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Parental Blame and PDA
664 Plays15 days ago
In this episode, Rachel from the PDA Society is joined by Alice Running, an author and writer focusing on autistic lived experience and neurodivergent parenting, to explore the issue of parental blame in the context of PDA.
Alice shares both personal and research-informed insight into how parental blame can arise when children struggle within systems that do not fully understand PDA. The conversation explores how behaviours linked to anxiety, demand sensitivity and distress are often misinterpreted, leading to assumptions about parenting rather than recognition of underlying needs.
Rachel and Alice discuss the emotional impact this can have on families, including feelings of shame, isolation and self-doubt. Alice reflects on how blame can become embedded within systems such as education and services, particularly when professionals focus on behaviour rather than context.
Part 1 focuses on understanding what parental blame is, why it occurs, and how it can affect both parents and children. The discussion highlights the importance of shifting towards a more compassionate, informed approach that recognises the child’s experience and the parent’s efforts to support them.
Key Themes
- What parental blame is and how it shows up for PDA families
- Misinterpretation of behaviour linked to anxiety and demand sensitivity
- The emotional impact of blame on parents and families
- How systems can reinforce blame through misunderstanding
- The importance of context, compassion and neuro-affirming approaches
- Challenging assumptions about parenting
Deep Diver Subscriber Episode
For those who would like to go further, Part 2, an exclusive “Deep Diver” subscriber episode, is available through our Training Hub.
You can access it here: https://training.pdasociety.org.uk/pda-podcasts/
Disclaimer
The views and opinions expressed by guest speakers in this podcast are their own and do not necessarily reflect those of the PDA Society. While we aim to provide balanced and inclusive discussions, individual experiences and perspectives may vary. The PDA Society is committed to using language and terminology that reflects the preferences of PDA and autistic people, but sometimes our guests may use language and terminology which differs. Appearance on our podcast is not an endorsement of an individual, and not all of our guests will align with our position on the issues discussed.
Further sources of support and information
- PDA Society Training Hub: https://training.pdasociety.org.uk/pda-podcasts/
- PDA Society Website: https://www.pdasociety.org.uk/
- PDA Society Training: https://www.pdasociety.org.uk/support-and-training/training/
- PDA Society Support Service: https://www.pdasociety.org.uk/support-and-training/support/
Guest links:
About Alice Running | AliceRunning
We Need to Talk About Autism and Parent-Carer Blame by Alice Running | Waterstones
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Transcript
Introduction to PDA Society Podcast
00:00:02
Speaker
Hello and welcome to the PDA Society's podcast. We're here to chat about all things PDA to help you understand what people with this profile of autism are experiencing and how you can help.
00:00:13
Speaker
We'll be sharing research, professional expertise and the insights of people with lived experience to help you understand PDA and have more tools to make life easier. So, whether you're a PDA yourself, family member, friend or professional trying to make a difference, welcome from everybody at the PDA Society. We hope you'll find this useful.
00:00:38
Speaker
Welcome to the PDA Society podcast, where we share lived experiences, practical insight to help families, professionals and PDAs themselves and to feel supported and understood.
00:00:51
Speaker
My name is Rachel and I'm your host for today's podcast.
Exploring Parental Blame in PDA Context
00:00:55
Speaker
Today we're exploring the issues around parental blame in the context of PDA. We will take a look at what parent blame is, why this can arise in parenting a PDA child, the impact this has on parents and families and maybe how professionals can identify if parental blame is creeping into their practice.
00:01:15
Speaker
So if you are the parent of a PDA child and your parenting style has been questioned, maybe you've been blamed for your child's behaviours, or maybe you're a professional, concerned that parental brain is coming into your practice, then this podcast is for you.
Alice Running's Background and Research Overview
00:01:30
Speaker
My guest today is Alice Running. So welcome, Alice. Would you like to say a few words about yourself? Hello. and Thank you for having me. and It's lovely to be here. My name's Alice, Alice Running. and I'm primarily an author and writer.
00:01:45
Speaker
um I write about autistic lived experience, parenting in ah in a neuroaffirming way. um I'm autistic myself and my children are neurodivergent.
