Reflections on parenting an autistic child
This is the third and final part of my write up of the talk I gave at an NAS conference. This was the part of the presentation where I talked a little about day to day parenting as an autistic mother of an autistic child, the strengths and the challenges. When I agreed to do the talk I asked what was wanted. My experience, which may be shared by other autistic mothers, is my experience. For it to work for me I had to use my own life as the main source. The NAS asked me to consider issues like difficulties with professionals and FD/MBP (which I wrote about in my last post) or why a mother might not understand that their child is behaving inappropriately in class. Yet, in my experience, one of the biggest problems has been me identifying problems, strategies and solutions which the teachers don’t understand!
Too like us?
Parents, usually mothers, sometimes recognise developmental delays and anomalies in their child which prompts a visit to the doctor or health visitor asking for reassurance or help. The anomalies may be apparent in comparison to siblings, cousins, friends’ children or peers at playgroups and childcare settings. My own limited social contact and my son’s aversion to group play meant I missed out on this opportunity to compare and rank his development. Although I had spotted signs of difference from very early on, it was subtle, and he wasn’t that different to his parents! It was easy to set aside my concerns that there was nothing ‘more’ that needed exploring. In time his differences and difficulties became more pronounced, his behaviour began to deteriorate, and he was assessed and diagnosed. As my son was being assessed there were two examples of fairly explicit missing of signs on my part, regarding sensory problems and joint hypermobility. Both are commonly associated with autism.
When my son was three and in nursery, he was assessed and recommendations were made by a local authority early years SEN advisor. She was quite brilliant and wrote a thorough report with lots of practical ideas for nursery to support his development. She discussed sensory difficulties and recommended the book ‘The Out-of-Sync Child’ by Carol Stock Kranowitz. I duly bought the book, read it, and failed to recognise any of the problems described. I gave the book to Oxfam. A couple of years later, as part of my son’s autism assessment, we saw an Occupational Therapist. In a very long assessment session, she explained sensory integration and processing and, suddenly, I realised why I was not seeing my son’s sensory foibles – they were the same as mine!
The OT also noticed that my son had very flexible joints and referred him on to a physiotherapist for assessment and advice. He had been alluding to shin pain but he had, and still has, a tendency to catastrophise. The physiotherapy assessment included taking a family history. As she started talking about joint hypermobility syndrome (JHS), I realised that the bendiness which is normal in my family is not normal at all. I had thought that my partner had abnormally stiff joints. It transpired that he has normal joints. Towards the end of primary school and early secondary, I had undergone a range of tests and assessments for debilitating joint pain. It was never properly explained, but the worst passed when my periods started and I learned to live with frequent sprains, clumsiness and occasional pain, laughing it off as another example of my crapness. With my son diagnosed with JHS and my newfound explanation for my joint problems, it was clear that using me as a model of ‘normal’ was a mistake.
In a way, I was lucky, had my son not presented with some fairly challenging behaviours, these issues would have gone unrecognised and we would have missed opportunities to improve the quality of his life. For some autistic mothers, particularly where their children are good at masking and are not exhibiting extreme behavioural problems, differences may go missed until a child reaches crisis.
Just like me
I do worry that, because we are very similar, my son’s opportunities and development are limited. I am fairly lax about conformity and place less emphasis on superficial ‘social skills’ than a more typical parent might. But whilst it’s hard to teach your child what you yourself find hard, it can also mean being more conscious of what’s really necessary. I’ve chosen to focus on building confidence and a sense of humour in my son, rather than more explicit social skills training. For me, ‘social skills training’ led by NT adults is an ineffective way to encourage positive social interaction for autistic children. It is often grounded in encouraging autistic children to fit in and be more like their peers (more normal?), rather than building on strengths and interests. I wonder too whether social expectations should be reduced, whether sometimes skills are pushed before a child is developmentally and cognitively ready?
I can’t help but feel there are advantages to parenting from a position of similarity. When a child cannot verbalise their needs, and even highly articulate autistic children can struggle with this, having a parent who is ‘in tune’ must make a difference. Thinking about my son’s sensory problems, it would be easy to dismiss them as ‘silly’ and ‘fussing’ if you have never experienced it yourself. It’s not about having the exact same problems either, it’s more about respecting your child when they communicate a problem. It’s not uncommon for autistic or neurodiverse parents to find parenting their autistic children easier than their NT children.
