I am an Autistic Orphan
Dedicated to my late brother Ryan Stewart (1985 - 2024)
There's a part of autism that often goes unspoken yet is crucial to address – the experience of being an orphan with autism. I lost my mother when I was in my 20s, a decade before I received my autism diagnosis.
Throughout my life, she was the only one who tried to understand me and encouraged me that I was just right as I was. Despite having three other children, she took extra time to explain everything I didn't know. She reassured me her inability to understand me was a failing on her part - not mine. Her support and genuine care for my perspective on the world gave me resilience despite other family members calling me spoiled, shy, lazy, OCD, and attention-seeking. My mum braved so much from the family who tried to push what they thought I should be. I’ll never know to what extent. All I know is that when she died, they didn’t care, and I didn't see 99% of them again. Others didn't like that I spoke up about abuse and that I refused to take a role they wanted to force on me.
I’m told my resiliency is extraordinary; I hear it almost too often.
It’s important to remember that no matter what I accomplish, I still feel like the 6-year-old girl who didn’t understand why people were being mean to her and need her reassurance and unconditional care and support. My resilience is just the echoing words of my mum that I've committed as part of my consciousness.
It’s been nearly ten years without her, and in my meltdowns, I still call out for her. It’s a cruel reality knowing that the years I have with my kids may be the only years of their lives that they feel understood and enough. As a disabled mother, this terrifies me, that the stress I am under will impact my duration and quality of time with them.
My every day is making sure I'm giving them enough for them to save in their heads for the future that I may not be part of, the way I rely on replaying the lessons my mum taught me within my own mind. It's heartbreaking.
To have lost that stability, that connection, and have no one above me to support and be my safety net is severely disabling.
We need assurances.
We need protection.
We need autistic community.
We need people to run alongside our lives to help us regulate, feel worthy, and belong.
We need a family for our autistic people from birth until death.
No more support grouped by age range 0-5, 11-16, 18-25.
No swapping services and areas.
We need help to build confidence in ourselves and to make our own family and community to carry each other.
