Hello, and welcome back to The Autistic Writer. This week, I’m covering a subject inspired by my son David, who raised the question of what I wished my parents had been able to tell me about being autistic when I was growing up. Autistic readers of this blog might already have noticed something unpleasant about the title, this week. Don’t worry – I’ll come to that. Before I go any further, a quick mention that David is also autistic, and he writes the excellent blog, Mortgage Advisor On FIRE, which focuses on financial independence, along with mental health issues and, increasingly, autism.
To discuss the things I wish my parents had been able to tell me about autism when I was a kid, I have to set the scene a little, and briefly recap what my childhood was actually like, and how, in adulthood, I eventually found out I’m autistic.
My childhood was woefully unhappy, being raised not knowing I was autistic, and being the youngest child of three in what would have been described back then as a problem family. We were the poorest family in a working-class, northern English neighbourhood. I grew up in the 1960s and 70s, and no one I knew, including my family, had ever heard of autism. There were problems in my family with addiction, violence, abuse, and mental illness. My father was a very troubled person indeed, and was absent more than he was there. He had become a stranger to me by the time he died, and I harboured a lot of anger toward him. His behaviour had a devastating effect on my mother’s physical and mental health.
My mother was a very caring person, and eventually blossomed when our circumstances gradually improved. My relationship with her became a little difficult in my twenties, which was my fault, but we became much closer over the following years, and by the time a series of devastating strokes stole her away, we had a fantastic relationship. She died in January of 2015, around the time I was just descending into a private hell. I didn’t know it then, but that hell was autistic burnout.
Roughly four months after my mother passed away, I first mentioned out loud that I felt I was fundamentally different from almost everyone around me. This was in a telephone conversation with my son. I even mooted the term Asperger’s, although I still don’t know what prompted that, as I still didn’t have the vaguest idea of what autism was. Four years later, I was officially diagnosed with autism spectrum disorder. Those four years, and the four since, have been pretty tough. I’m about to turn 58 years old, and I’m now fully at peace with being autistic. I wouldn’t change it for anything. Many, many autistic people feel that way about their autism; despite all the problems we face, we wouldn’t want to not be autistic. This is something parents finding out their child is autistic should keep firmly in mind. Autistic children grow into autistic adults.
Knowing what I know now, I understand both my parents were autistic, too. That’s probably why they ended up together, despite being mismatched in so many other ways. It’s common for autistic people to gravitate toward each other. No surprise that I’m autistic then, and no surprise that after I was diagnosed, my son began to question his own neurotype, and was soon diagnosed as autistic. Parenting looms large in my life; thinking about my parents, about being a parent, and understanding how issues perpetuate in families from one generation to the next. My life could have gone down some dark paths, but becoming a parent probably saved me from that. I always said I wanted to be a better father than the one I had. My son reckons I succeeded, which is good to know.
Sometimes, I wish I had known about my neurotype earlier, so that maybe I could have piloted myself and my son through life more purposefully. You can’t change the past, of course, but you can speculate. And that brings me back to the question of what I wish my parents had been able to tell me about autism. I could probably fill a book with my thoughts on this subject, but for now, I’m just going to focus on the first few things that arose in my mind when David asked the question. What follows may well be informative and helpful to parents discovering their child is autistic, and wanting to help them through the years to autistic adulthood…
We’ll start with an easy one. If I’d been diagnosed in childhood, say the late 60s or early 70s, it would have been seen as a kind of illness. I would have been considered a flawed child, sub-normal, and in need of treatment or therapy, which would probably have been ABA (applied behavioural analysis), and all the trauma that inflicts. What a child actually needs after an autism diagnosis is the opposite of that. I would have wanted it to be explained calmly and clearly that I was different from other people, but not lesser, not flawed.
I wish my parents had been able to tell me that I was autistic, not that I had autism, which does make it sound like an illness, particularly in light of the fact that autism is diagnosed. For most people in most contexts, the word diagnosis indicates illness, and that mental connotation is hard to shake off. If you start off with an autistic child by making them feel there is something wrong with them, things are not going to go well. Some people think the distinction between has autism and is autistic is minor if not irrelevant. This is a mistake, as language can and does shape attitudes. Autism is not an illness, it is a neurotype. This particular neurotype comes with all kinds of benefits and drawbacks, but many of the drawbacks can be mitigated through simple social acceptance of our differences. Parental panic or dismay over a child’s autism is unhelpful and counterproductive.
