Katie Horneshaw raises autistic nephew while sister Anna serves jail time
A month ago, my five-year-old boy, Ollie, was diagnosed with an Autism Spectrum Disorder.
Ollie is my incarcerated sister Anna’s biological child. Born in custody and handed to me as a noisy newborn, he was the light at the end of a nightmare journey that had included mental illness, addiction and psychosis, and culminated in my sister taking a man’s life.
Ollie was our miracle boy – a bright and bouncy baby born out of neonatal chaos. Now, he is a delightful and gregarious child, forever seeking out the attentions of others, bursting with strange and fantastical stories to tell.
But at two years old, I had begun to notice in him behaviours that didn’t align with his peers. He would become so absorbed in his private world on the floor with his toys, muttering and making repetitive noises to himself, that no amount of calling his name or gesturing could hope to gain his attention. He needed motion to calm down and would melt into loud despair at the slightest divergence from a pre-planned activity.
Ollie wanted so badly to play with other children, but the kids at daycare would grow frustrated with his long lists of rules and stipulations for “his game”. He would often leave care exhausted and in tears: unable to relinquish either his need to be in control or his desire for playmates.
By the time Ollie received his diagnosis, I had long since accepted that he was likely autistic and knew that a ‘label’ would assist us in getting him the support he needed through the NDIS.
So, for my family and I, hearing those words – “We are recommending a diagnosis of Autism Spectrum Disorder” – was an immense relief. But it was also a sad day.
Anna was labelled the ‘weird kid’
As a child, Anna had displayed many of the same traits as Ollie. The stream-of-consciousness chattering, the need to withdraw for hours into her own private world, the ritualised habits, like traipsing endlessly around the edges of the lounge room carpet as music would play – Anna’s form of “dancing”.
But Anna’s experience growing up had been very different to Ollie’s. The chattering that so charmed the adults in her life was dismissed by her peers as annoying, and Anna was quickly labelled “the weird kid”. She withdrew into silence at the back of the classroom, and her teachers largely ignored her, reserving their energy for the disruptive students.
It was only much later that Mum and Dad and I began to suspect that Anna may be on the spectrum.
‘Bullied and isolated’
And so, my sister’s life was built upon a foundation of social rejection and hurt. “I was bullied and isolated and I had nowhere to put these tough emotions … I had no way to cope,” she has since told me.
Anna’s social and emotional difficulties led to depression and anxiety and by the time she was in her early 20s she was attempting to kill the pain with mammoth amounts of alcohol and drugs.
Now, Anna is in prison.
After years of desperately seeking a way out of her psychological hell – through drug use, self-harm, suicide attempts and increasing violence – Anna descended into psychosis and delusion. In 2015, she surrendered to her demons and killed her elderly housemate, a kind gentleman who had become a father-figure. She is serving what my family believes to be a fair sentence of 13 to 17 years.
Both Mum and I have written extensively about the lead-up to that horrific day, about Mum’s decade-long crusade to find help for her daughter – a crusade that would culminate in a frantic search, as Anna’s mental state deteriorated and tragedy seemed inevitable, to find a locked residential care facility which could keep my sister safe.
The search was unsuccessful.
As it turned out, a long-term facility of that nature did exist, but not ‘on the outside’. Anna is now receiving the care she needs and learning to maintain healthy relationships in prison. It is deeply unfair to her victim that she wasn’t listened to when she wound up in the right place through the most horrifically wrong means.
I knew it wasn’t Anna’s autism that had turned her life upside down – Anna’s autism contributes to making her the wonderfully witty, sardonic, analytical person that she is. It was the fact that she never received the right support to help her navigate a world that expects autistic people to behave like everyone else.
Educational and developmental psychologist Daniel Baldacchino explains just how important early intervention is for at-risk kids.
“Evidence shows that the things children learn in their early years ‘set up’ a psychological foundation which will determine their lifelong health and developmental outcomes,” he said.
“Early intervention supports like occupational therapy, psychology and speech pathology can help children to establish a foundation of adaptive social, emotional and behavioural skills, and a toolkit of healthy coping skills for when painful feelings arise.”
Early intervention can alter the course of a young life, reducing the likelihood that they will turn to substance use, violence and self-harm down the track.
When I first started to notice Ollie’s differences, I was hit with a wall of grief. I had known that for Ollie, developmental delays would be likely due to his neonatal exposure to drugs and stress, but as he had raced to meet his toddler milestones early, I had allowed myself to invest in the fantasy that maybe, just maybe, he would have a ‘normal’ childhood.
As Ollie’s differences became more pronounced, I grieved for the loss of this ‘normal’ life, the one with birthday party invites and girlfriends and without occupational therapists or medications.
And I was afraid. In Ollie, I saw my sister; four years old and still bright and hopeful; and I envisioned him contending with the same confusions when peers did not like him, and suffering the same disappointments when the birthday invites did not arrive.
Autism presents differently in different kids. Ollie has an outstanding vocabulary and is desperate for friends. But his friends must play to his exact specifications or he descends into rage, and he talks only when he wants to and about things he wants to talk about.
I was not going to stop till I got him on the NDIS. With that support, he could access thousands of dollars’ worth of ongoing funding for psychologists, occupational therapists and clinicians.
If it wasn’t for the memory of my sister’s experience flashing away in my mind – a giant fluorescent warning sign – I may have waved the white flag. But my parents, too, had once been told these things. Anna is smart. She’s a great talker. She’s affectionate. She will make friends eventually.
Mum and I booked him into a paediatrician, who finally saw what we saw.
“I’m going to refer him for an ASD assessment,” she announced, as Ollie attempted to climb from her chair onto her back.
And finally, those hallowed words from his assessors: “We’ve suggested a diagnosis of ASD at a Level 2 (in the middle). You will be able to apply for a wide range of ongoing early intervention supports for him through the NDIS.”
In that moment I saw Ollie’s story, twisting and winding its way into its own unique kaleidoscope, no longer tethered to the history of his mother, unbound from the mistakes of the past.
Early intervention
Ollie will get a chance that Anna never did.
There are so many families who could benefit early intervention. Especially families like ours, with little children who have parents in jail.
Daniel Baldacchino has spent his career working to help keep at-risk people, including those who have had family members in prison, living healthy and productive lives.
“My previous work was with people whose maladaptive behaviour patterns were already entrenched. People at that stage require intensive interventions to learn healthier coping skills. Now, I work with children like Ollie to prevent unhealthy coping skills such as substance use from emerging in the first place. It’s very hopeful work.”
But even in the current climate, 30 years after Anna’s early years, Daniel acknowledges that finding the right supports can be a complex task that requires an understanding of the system and good advocacy skills.
For those who feel that they could benefit from early intervention and need extra support, Daniel has provided a list of resources at the end of the article.
Anna never did get that diagnosis: Even later in life, clinicians diagnosed her variously with bipolar, borderline personality disorder and schizoaffective disorder. But we (and she) now believe firmly that she is on the spectrum.
Anna didn’t get the chance to embrace her neurodiversity. But Ollie, with the help of his wonderful kinder teachers, is already learning about his many unique strengths, including his neatness and love of words. He states with pride that he is autistic, and loves learning about autistic ‘superheroes’. He plans to marry Greta Thunberg.
Anna, who has watched her child grow through a combination of visits, phone calls and photos, is incredibly proud of her little boy.
You can hear Katie’s story on the I Swear I Never podcast now.
Early Intervention resources for families with criminogenic needs:
SHINE for Kids is a registered charity supporting children with a parent in the criminal justice system that provide services in NSW, the ACT, Victoria and Queensland.
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Caraniche has many counselling and support services available.
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