Being autistic

I was diagnosed autistic at 64, after masking poorly for over six decades.

It brought both relief and grief and the realisation that so much of my life was about by trying to fit into a world that never made sense. I also believe both of my parents were autistic but died undiagnosed. Had I been diagnosed earlier, things may have been different. But growing up in the 1960s, diagnosis likely meant being cast aside.

Self-diagnosis is valid, but I needed the clarity and validation of a formal diagnosis for my mental health. I spent a year researching, reflecting on my life, and gathering evidence before being diagnosed as autistic level 2 in 2022. That diagnosis helped explain not just my struggles, but also why I always felt like I was dropped off on the wrong planet.

Since diagnosis, I’ve allowed most of my traits to show. Diagnosis also opened the door to understanding my gender identity thus I realised I was non-binary and asexual. As I’ve aged, sensory and social challenges have become more intense, and I now live a quiet reclusive life with my spouse. I experience the most peace in solitude, and I no longer need try to fit in.

Autistic people often avoid stating their level of autism because they’ve been told it’s wrong, but it’s wrong to tell someone how to identify.

There is toxicity within the autistic community, where individuals shame or bully others for identifying in ways they don’t like. How we choose to identify is nobody else’s business. It’s troubling that there’s so much division, ableism, and separateness in the neurodivergent space. The same toxicity we’re trying to change from the non-autistic world seems to exist within our own community.

Our support needs aren’t defined by our autism level but understanding these levels can help identify challenges and support requirements. Levels do matter but they were never meant to define us, just offer insight into the type of support someone might need. Pretending a level 1 and 2 are the same is just wrong.

Autistic people often mask their traits to fit into a society that doesn’t accept difference.

Masking is mentally exhausting and damaging over time. Many of us aren't hiding because we don’t know ourselves, we’re hiding to be accepted. After diagnosis, it may seem like we’ve changed, but really, we’re just showing who we’ve always been. Unmasking isn’t getting worse it’s becoming real.

It can be hard, especially when people don’t believe the change or accuse us of being difficult. But the cost of hiding is much higher. As I’ve aged, I’ve lost the energy to mask. I live quietly now, mostly at home, protecting my peace. I speak less in overwhelming situations, not out of rudeness, but because it's what I need. Being autistic isn’t the problem, the problem is being forced to hide our autistic traits.

It’s common for autistic people to better understand their gender identity and sexuality after diagnosis.

For me, it explained a lot. I’ve always been non-gender conforming, but only later realised I’m non-binary and on the asexual-demisexual spectrum. Before that, I simply thought I was different and often got labelled odd.

I’ve never related strongly to being a woman, though I’ve been called one all my life. I see myself more as a person rather than being defined by a gender. I feel most comfortable with a neutral, androgynous look, wearing plain clothes and rejecting societal expectations like dresses and feminine accessories. My choice to shave my head wasn’t about gender identity but about sensory freedom though it also felt like removing layers of masking.

Sexuality and gender are separate things. Non-binary people can be straight, gay, bi, or asexual. Autistic people often don’t fit into neat identity boxes and we shouldn’t have to as we are human first. I hope for a world where gender doesn’t define how we’re treated, and everyone is just accepted as they are.

Society glorifies goal setting as the path to success but for many autistic people, this approach can be damaging.

Traditional methods push us to leave our so called comfort zones but that may actually be where we are meant to be. Constantly striving and pushing ourselves can lead to burnout, overwhelm, and demand avoidance. The personal growth industry often uses a one size fits all framework that doesn’t align with how autistic minds work. We process differently, and what motivates neurotypicals can create stress and trauma for us. Long term goals often bring pressure and feelings of failure, especially when life’s unpredictability gets in the way.

Instead of focusing on long term goals, autistic people may benefit more from daily systems and gentle routines. Committing to small, meaningful practices without rigid timelines supports growth without triggering overwhelm. To do lists can also fail for those with demand avoidance. A flexible list of possible tasks without attachment to completing them all can be more supportive. Growth doesn’t require constant pushing because sometimes staying in our comfort zone is exactly where we are meant to be.

As I’ve aged, I’ve learned not to over analyse my emotions.