00:01:58
Speaker
and And I guess I'm here because a few years ago, myself and another parent, and Danielle Jutta-Hall, we did a survey asking parents to share their experiences around parental blame. um and the the subsequent data was was a lot and we wrote ah a report around that. So i'm I'm here today to share my experiences, um the experiences of other parents around a really pressing topic.
Understanding Parental Blame and Its Causes
00:02:32
Speaker
So thank you yeah thank you for bringing it to everyone's attention. Yeah, no, I definitely think it's an important thing to that we need to discuss and that we need to air, isn't it? So maybe a but a good place to start then is, um so know what do we mean by parental blame in the PDA context? and So parental blame is when a parent or carer is essentially viewed as the source of all problems, and and I put problems in air quotes, um around
00:03:06
Speaker
and So, innate aspects of PDA or an autistic young person or any kind of aspect of neurodivergence really, because it's often um people describe as a hidden condition, don't they? and So when that's not necessarily seen, other their explanations are sought. And um I think...
00:03:31
Speaker
Parental blame, it can be either quite overt or quite implicit in the ways that um professionals interact with parents. But underpinning all of that is the fact that they see a young person's neurodivergence as being caused by something a parent's either doing or not doing. um Yeah, it's quite a, co it's a real common occurrence, especially when you haven't yet navigated assessment pathways.
00:04:02
Speaker
Yeah, yeah. and we We hear a a lot from families, certainly in our support service, that, you know, that that they say that they are noticing certain things with their their child and their child's behaving in certain ways. And then school might come across and say, well, they're fine for us. And there's that implied blame in the parent. You know, it's like, you know, is it me or is it, you know, I'm doing it everything that I possibly can. And we hear lots from parents that have that really, really and struggle with that. So why do you think then that parents of PDA children are particularly vulnerable to being blamed?
00:04:38
Speaker
I think there's there's there's many multiple reasons. and Ignorance and not quite understanding demand and voidant profiles or PDA as a as a discrete condition. um that is that is quite um notable in why blame occurs. But also i think the schooling systems, they view everything through behavioral lens or perhaps even a mental health lens. So when a young person or child is starting to struggle at school, often the pastoral things kick in first um and they explore you know using an anxiety reduction methods and and those kind of anxiety
00:05:23
Speaker
support networks and they're not often really tackling the the real issue at hand um and then sometimes you know children get rooted down the behavioral pathways and when those interventions fail um And professionals are looking for explanations, other explanations, and and the easiest one to go to is it's something that the parents are doing or not doing.
00:05:49
Speaker
And and i think I think that's why. And i think I think there's a lot of controversy around PDA, you know, the debate around PDA. um Is it a real thing? Is it is it not a real thing? And and i think I think even with a clinical recognition of that, and for some parents, if one person in their their professional network doesn't quite believe that, then it affects how that's viewed across the whole team And that can lead to some quite serious allegations and misunderstandings around parenting and and what's actually happening. Yeah.
00:06:28
Speaker
Yeah, yeah, it's it's a complex thing, isn't it? And I guess, you know, you know i um my background and is in is in teaching and i so I know that the how it feels sometimes when you've got a class, you know, classes of 30 kids and you've got, the you know, the one or two children that aren't doing what everybody else is doing. And you generally, it does, you're exactly right there, it does tend to go down the behaviour route first, And then because if every other child is doing it and that child isn't, what's the difference?
00:07:00
Speaker
And it's looked at at parents first, isn't it? It's not necessarily looked at actually what else is going on for that child first. Very often it's what the difference is the parent. So therefore it must be the parent's fault. And yeah, I can see very easily how that that would happen. So. Quite often, and sorry, quite often, like um generic strategies will be applied, like generic autism strategies, which are ah sometimes quite well understood by a school setting. And when they're not, work when they don't work.
00:07:30
Speaker
you're still searching for a further explanation and it's kind of like, well, if if this doesn't work, then what is the parent doing or not doing at home to stop this intervention from working? And yeah that ties into so many things anyway, in terms of strategies and interventions and looking towards that rather than how we can actually make things more accessible. and I think a lot of the problem with Blame is that schooling and and just any any kind of system isn't this necessarily designed to be inclusive, is it, from the outset? And no because of that, when it's not accessible, then it's it's it's really hard.
