By Tracey Stewart
Tracey Stewart says her daughter Jessica was a challenging baby, but she never considered she might be autistic. (ABC News: Tracey Stewart)
My daughter came into the world in dramatic fashion in November 1994.
- Tracey Stewart had no idea her daughter was autistic
- She was not diagnosed until the age of 23
- Doctors say girls mask symptoms, making diagnosis harder
I had been hospitalised with pre-eclampsia and she was delivered via an unplanned caesarean at very short notice.
Only a few generations back it would have been a pregnancy neither of us would have survived — but the greatest threat to her life was to come more than 20 years later.
From the very beginning, Jessica was somewhat at odds with the world. She seldom slept longer than an hour, screamed from 4:00pm until midnight with colic and simply didn’t subscribe to the “How a Child Should Develop” handbook.
But Jessica was extraordinarily entertaining and charged into her new life. She was a challenging baby and infant — she was hyperactive and it was difficult to grab her attention when she was focussed on something else.
Jessica slept poorly as a baby and suffered from colic, but was sociable and entertaining. (Supplied: Tracey Stewart)
Yet there was nothing in Jessica’s behaviour that married with the defined autism warning signals of the time.
She was very sociable, didn’t have an obvious intense interest in anything, could be empathetic and nurturing, and was able to make eye contact with people.
A diagnosis out of the blue
Now, 23 years later, Jessica and I are answering hours of questions from a psychologist and then a psychiatrist — continually adding to the ticked boxes identifying her as autistic.
Not once through all the difficulties she had endured, through the multiple suggested diagnoses and conflicting information received throughout the years, had I considered that Jessica was autistic.
However, as the differences of how autism presents in girls were explained to me, I was astonished at all the clues I had missed.
I was deeply saddened at the devastating impact the lack of diagnosis had on my daughter.
And I was angry at the systems which had neglected, misdiagnosed and marginalised my daughter because her symptoms were not those typically identified in boys.
The unseen clues
As she journeyed through primary school, Jessica had difficulties connecting with her peers and generally had only one or two friends at a time.
But at the same time, she was very sociable and would happily speak to strangers.
Psychologist Ritu Campbell specialises in the diagnosis of autism and says the markers of the disorder are often not detected in girls in early life because they are adept at what is known as “social masking”.
“For example, a female with autism may have learned to rehearse common conversational exchanges before entering a social situation,” Dr Campbell says.
Common signs of autism in girls:
- A desire to interact with others
- A tendency to mimic others in social situations
- Passivity, often perceived as “just being shy”
- One or few close friendships
- A tendency to “camouflage” difficulties
- Developmentally appropriate language skills
- A vivid imagination
- Less severe and frequent repetitive behaviours
She says undiagnosed autistic girls are often unaware that others don’t have to engage in that same social masking process.
This is because girls are more motivated to “fit in” socially and are societally conditioned from an early age to be more compliant, polite and passive.
Dr Campbell says social masking can sometimes conceal the classic obsessive interests associated with autism spectrum disorder, as well as the issue with eye contact.
“Rather than talking obsessively about something they’re interested in, they may wait until they get home and then research it on their computer,” she says.
“So they might well be engaging in intense or fixated interests, but perhaps in a less public manner”.
Those interests are often more closely aligned to those of peers — animals, celebrity, music — so again, there were no red flags with Jess.
Social isolation and lack of focus
Although Jessica had been articulate from a very early age, questioning and intelligent, she struggled with written language at school.
Despite my pleas, she received no individualised support and not only fell way behind in her schoolwork but fell into what I later recognised as depression.
Jessica holidaying in Scotland, before she was diagnosed with autism at the age of 23. (Supplied: Tracey Stewart)
She withdrew from the world and for a while our effervescent, confident child was barely recognisable.
I had put Jessica’s social issues down to her being separated from her natural peers due to her academic difficulties.
I now see that what I had explained away as a by-product of her learning difficulties was, in fact, her autism.
A life starts to unravel
Jessica had seemed to bounce back through her teens.
She had been involved in Scouts for 10 years and travelled to national events, joining in activities and more readily connecting with her peers than she had done at school.
Beyond school, Jessica achieved a Certificate IV in design at TAFE and was granted a place at university to continue her studies.
