It is unacceptably difficult to get an accurate diagnosis for Autistic girls with ‘invisible’ autism, those girls who happen to be average intelligence or higher and can communicate with spoken words.
Don't take my word for it. The research tells the tale: in very young children, only one girl is diagnosed for every 5.5 boys, but by adulthood, the prevalence is 1.8 to 1. ** Rutherford et al. Autism Vol. 20(5) 628-634) **
Wow. We were there all along and yet we fell through the cracks. Given the lack of resources and the reluctance to provide them, it's not that surprising.
There are painfully few professionals who understand that autism is often expressed in different ways by the female phenotype...so few who know that beneath the thin veneer of academic ability and advanced vocabulary, there is often a young girl who struggles to understand what is expected of her, and who suffers with anxiety, sensory issues, life skills, and social and communication skills.
Why are we being missed?
Researchers have some ideas: girls mask their symptoms and imitate others, have areas of interests and talents that aren't so different from typical peers, see value in learning social expectations, and can often be very social. For clinicians who don't know the questions to ask and the areas to probe, this means the autistic learner goes unidentified and spends much or all of their growing-up years struggling to find their way.
The value of an accurate diagnosis cannot be dismissed. These girls often DO get diagnosed, but with anything but autism: social anxiety, general anxiety disorder, bipolar, depression, anorexia, borderline personality disorder, oppositional defiant disorder, ADHD, and learning disabilities, or poor parenting. Let's not forget the unkind editorial characterizations of lazy, drama queens, aggressive, unstable, immature, arrogant.
Sheesh. These nasty editorial comments add insult to injury. How about if we start accurately identifying our unique learners, and then helping both teachers and parents to understand approaches that can be most effective in teaching academic, social understanding, and life skills.
As we wait for our societies around the world to catch up to our understanding of the female phenotype, it may fall to parents to help their professionals to consider autism as they seek answers for their child. The following is a brief list of traits and tendencies that are seen in some girls with autism. Yes—these are just anecdotal, and certainly can apply to boys as well.
This is in no way a comprehensive list-- I could have added dozens more.
I am not a doctor (or any other kind of diagnostician): I am just an Autistic advocate whose special interest is autism, and I am sharing what I have learned.
Please remember that autism is different for everyone. It is, after all, just another way of being human--a unique way of learning and experiencing the sensory world.
Once we understand that and what it means for our child, there is the potential for everything gets easier.
** boys may also display any of the behaviors described. It should not be so binary--but the fact is, those who do not fit the male bias in assessment often don't get accurately assessed.**