ARCHIVED – The Misdiagnosis of Women on the Autism Spectrum: A Shared Story
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
In a survey conducted by the National Autistic Society only 1/5 of autistic women were diagnosed by the time they were 11. Over half of boys had already received their diagnosis. What’s going wrong when it comes to detecting girls on the spectrum, and why is there such a male bias when it comes to assessment? This is the story of hundreds of women with the disorder, taken from their personal accounts, books and blogs.
Imagine you are a 6 year old girl, you have no desire to play with the other children but you are often forced into ‘play dates’. You like boys toys, climbing trees, building Lego. They like pretty dolls, styling hair and playing mum. Every birthday party you are forced into an itchy horrendously over the top patterned dressed with matching tights, you wear it for 15 mins to appease everyone then you burst into tears and it is taken off you. You quickly learn that it is going to be a bit of an endurance test ‘being a girl’. Even as a six year old you have become very self conscious, studiously trying to learn how to behave and what to say; you don’t understand it but it seems to work. Over the years you’ve become a very anxious child, too scared to say or do the wrong thing, scared of bringing unwanted attention onto yourself. The teachers say you are selectively mute, and try to force words out of you.
Not talking has become counterproductive, it is not ‘normal’ behavior and seems to be causing a bit of a scene. Reluctantly you utter that first word, and suddenly they all come flooding out like verbal diarrhoea, you think it is all pointless chit chat but people seem to respond and you are blending in more. However, all that nervousness has to go somewhere, you might seem more sociable with more friends but it’s still meaningless to you. By the age of 10 you are experiencing full blown panic attacks and suffering from multiple phobias. The doctors call this an anxiety disorder, they tell you to expose yourself to your fears and overcome them. The medical way of telling you to ‘man up’. So that’s exactly what you do, you teach yourself to overcome them one by one so they are invisible to the outside world. You don’t give up until you have contained every ounce of anxiety inside a locked safe deep within your cerebellum.
Unfortunately now to cope with ‘normal’ life and other people you have developed a few odd repetitive behaviours. Clucking noises in the back of your throat, hand twitches and a desperate need to turn switches on and off. Your friends start to ask you why you’re being so weird. The school bullies start to mimic you, laugh at you. Before you know it you have obsessive compulsive disorder, these behaviours need to be reduced. So just like the anxiety you tackle it head on, one useless behaviour at a time, for Christ’s sake why can’t you just be normal!? Look at that girl over there, she’s attractive and friendly, and everyone seems to love her, if only you could just be a bit more like her…you watch her more and more intently, every conversation you have with her is scrutinised until every thought you have is of her, and then before long as though you are her. You have successfully cloned another human being and you have the friends to prove it!
Only it doesn’t stop there, there’s so many people you want to be more like. So much pressure to keep it up. You begin to wish you looked like them too, so you stop eating and start exercising. At first you are complimented on your great shape but before long the admiring looks turn to disapproving. You are referred to mental health services, the doctors say you have Anorexia Nervosa. Or maybe you start to self-harm. You are in secondary school now, the social pressure has gone up a notch. Suddenly everyone’s trying to impress the opposite sex and get the most drunk at parties. You just want to go home straight after school and do the same thing you do everyday; watch your TV programmes, read your books, organise your shelves and do you homework. Everyone’s having ‘so much fun’, and you can’t possibly be having fun. But you are, but now you feel bad for having fun by yourself. You make feeble attempts to hang out with your peers but usually collapse in exhaustion after an hour or two, requiring several days by yourself to recuperate. They find each others jokes so funny, you use to be the funny one but now you just don’t understand them, you miss the point, they say you take them too literally.
You’re so tired your mood is up and down. Occasionally you feel full of energy and take on life at an alarming pace. You can be sociable, witty and productive. Then a few weeks later you are in the pits of despair. You have tried buckets full of pills, but you’ve been oversensitive to them all. The hormonal pill makes you moody and depressed, the anti depressants make you psychotic and twitchy. After assessing all your notes you finally get label led as manic depressive or perhaps as having a personality disorder. It never quite fits but no one has ever considered you might have autism. You are a girl, you have friends, you make good eye contact, you aren’t sat rocking with your collection of trains. Maybe by the time you are in your 20s someone will piece it together for you, or maybe you’ll go through life never knowing, carrying the burden of multiple psychiatric diagnoses along with you.
Many females who go on to get diagnosed with autism have been referred from other psychiatric conditions. Many have co-morbid conditions, most commonly OCD, eating disorders, personality disorders, selective mutism, anxiety and depression. It is thought that up to 42% of these may have been misdiagnosed (Gould, 2011). Fortunately researchers are beginning to address the gender divide in diagnosis. Last year the ‘autism in pink’ two year international programme was launched, looking at the misdiagnosis, social exclusion and stress among females on the Autistic spectrum. Hopefully this will change the way autism is perceived, erasing the male stereotypical image which biased research has created. What is vital to remember is that cognitively men and women with the disorder do not differ, they are impaired in the same core areas. However, it is how the different sexes cope with these impairments which creates the false belief that they experience the disorder differently. Many believe it is due to females being required to be socially adept in society, or having a drive to understand others. Maybe one day we will know.
My bible and the best book you will read if you’re a girl on the spectrum: “Aspergirls” By Rudy Simone