Living an autistic and ADHD life. What’s it really like? I explore how I feel the world differently and challenge the myths, the misunderstanding and the misconceptions.

I am not sure that society understands the many ways that people feel, and hear, and see the world differently. And I would like us to change that.

The negative language and lists of deficits and impairments drive the stereotypes and make people reluctant to recognise or identify that they may be neurodivergent or neurodifferent. I am autistic, ADHD and dyspraxic but so many other conditions and issues affect neurology. Some we are born with and some, like depression, anxiety, PTSD and CPTSD, we acquire through life and trauma, abuse and accident.

For family and friends, for teachers and specialists, for colleagues and for people that I meet on the bus.

Often when I speak to parents and teachers I realise that we don’t understand each other. This is understandable because we broadcast on different wavelengths. I realised that there is so much I don’t understand about brains that do not have the benefit of my autistic insight. And there is an incredible amount that they don’t understand about the ways that I feel, and see, and hear the world.

Everyone seems to want to help the child. And that is wonderful. But if help means make them better, then I start to worry. I would like people to understand autism and neurodivergent ways of feeling from the inside out. We feel and see and hear things in a different way.

Different but equal; equal but different.

Sometimes I get the feeling that they are in some way sad because the child is not like them, and because they want the child’s life to be like theirs. Jim Sinclair’s powerful words explain this better than mine.

Don’t mourn for us – Jim Sinclair

You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.

Of course, that has made me cry and I hope it has the same effect on others. And of course, it is natural and essential for parents and carers to want a child to be happy and nurtured and to fulfil their potential. But if the guidelines for these things are coming from the outside in, it might be that they are not what the child needs, and in some cases, might even be detrimental.

In his essay Jim Sinclair goes on to invite parents to see things differently. I’m not sure that I like the suggestion of an alien in their lives, but I do understand what he is trying to say.

After you’ve started that letting go, come back and look at your autistic child again, and say to yourself: This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it.

If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.

The point that he is making is that, in the words of Forest Gump, life is indeed like a box of chocolates and you never know what you are going to get. I want us to get to a time when we can exist side by side with all of our differences but without the obsession with cohesion and conformity.

I wonder if neurotypical minds are comforted by the idea that we are all the same and all feel the same things. I wonder if that is their security blanket. The often say well we all have that don’t we, or, well, we are all on the spectrum a bit aren’t we. I think that they are trying to be helpful and to make us feel better. The words are well intended. They exist as part of a group that gravitates to sameness, and I think that they feel unsure, even threatened by difference.

I don’t want to be reassured that I am the same. I want to be recognised for being different. Even though they are trying to help by reassuring me that I don’t look autistic, or that I need not worry because no-one can tell, what they are actually doing is invalidating who I am, and how I feel and see and hear the world. I am not the same. It is not the same for me. And I would prefer people to know this.

When I spoke with some parents I heard their language and realised that they can only feel things from themselves. How can it be any other way. That is why we need to start to translate. Telling a child, or me, that it will all be ok might not be helpful or comforting at all. What will be ok and what does ok mean? Telling a child, or me, that I should just calm down is certainly not helpful, not matter how kindly said, because if I could do that, then I most certainly would already have implemented that helpful strategy. I don’t think I know what calm is, and I definitely don’t know what calm is for you or for anyone else.

Jim Sinclair was a pioneer in the neurodiversity movement that started raising awareness of neurodivergent ways of being. His appeal to all us to recognise difference is as powerful today as it was then. The care and attention that we give really ought to be based on what the person needs, and not on what we think that they need. But we will only start to recognise this when we tune in to our different frequencies.

I write and present and coach and podcast in the hope that more will be understood about autism from the inside out. To borrow words from Dr Luke Beardon I will end by saying that autism is not a tragedy, but living in a world that doesn’t understand it can be. And I would like to change that.

http://feelingtheworlddifferently.co.uk