by Laura James
Most importantly, however, Sarah gave me permission to be kind to myself. I plucked up the courage to tell her I had been struggling. That life had overwhelmed me and I was beginning to think that, although I had accepted my autism diagnosis on an intellectual level, I was struggling emotionally. I had all the information I needed, but I wanted now to file it away and get on with living as neurotypical a life as possible.
She said: ‘What I always say to people is, go easy on yourself for at least the next six months because it is going to be a roller-coaster ride. You’re going to have days when you wake up in the middle of the night and suddenly think about something that happened twenty years ago and you’re going to go, Oh my god, if I’d have known this, then such and such – this relationship, this job, this crisis – wouldn’t have happened.
‘That can make you feel furious. It can make you feel devastated. It can make you feel militant. You need to change absolutely nothing until that beds itself down. It’s that massive dip of reviewing everything that people go through.
‘I say just stop. You are going to experience all sorts of things that you might not expect. It’s huge. Absolutely huge. Some people don’t need anything beyond that knowledge. I think, though, that many people – particularly women – need to find their tribe. I point them in the direction of blogs, Twitter, Facebook communities.
‘It’s about realizing you are not alone and there are lots of people out there who get you. When you share your experiences they don’t look at you weirdly or frown or say, you did what? This might happen for the first time in your life.’
Dr Kajee’s advice is that there are small steps that can be taken to improve everyday life. She told me: ‘We can all do things every day to make our lives easier. I think for autistic people it’s about arming themselves as much as they can with knowledge about who they are and then just trying to live their life like that.
‘It’s about recognizing that this is who I am. My experience is that a lot of autistic people also compensate, so they have mechanisms that they have built up through the years, especially if they get diagnosed later. I saw somebody once who told me they would put on a normal cycle when going to a party. A normal cycle means you introduce yourself, you say hello.’
I ask Somayya what families can do to help. ‘I suppose the first thing is that families need to be educated. There’s knowing what autism is, of course, but it’s important for them also to know the person in their family. Who they are and what works for them. That’s where they can come together. Families can come to loggerheads sometimes, but usually it’s just that lack of understanding.
‘I think it’s harder when you’re younger and you’re at school, having to be in that environment. So, the earlier families can recognize and be aware, the better. They shouldn’t think oh, it’s nothing. If you are unsure, if you are uncertain, have it checked out and don’t blame yourself. It’s not anything you as a parent did. We know it’s not related to parenting.’
Of course, I still feel sad that I wasn’t diagnosed earlier. That I have to try to make big changes in my life at a time when I should be starting to slow down. At other times, I feel cheated out of the life I think I should have had. These feelings are fleeting, though. Mostly I feel lucky that I have been given this opportunity to know myself better.
In finding other people to spend time with I have stopped expecting Tim to meet my every need. We are embracing doing things together. We walk and cook together now. We binge-watch box sets. We buy each other books we think will be appreciated.
I think about how I would treat someone else in my position and decide it would be with extreme kindness. Kindness and understanding. I have to learn how to take care of myself. But, more than this, I need to allow myself to give up enough control so that I can ask Tim to take care of me when I’m feeling vulnerable.
We’re the only people in a tiny cafe. Tim is looking daunted by the full English breakfast that has been set down in front of him. My plate of scrambled eggs with salmon is a little less intimidating, but not by much.
‘So, what did you want to talk about?’ he asks.
‘I want to have a practical session on the things I want to change. In the past I’ve had such good intentions about changing things, but somehow they haven’t worked. I want this time to be different. I know I can be awful, full of big ideas that, too often, I haven’t seen through. I know what I’m doing, I promise. I just need a bit of help and I’m determined not to get derailed again.’
‘Trump?’
‘Why do you say that?’ I ask.
‘You’ve been talking about him a lot.’
‘Have I?’ I hadn’t noticed. ‘I find it terrifying. He doesn’t play by the normal rules. He’s so mean to people online and his campaign is so loud and brash and antagonistic. It frightens me.’
‘He won’t win,’ Tim says with certainty.
‘Why do you insist on saying things like that? They don’t help. You’re wrong about Hillary. She won’t win the states that matter. I need you to stop telling me he won’t win. I know he will. What I really need is for you to help me to prepare for it.’
This feeling – and those which I felt in the weeks after the Brexit vote – isn’t all rooted in politics. Mine are decidedly left of centre, but in some ways it’s irrelevant in the context of my autism. My pain and fear come from the fact that there seem to be no grown-ups in charge. No one seems to know what’s going on, what will happen, when it will happen and what it will mean. The normal rules are being thrown out and I don’t know how to deal with it.
Tim gives up on the huge breakfast and pushes his plate aside. I pour some more tea from the pot. ‘It’s too much change all at once,’ I say. ‘It hurts my head and makes me hyper-vigilant. I feel if I turn away from the news or stop looking at Twitter, something else will happen and it will be bad.’
