by Nanny Aut
I was watching a talk the other day and, among other things, it explained that rather than teaching autistics to be who they aren’t, you should look at ways to support them in ‘living their best life’. And it got me thinking, what does ‘living my best life’ look like to me and how I would go about achieving that.
It was a harder question than I thought because I am without doubt, not living my best life, even though I have full autonomy and, in theory, have all the knowledge and skills to do so. And for the most part, it isn’t something I have put a lot of thought into. I am living a good life, one that is significantly better since I learned I was autistic and made a lot of changes and accommodations to support my neurology. But not my best.
After a lot of thought, these are the things that I have come up with for my ‘best life’. At the top of each section are the things that I am already doing and make my life good. At the bottom are the things I would need to achieve to make my life better and why I struggle to achieve them. I have split it into three areas – community, autonomy and contribution.
This is the big one. The sense of belonging and full acceptance of who you are warts and all. Your kin. This is the one I struggle with the most, partly because the very nature of community is that it is two-sided. You can make every effort on your side to get it right but if the other person wants to be hostile or exclude you there is not a lot you can do about that.
Having friends that accept me just as I am came later in life and I treasure those friends greatly. Whenever they reach out for a friendly ear, some support, or even a random act of kindness I do my best to always be there. I also have a strong and deep bond with my daughter, which is the most precious thing in the world to me. I spend a lot of time on Facebook and my contributions seem to be received positively.
However, good as this all is, it could be better. I have little to no connection with my parents or my sisters, even if we are in the same room, and this makes me sad. I would love to connect with them properly and for them to see and accept the real me and for them to show more than the barest surface of themselves. I have made my peace with the fact that they have no desire at all to connect with me and stopped striving to figure out ways to connect several years back, but it still makes me sad.
I would love to be able to show my friends better how much I treasure them. A combination of autistic inertia, poor executive function, RSD (rejection sensitive dysphoria) and time blindness means that I am poor at initiating contact on a regular basis. I either get caught up in routine or a particular project, mean to contact but forget until it is too late in the day, get panicked that I am disturbing or annoying them, or simply don’t realise that several months has passed since we last talked. When they initiate contact I am delighted to hear from them and feel guilty that, once again, they were the ones who had to make the first move.
I would also like a larger group of acquaintances, but my anxiety in new social situations does not exactly endear me to people. Particularly my talking too fast and too loud leaving no space for others to contribute or connect. So, they never get the chance to see the calmer, quieter me. RSD also means that the other person has to make all the running in the first stages of the friendship because I am excessively anxious around scenarios where rejection is potentially involved. And I am terrible at picking up cues, so people may have been making overtures and I may have been completely oblivious to them. Not to mention the fact that I am already terrible at keeping properly in touch with the friends I do have.
As for a partner, I am very ambivalent as to whether having a partner in my life would contribute to my best life or not. On one side having someone who is on your team is great and the love and companionship of a good partner is wonderful. And having someone share the load of daily life such as splitting the chores – dishes, cooking, rubbish etc. is also a very positive thing. On the other side, to get this you lose your own space and have to give up a share of your autonomy. Having been through an abusive marriage where I willingly gave up all my autonomy to keep my partner happy and had to then fight hard to even get some autonomy back later when I needed to, I am too scared to risk a repeat.
The reason I suffer so badly from RSD now is because my mother so desperately wanted me to belong and have friends as a child. She did the best she could to help me achieve it and it backfired spectacularly.
In childhood, I was raised to believe that the ultimate marker of success for a person was to be popular. I was also raised to believe that I was unacceptable, unlovable and defective. I don’t believe that was my parents or even my teachers’ intentions, but it was very much the consequence of their actions. Not being popular meant that, no matter what your other achievements, in the eyes of the world, you were a failed human being. If you got bullied then you deserved it for the sin of not fitting in and being popular. Every time I got attacked, teachers always asked what I did to provoke it and blamed me instead of addressing the bullies.
My mother would lament over and over about my lack of friends and query what I was doing so wrong to repel my peers the way that I did. Putting in a LOT of effort to ‘fix’ me and ‘make me more normal’. And I knew from early on, this meant I was not ok to her. Knowing I disappointed her so badly and that she saw me as unlovable, shamed me deeply and hurt worse than any lack of friendships at school. Socialising was a litany of corrections – eye contact, but don’t stare; take part in the conversation, but don’t interrupt, talk too much, be interested in what you are talking about, talk too loud or fast; be a good listener but offer nothing of yourself; don’t fidget; sit still; sit straight; don’t mimic others accents (something unconscious I still do, it is part of chameleoning); smile, be charming, but not creepy; immaculate presentation – woe betide a smudge or hair out of place. etc. etc. etc. Every social interaction was torture. Even if she wasn’t there with her killer stares, frowns, pursed lips, shake of the head, eye rolls – all to be followed post-event with a blow-by-blow list of how I had shamed her – again – she was there in my head criticising and correcting every word and every move. Her voice is still there fifty years on – a lot of work has helped make it quieter. But it is still there. The irony was that she did this to help me fit in and belong, to feel comfortable socialising. Thinking it was lack of will rather than lack of knowledge that was the barrier. Instead, her constant critiques taught me that I could never fit in or belong, and that I didn’t deserve to because I was defective.
It is possible that there were times where she was positive and praised me but if she did, I cannot remember it. The clamour of criticism drowned out everything else.
