Light It Up Blue! –That’s the slogan for Autism Awareness Day.
Why was the colour blue chosen?What about lighting it up pink for the girls/female population that are autistic? Don’t get me wrong, I like the colour blue but as a mother when you have a baby the usual colours to go for are blue for boys and pink for girls, so generally that is usually the gender colour code, right? It makes me wonder how many females were diagnosed as autistic when the colour blue was chosen but more importantly, why are the female population under represented when Autism issues arise?
Under-diagnosing autism in females matters a lot. According to the NAS 2012 survey, “42% of females had been wrongly told they suffered psychiatric, personality or eating disorders, compared with 30% of males. The survey also found that just 8% of girls with Asperger syndrome were diagnosed before the age of six, compared with 25% of boys. Only 21% of girls with Asperger’s were diagnosed by the age of 11, compared with 52% of boys. Many adult women who took part in the survey didn’t have a diagnosis at all, that is 10% compared with 5% of males“.
Some of the key problems in diagnosing females with autism is that they can present very differently to males with autism, they don’t fit the stereotypes or their symptoms are misinterpreted as something else and they may be better at hiding the signs, at least when they’re young. Autism is a developmental disorder that is marked by three unusual kinds of behaviors: deficits in communication, social skills, and restricted or repetitive behaviors but some researchers are suggesting that the model that we have for a classic autism diagnosis has really turned out to be a “male model”, but that’s not to say that girls don’t ever fit it, but girls tend to have a quieter presentation, with not necessarily as much of the repetitive and restricted behavior, or it shows up in a different way.
Stereotypes may also get in the way of recognition. For example, where the boys may be looking at train schedules or lining up cars and trucks, girls might have excessive interest in dog pictures or movies, or horses, fairies or unicorns, which is not unexpected for girls, but the level of the interest might be excessive which can be missed and sometimes seen as girls being girls. As other girls move on to other areas of interest, like boy band, makeup in their teenage years, girls with autism often do not. This causes gaps to appear between their social development and that of their peers, often resulting in them becoming increasingly socially isolated as areas of common ground disappear.
All the above factors have been proven scientifically but I believe the time has come for more female, autistic individuals to start to raise their voices and let the world know that they exist and tell us their experiences (are they the same or different from the male individuals?). Unless people get to hear your story and what it’s like to live as a girl/woman on the spectrum or what it’s like to be a parent with an autistic daughter, scientific research based on the male population will still dominate for years to come. Furthermore, I think it is time for the Diagnostic Criteria to change and reflect/include experiences of autistic girls and women.
Now all of the above mainly affect those not been diagnosed or misdiagnosed, what happens after your daughter has been diagnosed with Autism? I bet it opens a whole new world and feelings, but having a proper diagnosis means the worst is over because now you know and it’s a matter of finding ways or strategies that will work with your child.
For parents and carers of an autistic girl, engage with other parents who have girls because apart from belonging to groups of parents with autistic children, those with autistic daughters may have similar issues or questions which they may have dealt with and succeeded that may be of help to you. At home, clear routines and structure can be a great help, if necessary, use egg timers or sand clocks to count down at the end of an activity. Communication is key, make everything explicit, explain why you are doing something, or why you talk to someone in a certain way. Personal care and hygiene should be taught on time especially issues concerning puberty.
I would also recommend a book I read which opened my eyes to a whole new world and challenged my thinking about Autism and girls. The book was written by Autism Women’s Network titled “What Every Autistic Girl Wishes Her Parents Knew”.
From my experience of working with autistic girls, they have many interests and strengths which can benefit them in the school environment and these need to be recognised, encouraged and accelerated to support achievement and promote self-esteem. While their special interests can also be a way to meet like-minded people, however, the biggest difficulty for them is in the area of friendships and getting on with others especially during the teenage years. Hence, social skills relating to making friends and what is appropriate and acceptable in friendships should be taught both at home and school. Educators should always find out how they learn best and allow girls to work to their strengths, and encourage an atmosphere which embraces difference, making it the norm to be unique to avoid them having low-self-esteem issues when they feel that they don’t fit in with their peers.
Autistic girls, with the right support and guidance, can become successful, self-aware, happy and independent young women, able to live and study independently and pursue a variety of careers, this I know because one of my lecturers in college years ago is autistic and she was pretty amazing in delivering her lectures.
So “light it up blue”? No problem, as long as the hands lighting it all blue include autistic girls and women!