Finding my truth: My experience of late diagnosis autism
Content note: This blog contains references to thoughts of suicide
Jane McNeice is an MHFA England® Instructor Member, the founder of Mind Matters Training, and the author of two books about autism. Here, Jane shares her experience of receiving a diagnosis of autism at the age of 45.
There’s a growing conversation around late diagnosis, particularly in relation to autism, ADHD, and those doubly neurodivergent – AuDHD. Late diagnosis is not a trend. It’s a generation finally being seen.
My own experience is one of late‑diagnosed autism with suspected dyscalculia, often described as the numbers‑based counterpart to dyslexia. Research has long shown the importance of early identification. Cassidy and colleagues have demonstrated strong associations between late‑identified autism, poor mental health, and thoughts of suicide, highlighting how missed or delayed diagnosis can compound distress over a lifetime. For people who mask, the likelihood of missed diagnosis, and thoughts of suicide is even greater.
Many of us weren’t afforded early recognition. Instead, we appeared repeatedly in the places where suffering becomes visible – GP practices, mental health services, eating disorder groups, psychiatrists’ offices, and clinics treating the physical conditions that often co‑occur with autism. This was my path too.
Growing up “different-wrong”
From childhood, I lived with a pervasive sense of being “different”. Not the everyday uniqueness we all share, but a profound, exceptional difference from other people, including my peers. And not simply different, or different‑good, but different‑wrong.
This message was drip‑fed throughout my life. Comments about my appearance, how my behaviours shaped a sense of oddness and non‑belonging. I became an observer rather than a participant. Even in adulthood, when inclusion appeared present – as an Instructor Member, trainer, or colleague – I would question what alchemy I had used to engineer myself into the group or space.
Today, I understand this as the predictable outcome of masking, or camouflaging. In their research, Hull and colleagues found that many autistic women experience lifelong camouflaging as both adaptive and exhausting. Imposter syndrome becomes a logical consequence. If you camouflage, you are, by definition, an impostor.
The IBS years
My life divides into chapters. The first were the “IBS years”, from puberty to age 32 – marked by chronic gastrointestinal problems and an inability to control bodily functions. These amplified the ever‑present anxiety that was eventually diagnosed as generalised anxiety disorder (GAD) at age 27, when I told my GP I no longer wanted to live.
On my thirty-second birthday, I was prescribed medication that changed my life. Until then, I couldn’t speak in meetings without having a panic attack – something I had learned to mask so effectively that I astonish myself now when I look back. The medication allowed me to participate in groups, recruitment processes, deliver presentations, and build confidence. Within a year, I changed jobs. The following year, I became an Instructor Member. I wanted to give back. I didn’t want others to suffer as I had.
For the next 11 years, I attached myself to the narrative of “managed anxiety disorder and managed gastric problems”. That was my story.
A question that shifted everything
At a health conference in 2019, after speaking with the IBS Network, a colleague asked me: “Do you really think you have a handle on your gastric problems and anxiety? Because it sounds like you still have to do a lot to manage them, and they’ve never gone away.”
I ruminated on this for months. It quietly unsettled the narrative I had been living by.
Two years later, after a misdirected assessment for a personality disorder, where instead the GAD was reaffirmed with an additional diagnosis of social anxiety disorder, I encountered a social media post, fewer than 90 words, that made everything click.
In under a minute, I self‑identified as autistic.
In 2021, at age 45, I was formally diagnosed with autism and suspected dyscalculia. The assessor telling me I was autistic saved my life, and to understand why is to know what came before. The first chapters of my life are as essential to share to understand how profound the diagnosis was.
I’d lived with a lifelong sense of being fundamentally broken. Diagnosis shifted “broken” to “different”. Today, I recognise both the challenges and strengths of being autistic. I don’t describe my being autistic as a superpower. The challenges still outweigh the strengths, and they went on for decades before I was recognised. Early identification could have helped me understand my anxiety and gastric problems, and build self‑worth sooner.
The noise around late diagnosis is not accidental. My story is not isolated. Thousands of us, mainly women, are experiencing a second chance. Diagnosis brings understanding, self‑compassion, and a life that becomes more manageable because we finally know our truth.
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