Head teacher Sarah Wild saw evidence of how the Brexit result affected those with autism at her school. She told me: ‘It was a very interesting time. I had three girls in here just crying, which I’ve never seen before. They were really very emotional about it, and were extremely anxious about not knowing what was happening.
‘I think they were affected by the fact that people they always thought had a plan – like politicians – actually had no plan. It was as if they thought, You can look like you’re in charge, but maybe you’re bluffing. It calmed down by the end of term, but it was a rough time.
‘I think the worst part was when it became apparent that there actually wasn’t a plan. The girls thought literally anything could happen. It was as if we’d undone the laws of physics or something and nothing is holding everything together.
‘I wonder what effect it will have in the future, on their view of institutions and who is keeping them safe, because at that moment they didn’t feel the government was keeping them safe.
‘In the end I had to tell them that I am in charge here. While we’re all here, we’re all safe and I have a plan and can tell you what it is. So let’s get on with the things we’ve got to do.’
It was exactly what Tim had been saying to me: I had to focus on the things I could influence and on my own life, my own everyday.
‘I know I’m not meant to talk about politics or Trump,’ I say. ‘But I want to move past worrying and I’m feeling a bit stuck.’
‘It’s not that you’re not meant to, it’s that sometimes you allow your obsessions to get out of control. I don’t want to take them away from you, I want you to be able to see when they become too much. For the rest of us, but for you too.
‘Let’s focus on the things we can change and try not to think about the rest.’ He pauses and then surrenders to the inevitable. ‘I guess we need to talk about money.’
Money is one of those issues we have never really managed to deal with effectively. Most of the time we don’t talk about it too much. I worry about it quietly on my own while Tim is always sure something will turn up and it will all be OK.
It is clear, though, that we have to focus on bringing in more money and spending less. I am a financial disaster zone. I don’t understand anything about finances, rarely manage to save any money and have never had a pension to pay into. Time is running out. I need to address what is a huge issue, but I am now in the worst possible place to do so. Our lives have bumbled along, earning enough money to pay the bills and a bit more, but with such poor organizational skills I was unable to see the cliff edge towards which we have always been heading.
‘Sorry,’ I say, ‘but, yes, we do need to find a way to spend less and make more. Surely as grown-ups we should be able to manage to deal with this sort of thing.’
One area where I need help is with executive function, which in me is sorely lacking. I find it difficult to structure my day and impossible to plan tasks or estimate how long something will take to finish. I find it difficult to organize myself.
Judith Gould provides an interesting perspective. ‘It’s being able to plan and organize yourself. It fits in with the lack of social imagination. You’re given a task and you have to then work out the best way of solving the problem. That can vary.’
This is an area where I lean on Tim, but I can lean on him more. Ask him to help me to plan my day, my week, the next project. Whatever. I must see my autism not as something to fight, but instead as an integral part of me.
I realize one of the reasons I struggle so hard to deal with change that happens or trying to bring about change is because of my lack of ability to imagine what life will be like if it were different.
I am reminded of the story of an autistic college student. The boy had classes at 8.30 a.m., but the battery in his alarm clock had died. He was concerned he would oversleep and miss his lessons, so had to think of a solution. The one he came up with resonates so deeply with me. He decided to sleep in the classroom at school. He lacked the adaptive skills to replace the clock battery.
I have so many of these kinds of incidents in my life, that I have stopped noticing them. Perhaps the most dramatic was the first time I ever drove in the snow. I noticed my car was behaving differently on this unusual surface. I realized I didn’t know how to deal with it. I did what at the time seemed utterly logical. As I lost control of the car, I opened the door and threw myself out.
I was lucky. The car narrowly missed my head and brought itself to a halt by crashing into a tree. Since then I have avoided driving in snow whenever possible. On the occasions I must do so, I inch along at a couple of miles per hour. Until this moment, it has never occurred to me to ask someone to teach me how to drive safely in the snow.
Many autism experts believe daily living skills, such as managing finances, need to be explicitly taught to people on the autism spectrum. Everything most non-autistic people pick up as they go along – how to shop, catch a bus, cook, clean, or manage money – are skills that are difficult for me to acquire simply by assimilation. I need a book, a video or someone to explain and show me how to do them.
There’s a perception that anyone with average or above average intelligence will naturally pick up these skills. Strangely, intelligence seems to have little to do with it and one study even found that problems of this kind are especially prominent in those autistic people with greater cognitive abilities.
I have been lucky that I managed to somehow muddle through. The points where my deficits might have been picked up were missed or the people who have helped me have failed to mention how unusual my issues have been.
Every month the phone would be cut off. I had no system for paying bills. In the past, we have had to have a pre-paid electricity key. Even now something unexpected – like a demand to pay the Dartford Bridge toll – can go unpaid until the amount has more than tripled. I cannot adequately explain why this happens.
