In March this year, I was diagnosed with autism spectrum disorder (ASD, level 2). Since then, I have spent a lot of time reflecting on what this diagnosis means, not just for me, but for others across the spectrum, especially those with medium or high support needs and their families.

Autism has become a focus of deep personal interest for me. I have tried to learn as much as I can about the full range of experiences, though I know that understanding autism is a lifelong process. I also know that not everyone will agree with what I share here, and that is absolutely fine. We are all entitled to our views, and those views can shift as we gain new insights.

There is no single experience of autism, and there is no one correct way to think about it. The neurodiversity movement emerged to challenge outdated ideas that framed autism as nothing more than a tragedy. But I believe that, at times, some of the current conversations risk becoming extreme in the opposite way, overlooking the reality that for many people autism can be very disabling. The truth sits somewhere in between.

Self-diagnosis is often a thoughtful and sincere process. Many people come to identify as autistic after reflection, research, and community connection. But I believe we should also think carefully about what it means when self-identification is accepted without question. Autism is a recognised disability, with criteria that exist for a reason. While we should respect each person’s experience, we should also be honest about what autism means in medical, legal, and support contexts.

Modern autism advocacy can sometimes exclude those with the highest support needs. I have seen people with significant impairments and their caregivers dismissed or ignored because they do not fit into certain narratives. If advocacy is to be inclusive, it must give space to all autistic people, not just those who can speak for themselves.

There are many reasons why some people are diagnosed late. It is not only those with low support needs who experience this. Misdiagnosis, lack of awareness, cultural factors, and systemic failures can delay diagnosis for anyone, regardless of support needs. And being diagnosed early does not guarantee better outcomes. Many early-diagnosed people still face stigma, bullying, and mistreatment.

Support needs are not static. They can change over time, and levels are only broad guides. Terms like profound autism have started to be used to highlight those with the most significant needs, so they are not overlooked in discussions about autism.

Autism is complex. It can bring strengths, but also real challenges. It is okay to feel pride in your identity, but it is also okay to feel frustrated by the difficulties autism can bring. Each person’s experience is valid, and we should aim for understanding and inclusion that reflects the full reality of life on the spectrum.

Sam Ellis is a writer focused on neurodiversity, disability, and mental health. Sam is passionate about promoting understanding and inclusion.