Hyperlexis was part of my neurotype. This meant that as a child, other kids always commented that I used a lot of “big words”. I was reading books long before school age, and sometimes I freaked people out with my reading and writing ability. This hyperlexis meant I could express myself rather eloquently for a child, and I could also be rather persuasive. This was both the proverbial blessing and curse…
The problem was that because I could express myself so well, schoolteachers assumed this was a sign of generally high intelligence, and that I should be brilliant at everything. Reader, I was not brilliant at everything. Maths, beyond basic arithmetic, baffled me. Science, which I really wanted to enjoy, passed me by because of the dry and uninspiring way it was taught. History the same for the same reasons. Music was taken away from me by teachers who insisted – I kid you not – that I couldn’t play instruments because I was left-handed. I was okay at football but hated all other sports. My lack of manual dexterity meant I was hopeless at woodwork and metalwork. From the point I turned 11 years old and was faced with the daunting prospect of secondary school, I have lived with the tag of underachiever. Honestly, my self-esteem was shot to shit by being unable to live up to people’s expectations. Nowadays, I understand and recognise my autistic spiky skill set. I wish my parents could have primed me for working around the uneven nature of my capabilities as a child. It would have prevented a lot of unhappiness in later life.
The number of times I suffered autistic meltdowns and didn’t have a clue what was happening to me is remarkable. Most of these meltdowns occurred due to sensory overstimulation, but here is the thing: I didn’t know that I was being overstimulated. As a kid, I didn’t even know such a thing as overstimulation existed. In fact, I didn’t know it through most of my adult life, either. It has taken me a long time to realise that I don’t always understand how I’m feeling. Sometimes, things go wrong and I don’t know until long after it’s too late.
My meltdowns have been met with some really negative reactions, and I can understand why. People seeing me behave in that way when they have even less understanding of what’s going on than I do must assume the worst. I haven’t had a dramatic, public meltdown for a long time. These days, I’m more likely to shut down than melt down.
I wish my parents had been able to explain to me in childhood that my capacity for sensory load and social load has to be managed. The world and the people in it can be horrible for an autistic person to deal with, and sometimes we are just pushed beyond our ability to cope. I wish my parents had been able to explain to other people that my meltdowns were not tantrums. In fact, I wish they had been able to explain to people that all my behaviour was autistic, and thus bound to be different from other people’s. This might have helped with an older family member, who I used to call uncle, but who was, I think, actually a cousin. He once screamed down into my face that I was, “An ‘orrible little bastard!” I would have been four or five years old at the time.
School can utterly traumatise autistic children, leaving mental scars that will last a lifetime. This is in addition to the long-term stress caused by the masking behaviours that any autistic child will naturally take on to try and fit in with neurotypical peers. In my day, school was sheer horror. Teachers would routinely inflict physical beatings on pupils for the slightest or imagined infractions. Bullying between children was rife, and a great source of playground amusement for teachers. Then there was the sensory overstimulation, and the social pressure.
I remember pleading with my mother, when I was absolutely distraught and desperate not to attend school, literally begging for home schooling. But it just wasn’t possible back then for a family like ours.
I dealt with the horror of secondary school through rebellion. I refused to attend, and hung around with a bunch of other outcasts and rebels, until the education department found me a different, less pressurised school to attend. My attendance was still patchy, but a blind eye was turned to most of my truancy. The net result of this was that my academic education was full of holes, and this is something I have never really recovered from. Yes, I scraped a few exam results, largely on the back of a persuasive style of writing my answers- I definitely fooled people with my style-over-content approach to answering questions – but for the first twenty years of my adult life, I felt intellectually inferior to my peers. I’ve pulled this back a bit in later life, reading voraciously about all kinds of subjects, and landing myself a first-class honours degree in literature, but it’s not been easy.
I wish my parents could have understood exactly how harrowing school was for me, and why. Much of it was sensory, and much of it was social. I wish they had been able to arrange home schooling when I needed it. With the release valve of home schooling being available, I probably would have ended up attending school more regularly, when I felt up to it. Instead, I was pushed out of education because I couldn’t cope with school.
These days, it’s not so easy for children just to stop going to school the way I did. Autistic children are being forced to attend, as even now home schooling just isn’t a realistic prospect for many. This needs to change. Parents should listen very carefully to any autistic child who doesn’t want to go to school, because forcing them anyway will result in permanent psychological harm. The solutions aren’t easy to find, because parents are legally compelled to send their kids to school if appropriate alternatives are not available. There needs to be a change in legislation to accommodate autistic children in this situation, but that will only ever happen when parents of autistic children absolutely champion their child’s mental health alongside their need for education.
Throughout my life, from childhood right up to now, I’ve drifted in and out of relationships; friendships, romances, professional relationships, hobby groups, you name it. Sometimes, these relationships have ended badly, with me discovering I’m suddenly not wanted, but having no idea why. Many autistic people will be familiar with this situation. Sometimes, I’ve deliberately cut myself off from people because they have hurt me deeply. Sometimes, relationships have fizzled out while I’ve been oblivious. In middle age, I’ve finally worked out that I simply don’t know how to maintain relationships.
This is bizarre, because I can watch other people’s relationships from a distance, see how they work, and have a good grasp of the mechanics involved. But something goes wrong when I’m participating – or not participating, as the case may be. For whatever reason, I don’t translate my knowledge of how relationships work into the practicality of engaging in them. I think this is because the truth about relationships wasn’t explained to me early enough in life, so it didn’t become habit.
The truth I’m referring to is something that neurotypical people seem to know instinctively, but which hardly anyone talks about because it would be… unseemly. Here it is: All relationships are transactional.
A relationship is a bit like having a joint current account at the bank. You can both make deposits, and you can both make withdrawals. What you deposit or withdraw isn’t cash, though; it’s time, effort, communication, and contact. The account works best when you both make similar quantities of deposits and withdrawals. If you find you’re the one making most of the deposits and few or no withdrawals, then you’re being exploited and you’ll want to get out of the relationship. On the other hand, if you’re making lots of withdrawals and not depositing enough to cover them, then there’s a good chance the other account holder will move to a different account.
I spent much of my life being puzzled by other people’s ease in creating and maintaining relationships. They always seemed to happen naturally and organically, with little obvious effort. But it’s all an act, and eventually – but far too late – I worked out this transactional process. Up until the point I worked it out, I had been baffled and perplexed by the fact my relationships seemed to go off the rails, often with no warning. Almost no one will admit to it, perhaps even to themselves, but it’s all about balancing the books. Everyone wants to think that their relationships, especially friendships and romantic couplings, maintain themselves naturally, with no agenda. But once you understand the process, it becomes obvious in all relationships. The times when people do openly admit to this transactional process are usually when someone hasn’t been balancing their deposits and withdrawals. How many times have you heard someone come out of a romantic relationship saying their ex-partner was “all take”?
I wish my parents had coached me on this from childhood. For whatever reason, it’s something that doesn’t come naturally to many autistic people. It might be the flipside to our often intense demands of fairness; you should like me and want to be with me because of who I am, not because I keep track of who is doing the most texting, or whatever.
Since I went through autistic burnout, everything has become more difficult. I mean everything. Sometimes, just getting up in the morning and going to work feels like the thirteenth labour Hercules left to me because it was too tough. Work is often a problem for autistic people. Statistically, autistic people are more likely than the general population to be unemployed or in low-paid work. Alongside this is the statistic that autistic people are more likely than the general population to have money problems. I’ve had my share of money trouble…
I’ve mentioned I grew up in a very cash-poor family. As a young man, I struggled to find work, and I still point to a sequence of lucky events that finally led to me getting a decent job. But even with a wage coming in, I continued to have financial problems. Some of these problems were out of my direct control, but it’s also true that I didn’t have the first clue how to look after money, how to budget, and how to plan for the future. I would just spend what I had… or let other people exploit me and spend it for me. Failure to understand and manage money can be catastrophic for autistic people…
Consider that so many of us find it difficult to find well-paid work, and then put this alongside the fact that many of us will quickly get burned out by the jobs we do find, and that the effects of burnout contribute to the horrible mortality rate of autistic people. It doesn’t paint a great picture. This means it is absolutely vital for autistic people to have a good grasp of how to manage money, and how to secure their financial futures, so that we don’t have to literally work ourselves into the grave.
I wish my parents had had the skills to teach me about managing money when I was a child. Money is a game, and in the world we live in – a capitalist culture in which the elite will take the rest of us for all they can get – you have to know how to win at this game.
Of course, my parents could never have told me any of this stuff. They didn’t know what autism was, and couldn’t recognise it in me or themselves. They didn’t have the skills to give me what I needed. But things are different now…
I will never put this blog behind a paywall. I want anyone, anywhere, to be able to access this content at any time. There are costs incurred running this website, however. So if you like what I’m trying to do here, please feel free to show your support with a small contribution via buymeacoffee.com.
The above points I make about the kind of guidance an autistic child needs from their parents covers a range of issues that are vital to the prosperity of any autistic person: Dismissing the medicalisation of our neurotype, understanding the volatile mix of benefits and drawbacks of our neurotype, understanding the importance of our sensory differences and the nature of autistic meltdowns, the barriers to education and the mental trauma those barriers create, how to navigate relationships, and the crucial importance of financial literacy.
Helping an autistic child with these issues is going to have much greater benefit than the things parents of autistic children often get drawn into, such as the so-called therapies, treatments and interventions that leave autistic children traumatised.
That’s all for this week. Until next time, take care.
Darren
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Why Do I Write This Blog?
When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.
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