Many women with autism are diagnosed too late and often wrongly diagnosed
I want to focus on women now in this context. When autism is being discussed, the discussion usually turns to boys and rarely about girls with an autism spectrum disorder. Perhaps Hans Asperger’s legend plays a part, he only associated autism with men when autism was being discovered.
First of all, the frequency of diagnosis is much lower among females. For every 1 woman diagnosed in the United States, 4 men are being diagnosed. In some countries, the frequency is 16 to 1. In addition, the diagnostic criteria have often been very masculine, which can lead to girls not to be diagnosed until late.
Recent research has shown that a higher percentage of women have autism spectrum disorder than expected. Therefore, various theories have been proposed to explain why. The social part plays a big role, but social difficulties are one of the symptoms of autism. Women are better at hiding these difficulties as they are better at imitating the behavior of others such as e.g. social skills. That is not to say that women understand the social part better, but they are better at adapting to social habits.
In addition, has research found a gender difference that shows that girls on the autistic spectrum find it easier to be in a stable relationship with other people.
Furthermore, are girls less likely to have external behavioral problems such as e.g. hyperactivity or impulsiveness. Their problems are more likely to be internal and manifest in anxiety, depression or eating disorder. Girls also have a lower score over repeated behavior. This can cause close relatives and employees of public institutions (kindergartens or schools) to overlook the symptoms in girls as they are less prominent than boys. Being “calm or passive” is rather accepted as a desirable behavior when talking about girls rather than boys. This can lead to complications about girls & explain partly why they get diagnosed too late or diagnosed wrongly.
Many women who have been diagnosed late speak of great relief and increased self-awareness when they finally get the right diagnose. Often, this group has received other diagnoses such as personality disorder, depression or anxiety. I read an article about a girl who was diagnosed in her thirties, who talked about going to work, adapting to all the social habits of the workplace, but when she got home she sank into a deep hole of depression. To “pretend” to be normal was mentally and physically exhausting which led to exhaustion & depression.
I also read about another woman who summarized her last 5 years before the autism diagnoses and put it together in one sentence, that sounded something like this: “4-5 years spent on depression and anxiety treatment …. years of therapy and not a word that I could have anything but depression”.
It is so important to put more focus & awareness of girls. A proper diagnosis leads to appropriate treatment options and increased self-understanding as to why specific environmental and human responses are as they are. Getting the right diagnosis can be crucial for improving the physical and mental health of individuals. No one should be faced with the wrong diagnosis and therefore the wrong approach to treatment options that increase mental distress.
Please share this article to raise awareness on this topic.
The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype, BBC News, Autism.org.uk and Organization for Autism Research
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Photo by: Snæþór Sigurbjörn Halldórsson