‘I was 8 when things changed, but it was years before I knew the truth’

Elaina was eight when they first started “acting out” – but it was years before they finally got the answers they were looking for.

A parent-and-child duo have teamed up to raise money for mental health awareness after the younger of the pair struggled to be diagnosed with autism.

Aretha, 48, and Elaina, who uses they/them pronouns, are currently supporting Liptember, which is a month-long campaign to raise funds and awareness for women’s mental health.

Elaina, now 20, could feel a shift in their mental health when their paternal nan died when they were seven, with Aretha being able to notice the huge change a year later.

Elaina was very social in her younger years and quite often in charge of the play activities. “Elaina enjoyed being around people, always feeling emotions very strongly and was quite passionate about anything they was involved in,” Aretha told news.com.au.

But Aretha noticed a massive change in Elaina following Aretha’s split from her husband and the father of her children.

Elaina was diagnosed with autism. Picture: Supplied.

“I separated from Elaina’s father when they were eight and there was a significant change in their mood and we spent a lot of time in group therapy sessions learning about our feeling and how it was OK to express them which all seemed to be going well,” Aretha said.

“Things escalated once Elaina got to high school. We started see self-harm, school refusal, disappearing and disordered eating. Elaina was quite open to discussing they felt they may have depression or bipolar.”

Elaina tried Art Therapy and Head Space but neither completely offered the support that they needed. Elaina was being bullied and excluded at school, feeling completely alienated from the people around them.

It wasn’t until Elaina’s school referred the family to the Child & Adolescent Mental Health Service at the age of 14 that sparked a three-year journey to an Autism diagnosis.

Not every appointment went well – sometimes the family were turned away – and not everyone in the duo’s life believed that Elaina had Autism as they “didn’t act” like they had the neurodivergency.

In addition to being diagnosed with Autism, Elaina was also given diagnoses of ADHD, borderline personality disorder, depression, disordered eating, generalised anxiety disorder and trauma-induced agoraphobia.

Despite all of this, Elaina said it was a relief to finally be recognised as neurodivergent and experiencing a different version of “normal” to others.

“Once we got the diagnosis, I was relieved not only to know what was going on with me but to be able to access resources and supports to help make life a little less painful to navigate,” Elaina said.

Elaina’s mother felt similar, saying she wasn’t surprised but sad that it had taken so long when she had continuously tried to seek support.

Elaina found refuge in theatre, such as playing Puk in a Midsommer Night's Dream. Picture: Supplied

The pair believe mental health services need more support. Picture: Supplied.

“It is heartbreaking to see your children struggle and to not be able to enjoy life and have fun growing up,” Aretha said.

“As a parent you truly just want them to be happy. Everywhere you turn and the help you find is mostly only temporary. It is really difficult to get a child diagnosed with any sort of mental health issue.

“To be honest I felt let down by the lack of Mental Health Support.”

The pair both felt that, as someone who was assigned female at birth, Elaina had a harder time getting the diagnoses that would allow them to get the support they needed to live a well-rounded life.

“Absolutely, as an AFAB (assigned female at birth) autistic kid I was made to feel like I was ‘weird’ and not worthy of companionship from my fellow students or assistance from my teachers,” Elaina said.

“My AMAB (assigned male at birth) counterparts, however, were just ‘boys being boys’, they were just ‘excited’ and ‘energetic’. It’s easy to understand why AFAB autistic people learn to mask much earlier than AMAB autistic people.”

Meanwhile, while Aretha believes that autism presents differently in each person, the testing focuses on behavioural and sensory differences and with some people, particularly girls, those traits don’t manifest until later in life.

Aretha and Elaina, a parent and child duo, have put their hands up to raise money for Liptember. Picture: Supplied

As she did all she could to help her family, Aretha in turn left her own mental wellbeing on the sidelines.

She said she would often go to doctors for help parenting her children and they would want often want to sit down and talk about her.

She said it’s important to practice what you preach when it comes to your kids seeking support.

Life isn’t easy for Elaina – even going to the supermarket with fluorescent lights, people and sounds – but they finally have the support needed to make things a smoother run.

The pair, after a long journey, are now doing what they can to raise funds so others can get the support they need by throwing their support behind Liptember, a month-long initiative encouraging people to wear a pop of colour to start conversations about mental health.

“Funding for Mental Health Support is incredibly limited, wait lists are huge and a lot of services like CAMHS are only short term services,” Aretha said.

“Bulk Billing in this sector is almost non-existent. Mental Health is also a spectrum and there are different support required based on gender experiences, disability experience and neurodiversity experience.

“I love Liptember you choose your lipstick either based on your current mood or the image you want to portray for the day, and I feel lipstick really reflects the masking that goes on with mental health and autism.”

Elaina said not only does Liptember raise funds for services but money also goes towards education for people who need to learn more.

Sharing their story isn’t easy but Elaina hopes one person will feel seen after reading it.

“I’ve chosen to share my story so people like me can read, watch or listen to what I’ve been through and how I’ve overcome whatever life has thrown at me, if hearing or reading my story makes them feel even slightly less alone it will have been worth it,” Elaina said.

“It’s okay to ask for help, recognising that you are struggling is not weakness, it is strength. It takes strength to turn to someone you trust and say ‘I need your help’.

“Don’t let anyone tell you that you are weak for needing assistance.”