Because I’m Autistic: Life Through the New Lens of a Late Diagnosis

It’s been a few months since my autism diagnosis. So what has changed?


Before we begin!

The following article contains my thoughts on my personal experience of finding out that I am autistic in my early thirties. I cannot and do not claim to reflect all autistic experiences.

It’s still relatively new to me, so I may accidentally use incorrect terminology and/or misunderstand certain aspects of autism.

I’m happy to discuss and learn more in the comments (especially if you can direct me to helpful resources!) but please be kind if you choose to interact.

Thank you!

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Diagnosis

This diagnosis came with the conclusion that my 20+ years experience of mental health problems were most likely as a direct result of living with undiagnosed autism.

Throughout those years, I was diagnosed with various mental health conditions: Mixed Depressive and Anxiety Disorder, Borderline Personality Disorder (BPD), Complex Post-traumatic Stress Disorder (c-PTSD), Social Anxiety Disorder, Agoraphobia, Mixed (Avoidant/Borderline) Personality Disorder… you get the picture.

To make a very long story short, it transpires that I am autistic, and I have a mixed depression and anxiety disorder that is related to trauma and abuse that I experienced as a result of being autistic (and not knowing about it).

A New Perspective

It’s a big deal for me. I’ve spent so long asking for help, engaging with various treatments, complying with medication routines, and never “getting better”. Now I can see that the treatments were never going to work because almost every single label they gave me was incorrect. Hence, the treatments for those conditions didn’t address the challenges, obstacles, barriers, vulnerabilities (etc) that I was actually experiencing.

I wasn’t “treatment-resistant” (a term I despise, but that’s a rant for another time). I wasn’t lazy. I wasn’t “attention-seeking” or “faking it”. I wasn’t “not trying hard enough”.

I am autistic. And what’s more, now that I know I am autistic, there is a real hope for me that with the right support, the connected symptoms of my mental illness may finally begin to subside.

That’s not to say life will suddenly become easy. As I said before, being autistic has its own challenges, obstacles, barriers, vulnerabilities, and so on. Many autistic people identify as disabled and autism is recognised as a disability.

Learning More

My initial and current learning related to my autism diagnosis can be broken down into three sections:

  • understanding my life up to this point (looking back on past events and circumstances through an autistic lens)
  • understanding how autism affects my day-to-day life at present
  • learning how to manage some of the challenges being autistic presents moving forwards, by utilising accessibility adjustments, coping techniques, and radical acceptance of who I am.

The more I learn about autism, about my personal experience of autism, and about who I am as an autistic person, the further I progress through the journey from self-compassion, to self-acceptance, and hopefully (one day) to self-love.

This is an ongoing process and involves a lot of reading and researching. There is a lot of information out there, but it’s something of a risk to rely solely on my own research.

There are various schools of thought, organisations, and resources about autism, some of which remain high-profile despite being widely rejected by autistic people as harmful. An example of this that I came across immediately was Autism Speaks and Advanced Behaviour Analysis (ABA).

Many autistic people strongly condemn this organisation and this type of therapy as damaging and unethical. There are many reports from autistic people who have experienced significant distress and trauma as a result of this approach. I wouldn’t have known about this without another important element of my learning process.

It has been incredibly helpful to connect with other autistic people, particularly those who were diagnosed in adulthood like I was.

#ActuallyAutistic

As a society, we are beginning to understand the importance and benefits of listening to lived experience, in both mental health and neurodivergence, and the intersection between the two.

Whilst there are, of course, many highly qualified professionals working with autistic people, there is a deeper level of understanding, compassion, validation, and support that can only be found in a connection with peers. Autistic experts by experience have played – and continue to play – a crucial role in helping me to gain a better understanding about myself.

Nevertheless, my experience of connecting with autistic peers so far has been entirely online. Social media, blogs, vlogs, and other online platforms are fantastic resources. However, I do believe that it would be beneficial for me to connect and spend time with other autistic people in person.

One of my goals for this year is to create a peer-led social group for autistic adults in my local area. I find social situations intensely anxiety-provoking, but I think it will be helpful (and fun!) to spend time with other autistic people; sharing experiences, resources, information, advice, and most importantly, having a space where we can be ourselves, without arbitrary neurotypical expectations.

No forced eye contact, plenty of personal space, free to stim and fidget and just *leave* if needed, free to share our special interests without embarrassment, express emotions in ways that feel natural, in a calm and comfortable setting with reduced sensory stimuli… I want to create that. I hope I can create that.

There is power in connection and in solidarity. There is a sense of peace and strength that comes from knowing you are not alone in your experience of this world, when you’ve spent so long feeling like the rest of humanity is following a script, but you can never find a copy.

I have so much more to learn about being autistic. There is so much I don’t know or understand yet. But I have also lived as an autistic person for 33 years. The only difference now is that I know its name, and I know that there are other people who see the world in a similar way to me.

Over to you…

I haven’t talked about absolutely everything, but I need to draw this to a close, as I’m heading into “over-explaining” territory! If you feel I have missed something important and relevant, I’d love to hear from you in the comments.

I would love to hear from other autistic people about their experiences; especially about late-diagnosis, re-evaluating past experiences through an autistic lens, and the process of self-discovery as a late-dx autistic person.

I would also love to hear about any books or resources that you have found helpful throughout your journey.

Please feel free to leave your thoughts or suggestions in the comments below, and if you head over to Twitter, you can find me @thepatchworkfox.

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