Being autistic means emotional processing can still take time even if the feelings aren’t as intense as when we were young. I don’t suppress my emotions, I allow space for them to settle before I respond. Taking responsibility for meltdowns doesn’t mean denying our pain. It means owning how our behaviour might affect others. I try to warn people when a meltdown is coming and explain what I’m like during one. That way, they know I’m not dangerous, just overwhelmed.

Autistic sensitivity to sound is often misunderstood. It’s not that we’re too sensitive sometimes, we simply hear more. I often pick up noise's others can’t, and it can be distressing when others dismiss that experience. We are also told we focus too much on the smalls but what’s small to someone else might be important detail to us. This attention to detail is part of who we are, not a flaw. Dismissing our concerns as unimportant only adds to the emotional burden we already carry.

Small talk is subjective, determined by personal beliefs and feelings rather than facts.

Many autistic people say they don’t like small talk, and I’m one of them, but I believe many do enjoy chit-chat, especially when it’s about something that interests them. From my experience this seems true even if they wouldn’t call it small talk. Conversations don’t need to be about big topics like world peace to be meaningful. Labelling casual chats as small talk can oversimplify things.

Just because a conversation lacks deep depth doesn’t mean it’s not interesting. Sometimes, what seems trivial to us can be significant to someone else. And if someone is speaking passionately about something we don’t connect with, that doesn’t make it meaningless for them. Some think asking deep, personal questions are the same thing as meaningful conversation, but often it feels like they are just trying to move the conversation away from themselves or being nosey.

Then there are people who thrive on shallow topics like gossip, looks, and material things. These conversations rarely go beyond the surface and are often one sided. Many people like to have light conversation so to have a break from life’s stress. However, those who are consistently shallow tend to focus on themselves, rarely engaging in meaningful ways when it matters.

We are all citizens of the world, yet selfishness and greed have made it harder to see that the world was made for everyone.

Life is about what we learn, experience, and understand, not the details of how we do things. When we make assumptions about where others are in life, we fail to see them for who they truly are. Embracing our shared humanity means showing compassion and not judging others. Autistic people often face stereotypes that are formed when they try to fit into neurotypical norms. We need to be careful not to project our own expectations on others, whether they are autistic or neurotypical.

Behaviour isn’t always neurotypical or neurodivergent as such, it’s human. If we stereotype non autistic people, we then become part of the problem we are trying to change. Constantly comparing ourselves to neurotypical people creates an illusion of who we are. Both autistic and neurotypical people are diverse in their own neurotypes, and there’s no one size fits all model for either. When we stop measuring our differences, we can accept ourselves and others more fully. True connection happens when we accept people for who they are, regardless of their neurotype.

Many autistic people have co-occurring conditions that may be seen long before their autism does, leaving them feeling something was missing.

These conditions can delay the discovery of autism, as symptoms often overlap. For example, before my autism diagnosis, I lived with fibromyalgia, IBS, and anxiety, and assumed sensory and cognitive issues were linked to these conditions.

Co-occurring conditions often blur the lines of diagnosis, with some people being misdiagnosed with conditions like depression or personality disorders due to clinicians not recognising the signs of autism. This is further complicated by clinicians being more trained in other areas and holding stereotype views of autism. Some autistic individuals are even misdiagnosed with OCD, as repetitive behaviors in autism are sometimes mistaken for it.

Living with multiple co-occurring conditions can be exhausting and confusing, as they often exacerbate each other. I believe self-awareness is the key as it can help clarify what's really happening. This is why self-diagnosis is important for many, as it helps individuals prepare for a formal assessment. Conditions like dyspraxia, alexithymia, and complex trauma are part of the autistic profile, not necessarily separate diagnoses. Many of these co-occurring conditions could stem from being autistic, making it difficult to separate them.

Many chronic illnesses are invisible, and those who live with them often face judgment from people who don’t understand what they cannot see.

The symptoms can be severe, yet because someone looks fine their illness may be doubted. This only adds more stress. Over time, some people with chronic illness lose friendships or family support, as their limitations no longer fit into other lifestyles. For some, solitude becomes easier than constantly explaining themselves. Managing a chronic illness involves finding what works for you, whether through conventional or alternative paths.

Some find healing through spirituality, especially when medication and diet offer limited help. There's no one size fit all approach. Living with invisible disabilities can offer unexpected insight and personal growth. While support and awareness help, its about listening to your body, trusting your instincts, and accepting your own path. We must respect each other’s choices without judgment, as every journey with chronic illness is personal.