Life after autism diagnosis – what next?

white redhead boy holding sparkler in his hands which had just exploded.

The five months since I was “officially” diagnosed with autism have been a whirlwind of discovery, namely finding other autistic women like me, and finding out so much more about myself– the small parts of my internal life that until I could identify them, went unnoticed or pushed aside.

A diagnosis of autism spectrum disorder (especially as an adult) is a huge life adjustment– when you start to look back on your life after years of labelling yourself as one thing (oversensitive, shy, weird, quirky, clumsy, moody) and finally realising you are all of those things, but more importantly, you are AUTISTIC.

Women are typically diagnosed much later than men, which means that many, if not most of us have gone through life being “corrected” by those around us and blaming ourselves for our perceived shortcomings.

The last few months has been me finally trying to claw back my authentic self and focus deeply on what I need, not what I’ve been told (or have told myself) I should need.

Taking care of your own needs is difficult when society has gaslit you about a) what your needs are and b) the time/resources you “should” need to fulfill them. It is terrifying yet liberating to listen to the small voice inside, the one who has been silenced and muffled and tortured– yet she’s still there, in spite of everything.

Self-care in a post-diagnosis state requires some determination because people are looking at every turn to dismiss or belittle you. You don’t have autism, you have “mild” autism. Apparently, “everybody finds it hard…”

To unravel conversations with multiple participants

To deal with noise from children

To talk on the phone

To make small talk

To work in an office

To deal with uncertainty

To stop picking at their skin

No matter my particular autistic struggle, there’s someone who thinks it’s not that bad based on looking at me and making assumptions.

The irony that these people tend to focus on one detail rather than seeing the bigger picture of autism is not lost on me.

The “but everyone finds that hard” mentality is why I lived 33 years of life thinking there was something wrong with me, and blaming myself for my flaws which I didn’t truly understand were not flaws at all.

That time is now up.

Ultimately there have been ups and downs since diagnosis, but I feel more positive going forward than I have ever done in my life.

Through my diagnosis I have gained more insight into who I am and now it’s time to start prioritising myself, valuing my contributions to the world and honouring my differences from the neurotypical majority.

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7 Responses

  1. it WOULD HELP YOU A GREAT DEAL TOO TAKE PART IN RESEARCH
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  2. This could have been my own story! The best part, for me, was the realization that *it’s not just me*. I’d been so used to being one of a kind that finding people like me made me feel like the ugly duckling finding his swan family.

  3. I’m 40 diagnosed last year. I’m finally feeling able to be more authentically me. It’s scary but it feels good. I cry more now like the floodgates have opened but I am also prone to happy tears.

  4. Thank you so much for this. I was diagnosed at 35, and it’s been a roller coaster ride, but now that I’ve completely owned my autistic self, I’m doing a lot better (and I’m SO grateful to have found this site).

  5. A severely ‘over-educated’ 52-year-old woman here, currently seeking an autism diagnosis for the second time. Loads I relate to in your post and video. Thank you!

  6. self diagnosed when i began to suspect i was autistic at age 65/sure by age 66, and still seeking “official confirmation” age 67, it has been a relief to look back and see that autism explains almost every painful incident, almost every bit of self blame and bullying and shame… I can look back and see how autism had everything to do with my struggles in my youth and young adulthood and many of my ‘current day ‘ difficulties as well.
    knowing i am autistic has given me a much better perspective and understanding of all the years before and allowed me to forgive myself and others for pain and struggles. Nobody knew!

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