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Ep. 6: PDA in Adulthood: Parenting When the System Failed
519 Plays8 days ago
In this episode, PDA Society’s Rachel speaks with Paula Webb, the parent of an adult PDAer, about what happens when PDA goes unrecognised through childhood and beyond. Together they explore how the lack of understanding and support in earlier years can have lasting effects on both the individual and their family.
Through honest and heartfelt conversation, Paula shares their family’s journey – from the confusion and distress of unmet needs to the eventual realisation that PDA lay at the heart of it all. They discuss how late understanding reshaped their relationship with their now-adult child, and the process of rebuilding communication, trust and mutual understanding. This episode shines a compassionate light on the challenges faced by PDA adults whose needs were missed in childhood, and the emotional toll carried by both parents and children. It’s a powerful reminder that it’s never too late to learn, understand and reconnect.
Key Themes:
- Growing up without recognition or diagnosis
- The long term impact of unmet needs
- The parent child relationship through adulthood
- Finding understanding and healing later in life
- Building trust after years of misunderstanding
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/
Recommended
Transcript
Introduction to PDA and Podcast Goals
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, a family member, friend or professional trying to make a difference, welcome from everybody at the PDA Society.
00:00:34
Speaker
We hope you'll find this useful.
Challenges of Undiagnosed PDA in Adults
00:00:41
Speaker
Welcome to the PDA Society podcast, where we share lived experiences and practical insights to help families, professionals and PDAs themselves feel supported and understood.
00:00:53
Speaker
My name is Rachel and I'm your host for today's podcast. So today we're exploring the issues that arise from being an adult PDA person whose PDA was not recognised or diagnosed when they were younger.
00:01:07
Speaker
Across the two parts we will look at why this might happen, the issues that arise for the individuals themselves and also for their parents. So if you're a parent of an adult PDA-er or you support a PDA adult professionally, this podcast might be of interest to you.
Paula Webb's Background and Experience
00:01:25
Speaker
My guest today is Paula Webb. So welcome, Paula. Would you like to say a few words about yourself? Hello, everybody. um Yes, my name is Paula Webb. um I've lived in England all my life. um I am a parent to three children, um one of whom has PDA.
00:01:45
Speaker
um And he is now um in his 30s. I'm ah also been working with the PDA Society in many different roles over many years since it's in it actually started.
00:02:01
Speaker
Lovely. That's great. Thanks, Paula. So a wealth of experience that I'm sure you'll bring to today's and session. So I guess sort of you know sort of the best place to start really is that you know why do some parents find themselves with a child who has reached adulthood but hasn't got a diagnosis? you know is Is this common?
00:02:21
Speaker
Yeah, unfortunately it is. It's very common. and and Today's adult PDAs um have not been able to receive a diagnosis of a PDA profile of autism ah whilst they were a child.
00:02:36
Speaker
um And therefore they're entering adulthood without a diagnosis. And that's that's quite difficult for the adult PDA themselves and also the parent. um Diagnosis of PDA was extremely rare when they were children and certainly when, you know, my son was a child.
00:02:58
Speaker
um And you we were mainly looking at the independent sector where the specialists were um and maybe the whole of the NHS during the 19th.
00:03:12
Speaker
80s, 90s and 200s, 2000s, I should say, um you know, were mainly just as the specialists. um And unfortunately, um you know, the NHS really all all over the UK were not diagnosing PDA at that time.
00:03:32
Speaker
and Thankfully, things are changing.
Struggles Without Diagnosis and Misunderstanding of PDA
00:03:36
Speaker
Thankfully, you know some adults are able to get diagnosis now, but not as a parent, not knowing the actual condition that your child has, um not knowing why they you know they won't listen to you or they won't comply with requests and they have a series of meltdowns and not behaving like your other children might be was extremely concerning and there were no answers to that behavior.
00:04:11
Speaker
And so obviously many PDAs were growing up um with many concerning behaviors that parents just didn't know how and to actually cope with and how to manage and support.
00:04:26
Speaker
Mm-hmm. Yeah, and I get it. You know, that's not only impact on the and um the on the child themselves as they as they grow into adulthood and then not actually understanding why they felt certain ways and why they did certain things, but the the impact on the parent as well, isn't it? It must be must be enormous. Yeah.
00:04:45
Speaker
so yeah you You mentioned that diagnosis back then was very difficult. Was there much recognition or was it, you know, was there much, you know, not rather than a formal diagnosis, was it was the PDA profile recognised or understood or you know you know, what view did people have of of m PDA children at that time? Yeah.