But then her life began to unravel.
Jessica says “everything finally made sense” when she received her autism dignosis. (Supplied: Tracey Stewart)
She was living away from home and recovering from a highly damaging relationship, which compounded years of deleterious school life.
She fell into deep depression, coupled with high anxiety, ultimately leading to two suicide attempts (which we only learned about later).
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Fiercely determined to make her own way through her nightmare, we were unaware of the trauma and confusion Jessica was enduring and powerless to help.
Her volatile behaviour and dysfunction were extremely difficult to understand. We had no access to what was now, as an adult, her private life.
When we finally coaxed her home and supported her accessing mental health care, she was highly reactive and desperately fragile.
She could be hostile one minute and heartbreakingly despairing the next.
It wasn’t practicable for me to stay home from work every day to watch over her, especially as she mostly slept during the day. But I would have dreadful days at work experiencing rising panic that she would make another attempt on her life.
Misdiagnosis and chance encounters
Her first diagnosis was that she was suffering from borderline personality disorder.
Less than a fortnight later she was told she was “most likely” bipolar type II.
It was a counsellor who first suggested Jessica might be on the spectrum, but neither she nor I felt this could be the case, based on the knowledge we had at the time.
It was only through a series of chance encounters and media reports that we came to see that some of Jessica’s traits and difficulties could, in fact, be attributed to autism — a diagnosis later confirmed by health professionals.
Jessica startles very easily and over-reacts to stimuli, and the distress of sensory overload — especially sound — is akin to physical pain.
She has set routines and is unsettled by sudden changes, finding it difficult to moderate her emotions.
We can now see her blunt statements, occasional inappropriate timing and the way she doesn’t always understand the natural to-and-fro of conversation are all easily identified as part of an autistic life.
But alongside these, Jessica has enormous capacity for compassion and gravitates to those who are vulnerable to offer them kindness.
“You sort of see people for what’s really going on inside more, and the sort of simpler way of seeing things through love and feelings, not maybe the complexities of everything,” she says.
“I think it’s more the fact that people lie with their facial expressions not just with their words, that’s what confuses you. And in a lot of ways I see things, but then in other ways I miss them.”
Dr Campbell says social masking requires considerable effort and this usually results in extreme exhaustion, necessitating periods of social isolation.
“Some of my clients use the term ‘peopling’, so when they’ve been ‘peopling’ for a long time, that they would then like to have a period of not ‘peopling’,” she says.
This strikes a chord with Jessica, who says she is constantly surprised at how exhausting socialising can be for her.
‘Everything finally made sense’
I was brought to tears during the assessment sessions with the mental health professionals as they asked question after question, each confirming the autism diagnosis.
I have grieved for the person she may have been if she had received the support and assistance she needed at the time.
I feel deep sadness for the complex confusion she has battled with and her exhausting efforts to be a chameleon.
Jessica says she was offended when it was first suggested that she may be on the autism spectrum, because she felt she was social and articulate.
“But the more I sort of thought about it … everything finally made sense,” she says.
“I always thought I was one odd person on the planet and finally everything fell into place — every tiny little thing.
“I did actually get quite depressed afterwards, which I was quite shocked by, because it was sort of the realisation that a lot of things I’ve been hoping to change were never going to change and I was always going to have a difficult life to some degree.”
A lost generation of women
Dr Ritu says the health profession is heading in the right direction in diagnosing autistic girls.
“There is a growing body of research that refers to the lost generation of females who weren’t diagnosed with autism in their younger years, really because the more typically male presentation was more readily recognised,” she says.
“My clients describe the process of being diagnosed with ASD as life-changing.
“Often it helps explain their life experiences and I guess it empowers them to appreciate their own neurological differences.
“The personal insight helps them in not only developing self-compassion but it helps their loved ones to understand them and their relationship with them as well.”
For us, the significance of the autism diagnosis cannot be overstated.
Jessica has been accepted onto the National Disability Insurance Scheme (NDIS) and we have great hope that she will soon receive specialist help and support.
“I think, in a weird way, I kind of love it now,” she says.
“I definitely feel like that’s who I am … I think completely different to other people and I kind of love that.”