I’ve got to be completely honest with you. As I’m sitting here writing this, I’m absolutely beside myself with anger. Pure, unfiltered, fire-in-the-belly anger. (You can also add in a sprinkling of disbelief, a pinch of ‘did I hear that correctly?’ and a half a teaspoon of ‘this can’t be happening!’.)
This post is about Parent Blame, and it’s not pretty. And I know many of you will be triggered by this, so apologies in advance and please skip if this isn’t for you, but this story needs sharing.
For most of my time in the SEND system, which for me encompasses the unholy trilogy of mainstream school, social care and CAMHS, I’ve been lucky enough not to experience any blatant Parent Blame. It may have been there in the subtext of a report, in a casual comment from a ‘professional’ that had multiple interpretations, or in a ‘weird’ feeling I got from a meeting – but I’ve never seen hard and fast evidence that someone thinks my parenting is to blame for the complex disability JJ has. And I’ve been lucky.
A close friend of mine, C, parent to an eleven-year-old PDAer, was recently the victim of the most pointed case of Parent Blame that I’ve ever personally witnessed.
As if her life wasn’t challenging enough – coping with the needs of a sibling with ARFID, and giving up her job to be a full-time parent-carer for her PDAer who isn’t able to attend his specialist school, she has had to deal with direct suggestions from CAMHS, and from the specialist school, that it is somehow her fault that her son isn’t able to engage in society at the moment.
Like many of us, she struggled to get the appointment with CAMHS, in the desperate hope that they may be able to offer some sage words of advice, some therapy to alleviate her son’s isolation. Because, yes although we’ve all heard horror stories of them doing more harm than good (or simply doing NOTHING) there’s always the tiny bit if hope that the right professional will swoop in and actually HELP us.
That they will confirm that we’re not doing anything wrong.
That there are things they might be able to do to help us.
That there may be some support offered to us that we could cling on to, to act as an anchor in this swirling sea of confusion we live in daily.
That they will acknowledge not only PDA, but our extensive our personal research and knowledge of PDA, our lived experience of the complex disability it is.
It’s ok to have hope, it’s human!
But what isn’t right, what isn’t human, is to blame the parents – or specifically the mother in this case – for somehow ‘creating’ a situation where a child is unable to attend school or leave this house.
If you are a professional who comes to a situation like this with a total lack of knowledge and understanding of the disability in question, then you my friend are not going to be a help. You will be a hindrance.
If you do not understand – or believe – in PDA, then that is entirely your issue.
Walk away, and send someone else who DOES have an understanding and a belief of the complexities of this neurotype. It’s not new people, Elizabeth Newson was writing about PDA in the 1980s!
If PDA does not fit within your scope of experience, or if you have doubt of the validity of the diagnosis or traits of PDA, then just – walk away.
Now, many of you who have been seen by CAMHS (as JJ has) will know beforehand that their child *will be unable* to engage in a home assessment for many reasons. But we hope that simply the attendance of the professional – who will witness this inability to engage and have the chance to speak to US about our child and their difficulties – will be enough to demonstrate the complexities of our situation and hopefully elicit further help. Whatever that may (or may not) be.
C was desperately keen to be able to speak to this professional, as her son is not attending school and rarely leaves the house. I’m sure this sounds incredibly familiar to many of you, so I’m sure you can empathise with her wish for another perspective on her situation.
In reality, C was subjected to a lengthy meeting in which the professional was reluctant to acknowledge her son’s PDA diagnosis. Yes, the professional steered the conversation away from PDA and instead seemed keen to educate my friend on a much more generalised, some might say stereotypical presentation of autism.
C was also asked some very personal and unsolicited questions about her own upbringing and educational experiences, and was told that because of these experiences, she has a tendency to ‘rescue’ her son from adversity, and was therefore perpetuating his isolated and demand-avoidant situation.
In effect, she was told that she was probably making things worse.
C did not go into this meeting expecting to be quizzed on her childhood. It brought up feelings and memories which left her feeling really confused and upset. Yet, as she believed she was talking to a qualified and presumably experienced CAMHS employee, she deferred to their perceived expertise. After all, surely it must be relevant if they are asking her about it?
In a staggering use of words, the professional then told her that when her son was being pushed out of his comfort zone, and C felt uncomfortable with this, she needed to – and I quote: “suck it up”, as it was her own childhood which was responsible for her feeling this way.
Yep.
I’ll just leave that there. There’s so much to unpick in that comment, that it would take me far too many words (and spoons) to even go there.
Sadly, when C then received documents from her son’s specialist school as part of an SAR, she was subjected to a litany of evidence showing that once again, she was perceived as being unhelpful and a barrier to his education.
The whole experience has devastated her mentally. She’s been knocked really, really hard and has admitted to me that it’s made her second guess her parenting and the choices she’s made.
How dare they make her feel like this?
Now I know that some of you reading this may have experienced similar, or even worse, not just from CAMHS but from schools, paediatricians or social services. Sadly, this is not uncommon.
In February 2023, Danielle Jata-Hall from PDA Parenting and Alice Running published a report, which you can find on the PDA Society website entitled ‘Parental Blame and the PDA Profile of Autism’: https://www.pdasociety.org.uk/…/Parental_Blame_PDA…
In this study of 1000 parents/carers with a PDA child or young person, 52.7% of parents/carers said that professionals had raised concerns about their own mental health. I think you’ll agree that this is a terrifying statistic. The report is well worth a read, and highlights a really dark side of asking for help for your young PDAer.
C has a partner, supportive family and friends and feels strong enough to make a complaint about her treatment during these meetings. She has been given the opportunity to discuss the report which was produced with the assessor’s line manager. We both hope that the person who assessed her will be asked to reflect on their manner, choice of words and personal beliefs. Well, that’s the polite version of what I hope will happen anyway.
My worry is that not everyone is in C’s position, and feels able to speak out about their treatment.
27.9% of survey respondents who said they had experienced parental blame, were mothers parenting alone.
To quote JJ: “Coincidence? I think not!”
Iif you’ve been affected by anything I’ve written, and you need help, support and/or advice, don’t hesitate to contact the PDA Society Helpline: https://www.pdasociety.org.uk/contact-us/enquiry-line/
And don’t ever forget, you’re not alone in this.
A Boy Less Ordinary 