00:05:09
Speaker
Yeah, I think I don't want to go into a history lesson. The PDA Society have actually had a timeline that shows you the progression of of where things began to be understood, you know, and began to be diagnosed, etc.
00:05:25
Speaker
But um without going into that full history lesson... um There really wasn't any awareness of PDA for a very long time after it was first identified in the 1980s.
00:05:41
Speaker
um And run research has been very slow and without the research, Probably the NHS and the government won't won't put and PDA into the diagnostic manuals.
00:05:54
Speaker
um So we we were left really with about 30, 40 years um of these particular you know families not knowing how to raise their children, not understanding um you know what their characteristics and ah you know were were and how to deal with their behaviours.
00:06:18
Speaker
So in in a sense, I think these children who were going into school were not not being supported well at home because parents didn't understand pda it wasn't even on anybody's radar then they were going into school and schools and teachers weren't being kind considerate supportive giving reasonable adjustments giving extra support they were seeing these children as being quite disruptive um as uh being very behavioral um and and you know most schools weren't able to deal with uh the behaviors of pda children and yeah well you know we've got us also talk about the children that you know were internalizing their pda you know sitting in the classroom looking at their book um being full of anxiety but being seemingly very compliant yeah
00:07:18
Speaker
But sometimes times by the time they got to tests, exams, you know, they hadn't really retained anything because anxiety stops you from concentrating and learning.
00:07:30
Speaker
Yeah. so you know, there there's a whole re raft of of children there that weren't being supported well. Yeah. And for nobody's fault.
00:07:41
Speaker
Because when you have children, a diagnosis such as, sorry, a condition such as PDA that isn't being diagnosed in children, you obviously tend to get a lot of other, and we'll talk about this in a moment, but you tend to get a lot of other diagnoses instead.
00:08:00
Speaker
Yes. Those strategies aren't going to work. you know no, exactly. and And therefore it might actually be making things an awful lot worse for many individuals, couldn't it? You know, the wrong strategies are used. We know with with PDA individuals, you know, that we need that collaboration. We need that, um you know, lots of time and things like that. Whereas actually if you're given strict boundaries or strict rules as well,
00:08:26
Speaker
I'm told as a parent that this will this is what's going to help. And actually, it's going to make things an awful lot worse, isn't it? Yeah, and but those parents were being told, you must do this, you know.
00:08:38
Speaker
um Likewise, you know, my son was diagnosed with autism at four and I was told, you're not trying hard enough with autism strategies. you know, you need to try harder, you need to do more social stories, you need to get more um routines in place, you know.
00:08:54
Speaker
And the more I tried to do that, as with many of our parents, and You know, the more I tried to do that, the more my son couldn't cope and had more more meltdowns.
00:09:07
Speaker
Yeah. And that's that's definitely a theme if you aren't being given the right diagnosis for your child. Yeah. Yes, yeah, exactly. And which actually brings us on to my next question is that, you know, could professionals have mistaken back then and PDA for other issues?
Misdiagnosis and Parental Blame
00:09:23
Speaker
um And you've what you've already ah just begun to touch on and and blame parents, you know, with it were parents blamed an awful lot back then for the behaviour of their children?
00:09:37
Speaker
Okay, so I think the first thing I wanted to say was a bit of an example to put it perspective. So my son was diagnosed with autism at four. We were trying all the autism strategies and so were school. um By the time he entered his first special school, and he was about approximately age 10.
00:09:58
Speaker
And one of the teachers there actually said, i think your son's got PDA. Right. And I said, oh, right. I don't think he's got autism. Oh, please don't tell me he hasn't got autism. What the hell has he got? you know yeah But, you know, read this.
00:10:15
Speaker
And it was one page from Elizabeth Knudsen's, you know, research basically saying, you know, this particular researcher has identified yeah a new condition.
00:10:27
Speaker
and And I went away. i had a read. I found the PDA contact group. um which is what existed oh gosh back in the 90s there was just one no support groups um no Facebook groups none whatsoever and there was just this one national ah PDA contact group and there were so few people on there that you probably only looked once a week because you know there was nobody posting but
00:11:00
Speaker
And when you did post, you had to wait a week to get a reply from anybody, which was usually, oh, hello, welcome.
00:11:09
Speaker
But so so I then, you know, knowing what this teacher had said, i then and set about trying to find somebody who would accept that my son had PDA rather than autism or a PDA profile, as we now call it.
