Lived-experience of badly handled diagnoses

Once I suspected I was autistic, the long wait to access a ‘Gold Standard’ assessment with a suitably qualified professional was frustrating. I had lived 38 years feeling life was a challenge no matter how hard I tried. On reading Spectrum Women: Walking to the Beat of Autism, I felt so many ‘aha moments’ with descriptions and stories mirroring my own experiences.  In the interim between this realisation and diagnosis, I fervently poured over whatever information I could get my hands on. The more I read, the more I identified with autism, yet instinctively I remained in limbo, feeling that I needed a formal diagnosis to know for certain whether I was autistic.  

Both health professionals and family around me denied my thoughts about autism, stating I was too good a communicator. No-one ever thought to consider autism, instead, attributing my anxiety, social foibles and struggle managing life to my adoption and history of anorexia. 

I believe pursuing a diagnosis in later adulthood requires conviction and determination because it’s not easy emotionally, relationally, financially, or practically. There’s a sense of inner turmoil over the unknown, feeling no-one understands, plus it’s expensive and time consuming.  

Yet even after receiving a formal diagnosis, I had doubts. The assessment felt very subjective, based on how I interpreted my history and current state. I looked for all the evidence in my life that might indicate autism when responding to the questionnaires and interviews. What if I had responded differently? And would a different assessor have diagnosed me as meeting the criteria? 

When I finally received a diagnosis, I was keen to access any available funding to build my capacity. My NDIS application was initially rejected when I found out that the assessment by the neurodevelopmental psychologist didn’t qualify because she was a registrar not a clinical psychologist. Fortunately, my time and money weren’t wasted, as the NDIS accepted a letter from a supervisor supporting the diagnosis.  

The whole process of researching about autism to determine whether a formal diagnosis was worth the expense, going through the diagnostic process (three face-to-face sessions plus copious online assessments and digging into my past), working out how to access NDIS supports and finding suitable providers, was all consuming.  

The hardest part of this process was the lack of post-diagnostic support. All my efforts had gone towards a diagnosis, but now what? Finding effective supports as an intelligent, verbal adult proved extremely difficult. There are providers for children, teens and young adults, but for 35+ year olds? Despite speech and occupational therapy providers claiming they catered for autistic adults, I didn’t see how a young, single new grad could help me navigate my marriage, parenthood and juggling a household.  It was also problematic trying to find other late diagnosed adults with whom to share experiences. While there’s an online community, it’s harder to find an in-person community. Anything promoted as ‘adult’ has generally been for 18–25-year-olds.  

The most upsetting experience post-diagnosis has been the negativity and lack of support from some of those closest to me. Feeling I’m a burden because my capacity doesn’t match expectation, being offered prayer to heal my autism, as though it’s a disease, having my decisions gas lit because I admit to struggling with executive functioning, and when my son received his diagnosis, receiving pity and assumptions that he would never be successful.  Increasing society’s understanding and acceptance of neurodiversity and changing the conversation around autism would perhaps make it easier for me to disclose and fully embrace my autism diagnosis.