Mum with autism on 'horrific' 40-year wait for diagnosis

'It was horrific... just not understanding why I was different.'

An Arbroath mum with autism has opened up about her “horrific” 40-year wait to be diagnosed with the condition.

Support worker Charlene Morton recalled how she couldn’t understand why she felt different growing up and has even witnessed her three daughters, who also have the condition, go through their own difficult journeys.

She was diagnosed in 2020 after referring herself to the GP for help.

“It’s been a big relief,” she said.

As a child she struggled to make friends, her mother took her to a doctor who said Charlene needed to be ‘socialised’.

She said: “It was horrific, just not understanding why I was different, why I wasn’t the same as everyone else.

“My mum pushed me into groups and made me go out with friends.

“I would have had a better understanding of myself, friendships and things. I think it would have made more people understanding of me and understand why I behave in the way I do too.”

It comes as more women and girls than ever before are being told they have autism in Scotland – despite the difficulty in getting a diagnosis compared with men.

That’s according to the National Autistic Society, which said it’s often assumed autistic people are men and boys, due to stereotypes.

In honour of International Women’s Day, the charity is calling for better awareness.

Charlene has three daughters; Megan, 21, Shannon, 19 and 11-year-old Demi-Leigh.

‘Misdiagnosis after misdiagnosis’

Each was eventually diagnosed with autism too but Charlene recalled they faced “misdiagnosis after misdiagnosis.”

After Charlene noticed Megan was exhibiting behavioural issues, she was given diagnoses of PTSD and IBS and “sent away for five years.”

“It was misdiagnosis, misdiagnosis and finally getting, a slip of paper and contact Parent to Parent. That was it.

“We mask, pretend and go about life being something we are not, copycat and follow what everyone else is doing. You conform to what is expected and you can become overwhelmed and internalise a lot of things.”

The National Autistic Society say it’s due to stereotyping.

Suzi Martin, External Affairs Manager said: “Autistic traits in women and girls are not as well understood and that’s partly because they are very good at masking.

“Masking is when an autistic individual copies other people’s behaviour in order to fit in as they see it.

“And for that reason, autism in women and girls is not being picked up as readily as it is as in boys and men.”

Unlike in England, health boards in Scotland don’t collect data on autism diagnoses.

However, recent studies have shown that just one woman is diagnosed for every three men across Scotland.

Charlene, who now works as a support worker to help other families, says things need to change so that everyone can understand themselves.

She said: “I was left crying in a car park after she had her diagnoses and for me, I wouldn’t want anyone else to go through that on their own, so know I’ll stand in the car park and cry with the parent.

“As a mum of autistic children, it’s a long journey you’re on, and when I go out to visit families, I can see a light click on in their eyes.”

“If you understand yourself and understand your children and their behaviours, it just goes a long way to having a much easier life.”

STV News is now on WhatsApp

Get all the latest news from around the country

Follow STV News
Follow STV News on WhatsApp

Scan the QR code on your mobile device for all the latest news from around the country

WhatsApp channel QR Code