00:08:11
Speaker
and And people look for a reason to huck on to, don't they? Yeah. And unfortunately, parents are off on it. So you mentioned earlier that you'd carried out this big piece of research with
Impact of Parental Blame on Families
00:08:21
Speaker
a colleague. and Would you like to just outline some of the key findings from um your report from that research?
00:08:28
Speaker
Yeah, I'd love to. So 2022, Danielle and I... um asked parents to complete a survey.
00:08:38
Speaker
It was quite a bit quite a long survey. And um over the course of three days, we got over 1000 responses. So we had to we had to stop, we had to close the survey because we were absolutely petrified that we couldn't handle all the data that was coming in. And then following that it took 12 months to kind of analyse everything that came through. So I just wanted to set that into context because I think that says something quite powerful about the scale parental blame just before we've even looked at the data and also the motivation for parents to to want to be heard about the issue. and
00:09:20
Speaker
so I think that's important to to say that right at the start. and So in terms of what we've found, um so thinking that it was it's 1,000...
00:09:31
Speaker
16 responses overall. and And there was just one person that wasn't a parent of an autistic PDA child. Wow. And so we kind of, we separated that one person from the the rest of the research. So we found that 88% of parents had experienced some form of parental blame.
00:09:53
Speaker
um And that within, i think, 11% of parents had been subjected to some level of safeguarding around um the their child's way being. So something so safeguarding, not for any other issue, safeguarding to do with their child's neurodivergence.
00:10:14
Speaker
right of of those um of that 10 11 that was subjected to to safeguarding 76 of those were either lone parents or neurodivergent lone parents and that we found was was was the most significant kind of statistical finding um which shows that maybe there's something going wrong in terms of of how professionals are perceiving neurodivergent families and and particularly mothers um the biggest kind of uh findings from the qualitative aspects were um the trauma acquired by families the cyclical nature of blame so for example um
00:11:03
Speaker
a common thing that was that was heard, and parents saying that they were being blamed for being anxious when they weren't anxious at all.
00:11:14
Speaker
And then the whole system of trying to find the support and being blamed actually caused the anxiety. Yeah. And that that that there was a ah real um powerful message in terms of an erosion of trust between parents and those professionals supporting them. And that's that's quite telling, I think, and quite sad. and And I think that is perhaps something that professionals and services really need to hear from parents is that that trust is is is is somewhat broken. Yeah.
00:11:52
Speaker
And it needs to be restored because both both sides want to want autistic PDA children to thrive and to be happy and to be safe. But somewhere along that journey, it's it's not happening and professional parent relationships have been fractured and it's it's causing more harm than and helping.
00:12:16
Speaker
So yeah, I think those were ah the main ones. could talk for hours because of the just powerful, powerful messages. And if anyone does actually want to read through into the report, how we presented it was we lifted every single message.
00:12:35
Speaker
statement that was that was written to us and we've presented all those, we've categorized them, we've themed them. and So you can hear the voices of the parents directly and and there are some, it's a really tough read. It's quite heartbreaking um because of the the actual damage that has been done to parents and and children specifically and with the interventions being applied, the terrible situations families have found themselves in. um being caught between like a rock and a hard place, like and having to choose to go along with what professionals want them to do and knowing those strategies are going to harm their children, harm their relationship with their child. But having to do that because it's mandated through like a safeguarding procedure and knowing that that's going to hurt their child is a really awful. I mean, you it that the damage that it done it does is is extreme and and long lasting.
00:13:32
Speaker
Oh, I can imagine. Yeah, I mean, if you know, if you're... Again, we we we frequently hear from parents as well that they've been told, you know, you've got to go on this parenting course or this parenting course, knowing full well it's not going to help their child, but they feel that they have to do it. Otherwise, it looks like they're not they're not engaging with social services or or whoever it might be. And goodness me, that number you gave right at the beginning there, was it 88% did you say? 88% of people. of Oh, goodness me. And I have to say, I know that our research is is parent-led research. it's it
00:14:08
Speaker
It's not academic research, but the results that we we gained have been replicated since in other academic research settings.
