New research shows that the ratio between girls and boys with autism is much closer than once thought. It's understood that the current ratio of males to females with autism is 4 to 1, however, new studies suggests it could be as low as 2 to 1. While this gap is slowly closing, women over the age of forty are becoming one of the key groups to seek diagnosis.
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TRANSCRIPT
For many people, understanding who you are begins at an early age.
But what if you lived most of your life feeling different in a way that you don't have the words to explain?
That's been the experience for many women like Naomi.
"Well, about four years ago, I was going through a really hard time in life with career burnout and just some other major transitions around a long-term relationship breakdown and some family conflicts. And I was really, really struggling and I started seeing a new psychologist. And then after a few months of seeing her, she said to me that she thought that I could be neurodivergent. And it was actually such a massive shock to me to be told this because I'd never suspected it, even though I was very well aware I'd struggled throughout my life. But I think the reason that I just hadn't suspected it was because I had a very limited and stereotyped understanding of what autism and ADHD were, and I just didn't think that that could be me."
At 51 years old, Naomi is now able to look back and recognise the signs of her neurodivergence.
But she says the years spent unknowing meant the impact of being negatively labelled by her peers, stayed with her.
"You know, growing up neurodivergent, being different to other children and people not really understanding why, you really - you get a lot of criticism and negative feedback - and regularly too. It really doesn't feel good. And when you're growing up being told these things about you, these negative things, they're things that you really can't help. They're just part of who you are. It causes a lot of confusion. And for me personally, this resulted in a really strong desire to try to be perfect so no one could criticise me. I just wanted to go under the radar so I could fit in and be like everyone else."
The feeling of grief that comes with receiving a diagnosis is one that clinical psychologist Dr Tamara Joy says is common.
"Often women are told they're too much, you're too emotional because of the emotion dysregulation difficulties with autism and ADHD. So that's a very common narrative that they're told throughout their lives. Again, they're defective. And so in terms of the grief side of things, it's something I always talk to women that I help with the diagnosis is that there can be a real significant grief process that happens following receiving a diagnosis because it can explain why they've had so many difficulties throughout their life and people can become angry and upset that this wasn't picked up earlier in their life by parents or teachers or other health professionals that they've seen. That they've done a whole lot of therapy that doesn't really work for them or they tried medications that aren't really helpful for what they're going through, et cetera. And so it's a whole grief process that has many different emotions that come up anger, depression, just angst for the younger selves, what they've had to experience. So that I think grief process is very almost universal that people sort of go through that their life might've taken a different, much easier path had they known this about themselves and been able to access the support and care that they needed and had that understanding around them."
Dr Joy says that there are many complicated factors involved in diagnosing a neurodevelopmental condition, such as autism and ADHD.
Traditionally, she says it has been narrowly defined as affecting one in ten thousand people, and something that impacts mainly boys.
This focus on men and boys has meant that women and girls were not centred in research for neurodevelopmental conditions for a long time - and that they tend to be diagnosed at a later age.
She says that's because traits common among girls and women are now being better identified.
"Generally girls tended to have more superficial social skills. So they might typically have one friend that it would almost become a special interest to them and they would be very attached to that one friend. And so from the outside, it would look like, well, they have friends, whereas boys might have difficulties even making one friend and being more alone or aloof ... Perhaps they have better superficial social skills and tend to go under the radar and can mask some of their difficulties. But also often because autism has been so commonly associated with boys and men that girls were often diagnosed with other conditions like depression or social anxiety or conditions like personality disorders like borderline personality disorder. So they've often been put into a different bucket because clinicians, teachers, parents, et cetera, didn't realise that autism could commonly occur in girls."
As research continues to evolve, Dr Joy says the shifting narratives around autism and ADHD can result in people gaining a better understanding of themselves, without shame.
And that it has the opportunity to break down the barriers and stereotypes that have often resulted in preventing diagnosis in women.
Naomi is now a neuroaffirming counsellor, working for Amaze on the Autism Connect Helpline which is a national helpline for anyone in the autistic community seeking support and resources.
She has no regrets about discovering her neurodivergent identity.
"I think that one of the things that people often experience as a neurodivergent person, if you're diagnosed later in life, is that sense that you are an outsider, that you're a bit different, you're a bit weird and strange, that you're awkward maybe, or maybe that everyone else got the manual on how to do social communication and you just didn't get the memo. But when you're with others with the same brain style as you, things flow and that gives you more confidence in yourself as well ... We're all really unique, but every single person, no matter what brain type you've got, you've got your own style. And this kind of diversity, I mean, it makes society a richer, more wonderful place."
