Why change F**ks with my head

Why is change so difficult for autistic people and can we make it easier?

This newsletter has been a long time coming (a combo of ADHD procrastination and lots of life changes, ironically!) and covers the aspects of dealing with the news of change and how you can help ND friends and family by being aware of the impact change causes.

I talk from the view point of being autistic with ADHD and I don't know where the lines cross, so please bear in mind that everyone is an individual.

My reaction to change is the real problem

Dealing with change isn't just having to face up to the actual change, sometimes it's the reaction you have when you're told about the change that can cause the biggest problems.

I have lost relationships, friendships and frankly nearly my mind, trying to face up to changes and not dealing with them well.

If I've made plans for something, I haven't just made plans logistically I've committed myself emotionally and mentally to doing the thing so much that I've almost experienced it. In my brain I basically have and we all know our minds create our reality.

Having that torn away causes actual physical pain in some circumstances, no, really!

Let me give you an example to explain exactly what I mean.?

If I am in a restaurant I will have studied the menu. I've taken my time and I've chosen exactly what I want, I've potentially done this before I even get to the restaurant. I'm very fussy with food, so I've probably chosen something very particular as nothing else on the menu is even appealing to me. So when I order and I'm told that the dish is no longer available, this is devastating.

This can seem ridiculous to someone else, however for me I've already experienced the food. I can almost relish the flavour already, I've imagined what it's going to look like, what it's going to smell like, what it's going to taste like, how I will feel eating it, maybe even what dessert I will have afterwards and how the drink will compliment the food. Everything.

I can't help it, this is how I experience life. Intense right?

I rehearse everything in my head before it happens - conversations, experiences, arguments, sex... everything, good or bad. This can set up levels of expectation that are hard to meet. So that means if something changes and there's an unexpected incident or I can't have what I want, even if it's totally out of my control, it can send me into a bit of a tail spin.

Now realistically, in a restaurant, I've learned to cope with this disappointment and I will try not to get too cross and hopefully choose something else. I will sometimes have a backup dish that is acceptable that I can order straight away. But you can bet your bottom dollar deep down I am not a happy bunny.

I see it with my own children (who are both autistic too) and have less control at their ages, if we don't have the food they want, and their hearts have been set on it, it can be explosive!

I've had it with takeaways before if the wrong food is delivered. You've already built yourself up to having that food and then it is not there, it's the worst thing ever. I think a lot of you can relate to this on some level (especially when you have a hangover!) I'm just trying to get across to you how deeply upsetting it can actually be. And the reaction can seem disproportionate to the change.

Now whilst food is a good example it can cause much bigger problems if it's a much bigger change. I've upset friends in the past due to my reaction to a change that someone else is making and my first response can be quite negative and very self-centered. This is not intentional, it's just my first reaction. I'm a very kind and empathetic person and given time I will always see the other person's side and have a very caring approach and response.

However, initially, this will not be the feedback you get. My first reaction will be to think about how it affects me and I will be really upset. As I've said, I've already experienced something in my head and imagined myself doing the thing. So if that is then taken away I'm going to be cross and upset about it. It might even be that someone has an ill child or they are unwell themselves and that's why they have to cancel, but my first reaction is still thinking about how it affects me.

Me me me!

This is something I have found really difficult to come to terms with and actually talk about, because it makes me sound like a selfish b**ch.

I promise you I'm really not and I often?try to internalise these reactions as much as I can because of course you don't want to express it because you know no one will understand why you're reacting that way.

And you've learnt, as a neurodivergent child, that people get very angry with you.

But it's not healthy to suppress feelings and often it's impossible anyway.

I've lost friendships in the past because I've texted straight back and been very put out by a change. Only to later think about it more carefully and realise I should be asking if they're okay and if there's anything I can do to help and reassure them there's no problem with postponing etc.

Of course, the bigger the change the bigger the problem. For example, if a holiday or birthday dinner was cancelled at the last minute, I would be in pieces.

Don't get me started on job, house or relationship changes. Although at least people expect you to be upset by those. Sometimes it is simple changes that cause more aggravation.

So, how can neurodivergent people cope with this and save relationships and friendships?

Because as much as you can explain to people they're still going to find it very difficult to understand that reaction.

One thing you can do is definitely take time out to process the change before you react. If it's something by text message this is totally possible and exactly what I do now and it has made a big difference. Although sometimes I do reply in a reactive state, in the moment, and then later regret it.

However, if the news is relayed in person or by a phone call this is very difficult because I can't hide my emotion. That's something I find almost impossible to do even if I'm trying, my face usually tells the whole story or on a phone call I will go very quiet if I'm trying to suppress an emotion or deeply upset.

Therefore, another way to deal with this is to be honest and explain I am currently feeling very upset by this however please give me time to process the change and I will be absolutely okay, will take on board your reasons and I will understand fully why this is happening. Don't judge me on how I feel now.

Of course this is not always going to be met with welcome arms, but hopefully if someone knows you well enough and understands that you are neurodivergent they will realise that you're at least being honest and self aware enough to recognise that this is your first reaction, it is not your ONLY reaction.

I like to think of my first reaction as being like a reflex, I can't control it and it can hurt people, however it's not my intention. When I take time to think something through and process it, my genuine reaction is always kind.

I think my biggest learning point with all this has been understanding that it is actually a thing and it's not just me and I'm not an a**hole.?Because frankly you start to think that maybe you are.

I've had days since I found out I'm autistic with ADHD that I'm really glad I understand that's why my brain works in a certain way, however I also have days when I wish to God I wasn't because it really ruins things when people don't understand why you're reacting in a certain way and you can't stop.

Sometimes I see people online talking about autism or ADHD being used as a label and therefore used as an excuse for 'bad' behaviour and although I'm sure a handful of people are doing this, for the majority that is definitely not the case. We are just being honest about who we are and our brains do work differently, so maybe that's why you don't always understand. And that's why people like me write things like this, to try and explain.

Self improvement is key

I think whoever you are, neurodivergent or neurotypical, you should be as self-aware as possible and continuously work on yourself in order to be a kinder and better person. Being kinder to yourself is also essential (something I struggle with!)

I know that there are many things I cannot change about myself, being autistic and having ADHD are two of them. And truly accepting yourself is powerful. However, I CAN find better coping mechanisms and learn to understand myself well enough to at least explain when things happen that other people may not be happy with or expect.

Some people will never accept you for who you are but that's on them, I know in my heart I'm a good person and I will always try to be kind and understanding of those around me and especially of those that I love, and hopefully that's good enough.

I hope this helps explain why change is such a big deal for autistic people. And why the way you communicate it matters so much.

Obviously I can only speak from my own experience here and some of you may relate to this whilst other people may have a very different view.

What can you do to help ND people in your life?

What I would suggest is that if you have neurodivergent people in your life please speak to them and ask them how they would like changes to be communicated.

This is really dynamic stuff, to have this consideration and dialogue about it.

Also make sure you take a beat and understand that the first reflex reaction from someone is not usually a true reflection of what they think about you or the situation.

Probably quite the opposite to what you may have been led to believe, as neurotypical people usually argue that what you say first is instinct and the true thoughts coming out. It's not.

Please give us time to process and then we'll all be better off.

As always, thanks for reading. I'm sending you off into your day with love and ice cream.

Please feel free to reach out with questions or thoughts.

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P.S. When I am not crying over a restaurant running out of chicken I write kick-ass CVs for senior leaders, so check out my profile.