The social world of our children
Navigating the social world of our children is an essential part of parenting for any parent. When you are an autistic mother of an autistic child it can be a highly stressful experience. Baby and toddler groups are a significant source of support and shared experience for many mothers in the early years. My experience of them pre-dates my son’s (and my own) assessment and diagnosis. My son was bemused and withdrawn whilst I struggled to engage and interact with other mums. We both found them impossibly hard and I quickly realised they weren’t for us. Thankfully they are optional!
School gate social interaction is harder to avoid. In the early school years ‘playdates’ and social events are arranged through (mostly) mums, who forge new social relationships through their children’s friendships. The combination of a child showing increasingly challenging behaviours and a mother who can appear aloof and unfriendly can be extremely isolating for both parent and child. It is an uncomfortable position to be in. It is particularly difficult if an autistic child is not yet diagnosed. Classmates notice and draw attention to your child, who starts to get a reputation for being naughty. Other parents avoid you, assuming your parenting is at fault. They don’t want their child to play with your child. Even once the worst behaviours recede it is hard to come back from. I never fully recovered from playground pariah status, though I did manage to make a couple of friends who saw past my son’s and my own differences and became great supporters of my son among the other parents. It is considerably easier at secondary school where there is no school gate culture and the children mediate their own friendships.
Finding a balance
Balancing needs within an autistic family (my partner/son’s dad is almost certainly autistic too) is not always easy or indeed possible. Different sensory tolerances can create conflict and increase stress. A child’s need for physical contact might clash with a parent’s dislike of touch. Of the mothers I have discussed this with it is touch and proximity which seem to present the biggest challenges. It’s not that we don’t want to hug and snuggle with our children, we do, but sometimes it is really uncomfortable. Noise, smell, and lighting levels can all create problems. Eating together, often held up as a cornerstone of family life, becomes impossible when your child is repulsed by your culinary offerings, or when you can’t tolerate the sound of another person eating. Autistic families have to work differently to the idealised, often romanticised, cultural norms of family.
Parenting a child with any disability or additional needs invariably increases stress, anxiety and exhaustion. Autistic mothers are expected to not only maintain their mask of normality, but their mask of ‘good parenting’ too. I have nodded along when given advice, knowing that standard strategies for a typical child won’t work, refraining from explaining what I really do. Our family works best when we find collaborative, flexible and creative approaches to problems. To an outsider it can look like weak, ineffectual parenting, but we (mostly) know what we are doing and have a target in sight! We might struggle to parent in a typical way, but it does not mean that we don’t parent well.
Most of us have been offered and attended ‘parenting courses’. This might be standard or more specialised courses. I have heard of parents who are concerned their child might be autistic, or have other developmental delays, being sent on standard parenting courses before being referred for assessment. Sometimes it feels that this is a way to blame parenting for a child’s difficulties, and sometimes it seems almost strategic, as a way to delay assessment. I worry that expecting parents of yet-to-be-diagnosed-autistic children to work through strategies and techniques aimed at typically developing children causes unnecessary delays and wastes time when more appropriate skills could be developed. It is also concerning that, even when a parent has solid evidence that there is something different about their child which needs exploring, the first line of thought is that it must be parenting at fault.
More specialist parenting courses, like the NAS Early Bird courses, are offered once a child has a diagnosis. Whilst I enjoyed the Early Bird Plus course I attended, there were issues. By the time many parents get confirmation that their child is officially autistic, they’ve read, researched and trialled a whole range of approaches and techniques. For me, there was little new or enlightening learning and I don’t think this is uncommon. Being offered the course at an early point in the assessment process might be helpful, especially as it can take years to get from referral to diagnosis. A bigger concern for me on a personal level was how the course ‘othered’ my child. There was no recognition at all that parents might be autistic too. We were treated as if our children were alien to us. I experienced similar when I later attended a course on sensory processing offered by our local OT team, there was no recognition that parents might have a similar profile. Professionals running these courses need to up their game and recognise the (neuro)diversity of parents, not just children. It can feel like they have forgotten that adults, including women, can be autistic too.
To end this trilogy of posts, and I am extremely grateful you’ve stayed with me, I want to say that I think I do parent my son better as a result of him being like me. Judging by how hard it has been to encourage understanding by other adults in his life, I think it helps that I ‘get him’. My own autism means that I worry I am not the best advocate for him, as a result of my executive functioning and communication problems. I fret about whether I provide enough social opportunities or that I am too soft. But, over all, I think we are doing ok. I am ‘good enough’.