Reports of spike in diagnosis of women during pandemic

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The number of women seeking a private diagnosis for conditions linked to autism has climbed during the pandemic as experts call for better specialist training for GPs and frontline staff.

Independent consultant Dr John Forrester has seen his caseload increase dramatically during lockdown with more women being seen for autism spectrum disorder (ASD). “The last six months has been my busiest period in 10 years, and waiting times have been pushed from two to eight weeks,” said the Aberdeen-based consultant, who works with patients across Scotland.

“This is probably due to the mental health impact of the pandemic and recent strain on NHS services but there is a growing awareness of ASD in women.”

Forrester said there was “no easy route for adults, women and men, to access an assessment unless they have a learning disability or another mental health problem”.

“In the past few years, my referrals for women have increased dramatically. About three-quarters of the diagnostic work I do now is with women,” he added.

“For intellectually-able adults who don’t have any cognitive impairment or learning disability, there’s no referral route unless they have secondary mental health condition. If they’re not reporting significant anxiety, depression or other behavioural problems, they are not likely to be referred for assessment.” Forrester believes there is currently not “sufficient training” for GPs and medical staff around ASD. He said: “We need a greater awareness in frontline practitioners and GPs about the subtle ways people can present as ASD.

“Most importantly, there needs to be a route for proper diagnostic assessment. This should be multi-disciplinary, including psychology, psychiatry, perhaps speech and language therapy, and an autism specialist. Sometimes practitioners unfamiliar with ASD will overlook it.”

Dr Catriona Stewart, organisational development lead at the Scottish Women’s Autism Network, has seen the number of women seeking advice about ASD diagnosis steadily increase.

“It can be very difficult for women to access a diagnosis,” she said. “Masking, a survival strategy that some autistic people develop as children to fit in, is generally more prevalent in women and is a key factor in late diagnosis.

“Even when women have been assessed, they might be told they don’t meet the criteria. We increasingly hear from women who are frustrated and distressed, having often felt belittled or dismissed in that process.”

Stewart described the current diagnostic assessment process as “flawed”.

he added: “It should be mandatory for everyone working in any service, health, education or social services, to be properly trained to support those with high-level autism.

“The training right now is mostly rubbish. I’d also like to see more autistic professionals included in assessment teams to help inform clinicians and also support women.”

Calls to the Scottish Autism helpline relating to diagnosis increased 10% in the past year, to 610 cases. There have been 5,000 calls since last June, double the number the organisation would normally receive.

Joanna Panese, practice and community development lead at Scottish Autism, said: “Some adults don’t notice autism indicators in themselves until later in life, or it can be triggered by a family member, such as a child, being diagnosed.

“We receive a lot of calls relating to late diagnosis and know there are still a lot of adults sitting on referral pathways because they can find it difficult to get past that initial GP appointment. Some GPS are very proactive compared to others.” Panese recommends “a co-ordinated approach across Scotland that provides clear and fair access to diagnostic pathways”, adding: “We also need to make sure people have the right access to post-diagnostic support, which is offered by numerous organisations and voluntary groups we work with across Scotland.

“Many people have felt additional pressure on their mental health and wellbeing due to the pandemic and that may have triggered a suggestion that a diagnosis would be helpful in terms of overcoming some of those issues.”

It amazes me that people think I wouldn’t want an answer to why I’ve been struggling my whole life.

It's about time! Honestly, I suspect more women of being on the spectrum than what they've been reporting for the last two decades.