By Professor Tony Attwood and Dr Michelle Garnett
Many autistic women deliberated about whether or not they should seek a formal diagnosis, weighing up the potential costs and benefits. Once making that sometimes difficult and painful decision, there is a long and time consuming road ahead before they find someone with the knowledge to make an accurate diagnosis. Research shows that at the time of writing, the average age of being diagnosed with ASD Level 1 for boys around the world is 8 years old, whilst for girls the average age is 13 years old. There are many pathways to diagnosis for girls and women, and we have found that these include:
- The initial diagnosis of a different condition, particularly, social anxiety, ADD or ADHD, selective mutism, depression including bipolar disorder, gender dysphoria, obsessive-compulsive disorder, or anorexia nervosa. This is a common pathway for adolescent girls.
- A common pathway for women is the diagnosis of an autism spectrum disorder in one of their children, or another family member.
- Another common pathway for women is the Internet, discovering female descriptions of having Asperger’s syndrome, and resonating so well with those descriptions.
It has certainly been the case historically that far fewer females have been diagnosed with autism than males, with the ratio standing at approximately one female for every 4 males since the early 1990s. However, as Maura astutely describes, we suspected that we would see a leveling out of this diagnostic ratio. Recently, a fascinating research study conducted in Scotland (Rutherford et al, 2016) showed prevalence rates across the genders at 5.5 boys for every 1 girl for very young children, 3.5:1 for children and adolescents overall, 2.3:1 for adolescents only, and 1.8:1 in adulthood. These findings indicate not only that the true prevalence of ASD in women is far higher than once thought, but also underlines that females are being diagnosed much later.
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In considering whether or not to pursue a diagnosis and think it is helpful to consider the advantages of a diagnosis, which we see as being these:
- Prior to receiving a diagnosis, many people project into the confusion of who they are a variety of labels that are self-critical and judgmental, including “weird,” “defective” and “psycho.” Each denoting in loud clashing tones, “something is wrong with me.” It can come as an enormous relief to discover that there is nothing “wrong,” much that is very right, and a lot that is different.
- A diagnosis has often been described by women as being “the missing piece of the jigsaw puzzle.” The diagnosis can end the seeking and the confusion to the question of “Who am I?” There is suddenly a literature-base, research findings and fascinating facts to answer lifelong questions.
- “Finding your Tribe.” Thanks to our burgeoning knowledge of brain function, we are at the dawn of the age of embracing neurodiversity. Embracing neurodiversity provides acceptance and understanding, especially amongst those who intimately know the reality of living with neurological difference.
- Once a person identifies with being on the spectrum, they can learn from others in their tribe about how to cope with other people’s ignorance, sensory issues, emotional dysregulation and alexithymia, amongst other things.
- Being aware of the diagnosis can assist the whole family, so that true understanding, nonjudgmental acceptance, accommodations and empathic attunement can occur.
To conclude, my own advice on whether or not to seek a diagnosis if you are curious, is to just do it, and the earlier the better. It answers the question and ends the speculation. It is my experience that our young autistic girls need to know about their difference as early as possible in a factual, celebratory and empathic way to allow them to grow into and appreciate who they are, instead of living by their own and others’ ignorant judgments.
Prof Tony Attwood, MPsych(Clin), PhD(Psych), MAPS, FCCP, Clinical Psychologist
Dr Michelle S Garnett, MPsych (Clin), PhD(Psych), MAPS, FCCP, Clinical Psychologist
AFFILIATION: Minds & Hearts: A Private Psychology Clinic for Autism Spectrum Conditions, Brisbane, Australia.
Rutherford, M. (2016). Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder, Autism, 20(5), 628-634.