00:11:26
Speaker
um So I actually managed over about six months to tackle three paediatricians, consultants in their field.
00:11:38
Speaker
And I had a conversation with them. And I said, even when my son was diagnosed with autism at four, I said to the paediatrician, I'm not sure sure about this because my son has a massive imagination.
00:11:56
Speaker
We spend hours and hours pretending to be cats and dogs and putting bowls on the floor and licking up milk. And i said, that's all he ever wants to do.
00:12:07
Speaker
and she just said, well, he has all the other characteristics of autism. So that one's to his bonus. Oh, right.
00:12:18
Speaker
So I was telling the pediatricians about this and all three shot me down instantly. and Very, i mean, it was a long time ago. So quite sort of abruptly, no, he's got autism.
00:12:33
Speaker
and I don't know where you've got that word from, you know, but no, that doesn't exist. That's not in the mouth. No, he can't have a diagnosis of that. He doesn't have that. After that, I actually um went about trying to help teachers and professionals to understand my son, understand him that he wasn't a perfect fit for autism, that these were his um characteristics and get them to understand him from from that rather than saying to me, use autism strategies, use autism strategies.
00:13:14
Speaker
So and i think I wanted to sort of say that that was sort of in about 2004.
Progress and Continuing Challenges in PDA Recognition
00:13:20
Speaker
Yeah. yeah You did then have professionals actually saying, we're not entertaining that.
00:13:28
Speaker
ryan Things have changed. yeah know really Lots of um professionals now will talk to you about PDA um you know and actually will even diagnose it.
00:13:42
Speaker
It's not across the board yet. No, yet. which was your question really um Yes, of course, you know, and if a professional, whether they're at CAMHS or whether they're a paediatrician, they are assessing your child and thinking, well, you know, what what could be this child's diagnosis? What could be the matter with this child, you know, as to why they're behaving the way they are? Obviously,
00:14:14
Speaker
obviously if PDA isn't heard of and PDA isn't in the DSM or ICD. Those professionals didn't have PDA on their radar.
00:14:27
Speaker
They did have autism if your child fit some of the criteria, had some of those characteristics. But unfortunately, there's also things like oppositional of defiance disorder.
00:14:44
Speaker
Some of these children did seem to meet the criteria for that because of the way in which they couldn't comply with demands and requests. There's also conduct disorder. and um You know, obviously some were diagnosed with autism, but the autism strategies weren't working for them. They were making it, making them worse, really, in their behavior. um You know, being very dysregulated and being very distressed.
00:15:14
Speaker
Yes. Yes. And obviously some, you know, were diagnosed with maybe ADHD, probably because they had ADHD. But the period the um professionals were really overlooking the actual PDA because they'd never heard of it, you know, back 1990, know, 2005.
00:15:31
Speaker
Yeah.
00:15:33
Speaker
thousand and five um So, you know, it really, really was hard. And I've got to include myself in this. You know, it was hard for us parents to get people to understand, and you know, that we didn't think the diagnosis was right.
00:15:50
Speaker
Yeah. And then they were always thinking, oh, you're always chasing different diagnoses. You're always coming up with different and criteria, group different characteristics and behaviours that your child ah you know possesses.
00:16:05
Speaker
So some of us were saying, well you know, they've got sensory processing, you know, and they've got this, they've got that. um But most of us were dismissed because there wasn't any OTs to diagnose sensory processing.
00:16:19
Speaker
and or we were given a completely, you know, as I say, different diagnosis. um But the only, the one big problem really was that if you, if the child didn't get a diagnosis on the autistic spectrum, you know, nice neurodiverse, and then unfortunately by the time they got to about 16 young a adult,
00:16:47
Speaker
They were then being diagnosed with personality disorders, which yeah is not neurodevelopment, neurodiverse. It is actually mental health diagnoses.
00:17:00
Speaker
and And that became quite problematic because it's very, very difficult to get those diagnoses overturned.
00:17:10
Speaker
and On to...
00:17:13
Speaker
You know, were we as parents blamed for our children's behaviour? Very sadly, yes, we were. and you know, it's like those parents in the 1950s and 60s who had autistic children, but they were being given the diagnosis of just, well, learning difficulty. Yeah, yeah.
