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ASPartOfMe
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07 Aug 2021, 8:36 am

'How could my tiny son read me so effortlessly, when I had to concentrate to read him?' Writer who was diagnosed with autism at 42 reveals interacting with her baby boy shed light on how her own mind worked

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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.

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.

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.

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.

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 b***h Face

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.

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).


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


StickBugette
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08 Aug 2021, 8:31 am

Wow, this is nice. Unfortunately, my NT daughter regularly laments having an ASD mom. And she does have another mom -- a stepmom -- whom she prefers.



SharonB
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18 Aug 2021, 12:23 pm

Interesting. TY. Since I am fairly self-aware this is generally not my dynamic with my NT child, but could have been. As it is, my ASD child who gives me more feedback.

She mentions "substandard mother". Even if it's tongue-in-cheek it points to the ongoing discussion of the good and bad of being/parenting while Autistic. I notice that all the memoirs I've read by ASD mothers avoid talking about parenting (all mention it -hence I know they are parents, but all gloss over it). Whenever I look up Autistic parenting or teaching, I get hits on the children or students being Autistic, not the parents or teachers. Does anybody know of a book that addresses parenting while Autistic more substantially?



browneyedgirlslowingdown
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16 Oct 2021, 2:09 pm

This made me cry. Thank you for sharing this. It was really helpful. It makes me feel really grateful to know now that I am autistic, and that my children are okay because I have a deeper understanding of myself too.


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Diagnosed ASD 5/17/21
AQ 40/50
Your broader autism cluster (Aspie) score: 153 of 200
Your neurotypical (non-autistic) score: 50 of 200
You are very likely on the broader autism cluster (Aspie)
Systemising Quotient (SQ) 78
Empathy Quotient (EQ) 41
CAT-Q 156 Compensation 56 Masking 48 Assimilation 52