00:14:19
Speaker
So I feel that that what we found is a real credible source and accurate, really. Yeah, definitely. And also for that volume of people to reach out that you obviously, you know, it was obviously um that connection to people of that it is such a burning issue for them and something that's affecting their life so much to make somebody reach out and fit, you know, complete your, your survey or however you gathered the data. It's like within that that volume of people within three days is absolutely incredible, isn't it? You know, as you say, that really shows that it's, That raw nerve is there, isn't it? It's um yeah yeah really lasting.
00:15:02
Speaker
We were shocked, but not overly, because we did feel that you just, as a parent, you pick up. And and the reason that we connected initially to to look into the issue was that we live at completely different ends of the country. we've some of the things that were happening to us in our private family lives, both as mothers, lone mothers um and neurodivergent mothers and that as well. And it was more that we were hearing almost identical phrases being said to us. And that is something that's picked up in the research as well.
00:15:45
Speaker
families from all you know England, Wales, Scotland, quite a few responses from Europe as well. Similar phrases, similar kind of patterns of of when the blame kicks in. um And that can't be just a coincidence. It's something systemic. It's something happening deeper within systems. And I don't think it's even an individual professional level. I think is it's much, much deeper. It's wider than that, isn't it? Yeah, yeah, definitely.
Misinterpretations by Professionals
00:16:21
Speaker
So what kinds of messages then or responses do blamed parents often hear from professionals or schools? and Sort of what what type of things were coming through in the report?
00:16:32
Speaker
Yeah, so and I've written them down because they're all kind of a set of of real common and variations of these. So um your child is fine in school.
00:16:43
Speaker
It's an at home problem. And I think that must be the one of the, the most used phrases because so many parents say, well, that's the the minute you, you say, I think my child might be autistic. I think my child might have PDA.
00:17:05
Speaker
That's almost the first thing that that that you, that you met with the first hurdle when that they're fine at the fine at school. And then mom is very anxious. Oh, it's mom's anxiety. um or blaming life events. So if there's something else going on in in a in ah in a family, so job loss or an illness, or there's another disability, or there's another child that requires a bit of attention, or there's a divorce, or there's, so you you know, anything, you know, you're moving house, mum started work, mum stopped work, anything like And that does unsettle children. Mm-hmm. I think you know yourself as a parent when it's something deeper than that or that the the response to those life effect events are so much more intense than they could be otherwise. And I think that is reflective of of of perhaps like a normal autistic or PDA response to those those things. and So that that's a common thing. And I think that stems from and when you're trying unpick
00:18:09
Speaker
neurodivergence along like an assessment pathway it's an exclusionary process isn't it so they exclude all other options or possibilities first and I think that just it contributes to the length of time that it takes to get an assessment through but it also kind of paves the way for blame to seep in and i think a a lot of parents to our our survey were saying well you know people were saying it was because i'd got divorced or people were saying it was because you know dad works nights or dad was ill or you know mom's anxious and things like that and it's it's not and and parents and know that it's not um
00:18:52
Speaker
It's an attachment problem. That's another ah common phrase. and And I think that spans across autism on PDA. um And that, you know, it that the relationship between mom and child is really unpicked during that. ah Of course, the allegations of permissive parenting. I'll probably come back to talk about this later. ah apparently your Parents aren't being firm enough. They're not putting enough boundaries. That's a really common thing to hear. um And it's That stems from, as you were saying earlier, needing go on a parenting course first.
00:19:28
Speaker
You know, are you parenting correctly? Well, I should imagine that most parents have gone through everything else before contemplating neurodivergence anyway. so's again, it just extends the time. It sets the it sets the the tone for blaming parents and you know or all stages the support good support for a child is is is being lost it's taking more time to be put in place um and then finally one of the big things that we were hearing back uh was around that you know whether pda is is real whether it's a real thing um and what it is And and having to explain that and get again and again to professionals and professionals says, well, that you know, well, that's just, it's not real. We don't know what that is. You're making it up.
00:20:20
Speaker
And that can lead to some quite serious allegations of of blame. Yeah, yeah. But it all, and it also, I think it has such that ah impact, isn't it, on the, on the parent, because then they start questioning everything themselves, don't they? And, you know, I know sort of when my, I was sort of, you know, sort of working out okay with my son,
00:20:42
Speaker
that there's um you know there's something going on there and my son had a paediatrician for a different medical issue that he already was diagnosed with and I can remember going to the paediatrician who I got on with very well and I respected very highly um you know and I said you know is is there ah you know is there a sociable form of autism because I've never heard a PDA And he but he had lots of autistic traits, but he loved that eye contact. He loved that engagement. And I was like, he's very sociable, but he's also got lots of autistic traits.
