Limbo of Wires

Life after diagnosis is very strange. A limbo of self-discovery and learning, mainly from the wonderful Autistic community I found online and in local groups. Far better educators than anyone else I’ve met.

My rollercoaster ride of highs and lows continues, mixing my ‘aha’ moments with many tears of grief and relief. I still feel unsure about this awakening to my truth, but then, I think that belongs in the Aspie territory of confused emotions. One day, it seems like a blessing, the next, I feel cursed.

‘How do I live with this’ and ‘what do I do now?’ Repeated questions accompanied by virtually no support from the medical world, leaving me stuck on my rollercoaster.

Surviving fifty-seven years in misery and ignorance of Autism as a High Functioning Asperger, is overwhelming when reality sinks in. Life has been wasted. All those milestones that people generally take for granted i.e. social peer groups, ongoing careers, love and intimate relationships, creating a new family (plus understanding the existing one) and having a sense of belonging and community. Damn it! Even chatting with neighbours is a challenge. Regarded as the oddball, who doesn’t socialise, I do not fit in.

I’m not daft, I know many suffer throughout life. Loneliness and isolation are epidemic in the UK, but I can only speak from my own experience whilst self-identifying my needs and wants. And I hope I speak for some in the Autistic community.

We’re on the outside. I’m on the outside. Trying to explain this dynamic to Neurotypical (NT) folk is well-nigh impossible. How could they understand? Do I understand what it’s like to walk on the moon? But I would give it a bloody good try.

Trouble is, most NTs think they do know and have no reserve in telling us, usually adding that they too, suffer in the same way! Ok!? If we’re all the same, why is there an Autism, ASD, ASC, Asperger* category for diagnosis… to identify ‘difference’.

Autism is not an illness, so why does it have to be diagnosed? Only so we can understand ourselves and our challenges living in this NT dominated world. It is not to our design and is not comfortable for us in so many ways. Therefore, we’re categorised medically in order to be ‘accommodated’ by society.

We are not the same as Neurotypical folk, our brains are wired differently. Yet we hide our alien thinking in plain sight.

The way the general population use their brains does not work for us. For instance, Autistic people may not communicate like NTs i.e. we are known for our lack of eye contact. The reason? We are utilising that part of our brain to do other things, such as creating inventions or great artwork. Somehow nature has rejigged our neural pathways, opening up other channels.

Lack of eye contact means we are listening very intently. We can’t process your words whilst studying you. I did not know about this, so for years I concentrated on staring at the person speaking to me, wondering why I was agitated, stressed and unable to respond efficiently, whilst, most probably, freaking out the other person! It’s all down to brain setup.

I believe Autistic people have been here since the beginning. Our ways are more aligned to natural living yet our unique thinking pushes innovation and invention.

Microsoft actively employ Autistic people for their hyperfocus and hard work. Most software was conceived and designed by Autistic people.

In our modern conformist society, we Autistics stick out like sore thumbs. Our different, quirky, eccentric, arty, outside the norm ways give rise to suspicion and fear. Maverick minded, no neat box fits us and we’ll never function well with the crowd. Even though we try hard to blend in, it is at great cost to ourselves.

Autistics feel disconnected from society. I feel disconnected. Even in seemingly innocuous situations, I sense an invisible barrier between me and other people. For years I wondered what caused my failings in life, now I know… and it is NOT Autism. It is society’s inability to understand me. I am not perceived as ‘normal’.

Living as Autistic is one thing. Having a fruitful and fulfilling life is another. How sad that I will never be allowed to thrive on Autistic terms. My potential has been wasted. Unless the system sees fast radical change, it is too late for me. Discarded and disregarded. Due to ignorance, I am left floundering in life. What a waste of our excellent talents. Society missed a trick here.

During my experience of transition from false NT to true Aspie, I know which group of individuals has offered their shoulder to lean on, words of comfort, without judgement or negation. I am in awe of the open heartedness of the Autistic community and their genuine want to help each other. I think many NTs could learn so much from Autistic people, if they could just understand our differences.

My dream is that NTs learn about us. How this will happen, I don’t know? But there is only one way – ask, LISTEN and learn. And stop telling us who we are.

* Autism, ASD, ASC, Asperger: This is a shifting sand of categorisation and varies depending on who you speak to and where you live.

Toodle pip for now


4 thoughts on “Limbo of Wires

  1. Yes autistic people continually struggle, but who wants to be average and ordinary? Personally I like quirky people who are different, but that is just me. A roller coaster journey of highs and lows, an apt description of a troubled life. But life still goes on and there are always new experiences to have and new people to meet. Keep going that is all we can do.

    Liked by 2 people

  2. Thanks for your comment Colin and for looking for the positive. Sadly, there are times as an Autistic person, when I wish I had achieved the ‘average’ and ‘ordinary’ milestones of life. I feel these have been denied to me, not by Autism, but a system that sees difference as wrong. Mind you, it is a work in progress.


  3. Thank you so much for giving me your blog link. I have always considered myself to be a NT who has a lot of knowledge of Autism. I have however come to realise that I actually have a lot of knowledge of individuals who have Autism and learning disabilities and who are much lower functioning. I am so swept up with the wonderful individuals I support that I forget that I still have so much more to learn. You are the educators, bare with us and thank you.

    Liked by 2 people

  4. Thank you Jessica. It’s lovely to hear from an NT 🙂 I so want my blogs to educate everyone so we Autistics, especially the forgotten adults, are understood. Although my main purpose for writing is to share my journey of discovery.

    Autism is such a complex thing to understand, I’m still grappling with my late diagnosis, yet once you delve deep and listen to the Autistic community, it starts to make sense.

    Love your feedback 🙂

    Liked by 1 person

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