Why seek a Formal Diagnosis of Autism?

Many autistic women* deliberate about whether or not they should seek a formal diagnosis of autism, weighing up the potential costs and benefits. Often, after they have made that sometimes difficult and painful decision to initiate a diagnostic assessment for themselves, there is a long and time-consuming road ahead before they find someone with the knowledge and experience to make an accurate diagnosis. Research shows that at the time of writing, the average age of being diagnosed autistic for boys with fluent speech around the world is 8 years old, whilst for girls, the average age is 12 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, ADHD, selective mutism, depression including bipolar disorder, gender dysphoria, obsessive-compulsive disorder, or anorexia nervosa. 
• 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 information on autism on the Internet, and discovering the female presentation of autism, and resonating so well with those descriptions.

Prevalence Rates

Historically, far fewer females have been recognised as being autistic compared to males, with the ratio standing at approximately one female for every 4 males since the early 1990s. However, as clinicians who specialise in autism, we suspected that we would see a levelling out of this gender ratio. 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 autism in women is far higher than once thought, but also underline that females are being diagnosed much later.

Potential Advantages of a Formal Diagnosis

In considering whether to pursue a formal diagnosis we think it is helpful to consider the advantages of a diagnosis, which we see as being these:

• Relief. Prior to receiving a formal diagnosis, many people project into the confusion of who they are a variety of labels that are self-critical and judgemental, including “weird,” “defective” and “psycho.” Each label denotes in loud clashing tones, “something is wrong with me.” It can come as an enormous relief to discover that there is nothing “wrong,” indeed much that is very right, and a lot that is different, not defective.
• Clarity. A diagnosis has often been described by women as being “a watershed moment” along their pathway to self-acceptance. The diagnosis can end the seeking of an answer to the question of “Who am I?” There is suddenly a literature base to access, research findings to read and fascinating facts about one’s own neurology to answer lifelong questions regarding self-identity.
• Belonging. Maura Campbell has put this so well in her words, “Finding your Tribe”  (Cook & Garnett, 2020). Thanks to our burgeoning knowledge of brain function, we are at the dawn of the age of embracing neurodiversity. Embracing neurodiversity provides self-acceptance and understanding, especially among those who intimately know the reality of living with neurological differences. We find that many women who fully accept being autistic gravitate toward other neurodiverse women for friendship and support. These women “just get it” there is no need for self-explanation, and there is often a relaxation into safety in the relationship in a way that is new and welcome.
• Strategies. Once a person identifies as being autistic, they can learn from others in their tribe about how to cope with their sensory issues, emotional dysregulation, executive functioning difficulties, alexithymia, social exhaustion, and other people’s ignorance about autism.
• Family. Being aware of the diagnosis can assist the whole family, so that true understanding, nonjudgmental acceptance, accommodations, and empathic attunement can occur.

Conclusions

To conclude, our own advice on whether to seek a diagnosis, is to just do it, and the earlier the better. It answers the question and ends the uncertainty and speculation. It is our experience that autistic women need to know about their neurological 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 judgements.

Where to From Here?

Whether you are autistic yourself, are a Mother of an autistic girl, or are seeking formal recognition of autism for yourself or your daughter, we recommend our on-demand courses Autistic Girls and Autistic Women. We give more information on the female presentation of autism, including recent research on females and strategies autistic girls and women have found helpful for navigating the social, sensory, identity, emotional and executive challenges that can present with autism.

*Wherever the words women, woman, girl, and female are used in this article, we mean the gender assigned at birth to that individual.

References

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.

Cook, B. & Garnett, M (Eds.). (2018), Spectrum Women*: Walking to the Beat of Autism. JKP: London.

*Recent Review of Spectrum Women book on Amazon:

“I’m currently waiting for my Autism identification and have read over 20 books as I research neurodiversity and autism diagnosis for myself. If you’ve already read the basics of autism and the identifying behaviours, you might well be looking for a positive experience. This is it."

"In this book 16 women come together (not 15?) from around the world to pool their knowledge and share their personal and professional experiences of the cluster of behaviours that is currently labelled ‘high functioning autism or Aspergers'"

"I felt excited and empowered by this book."

"If you download a sample from Amazon, don’t be put off by an unusual and bouncy introduction, read on. A brilliant oasis of inspiration, thank you so much, I needed this!"