Lived experience of issues with clinicians 

 From birth our first child was different and my experience as a first-time parent (as yet an unrecognised autistic) was different. Mothers’ groups didn’t suit me or my child and so there was much isolation. My child’s behaviours didn’t work with other parents and again we were isolated. My son didn’t talk until he was nearly 3. The health nurse picked up on lack of eye movement very early on, but he was sent for physiotherapy for torticollis we now know this to have been a red herring. He was seen for Colic as a baby who never slept and for tongue tie as he didn’t feed as other babies and also invisible reflux. At 3.5 we were directed to a government paediatric centre (WA) who mentioned autism and he was put on a waitlist. The paediatrician left, the speech therapist left, and we were left with new therapists. Inadvertently I had been teaching him to mask and Kindy teachers saw anxiety behaviours but told us that they had taught autistic children before, and my son was just like other kids they saw – they didn’t see the behaviours when we finally got him home or trying to get him to school. I feel the school failed us.  

So, when we eventually got to the top of the waitlist, we were seen but a group of clinicians who didn’t listen to us and suggested that because of his eye contact there was no way he could be autistic. My husband then treated our child’s behaviour through a less favourable lens, and I also began questioning myself.  In pre-primary my child could not play after school with other children it was too much so again it was isolating. When he made a friend, he got too attached and wanted his school bag next to that child’s all the time. The child’s parent complained, my son having no diagnosis except anxiety had no help, but we were lucky to have an open-minded teacher. My son started getting anxious around schooling, about sports he couldn’t be out with others without a meltdown. Because he’d had a missed diagnosis other clinicians were unwilling to see him or make comment. We got put on another waitlist where they forgot about us and then put us back at the start.  

It was then we went for a private diagnosis showing videos of our child spinning and melting down as no one believed what we were saying. Finally, this clinician said your son is definitely autistic, why didn’t you get a diagnosis earlier? He was diagnosed level 2 at aged 6 and from there it was a mess of trying to get the supports he needed. At first we went to (the Autism Association) this set us back as they used ABA which made him anxious and depressed. Co-occurrences were not even thought about at this stage, which further affected his mental health. School we’re still not helpful and as a runner he needed a watch to monitor him, but the school wouldn’t allow it. They sat him in a corner and made paper aeroplanes with him. I walked in for a blood test early in a sports session and found him being dragged by his arm and yelled at by a teacher. When I questioned this the teacher said she didn’t know he was autistic, and the principal denied everything. We changed schools. In the school holidays I began going back to with after taking a long time off to care for my children my son was bullied and distressed he started banging his head on tables. I monitored him until he started saying he wanted to kill himself.  

I took him to Perth Children’s Hospital and saw a very unhelpful psychiatric nurse who said she knew all about autism but wouldn’t look at his file or listen to me. She took him away to talk by himself and came back saying he had told her his father hurts him (to my son a feather could feel painful to him, and my husband just isn’t like that). She brought a social worker in who said my husband was not allowed to be around our children (both autistic) alone until an investigation was complete. They sent child protection officers in the first week of our child’s new school who didn’t understand autism and wouldn’t listen to anything from us. I had to gather evidence and attend an OP child mental health appointment with my son which they dismissed as ‘just autism’ do not only did we not get any support I was now trying to parent two high needs children alone and hold down my job. I’m the middle of all of this I got my diagnosis to try and support my children and my daughter was diagnosed privately first time. I was put off the child development centre because there was no understanding of autism or a PDA profile or co-occurrences (even though I’m trained and have been working in this area for now 30 years) As a parent I had no voice.  

My son is now diagnosed autistic level 2, ADHD, dyspraxia and dysgraphia and rather than making paper aeroplanes he’s in the gifted and talented group at school, being twice exceptional. He is now 10 and still needs supports experiencing PTSD from previous ABA work, anxiety and depression he also has extreme hypermobility. My daughter is 8 she was diagnosed autistic in year 1 and ADHD year 2. Both now see neuroaffirming (and neurodivergent OTs and Psychologist). I don’t feel neurotypical clinicians work as well or understand their needs. 

My own experience with clinicians over the years has been dismissive of my autistic-ness. I’m finding more clinicians learning and understanding and I’m part of that teaching health professionals about neurodivergence and what that could look like from a clinical perspective. I’ve also been asked to train the mental health ward staff at Ramsey hospitals.