Coming to Terms with My ASD Diagnosis

I thought getting my diagnosis would be the end of the story. It felt overdue and strangely comforting. Autism explained parts of my life and early childhood and filled in the gaps left by the personality disorder diagnoses that never quite fit. When the assessment arrived, I felt relief. Not floods of tears, because that isn’t me, but the quiet version of emotion that makes me withdraw and process.

The written report validated so much. It even helped with my ordination process, separating mental health from neurodivergence and giving me language that finally made sense. I thought that would be the end of it. Instead, something unexpected happened. The positivity shifted. The more I lived with the diagnosis, the more the assessment wording began showing up in my daily life. It started to bother, frustrate, and, at times, depress me.

Friendships are a good example. I’ve always struggled with them. I don’t always understand social situations. I’ve learnt social tricks to cope, like laughing when everyone else laughs even if I don’t get why. I don’t always know why friendships fade. My physical disability complicates things too. My chair limits where I can go. Some friends find my degeneration hard to see. Travel takes longer. Socialising takes more energy. Yet I can’t help wondering how much of the difficulty is also my autism. I still get lonely and get jealous of Hannah’s ability to navigate friendships so easily. We’ve talked about it. She understands. It’s not resentment. It’s just hard.

Now, when I’m in social settings, the assessment echoes in my mind. I’ve always struggled with eye contact, over communicate, and moderating my voice when passion increases the volume. My attempt to soften becomes mumbling. Hannah helps me adjust. When these things happen, the line from the report about reduced non‑verbal communication hits and frustrates me.

I tell Hannah that I hate reading sentences describing how I struggle with friendships, misunderstand social cues, and feel like an outsider. I want to challenge it, do more with friends, and feel less lonely. So recently we arranged three evenings with three different couples. I tried. Yet the same patterns appeared. The same social issues. The same moments where I felt out of sync. It became a catch‑22. The more I tried, the more the assessment seemed to be right.

My mum raised me with a mindset that shaped my whole life. When my FSHD began, she told me that my disability didn’t define me and that I should show the world my true ability. I lived by that. Every job, career, and challenge, I pushed myself to be a high performer. Even when degeneration stripped things away, I kept going. I’m still doing that now. I’m on the ordination path, in the top one percent severity for FSHD at forty‑three, and pushing forward. Over the years I realised that mindset created internal ableism. I had to unlearn it and accept my disability as part of me, not a flaw. By forty, I reached a place where my disability was both a challenge and a strength. I found identity, community, and pride in it.

I don’t have that yet with autism. Every time I try to embrace it, the assessment wording hits back. It pulls me down. It reminds me of the parts I wish I could change. It triggers the line in the report about analysing social interactions before and after they happen. Of course I do. I analyse everything.

I analyse the moments where a serious conversation shifts into humour to break tension. I catch the moment but don’t understand it. Everyone moves on. I don’t. The serious point sits in my mind, waiting to be said. When I say it, it kills the mood. Hannah helps when she can, smoothing the moment or signalling that I’ve misread the flow. I analyse the moments where I miscommunicate. I over explain. I under explain. I interrupt because I misjudge a pause for the end of a sentence. I see the face friends pull when I interrupt. I see the patience when they carry on regardless. By the time they finish, my point is either irrelevant or too heavy.

Then the assessment echoes again. The line about feeling overwhelmed by anxiety in social situations. The line about struggling to interpret tone, over communicating or withdrawing, and interrupting. It becomes a cycle. I withdraw. I beat myself up. I talk to Hannah. I try again. I meet another friend to tweak my behaviour. I try to maintain rather than erase. So far, it hasn’t gone well.

The assessment highlighted how I hoped the diagnosis would help me support myself and allow others to support me. I still believe that. I want to reach a place where my autism feels like my physical disability. A friend said the assessment is messing with my head. It is, but not in the way they meant. I’m not clinging to the label. I know who I am. I’ve known for years. It’s the precision of the wording that hits me. It shows me exactly what I do as I try to grow, integrate this part of myself, and live authentically.

I shouldn’t be so hard on myself. I mean, it did take twenty-seven years and maturity of 30 years with a disability to align my physical disability. I just hoped this would transition quicker.