I was having this conversation with O's psychologist a few weeks ago, that people have certain ideas of what Autism should look like and then when they meet someone who doesn't fit that description, they struggle to comprehend that Autism can present differently. If an individual is physically disabled, people accept that, you can see the disability as it is there in full view, no questions are asked, society accepts them. When the disability is hidden as Autism often is, society seems to struggle to accept it.
We've been told by quite a few people, including medical professionals, that L can't be Autistic because he doesn't look Autistic. He doesn't fit the typical stereotype that many people have of Autism. People have said to us "but he can talk" or "he doesn't flap his arms all the time" or "he looks normal."
My response to them is: "tell me what you think Autism looks like and I'll show you what Autism can look like."
Autism can present in many ways. Autism is generally characterised by difficulties in behaviour, social interactions, communication and sensory sensitivities. While these characteristics are common amoung those diagnosed as being on the spectrum, they are not necessarily exhibited by all people on the autism spectrum. It's why it is called Autism Spectrum Disorder - it's a spectrum and a very broad spectrum at that.
I have worked with many children who are on the spectrum, and I have not yet come across a child who is the same as another, they have all presented differently. I've worked with a child who was completely non-verbal and needed substantial assistance in all areas. I've worked with a delightful girl who was incredibly social and had difficulties with communication but when she sang, you could understand every word. I've worked with a child, that unless you had been told that he was on the spectrum, you would never know. I could go on, but you get the picture.
Some children are diagnosed early in life, others are not diagnosed until later in life. L was a different baby to O. He was different from other children his age and we just knew that there was something about him that was concerning. It took 3 and a half years for someone to take us seriously. He was late to hit all his milestones, he did things that were unusual, he's always had sensory sensitivities, he's always lined things up, he's always had sleep issues and the list goes on.
O on the other hand was no different from other children the same age as her. It is only in the last year or so, that we've begun to suspect that maybe she could be on the spectrum. At first we just thought that perhaps it was because we were more aware of Autism due to L's diagnosis that we were now picking up traits in O. But in talking to our pediatrician and O's psychologist, the traits were always there but they didn't stand out as being "odd" so we didn't suspect anything.
Medical professionals are now beginning to realise that Autism traits in girls often present differently to that of the traits in boys. In some cases the traits don't start presenting until girls reach the age of 6 or 7 or often in their teenage years. At times, females aren't diagnosed until adulthood when they go through the diagnosis process with their own children and realise "hang on, I think I may be on the spectrum."
It is thought that women and girls who have been diagnosed as being on the spectrum are better at masking their difficulties as young children in order to fit in better with their peers. Girls are just better at covering up the more obvious characteristics of the disorder. In Asperger's and girls, Tony Attwood states that "girls are more able to follow social actions by delayed imitation because they observe other children and copy them, perhaps masking the symptoms." Girls may pick someone in their class and they copy everything about that person: how they dress, how they act, how they talk, so that they fit in.
The social difficulties may therefore be less obvious and as such a diagnosis is not made because they haven't met the criteria or they are misdiagnosed. This masking behaviour generally isn't seen in boys diagnosed with autism.
Girls are generally more aware of the need to be social, many feel the need to interact socially and while they will be involved in social play, they may be led by their peers rather than initiating the social contact. (Gould & Ashton-Smith, 2011)
As girls become older, they may find it more difficult to copy their peers and they may struggle to understand social situations or start struggling emotionally, and that is when the traits start to show themselves.
Other studies have suggested that features often associated with autism such as attention and socialisation, as well as concerns about depression, higher levels of emotion and anxiety are often reported more in girls than in boys (Holtmann, Bolte & Poustkaet, 2007.)
This year, O has started saying that she doesn't understand how some girls at school act or why they talk the way they do. O has always been an anxious child, but in the last year, her anxiety has gone through the roof. With these traits now emerging, we've begun the diagnosis process for O. While she doesn't struggle academically, she does need help socially and emotionally. And now we can see that girls, at times, do present differently. O is presenting completely different to how L presented.
I definitely don't profess to being an expert on Autism. The one thing that I do to profess to knowing is that every individual with Autism is different from the next. We're experiencing it first hand with our little superheroes.
So the next time you hear someone say "they can't be autistic, they don't look like it" what is your answer going to be?
Holtmann, M., Bolte, S. & Poustkaet, F. (2007) Autism Spectrum Disorders: Sex differences in autistic behaviour domains and coexisting psychopathology.
Gould, J. & Ashton-Smith, J. (2011) Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum.