What most people know about autism they have learned from stories, many of them stories about mothers.
When autism first came into public consciousness in the 1960s, the stories most commonly told were of bad, unloving mothers, ‘refrigerator mothers’ who created such a harsh emotional environment that their children shut down inside, dead both to the world and to their own human feelings. As long as they remained in circulation, these stories did great harm.
Fortunately, in all but a few countries, they were overwritten by new stories, in which the Bad Mothers were replaced by good, heroic Autism Mothers, battling for their (usually male) children. In some versions of this story, particularly the earlier ones, autism is seen as the antagonist, from which the mother must rescue her child. In others, the mother must battle external forces on behalf of her autistic child.
In recent years, a new subgenre has emerged, in which the mother discovers that she is herself autistic, both an Autism Mother and an Autistic Mother. I know quite a few autistic women who are mothers and, in most cases, that is their story: first the child’s diagnosis, then their own. My own story is something different.
Motherhood didn’t begin well for me. I went into it knowing that I suffered from depression and anxiety, and aware that I might struggle more than most, but my desire to have a child was greater than any fear I had.
A miscarriage exacerbated my anxieties, and by the middle of my second pregnancy, I could barely cross a road, walk down a flight of stairs or swallow a mouthful of food without being assailed by visions of myself getting hit by a car, falling or choking.
My GP told me that I had to go back on my antidepressants or risk not being able to look after my baby. I took the medication, and my anxiety reduced a little. I wanted to do everything right. I was the biggest swot in the maternity class. I bought a birthing ball; I slept on my left side to get the baby in the best position; I attended a breastfeeding workshop where we were told that it was by far the best thing for your baby and that we could all do it…
This is the set-up to another familiar story, and you know where it’s heading – towards an emergency C-section, five days in a transitional care ward and three months of tearful struggle that ended with my son refusing the breast altogether.
His father seemed competent at everything – changing him, bottle-feeding him, reading his cries – so if I couldn’t nurse him, what use was I? I loved him desperately, but any confidence I had in my ability to look after him was draining away.
Despite the wonderful moments when he slept peace fully on me or smiled at the sight of my face, I felt that he was better off in someone else’s hands.
Joanne wrote: ‘By the middle of my second pregnancy, I could barely cross a road, walk down a flight of stairs or swallow a mouthful of food without being assailed by visions of myself getting hit by a car, falling or choking.’ Stock image
My economic privilege enabled me to pass him to people more expert than me. We had a postnatal doula for the first few weeks and after I was diagnosed with an underactive thyroid five months after the birth, we hired a part-time nanny who stayed with us for a year. It felt like a massive admission of failure.
My son, meanwhile, didn’t seem aware that he had a substandard mother. Once I had accepted that I was bottle-feeding, we got on very well. He was not hard to get on with.
He smiled early and often, found my attempts at singing or goofing around very entertaining, and – what was most extraordinary to me – seemed to have an instinctive understanding of how to interact with another person.
Even before he could talk, he would carry on his side of the conversation by kicking his legs against his chair or his buggy. An exchange would go something like:
Him: Smile, kick, kick, kick.
Me: How are you?
Him: Smile, kick, kick, kick.
Me: Shall we go out to the shops now?
Him: Smile, kick, kick, kick, etc., etc.
During our talk–kick conversations, I came to under stand something that I had never previously realised, which is that it’s the back-and-forth rhythm that make a conversation a conversation, and not the content, no matter how interesting. I wondered why I hadn’t realised this before, when it was so obvious to my preverbal child.
When he was eighteen months old, I got myself a diagnosis – of obsessive-compulsive disorder. It explained my extreme anxiety, my avoidant behaviour and the harsh judgements I made about myself, but it didn’t explain why my tiny son seemed to read me so effortlessly, when I had to concentrate to read him. I remember the lunch time when I realised this.
The essay ‘Sometimes the Other Way Around’ is published in the collection ‘The Best, Most Awful Job: Twenty Writers Talk Honestly About Motherhood
A few spoonfuls in, he made a choking noise; I visibly started and began to panic; he saw my face, stopped making the noise, and grinned. He was only just beginning to form sentences, but he had figured out that I reacted to that particular noise in a dramatic way, and had decided to trigger that reaction. It was a practical joke.
As he got older and more verbal, he would keep returning to my face and the odd things it apparently did. ‘Why is your face like that?’ he would ask. By the time he was four and a half, this had become ‘Why are you worried?’ At six, he observed that ‘I just saw your face change. You did that thing with your eyes when it looks like you’re cross but you’re not really cross.’ He was right: like a lot of autistic women, I have a bad case of Resting Bitch Face.
When my son was five, my brother took his own life. I was shattered, and left with so many questions about our family, our shared childhood and the difficulties we’d both had. My brother had been diagnosed with ADHD as an adult. I wondered if that applied to me too, but it didn’t seem to fit.
Then I discovered a website about the way Asperger’s Syndrome (a form of autism) manifests itself in women, and for the first time, I saw myself. When I was forty-two and my son was nine, I finally got my diagnosis.
My son is sixteen now, and I asked him to help me with this essay (for a fair cut of the fee, of course). I handed him a print-out of a National Autistic Society webpage, called ‘Understanding an Autistic Parent: A Guide for Sons and Daughters’.
It consisted of answers to commonly asked questions, about parents who don’t seem to understand what people mean, or get cross when their child plays loud music, or stressed when they bring friends home. I asked my son to add his comments.
There were very few of them. Next to ‘Mum keeps on about school all the time and shouts at me if I don’t do things straight away’, he wrote, ‘Not this.’ In the section about loud music, he underlined the words ‘sensitive hearing’ and wrote, ‘Not with anything I do, just loud noises in general’ (a sensitivity that, incidentally, he shares).
Next to ‘My mum doesn’t seem to know if I’m feeling a bit down. Why is that?’ he put, ‘Sometimes the other way around; I say, ‘No, I’m fine’, which is what he has to do when I can’t read his face and worry that I’ve missed something.
His only strong agreement is with the statement ‘Mum gets stressed if something unexpected happens’, which has been annotated on both sides: in the left margin, with an arrow and ‘very this’ and in the right margin, with another arrow, ‘e.g. delayed trains’. It’s true: I don’t mind surprises if they’re pleasant, but travel disruption freaks me out.
There is, of course, a big question behind all these little ones: how has my autism affected my son? It’s hard to know. What I can say is that I always knew I was different, feared that my difference was bad, and was determined to protect my son from it.
When he was a baby, I shared his care with other people who I felt could compensate for what I lacked. When he was at school, I did my best to maintain good relationships with other mothers, even when I found this difficult and painful, because I didn’t want him to lose out on friendships.
As he’s grown older, more articulate, and more able to do things for himself, it has become easier. I’ve come to understand that my anxieties around his well-being come out of traumatic stories that belong to me and my brother, and that I need to hold these separate from the story of my son and his mother.
He’s my son, but he’s his own person. A non-autistic but nonetheless very logical person, who is taking science A levels. He response to the question of how my autism has affected him was a scientist’s answer: cautious, rational and evidence-based. He wrote, ‘I’ve always lived with an autistic mother, so I don’t have living with a non- autistic mother to compare.’
Another fair point: he has only one mother, and she happens to be autistic. He’s not looking for another one though; to my surprise, he accepts me, our relationship, and the ongoing story we’re improvising together.
The more conventional tale might involve a neurotypical mother and her autistic son. But in some stories, like ours, it’s the other way around.
The essay ‘Sometimes the Other Way Around’ is published in the collection ‘The Best, Most Awful Job: Twenty Writers Talk Honestly About Motherhood’ (out now in paperback, Elliott & Thompson). Joanne Limberg is also the author of ‘Letters To My Weird Sisters’ (out now, Atlantic Books).