Relief and grief: The Perth women waiting a lifetime for an ADHD diagnosis

When Claire Gasper was diagnosed with attention-deficit hyperactivity disorder two years ago, her family refused to acknowledge she had the condition.

She is one of a growing number of women receiving ADHD diagnoses later in life and while the 32-year-old was relieved to finally put a name to her disorder, others were not so positive.

Pera Edwards, 29, says her recent ADHD diagnosis has ended years of uncertainty and given her more confidence.

“My then-husband – he’s now my ex-husband – didn’t quite agree with the diagnosis and my parents flat-out disagreed,” she said.

“[My parents] said they didn’t think it was the right diagnosis and that they hadn’t seen anything from my childhood that was consistent with that, so that was hard for me.”

According to ADHD Australia, the condition is characterised by persistent patterns of inattentive, impulsive and sometimes hyperactive behaviour, and frequently, emotional regulation challenges.

An estimated one in 20 Australians have ADHD, most commonly boys aged 4-11, with around half the number of diagnoses for girls the same age.

But research suggests the number should be close to parity, and some estimates report as many as 75 per cent of women with the condition are undiagnosed, according to Canada’s Center for ADHD Awareness.

“The reason why I wasn’t diagnosed earlier was because there has been some misunderstanding of how ADHD presents in girls and women and it’s different to the stereotype,” Gasper said.

“Too often women’s concerns are dismissed and invalidated.”

University of Queensland researcher Kate Witteveen, who is undertaking an Australian-first study into the impact of ADHD on women, said many women’s doctors weren’t open to giving referrals for assessment.

“It is hard to say whether this was because the doctors didn’t accept the presence of ADHD in adults, or whether it was something more specific to these women,” she said.

University of Queensland researcher Dr Kate Witteveen.

“Anecdotally, the participants reported comments such as, ‘You’re too educated/successful to have ADHD.’

“These experiences of not being believed were reported to be very upsetting.”

Dr Witteveen said there were complex reasons for women being traditionally less diagnosed.

“However, in a recent study I conducted (not yet published), approximately 72 per cent of participants reported receiving another psychiatric diagnosis prior to receiving their ADHD diagnoses,” she said.

“Of those who reported having an additional diagnosis, 70 per cent had been diagnosed with anxiety and 50 per cent had been diagnosed with depression.

“As such, although I can’t say that women are unfairly bracketed into an anxiety or depression diagnosis, I can say that, in my study, it was commonly reported by women who had received a diagnosis of ADHD that they had previously received one of those diagnoses.”

She said there were similarly multiple contributing factors to the surge in adult female diagnoses including greater awareness that ADHD diagnoses were not confined to childhood, and that ADHD manifested in different ways: with different subtypes, and also gender and age-related factors.

Pera Edwards, 29, diagnosed last October, felt fortunate to have had a long-term doctor who had been open to helping, and who had told her that many women once diagnosed with depression or anxiety had later worked out they had ADHD.

Lanie Cottam, 44, went on a medical merry-go-round before before being diagnosed in her mid-thirties.

“I definitely feel like that because I went through times thinking, do I have anxiety or depression, do I have bipolar, do I have autism?” she said.

“Being able to identify now as ADHD has given more sense of self and more self-confidence.”

Lanie Cottam, 44, said she was sent on a medical merry-go-round for months before finally getting diagnosed around 10 years ago.

“It’s tough to navigate the system … onerous and expensive,” she said.

“The people who don’t have the abilities or the opportunities that I have, they’d be up shit creek.”

She described difficulty accessing medical help when she lived in Kalgoorlie, her luck in finding a psychiatrist who helped her navigate the system, and more difficulty finding a new provider when she moved to Perth. Also, some people didn’t take her condition seriously.

“When I first got diagnosed, I was working at [government department] and my boss said to me, ‘Oh well, my son has ADHD and he’s fine, he just takes his medication,’” she said.

“But then there are people who think, you know, it’s over-diagnosed and that it’s in your head.”

Witteveen said many of her subjects reported their diagnosis being “life-changing” and “validating”.

“However, it was also very common to have mixed feelings, and grief was also a common experience (alongside relief),” she said.

“For some, grief was retrospective – what could have been if they had known earlier – and prospective – the reality that they would experience challenges associated with ADHD throughout their life.”

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