00:17:34
Speaker
You know, weren't begin being given an autism diagnosis. They weren't being given autism strategies in a way to parent their child. um so you know they they were also being blamed and the most horrendous one is that you know professionals were saying well these were frigid mothers frigid um you know like freezers yeah yeah yeah are their children any attention and love and that's why their children were displaying these autism characteristics which is wonderful isn't it yeah yeah so so whether you know whether you lived in the 1950s or whether you're living in the 1990s parents did get blamed because professionals didn't know about these types of conditions at the time children were being presented to them yeah so it was a very difficult time for a parent to live in and you did live you know with a lot of
00:18:32
Speaker
blame, shame, embarrassment at your child's difficulties. You know, I wasn't able to say, oh just ignore him, please. You know, he's got PPA, I'm taking care of it.
00:18:44
Speaker
Because I didn't know whether I was taking care of Exactly, exactly. And, i you know, you've got the you've got all those external pressures as well then, haven't you? You know, you your your child can't cope in situations whereas other people children can. You know, your child displays behaviours.
00:18:59
Speaker
that everybody else is, you know, you would sort of look upon as being unfavourable behaviours, maybe. Professionals are telling you that, you know, that there's your your child's autistic, but actually there's lots of other things going on as well. And you're just not getting that.
00:19:14
Speaker
There's no support, is there? It sounds like there was no support for you at all. And it's and it's at that lonely journey through that you're finding your own way through. Yeah. And if you if you don't have another parent in your local support group or on your Facebook group saying to you, you're doing the right thing, you're using the right strategies, it's OK, mine's the same.
00:19:39
Speaker
Yeah, yeah, yeah. So don't go with those professionals who are saying this strategy, that strategy will work, you know, when we know the PDA strategies will work.
00:19:51
Speaker
We didn't have that strategy. We didn't have any peer support. a You know, I talked about the contact group, but it will it was still a very sort of difficult place to write.
00:20:03
Speaker
yeah Because nobody wanted to write the things that their child was getting up to, you know. Yeah. it Yeah, it was hard. It was hard. I bet. Yeah. So I guess then, you know, you've sort of touched on it there a little bit. So, you know, do do do parents now with adult children feel that sense of and regret maybe for or, you know, some for some, maybe even shame for not actually realising what was going on for their child when they were much younger?
00:20:36
Speaker
um Yes, definitely. um But I think what what I want to say to ah to everybody out there who was in my situation, and and probably, know, there's a lot worse as well, yeah and when is that you know it's it wasn't your fault it really really wasn't we weren't informed we didn't have websites full of and helpful approaches that we could try and and information you know for trying to get school to support our children properly and you know we we just didn't have all of that so so try not to blame yourself
00:21:14
Speaker
yeah The professional didn't know either. No, no, this is it. Sorry, Rachel. Yeah, no, no, no, no. I was i was just agreeing. You know, you do you don't know what you don't know. You're trying to do the best for your child.
00:21:29
Speaker
and and And, you know, and that um that is what you've done, isn't it? You know, know you are you're you're trying to meet your child's needs, but without really. knowing what is causing the behaviors, the distress and all of that anxiety, isn't it?
00:21:43
Speaker
Yeah. You know, i I mean, I could go on and say, you know, there were no professionals, there were no organizations. And there really weren't because everybody you went to had either never heard of it or if they'd heard of it, would just pray probably say, oh it's not worth talking about because it's not in the DSM and nobody in the NHS is going to diagnose it and blah, blah, blah. So, you know, couldn't win.
00:22:07
Speaker
You just couldn't win. um So, yeah, it was a very lonely place. um I'm just trying to have a look, to see whether I just have a think. Yeah. Yeah, I mean, there were no books.
00:22:21
Speaker
No, of course. I think if somebody was just finding out today their child is a PDA, for me to say there was no books when I was bringing up my child, I couldn't read anything.
00:22:35
Speaker
yeah know that This one shoot of paper, you know, on a piece of research, you know. um And so we we can't blame parents. We just can't. um But ah obviously what I do have to say is, you know, the negative side of what happened was that if you didn't understand why your child was behaving this way, the teachers didn't, the social workers didn't.
00:23:01
Speaker
then unfortunately sometimes, you know, children were taken away from their parents because it was thought that the parent wasn't parenting properly. So, you know, those those dark things did happen.
00:23:15
Speaker
And there will be parents out there, you know, my age, my who've got a son or daughter my son's age, you know, that awful thing happened. It was awful. And it shouldn't have happened.
00:23:30
Speaker
um And we're doing better now, but not all the time. We can still talk about blaming today's society of parents and children. Yeah, definitely. it's As you say, it's, you know, it's these things are still going on. It has improved, but there's lots of parents who have still have this fight now. You know, we still we.
