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Autism

Why a Late Diagnosis of Autism Leads to a Mix of Emotions

Relief and regret are common responses to a later-in-life diagnosis.

Key points

  • Women with autism experience a range of emotions after diagnosis which can take months or years to come to terms with.
  • Girls and women are later-diagnosed than males and often struggle through life as a result.
  • Many women with autism pass as neurotypical due to their ability to camouflage their autistic symptoms.

In the last week, two high profile women in the UK have talked about the impact that having an autism diagnosis has had on their life. Melanie Sykes, a 51 year old television presenter, describes her diagnosis as “life affirming”. Christine McGuinness, a model and autism awareness campaigner, following the diagnosis of her three children, was diagnosed in her thirties. She describes her diagnosis as being a huge relief and an opportunity to understand herself better.

Christine McGuinness describes a sense of sadness for her younger self and the struggles she faced whilst Melanie Sykes talks about a sense of mourning. Like myself and the clients I work with, this mix of emotions is common in late diagnosed women. Although having a diagnosis means you can begin to move forward with the knowledge that you experience the world in a particular way, there’s often a regret that you didn’t have this knowledge earlier. How much easier might life have been if you’d had this knowledge throughout childhood, into your teens and into your adult life?

Edu Grande, Unsplash
Source: Edu Grande, Unsplash

Both women have autistic children, as do many of my clients. Although there is an increasing awareness of the fact that girls and women with autism present differently to boys and men, given that they tend to adopt far more “masking” behaviours in an attempt to pass as neurotypical and have special and obsessive interests which are often considered “normal” for girls of their age1, women are less likely to be referred for clinical assessment2.

Traditionally, autism was seen as a male condition and diagnostic criteria are still weighted towards males. Many girls have slipped through the net to become adult women who, despite their struggles in a variety of areas, have never received a diagnosis. Having an autistic child is one avenue for mothers to learn about the condition and explore whether they, too, might be autistic.

Particularly for girls and women who have learned to camouflage their symptoms effectively, and females tend to be socially driven to do so, their autism can remain hidden, even from those closest to them. Many girls are considered shy or opinionated, nerdy or with learning challenges, quirky, different or a loner. Girls and women with autism are at higher risk of abuse, eating disorders, anxiety, suicidality and depression3,4 and all of these symptoms can be explained without bringing autism into the equation. Like Melanie Sykes and Christine McGuinness, women with autism also experience sensory issues and difficulties in a variety of situations. School, university, work and mothering can all be extremely challenging when you’re socially uncomfortable and are struggling to understand what other people mean.

It's fantastic that these two women have shared their stories and are living proof not only that you can have a good life and successful career when you have autism, but that, for so many people, it really is a hidden condition. They also show the value of receiving an adult diagnosis.

Many women describe a huge sense of relief upon finding out that autism is a part of their experience. Finding out you have autism can be very overwhelming, and it can take months, or even years, to come to terms with a diagnosis, particularly if you’ve lived an entire life without that knowledge. There are days you’ll feel relieved, days when you’ll feel full of regret, and other days when you’ll question the validity of a diagnosis. All of these feelings are completely normal, and it’s important to know that your diagnosis is the start of a completely new journey for you. One on which you can be more accepting, more self-aware and more committed to shaping your life according to your needs.

Receiving an autism diagnosis as an adult woman can involve a long wait and considerable financial outlay and you are advised to visit your general practitioner in the first instance to ask for a psychiatric referral. As awareness of women with autism increases, hopefully securing a diagnosis in this way will become easier. In the meantime, for those who think they may qualify for a diagnosis. researching the condition, looking back at your own childhood for signs of autism, asking your parents if they’re still alive if they noticed autistic traits in you as a child and beginning to look at some of your behaviours in relation to potential autism will help increase your self-awareness.

References

1. Gould, J & Ashton-Smith, J (2011) Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum, Good Autism Practice, 12(1), p34-41

2. Beck, JS, Lundwall, RZ, Gabrielsen, T, Cox, JC, South, M (2020) Looking good but feeling bad: "camouflaging" behaviours and mental health in women with autistic traits, Autism, 24(4), p809-821

3. Lai, M-C, Kassee, C, Besney, R, et al. (2019) Prevalence of co-occurring mental health diagnoses in the autism population: A systematic review and meta-analysis, Lancet Psychiatry, 6(10), p819=829

4. Cassidy, S, Bradley, L, Shaw, R, Baron-Cohen, S (2018) Risk markers for suicidality in autistic adults, Molecular Autism, 9(1), Article 42

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