Seventy years ago Leo Kanner published his seminal paper describing autism. In that paper he also coined the term “refrigerator mother” apportioning some of the cause for the distinctive profile of autistic behaviour to cold, harsh parenting practices. In these cases, Kanner had observed a tendency for mothers of his autistic cases to be highly-educated, career-minded women. According to the social norms of the day, it was unthinkable that such women could also be nurturing, loving, communicatively responsive mums.
Of course now we know that this is total nonsense. Years of scientific endeavour have demonstrated that autism has a biological basis (to be fair, Kanner also suggested this as a possibility), a complex interplay of multiple genetic risk factors and environmental circumstances. Such work has also led us to a better understanding of the ‘broader autism phenotype (BAP)’. The genetic influences that give rise to autism also affect first-degree relatives to a milder degree. Thus, many (but by no means all) parents of children with autism themselves have milder features of the condition. This may be manifest in social communication styles, but in no way do we now suggest that these differences in social communication CAUSE autism. In fact, we also realise that communicating with autistic children can be quite challenging, especially when they have very limited expressive language skills. For these reasons, our most robust clinical trials for autism involve parent mediated interventions specifically designed to enhance communication and language input. Importantly though, this focus on helping parents to communicate more effectively with their children does not presuppose that their input is what caused autism in the first place.
I’m increasingly puzzled and frankly annoyed that when it comes to another neurodevelopmental condition, Developmental Language Disorder (DLD) we persist in blaming parents for not providing enough good quality language input for these children to thrive. In this case, the association between DLD and parenting is with less well-educated mums from more socially disadvantaged backgrounds, though of course not all children with DLD are from poorer backgrounds and not all children from poor backgrounds have DLD. Although the association is significant, as any first year psychology undergraduate can tell you ASSOCIATION DOES NOT PROVE CAUSATION (see blog by Dorothy Bishop here).
Instead, like autism we now have overwhelming evidence that DLD has a biological basis. Twin studies have demonstrated time and again that genes influence variation in language ability between people: if an identical twin has DLD, the co-twin is very likely to have some form of language disorder as well. In contrast, fraternal twins growing up in the same family can be very different with regard to their language abilities. Molecular genetic studies are beginning to pinpoint some of the genes involved, but like autism, this is extremely complex. Nevertheless, these biological risks may also influence parent language (and therefore literacy) competencies. Some parents of children with DLD (but by no means all) will themselves have milder forms of language disorder, which likely affects social capital. But differences in the amount of talk to their children should not be seen as causing DLD – language development is pretty robust in the face of social challenges in all but the most extreme circumstances and thus DLD should primarily be seen as what it is: a biologically based neurodevelopmental disorder.
As a parent myself, I’ve never understood why anyone feels they have the right to insult or criticise other parents. Being a parent is by far the most challenging thing I have ever done, without any training about how to parent, and I certainly don’t recall anyone (midwives, health visitors, National Childbirth Trust, nursery staff) showing me how to talk to my baby/toddler or instilling in me how important early language development is. I remember clearly a day when in a panic I thought ‘what on earth am I going to do with this screaming baby all day long?!’ Once I’d calmed down, I realised that I could just talk to her, providing an ongoing narrative about what we were doing, what she could see, how I thought she felt. Initially it felt pretty weird, but she was soon extremely responsive to what I was doing and that was hugely rewarding.
I thought about talking because I am highly educated and clinically trained to develop children’s oral language skills. I’m also incredibly privileged and didn’t have a head full of worries like can I pay the rent, is the house damp, does she have clean clothes, will my husband lose his job, do I have a husband/partner, if not how will I manage on my own, how can I look after her and all the other kids, will friends help me out, am I depressed, etc etc. For many parents, talking (or reading) to a child is not a natural thing to do, and this can be even more challenging if the child is not developing or responding as expected.
In all my years of working with families, I have never once met a family that did not want to do the very best for their child. I have occasionally met families that did not have the knowledge, experience, or resources to provide the ‘best’ (and yes, we could spend lots of time debating what the ‘best’ might be). Far more often I’ve worked with families who are desperate to help their children talk and often adapt what they say and do to get the child talking. These parents often have painful tales of how hard it has been to get professional help, how frustrated they are by the lack of support, and how worried they are about the future for their child.
Note that just because something is influenced by genetic risk factors, we are not powerless to make positive changes. Like autism, most interventions for young children with DLD will involve working with parents. We have much to do to improve the evidence base for interventions, but there is some evidence that parent mediated interventions increase language competence in targeted areas, and increase child use of compensatory strategies (like using gesture) that enhance communication success. Intervention does not, as yet, cure DLD. Perhaps most importantly, intervention can serve to increase parent confidence in their own communication abilities. The best feedback I’ve ever had came from a parent who told me ‘I did not know how to play with him when I came here, but now I actually enjoy the time we have together.’ And to be honest, a happy child is the greatest wish any parent has.
So if you are the kind of person who has the time to write in and comment on a newspaper article, but use that time to insult parents and children who may be struggling for a multitude of reasons, may I suggest you use your energy to more positive effect? Write to your MP instead and inform him or her of the importance of oral language to societal success. Ask them to ensure oral language is properly reflected and monitored in the National Curriculum and urge them to increase funding for special educational needs provision and speech-language therapy services. I promise this will feel much better than blaming parents for something that is not their fault.
Courtenay kindly gave permission for us to replicate this blog first published here. Courtenay is the editor of JCCP Special Issue on Developmental Language Disorder (DLD), which is FREE until the end of October 2017.