00:23:51
Speaker
here at the PDA Society lots from parents whose maybe their and NHS trust doesn't recognise PDA or they can't get in front of that right clinician or maybe the right teaching support or whatever it might be just to help them support their child and give them what their child needs isn't it so it's yeah it's improved but there's still still a long way to go isn't there so If we have, and if there's an a parent of an adult um and they've always wondered what it was that was causing their child, who is now an adult, to show certain behaviours that struggle with certain things, and they've just come across PDA, so this is a whole sort of new world to them that they are now and entering, what would be the first thing that you would suggest that they need to understand?
Advice for Parents and Available Resources
00:24:40
Speaker
the ah then I think one of the first things I want to say before coming to all that they need to understand um is try to deal with your emotions and thought processes and feelings about the past.
00:24:59
Speaker
Yeah. I'm not saying as quickly as you can, but effectively as you can, because dwelling on the past is not going to help you be effective for the future.
00:25:11
Speaker
Yeah. You know, we need you to If you're beginning to learn about PDA, you've just suddenly realised, you know, your adult child has PDA, then it's a very big learning curve. It's a sudden learning curve.
00:25:26
Speaker
And and i it's almost... I don't want to say you've got to one day, you know, sort of block out the past. I'm not saying that, you know, it's happened and there's this little we can do about it, except look at the future.
00:25:40
Speaker
Look at the future and say to yourself, right, I can do something now. I start to heal our relationship. I can start to build some trust, you know, with with my child, with with my adult child, whatever age they may be.
00:25:59
Speaker
um You know, it's and it's it's never too late, I think, is what I would say. So but yeah and I would say, yes, you know, get on the websites, start reading about PDA.
00:26:12
Speaker
And then we all do things differently. Some people like to do their research and their reading um alone, you know, books, reading blogs. Others like to you know get on a training course and start asking questions. and There's lots of things out there now.
00:26:34
Speaker
And you can pick and choose how you want to learn. That's brilliant. you know, we no longer have just one page on a website.
00:26:46
Speaker
we We no longer have just one book, you know, ah one professional, one diagnostic centre called the Elizabeth Newsom Centre, where, you know, the experts and the specialists are. We have more than that now.
00:26:58
Speaker
And that's that will help your learning journey. yeah and But start with step one and don't overload yourself. You know, just to help your adult PDA, you have to help yourself.
00:27:16
Speaker
had You learn, then you'll be able to help them. And it all has to be your learning might be a slightly fast pace, but your actual and progress with your relationship with your adult PDA might still be very slow.
00:27:37
Speaker
if you suddenly behave very differently. they will wonder what's going on. Yeah, yeah. So it has to be slow. Yeah. Oh, that that that's great advice. Because, you know, we often we often hear from parents now, even of of young children who sort of like, you know, panicking about the future or things that they've already done. And I often say to put to parents, focus on the here and now. What's happening today?
00:28:01
Speaker
Focus on now. And as you say, it's the future that we can change. We can't change the past. We can't change what... ever has happened in the past but we can start to change what's what's going on now but as you say at that I think that's really important the pace certainly for an an adult the pace needs to be slow doesn't it otherwise it's going to be it's going to cause more anxiety if you suddenly change lots and lots of things all at once yeah That's brilliant. oh Thank you so much, Paula, for sharing all your experiences and your and um information that you've you've got of PDA. It really, really is helpful. And I'm sure you know all that information will have been extremely helpful to many families that are in those difficult situations that you know that you've you've you've been in and other families that you've worked with have been in. And it's really, really invaluable for people. So thank you so much for that today. Thank you for having me.
00:28:55
Speaker
If today's conversation has resonated with you, and then please do remember you're not alone and there is support out there for you. You can find many resources, guides, training and community support on the PDA Society's website and our hub.
00:29:10
Speaker
And we've linked all of those things in the show notes for you. If you found this episode helpful, then please share it with someone who might benefit. And don't forget to subscribe so you don't miss any future conversations.
00:29:24
Speaker
Remember, we also have the second part, our deeper dive section of this podcast with Paula, where she will answer and some specific questions that our listeners have sent in. So if you'd like to listen to this, then head over to our training hub.
00:29:38
Speaker
So thanks once again for listening. And until next time, take care of yourself and each other. Thank you. 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 club.
00:29:53
Speaker
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00:30:05
Speaker
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