For my daughter, it was like I was given a re-do. While I did explain other people’s perspectives on things, I made sure she always understood that the issue was misunderstanding. I made sure she knew I understood that her intentions were positive, even if the outcomes sometimes were not. When other girls were unkind in school I made sure she realised that it was not her fault, it was their fear of difference, not her being different that was the problem. Luckily, she made a good friend in primary school, a lifetime friend, and her friend’s mother was a kindred spirit, now a lifetime friend of mine. So both of them reinforced the belief that they were likeable just as they were and if others didn’t get it, that was their problem. Seeing my daughter’s confidence and ease in finding and socialising with kindred spirits, reinforces my belief that it is entirely possible to be your whole authentic self and still have the social life and sense of belonging that you want. You just need to avoid the judgemental ableists who believe that only the NT (neurotypical) way is the right way. And not have RSD from being taught that masking is the only way to fit in and belong.
This I score very highly in nowadays. I yield autonomy to very few. I have learnt to say no to a lot of things I was too scared to refuse before. I can, on occasion even express my needs to others. More rarely, once in a while I have even managed to ask for help when I needed it.
However, does this mean I am always able to do what I want when I want.
I want to be able to exercise regularly. I want to be able to eat properly, every day. I want to be able to keep my house neat and tidy (not dusted but not a health or trip hazard). I want to be able to keep my garden looking well and to remember to tend to my plants properly. However, I have not yet got a handle on autistic inertia or executive function challenges. I do have some workarounds that keep the basics running – a game I enjoy playing that encourages me to exercise that is built into my morning routine. A freezer full of food, especially vegetables and cooking a six portion meal on Saturday and freezing five to give me a range of home cooked meals to defrost during the week. Tidying the kitchen in five minute bursts whenever I make a cup of tea, and having boxes that I scoop everything into and then sort from. Accepting that a clean basket of laundry is OK. It doesn’t have to be put away if you don’t have the energy. The garden – well – that is still a hope without a solution.
Having routines and lists make things easier, but routine can be easily blown by unexpected events and bouts of exhaustion, illness or even anxiety and depression. The last two are less frequent visitors now and rarely stay more than a day or so, but do make it hard to then transition back into the familiar routine.
Saying no or asking for help is still terrifying. I get a tight knot in my stomach every time. The anxiety can be so bad it can cause a meltdown. This is a learned response from childhood, part of my RSD. As an adult, I have rarely, if ever, received a hostile response from friends if I say no, or if I ask for help. They may say they can’t help but they aren’t aggressive about it. I know it is not a logical thing and yet, even on the most simple requests, such as asking someone to contribute to this site for Aut Thoughts or Artistic Autistic, it will take all my courage to ask, and days to build up the courage to chase up if there isn’t a response straightaway. And there is not a single negative response that I have had to warrant it. Even the ‘No’s’ were friendly, explaining why they couldn’t contribute at this time. Everyone has been nothing but kind. However, managing my RSD over this means that the weeks I am lower on energy, this becomes a task I no longer do. I have been really fortunate that I also have people like Aiden Tsen, who came forward to volunteer so I did not have to ask. And who is now a really valued member of the team.
Of course, if others want to contribute, we are always looking for contributors and you would save me this anxiety of asking by emailing firstname.lastname@example.org. Shameless plug I know, but genuinely contributors are greatly appreciated. There are so many great autistic voices and artists out there and we want to be a platform for as wide a range as possible.
I think a lot of human beings have the same drive. To make a difference. To contribute. To have your existence matter.
Growing up, it was drummed into me by my parents that I had a lot of intellectual potential – that I should be an academic superstar. Potential I never lived up to. My best efforts moved me above average but it was never good enough. Even a first in Mechanical Engineering was no good as it was done in my late twenties from a ‘lesser value’ academic institution (my parents’ words, not mine).
And over and over in life I went through the same routine. People applauded my work ethic, they applauded my level of contribution – but since it came as a package with me, they would rather do without, thanks all the same.
I would like to think that I have made a difference though, along the way, and others have told me that I have (RSD wants me to believe they were just being nice) – clients when I ran my business, students when I was a teacher, my daughter and even friends I supported when they needed me. And hopefully Autistic Village and my blog on Inside Aut is the next chapter in making a difference even in a small way.
Would I like to do more? Absolutely. I would love to be a valued member of a large team, for the Village to grow and expand. I would like to do more academically valid research than the four years of informal Grounded Theory work that informs my Inside Aut series. I would like to be part of the autistic advocates that finally persuades educators and therapists that ABA needs to stop – for good. I would like for people to notice when I am absent (yes, I do have that level of ego) and to miss me. I would like for people to be excited about my written work and comment on it and share it enthusiastically (Hint. Hint 😊).
I am aware that throughout this article I haven’t made one reference to sensory or processing challenges (until now) and only passing reference to communication challenges. That is because they are such part and parcel of my life – managing them well makes my life better, not doing so makes my life worse. And because I have gone on in great length in my Inside Aut series how to manage them well. For those who haven’t come across this series, I recommend starting at article one, on managing our processing demands.
If I had to sum up my best life in one sentence – I know, few words are not my strength – it would be a healthy environment, a community where I am valued and accepted, autonomy where I can gain mastery of my own demons of executive dysfunction and RSD, and being able to make a valued positive difference to other peoples’ lives.
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