brick wall when trying to explain her emotional outbursts and we now know why. O was simply presenting her ASD traits differently to other children.
One important lesson that I have taken from O's diagnosis process is that it is paramount that parents are listened to by educational and medical professionals when they are desperately seeking answers for their children's behaviour.
I'm not in any way dismissing how other children present with ASD, there is no typical way. As the saying goes, if you've met one person with autism, you've met one person with autism. Some children present with autism traits at a younger age than others.
What does need to happen is more awareness of the difference in autism traits. The more awareness that there is in the educational and medical system, the easier it will become to get our children the help that they desperately need.
Firth, U. (Ed). (1991) Autism and Asperger Syndrome. London: Jessica Kingsley Publisher.