My bank manager and accountant got together and sorted out a system for me. It was a simple one. I would have two current accounts: one to use with my debit card, the other for direct debits. Rather than paying myself only when I thought I needed to, a set monthly amount would go into my bills account and each week an amount would be transferred over to pay for daily living expenses. The system worked well. At least it did until I started earning less money. It hadn’t occurred to me I would have to cut back.
Such flawed thinking is at the heart of my autism. I knew I was bringing in less money, but somewhere the link to that and actually having less money was missed.
I posted something about being unable to manage money on a Facebook group for autistic women and got some very helpful advice. Someone suggested going through all my direct debits to see if we still needed everything they related to. Another suggested working out the bare minimum we can live on each week and changing the transfer between accounts to that amount. ‘It’s called budgeting,’ she said.
I tell Tim about this. ‘It’s not very exciting, is it?’ he replies.
I can see his point. This year has probably been the least exciting of our lives. We’ve barely been out and haven’t managed to get away, even for a weekend. I need to make it clear here that Tim and I have never lived a crazily extravagant life. There is no Ferrari on the drive. I have never been on a yacht, let alone owned one. We have been on holiday to Italy or France just a few times in our twenty years together. It is the small things where I fall down. Living with a condition such as autism can actually be hugely expensive. Poor executive function and the inability to plan make doing a weekly shop, for example, a difficult thing to contemplate.
‘No,’ I say. ‘But that’s sort of the point. If we can get to the stage where we’re not spending money indiscriminately – frittering it away on nothing – we will be able to save some for the exciting things.’
‘I looked at our bank statements yesterday,’ Tim says, ‘and we seem to spend all our money in the supermarket or on takeaways. I actually can’t think of anything more boring than that.’
‘I think the key to this particular problem lies in forward planning,’ I say.
After my diagnosis someone sent me a copy of The Rosie Project, a novel about a man with Asperger’s looking for a wife. I picked it up yesterday and read it in one sitting. I related to the main character, Don, who has Asperger’s, and his Standardized Meal System intrigued me. I wondered if I could adapt it to suit real life. After all, if I could come up with a list of meals for an entire week and work out how to shop for them, I would not only save money, but also hopefully manage to eat too.
‘I’ve thought about some of the things that need to change. I think we need a standard weekly meal planner.’ I’d passed The Rosie Project on to Tim when I’d finished it, so he was aware of where the idea had come from.
‘So essentially you want me to become Don?’
‘Ha. I can’t see that ever happening. No, we just need to make a list of our favourite things to eat for breakfast, lunch and supper and assign days of the week to them and then write a list of all the ingredients we will need. We write the dates they will be eaten next to them to ensure the perishable items won’t have gone off before we plan to eat them.
‘Then we need to buy a whiteboard for the kitchen and write the standardized weekly meal plan on it. We will have the same things every day, so we know what to expect. Say, chicken burgers on a Monday evening or pasta with pesto on a Wednesday lunchtime.’
‘It’s quite prescriptive,’ Tim says. ‘What if we fancy the pasta on a Tuesday? What happens if we’re not hungry on a Wednesday evening? What if we’re really hungry on a Friday and the meal planner police say it’s prawn salad?’
We both laugh. ‘I think it will only work if we try to stick to the right days for a while and then, when we get better at it, we might be able to make some changes.’
‘Will it make you happy if we do this?�
� There is real kindness in the question.
I tell him that I think it will. I tell him that we have to be more organized and that I have to start to eat properly as I’m losing too much weight and feel exhausted all the time.
‘Then let’s do it,’ he says.
Tim offers to go to Waitrose and we write a list. I’m going to try to have a smoothie for breakfast every day, some pitta bread with hummus and tomatoes for lunch then the set supper of the day. This takes some negotiating. Tim hates the idea of eating the same things for breakfast and for lunch and so lists something different for each day. After some compromise on both sides we reach agreement on the suppers.
There’s a niggling thought in my mind that I should have known how to do this years ago. Watching Tim outside having a cigarette, I google ‘weekly meal plans’ and get more than four and a half million results. I thought this was something unique to The Rosie Project. Now I see that it’s likely most grown-ups have some plan of this sort in place.
‘It seems like we’re coming quite late to this party,’ I say to Tim as he sits down again. I turn my phone screen towards him. ‘It looks as if everyone does it.’
He laughs and suggests that while we’re here, we put other plans in place.
‘It’s your turn to add something to the new life plan,’ I say. Weirdly I’m quite enjoying this.
‘I’d like it if you walked the dogs with me more,’ he tells me. ‘Getting Huxley was your idea and training him was one of your obsessions when he was a puppy. And you did a great job. We’ve never had a better-trained dog. But it’s really not fair that I now have to walk them both on my own every day. Plus, it would be really good for you to get some fresh air. You have a vitamin D deficiency you do nothing about and getting outside will probably help.’
I like this suggestion less than the meal plan, but agree to going on at least three walks a week. I feel a bit like a child, but realize that’s probably because I am behaving like one. The fact is it was me who wanted another dog and I haven’t walked him for ages.