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Reframing My Life Following an Adult Autism Diagnosis

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I was diagnosed as an autistic woman last August. I wrote an article about the relief and necessity of having a “label,” of knowing I have an autism pectrum condition (ASC). It’s been five months since then, and my life has changed dramatically as a result.

I spent all of my life up until my diagnosis feeling broken. I felt like an alien in this world; not only did I not fit in and not belong, I didn’t deserve to be alive. I had two periods of long-term therapy on the NHS, something that is almost unheard of due to budgets.

Although I massively grew as a person during these courses of therapy, there was still a block that prevented me from moving forwards. I had many difficult experiences as a child, at home and at school, and out in the social world. Each compounded the previous experiences of trauma until it became intertwined in every cell in my body. I knew deep inside there was a child in pain that needed to be loved and understood – but I just couldn’t do it, I couldn’t connect. It was like there was a physical wall separating this child from my brain and who I am now.

Upon the discovery that I am actually autistic, it felt like I had come home. That barrier? It disappeared. It was like someone had unshackled me. Everything that had ever held me back dissipated. I can’t explain to you fully how overwhelming this was, particularly as it happened in the background. I could suddenly see that I am not broken; I never was broken. My brain is different, and that difference is just part of human diversity.

The first change I made in my life was to start listening to my needs rather than shoving them deep down inside of me. Females on the spectrum (including myself and my daughter) are incredibly good at hiding our difficulties and feelings. I’m not sure how other autistic females would describe it, but for me, in social settings especially, I literally disconnect my brain from my emotions. It’s a strange experience, as I know the emotions are occurring, but I don’t feel them.

Of course, this takes an incredible amount of energy – but knowledge about ASC meant that I also started to build restorative activities into my day. For example, today I attended a coffee morning for parents of autistic children. I picked my fingers the whole time (a form of stimming for me), I concentrated as hard as I could on my eye contact, if I was giving enough, or too much. I focused on whether I was talking too much or too little. I came out afterwards and put some music on to recharge my batteries. A song came on my playlist that unexpectedly triggered all the emotion to come out. But even then, I still forced it back down once more, until I could reach a safe place – home.

I found it hard to put my finger on why I felt so emotional. I felt compelled to write – writing is one of the biggest outlets for me. I used to write when I was younger too, but a bad experience made me stop until two years ago. So, here I am, sat at my laptop, rocking, listening to music and feeling… Deep feeling.

That deep feeling? It came as a tsunami. The lady that ran the group thanked me for my contributions, and said I always had so much good information to share. As she stroked my arm, rather than it being like an electric bolt as usual, it acted as a key to a wall – boom, it fell down. What happened then? I froze. And then I locked it back up tighter than ever, and put all my energy into leaving without having any more conversations. I knew I was crumbling.

It took me a while to process why I felt so overwhelmed, and then I realized that as I had joked with her, I am a sponge. I have so much knowledge in my brain, no wonder I don’t sleep! I remembered that she had also invited me to join the group because of my knowledge; she told me this before the group started. I disclosed to her last week after the rest of the group had gone that actually, I am autistic too – and maybe for her it was an “oh yes, I can see it” moment.

That emotion that flooded me, floored me even, I suddenly realized it was grief, complete and utter raw sadness. I  found myself in tears, wondering what my life could have been if I’d known earlier. Where would I be right now? Would I still have had two mental breakdowns? Would I still have been under the mental health team for over a decade? Would I still have had daily (passive) suicidal ideation? The answer is quite probably yes. But – and this is a big but – I would have understood. And now I do understand why life is so difficult for me every single day. It probably always will be, but that is because I am living in a world that is not designed for me or my brain. I will still have extreme anxiety daily over friendships, conversations, tasks I need to complete, hospitals, clothes, food, sensory hell — but knowledge is powerful. Knowledge has given me the strength to see this day through to the next one, and the next one, and the next one, until the overwhelm decreases.

I have also begun to recognize periods of autistic burnout. This happens when an autistic person carries on and on and on until we just cease to function. We can’t get out of bed, we can’t get dressed, and leaving the house? No bloody chance. I cry a lot and want to sleep until it passes. I want the world to just stop. But here’s the thing, the world does not stop, ever. This is when my brain (un)helpfully focuses on dying – if I were dead, this would all go away.

Having an obsessive, fixating brain at this point is incredibly challenging. But the hardest thing for me is watching my daughter go through exactly the same thing. She has no idea that I feel this way too, and I don’t want her to know; she is too young. But I do wish she knew she is so amazing (as is her sister) that I have fought myself through utter, devastating hell to be here now for them. And when she is feeling like this and I comfort her and help her change her thought patterns around, and I remind her of everything she is rather than everything she isn’t, as I stroke her face so gently through her tears, do you know what happens? That little girl inside that I couldn’t get to relaxes her tense muscles, and the relief washes away. She stops holding her breath, and she finds peace.

I guess I’m lucky really; if my daughter hadn’t been diagnosed with autism, I probably would never have realized I was autistic. I would never have had the opportunity to re-parent myself like I am. I honestly feel like I’ve been re-born; that’s the only way I can describe it. And as that little girl inside recovers and grows, so do I. I can suddenly see that other than the difficulties that I have with life, I also have many strengths – not necessarily those that can be measured by tests (even though I was a straight A student). I’m talking about the ability to focus on my interests (such as female autism) to such a degree that I am helping others. By having the courage to speak out, I’ve had people contact me privately for help. I’ve also had some people unfriend me on Facebook and “ghost” me, and yes it hurts and becomes an obsessive tirade of confusion that goes round my brain daily — but it’s been worth it. If I can help even one child to avoid 35 years of pain, distress and mental health issues, it’s all been worth it, even the times I thought I would never get through.

I still have a lot of re-framing to do. I am still uncovering memories and flashbacks that I didn’t know were buried between all the layers of life. Most of my memories, both positive and distressing memories, are attached to some kind of sensory experience. For example, the first memory of wanting to rip my skin off was when I was 18 months old and wearing pink jelly sandals. Songs can take me back so vividly that it’s hard to believe I haven’t traveled back in time. The same happens with smells. I also have some kind of natural ability to remember word-for-word what was said in my memories, even at times when I truly wish I could forget. The irony is, my memory day to day is awful! Yet I can still remember conversations word for word from 30-odd years ago.

This process has been mainly positive. I am finally proud of who I am, what I have achieved, and what I will do to ensure I succeed at in life from this day forwards. But today was the first time I physically felt the grief attached alongside it. I knew the grief was there, of course I did, but it was yet to connect to my being. As well as sharing my experience for others who may be feeling the same way, this acts as a checkpoint for me — a significant checkpoint in my 35 years. It’s both a peak and a trough; I wonder when the next one will pop into my life. It’s a choppy sea to swim in, but I finally have the confidence to know I will reach the other side of the channel. I can’t tell you when of course, but I’ve slowly let go of the time constraints I, others, and life imposed upon me. So maybe I’ll see you at the next checkpoint, hopefully with even more insight of what it’s like to process a late diagnosis of autism spectrum condition.

I would just like to add as a final note, us neurodiverse folk are all unique, just like everyone else. While there will likely be people who completely identify with my experiences, there will probably be just as many who don’t.

Getty image by Big Dan.

Originally published: February 19, 2019
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