00:21:14
Speaker
And I was sort of told, no, you're fussing over nothing. You know that he's you know, there's nothing going on there. Don't worry about it. It's his age anything. my son's dot adopted. So was like, oh, it's the attachment and all of the these sort of things.
00:21:28
Speaker
And just so it's just as you were saying, or going through that, I was like, yes, I've have been told that. Yes, I've been told that as well, you know, and it's, I think it's so widespread, isn't it? It's just so much of it goes on. It's pushed aside, whereas actually we do need to listen to parents more, don't we? We really really do. does and and And what it does to the inside of your head as a parent, like you say,
00:21:50
Speaker
You're constantly question questioning your own reality and your own trust in trust in yourself, you know, and when someone one in a position of power with clinical expertise says things like that, you know, and it's largely...
00:22:06
Speaker
to do with stereotypes of what autism should or shouldn't be, and then you know, ye you defer to that. I mean, that sounds very similar to the you know the beginning of of of of my journey. and you know my My child was considered and gifted and talented and in no way could possibly be autistic because because of that. It's crazy. Yeah. It's so hard, isn't it? It really is. So, you know, do you think that parental blame, it's linked with this lack of professional understanding of PDA then? Is it just that it's the professionals that don't understand, which is why we get so much of this parental blame with a PDA child?
00:22:52
Speaker
i think I think that's ah an aspect to it. and But then, you know, really good professionals are open-minded and will look at something and will listen to something or will go off and read something and will inform themselves um and find out.
00:23:13
Speaker
And I think perhaps it's more about the pathways But children are rooted down or families are rooted down.
00:23:24
Speaker
And I think because those pathways are linked so closely to either like medical or clinical areas, routes or behavioral routes or safeguarding routes, and that there's almost like tick boxes and families are kind of diverted down there and and the nuances are completely missed.
00:23:50
Speaker
I think that's probably causes a lot of problems. So, you know, when when one strategy or one pathway or one service cut doesn't work or you know appears not to work it's you never consider services never consider why the service isn't appropriate it's like well what's what else is wrong and then that just kind of compounds blame and and Yes.
00:24:22
Speaker
Rather than it be the wrong service or the wrong strategy. but I think a lot of times professionals, they're almost like their their hands are tied with what what what they can what they can do. and so it's like, you know, if you're a teacher, what... what what can you do your time's limited anyway and so unless you've got real lived experience or real skilled specialists around you in that setting then you know you you're very limited in what you can do you you know do we call in the educational psychologist do we you know that we're relying on the in-house senco might not have you know the the the widest toolkit to help um
00:25:06
Speaker
And I think it's more it's more what pathways are open. Yeah. and it's And it's often very then difficult to get those access to that pathways because even if the school, for example, does decide to call in the ed psych, but then how long has that child got to wait to see the ed psych because there's only so many, their time is so limited in each school that they that they're connected with. And, you know, how many children that they have, to they can only see a certain amount, can't they, in a day? And, etc etc so it's it's actually there's so many backlogs and stumbling blocks in the system that it means that this misunderstanding grows and this mistrust then with the family grows and it's yeah you can very so easily see how things We're kind of also missing, you know, say say you get an ed psych in to do some observations or the SENCO is going to sit in the class and and not do some more observations. You've got the fact that for many, many children, internalized PDA, internalized, you know, and you're suppressing yeah your autistic ways of being and you you're trying to fit in and do your but your best and then you let it out at home. No amount of in-school observations or in-clinic observations are necessarily going to unpick that aspect of neurodivergence at all.
00:26:31
Speaker
And again, you know, parents are left with, well, we know it's... It's real. Yeah, yeah, yeah. And it can it comes down then to the parent, doesn't it? To evidence, to document. and But again, those parents are usually completely burnt out themselves and don't necessarily have the time, the thought process to work it at to work out exactly how they've got to document everything. Because you're exhausted, you're shattered and you're fighting on every front, aren't you? You're fighting everybody just to try to parent. the correct way and get that support that's so desperately needed. So in that sense then, what are those emotional and practical impacts of on families when and parental blame is involved? what What came out of the report as far as impacts are concerned?
