My daughter isn’t naughty either — an interview with Jane Sherwin
To coincide with PDA Awareness Day a couple of weeks ago, and the airing of the first episode of Channel 4's Born Naughty?, the first knowledgeable TV coverage of Pathological Demand Avoidance syndrome, well, ever, as far as I’m aware, I published a couple of interviews, the first with specialist educator and author Ruth Fidler (featured in that first episode) and the second with Julia Daunt, an adult with PDA and awareness activist and blogger.
Anyone wanting to learn more about the condition and how it affects those with it and their families could do worse than picking up the recently released My Daughter is Not Naughty.
Jane Sherwin’s book is (probably cleverly, from a marketing perspective) pitched as an autobiography. It details her experience of parenting her daughter Mollie, and the road she has travelled to understanding life on the spectrum (as well as Mollie having PDA, both Jane’s husband Lee and her son Jake are diagnosed with Asperger syndrome). But its value is far greater for those dealing with not just PDA, but the British health system, especially in relation to PDA and also girls and women on the spectrum.
As she’s someone who’s been battling for awareness and understanding for some years now, I asked Jane a few questions about her experience.
Jane, can you explain a bit about your route to diagnosis for Mollie?
My experience of diagnosis being such a long road is due to a variety of inextricably linked obstacles and difficulties. Mollie was diagnosed with Asperger’s at the age of six-and-a-half, but it took two-and-a-half years of fighting to get there. The ASD Assessment team did however appear to have an awareness of the female profile. Out of sheer desperation, we eventually paid for a private diagnosis at the Elizabeth Newson Centre (where the foundational studies describing the syndrome were made in the early 1980s), where Mollie was finally diagnosed with PDA when she was seven years and eight months. When it comes to PDA, the first obstacle is getting anyone to believe you and to not automatically assume that your child is completely neurotypical but just extremely naughty compounded by inadequate and inconsistent parenting. Due to this assumption, most parents are all automatically sent on the Triple P parenting course. I wonder how many children, both boys and girls who attend CAMHS have an undiagnosed ASD as the root cause of their difficulties and any mental health issues.
A simple screening tool for possible ASD should, in my opinion, be the very first action that is carried out in order to substantiate the correct path for any child who is referred to CAMHS — not a parenting course. Clinicians in CAMHS need to be far more educated about the autism spectrum and the many different ways that it can present, so that they can accurately refer for assessment. Surely this would be more cost effective than spending months wasting time and resources going round the houses without knowing the root cause of a child or young person’s issues. The ethos of many CAMHS services to not label or diagnose but to simply look at the child’s issues and to come up with a page of strategies completely baffles me. Diagnosis first and foremost gives you the most direct path to the correct strategies, understanding and management.
But even when you do eventually reach the autism assessment stage, the lack of deeper knowledge about the spectrum from the clinicians diagnosing is astonishing to say the least. I have been through the system with both of my children and it has been a shambles to say the least in both cases. By the time Jake was assessed I could run rings around most professionals within my local services with my knowledge of autism spectrum conditions, and this simply shouldn’t be. If nothing else it meant that my faith in professionals plummeted through the floor.
Do you recognise the triad of autistic impairments in Mollie?
Yes, Mollie can easily fit the criteria for ASD by using either the triad of impairments listed in the ICD10 or by using the criteria listed for diagnosis in the DSM-5. However a lot of her autistic traits have become far more obvious as she has grown older. The violence and challenging behaviour she exhibited when younger greatly masked these, but once she was calmer they were far more evident. Also her autistic traits appear to have increased and developed with age, ones that weren’t noticeable at age six, like obsessions other than with people and demand avoidance, are definitely there now. Also, as those around her have grown and developed her developmental disorder has become increasingly more obvious by the ever-widening gap that has emerged between her and her peers. Although Mollie does meet the criteria it is met in an atypical way, i.e., the female profile with the added bonus features that signify PDA. (I’ve a blogpost on the subject that might be of interest.)
How do you teach social skills to someone who is demand avoidant?
Mollie is extremely self-aware about her PDA and that it is an autism spectrum condition. We have always been very honest and open with her and information has been drip-fed to her over time. Now that she is getting older she can sometimes talk about how the world feels and appears to her and why she behaves in the way that she does. She has read quite a few of my blogposts and says that I have her and how she sees the world bang on.
I don’t really think that you can specifically teach a child with PDA social skills, because it isn’t that they don’t know what social skills are expected of them, but simply that they can’t always comply with performing them. Mollie knows how she should behave and what she should or shouldn’t say, but her inbuilt instinct is to avoid complying with what is expected of her. When she was younger this wasn’t the case and I think that a lot of her behaviours and meltdowns were due to confusion over social situations.
However, with maturing years and awareness of her condition she is now more socially savvy, but not always able to put it into practice due to demand avoidance and anxiety. What I have tried to teach her is the implications of how her actions may feel to other people (empathy for others can be especially low) and how this in turn can make other people feel or react to her. Therefore changing her social behaviour is for her benefit rather than for the benefit of others. She knows correct social behaviour at an intellectual level but her demand avoidance, high anxiety and an inability to fully empathise with how others feel or respond to her less desirable social behaviour directly influences how much correct behaviour she is willing or able to achieve. Also ‘correct’ social behaviour is not a trait that comes naturally to her and so it may be exhausting trying to keep this act up for long periods of time or when she is especially anxious, i.e., all the time.
Windows of opportunity for learning and progress in this area are few and far between and you have to choose your moment carefully. We have tried comical role play to help Mollie see the world from the other person’s perspective. We make it fun and take the Mickey out of each other. This does help her to understand what it is like to walk in my shoes. She has previously said that she fully understands how she comes across and how she must make me feel and that she feels bad about it but that she simply can’t change who she is.
For more on PDA, see Jane’s website as well as that of the PDA Society. Or for an accessible introduction to the condition, read Phil Christie and Ruth Fidler’s Can I Tell You About Pathological Demand Avoidance Syndrome? Mum Steph Curtis also has a diverse range of PDA case studies on her blog.
