Mummy Guilt- Are we driving ASD Mum's back to the 50's?
Since becoming a Mum ten months ago, my life has revolved around baby, but I can't help but feel I gave birth to twins on that day. One a very healthy 9lb 2oz baby girl, and the other a twenty stone weight that weighs heavily on my back, guilt. I had heard about "Mummy guilt" but had never given it a second thought. Having worked with children for the past nineteen years, first in childcare and then in special education, I had thought I had pretty much seen it all. Naive as I was, I was completely unprepared for the guilt that came with first carrying my baby, then giving birth and finally raising her. A recent documentary on TV3 discussed this very subject, with Karen Koster saying the guilt started the moment she didn't fall pregnant immediately. Her husband weighed in that if the same documentary had focused on "Daddy guilt" it wouldn't even be five minutes long. So why are we, as women, so riddled with guilt when it comes to our babies? If something is eventually diagnosed in our children, are we prone to self blame, or is this blame a societal construction?
From an evolutionary perspective, back in caveman times, women were hardwired with higher levels of anxiety as a means of protection for their offspring. They needed to be hyper aware of danger in order to keep them safe and protect the future of the species. Men on the other hand, needed to face danger without a second thought in order to bring home the bacon. An equally necessary task to ensure the continuation of the species. Even now, when we examine anxiety assessments, for example, the Spence Anxiety Assessment , girls cut off scores (scores which indicate "normal" perameters for anxiety in that particular gender and age group) are higher than that of their male counterparts, indicating higher levels of anxiety in females, even from a young age are the norm. While guilt is not the same as anxiety, I believe they go hand in hand. Guilt is driven by anxiety in many ways. We worry about the things that may never happen, and worry about failings that may occur. When things go wrong, we immediately resort to self blame, and so the guilt kicks in. If I had eaten better, worked out more/less, drank more water, stood on my head and said some Hail Mary's, it would have all turned out so differently. Ultimately, the what if's control our thoughts as mothers.
Now what if's, blame and guilt are reasonably easy to deal with (unless you are suffering with clinical levels of anxiety) when you're thinking of sleep routines, feeding schedules, play dates or other regular baby related issues, but what happens when they relate to a developmental delay or Autism? When you are presented with difficulties or delays which are causing them to miss milestones, the immediate reaction of the majority of Mum's I have met is, what can I do? I could always understand that reaction, but the next question was naturally why? As I have explained a million times, it is simply a different way of being, nothing you did or didn't do has caused this, now let's concentrate on getting on the right path. No matter how many times I reassure parents that it was nothing they did or didn't do, I can always see that look in their eyes and it is only now that I truly understand it. There must be a reason, and why couldn't I prevent it? I can see it because I now know that if it was me in their shoes tomorrow, those thoughts would immediately fill my mind too.
Over the last hundred years or so we have seen huge shifts in both the comprehension and treatment of those on the ASD spectrum. We have seen it misdiagnosed, mistreated and misunderstood. Of all the misgivings, refridgerator mother has by far done the most damage. Bettelheim's "Refridgerator Mother Theory" saw Mother's blamed for their children's regressive presentation. His book "The Empty Fortress" published in 1967 saw a shift in focus from treatment to root cause, and presented an inaccurate and damaging story of Autism, as a product of mothers lacking maternal warmth and love for their children. This was the first time that cause was debated, but it would not be the last time. Luckily Bettleheims theory was discredited by the international community, and focus shifted to treatment options for many years. These ranged from Applied Behaviour Analysis (ABA) all the way to LSD and electric shock therapy. Cause did not come back into the spotlight until 1998 when Wakefield's vaccine theory hit the headlines. This theory was again discredited, and disgraced Wakefield struck off, but the cause debate has not died with the theory. We see new theories daily. Theories range from environmental toxins to biological and genetic factors. While I can appreciate the focus on cause, I find the way in which the theories and research are delivered both alarming and damaging at times.
The media will always focus on attention grabbing headlines. They will jump on any bandwagon as long as it sells their ware. The problem with these headlines and stories, is that the journalists reporting them more often than not lack a background in autism and science, and so fail to report the substance behind the story. This inflammatory reporting is exasperating and fuelling the guilt felt by parents, but in my experience, especially Mum's. A prime example of this is a study that emerged a couple of years ago citing a possible link between delivery via cesarean section and later diagnosis of autism. I lost count of the number of mother's who cited this study when dealing with a diagnosis. The guilt ridden conversation that ensued were filled with regret and self blame. Women who had been through cesarean sections for health reasons, or due to complications during their labour, blaming themselves when it was completely out of their hands. This possible link was not a scientific fact, but once again the focus was on blame.
I am all for research. I believe it to be an integral part of our planning for future services and support. However, I am also an advocate for parents mental health, and this focus does nothing to nurture feelings of competence and strength. I once saw an article written by a mother of a child with autism, who had focused on this very area. She had composed the article to look and sound exactly like the scientific studies which she had obviously poured over post her child's diagnosis. Her headline ; "Breathing causes autism". She went on to present a tongue in cheek report of how mother's breathing during pregnancy were responsible for their child's later diagnosis. She followed this with a list of guidelines to avoid this, including only breathing once per hour or only when entirely necessary. This tongue in cheek fictional piece demonstrates the frustration of this parent in the face of the research which constantly points to fault and blame. This article was shared on an Autism Mummies page, to responses of humour, support, acknowledgement and frustration. A well constructed jibe at the scientific community and their focus. This type of research, while well intentioned, is reported in a way that can only lead to a blame culture, and this is not progress in my eyes.
So what is the solution? I wholeheartedly believe that research is necessary, and that research into the contributing factors to ASD may help us come to a better understanding of the disorder. However, I would like to see reporting that is more cognisant of parents and individual's emotional responses, and an end to inflammatory headlines. Let us go back to the post Bettelheim era, and focus on intervention and support. Support for individuals on the spectrum to acknowledge their strengths and support their weaknesses. Support for parents, without focusing on the why. Support to recognise ASD as a different way of being. We have the power to change how we as a society treat difference, and instead of finger pointing, we need to offer the entire hand. Lift each other up, instead of tearing each other down.