Emotional and Practical Harm Caused by Blame
00:27:21
Speaker
Long term, extremely long term and damaging. and So the harm and the distress to the child, first and foremost, when wrong interventions are pursued, wrong pathways are kind of used. and You know, met with mental health sectioning, um though children... um who were thinking of taking their own lives, ah just the amount of distress, it's just heartbreaking. It's a really it's a really heartbreaking report to read. um
00:27:56
Speaker
Extreme circumstances with child separation, child removed being removed from the home and relationship breakdowns so not just like between parents and but also between parent and child because if you think that you're having to apply strategies that are going to harm your child then that child is going to distance themselves from you they're not going to trust you as much and that's really harmful and we had quite a few parents pointing to to that and
00:28:31
Speaker
how how hard it is to come back from that place. and Almost like your bond with your child is eroded. and And then the stigma and the isolation of being blamed. So you become, the systems almost cut you off from your own community because you get labelled, you get labelled a bad parent or, you know, if it's obvious that the social service support going into a home then, you know, communities withdraw from you a family, you know, play dates get cancelled, you get talked about, neighbours don't really want to say hi to you, those kind of things, and you're left in more isolation, and which is harmful and damaging.
00:29:16
Speaker
And then, of course, there's the catch-22 aspect, as I was talking about earlier, and when, you know, you begin to blame a parent and a parent's mental health and that in turn actually causes and parental ill health. And a lot of parents were talking about the damage that it did to their own their own mental health, their physical health as well, how that declined, um you know how that how they had to become reliant on antidepressants and anti-anxiety medicine, years of therapy and counselling. following some were um having to access treatment in inpatient settings um and it just disrupts unnecessarily disrupts their families ways of life
00:30:05
Speaker
Yeah and as you say it's so it's so impactful and it's and it doesn't need none of that needs to happen it just needs that the professional to have that understanding yet the as you say the impacts not only on the child but on the fat on the on the parents on the rest of the family you know the sip any siblings involved as well isn't it it's that emotional impact that will last years and years and years. but then the the cumulative exhaustion as well and the impact of finances and working life, everything. Because if you're not getting the support for a family that that you need, then say, for example, you know, a a child has like ah a regular access to school or cannot, you know, cannot get into school or but you can't really access other places in the community because you've not got, you know, the things in place that you need to do that.
00:30:56
Speaker
Then you're having to, you're having to, cut or change your yeah your hours at work um you're having to find funds independently to perhaps pay for assessments and yeah your your your whole free time is spent trying to access services filling out forms and appealing complaining um
Conclusion and Encouragement for Families
00:31:25
Speaker
fine you yeah it's it's it takes over every aspect of family life yeah oh goodness me oh right um i know we've got far more to delve into this topic but we've sort of reached the end of part one of this podcast so what i all i can say is thank you alice but for fell firstly for yourself and your colleague for for taking on this piece of research because i think it's such valuable research and it's so important that lots of families who will read this, we' put we've got the links in our show notes, you know, read the report, will feel validated, will feel heard and understood for the first time for many families. So, you know, thank you so much for that. And thank you for coming on and and to the podcast to talk about it. I'm sure it'll really, really help some families.
00:32:14
Speaker
Thank you. So if today's conversation has resonated with you, then please remember that you're not alone and there is support out there for you. You can find and resources, guides and community support on the PDA Society website and on our training hub. And we've put all the links and to the show notes. and and And, you know, we've also put um the Alice's, the links for Alice and um her research in there as well.
00:32:43
Speaker
If you found this episode helpful, then please do share with someone who might benefit. And don't forget to subscribe so that you don't miss any future conversations. Remember also that we've we will have part two of this podcast with Alice, which is our deeper dive section and of this podcast, um where Alice will answer some more specific questions that our listeners have sent in. So if you would like to listen to this, then please head over to our training hub.
00:33:11
Speaker
Thanks for listening once again. And until next time, take care of yourself and each other. So if you want to hear more from today's special guest, then there is a longer version of this podcast available over on our training hub. Sponsors of our training hub make it possible for us to create and put out this podcast for everyone for free.
00:33:30
Speaker
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