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Why Diagnosis Matters for PDA Adults
589 Plays22 days ago
Welcome back for Season 2 of PDA Life - The PDA Society Podcast.
We’re seeing a rise in adults discovering their autistic identities, and yet it’s increasingly difficult to access a diagnosis – which can be used to gatekeep vital support.
In this episode we’re chatting to PDA parent, Paula, about why access to a diagnosis is so important for finding your community and understanding your experiences.
If you’re struggling to find your PDA community, you can join our Facebook Groups here or contact our support service for help.
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Transcript
Introduction to PDA Life Podcast
00:00:02
Speaker
Welcome to PDA Life, the podcast brought to you by the PDA Society, where we'll be exploring the highs and lows of pathological demand avoidance.
Meet the Hosts
00:00:11
Speaker
I'm Rachel. And I'm Sarah, and we're your hosts.
00:00:14
Speaker
As the UK's only PDA charity, we're bringing together PDAers, carers, clinicians and researchers to answer the questions which matter to you most. Hello and welcome to this episode of the podcast. My name is Rachel and I'm your host for today.
Introducing Paula Webb
00:00:30
Speaker
I'd like to introduce my guest, Paula Webb. Paula is a parent of three children um and one of whom is PDA and he's now in his thirties. Paula has been working with the PDA society in a variety of roles.
00:00:43
Speaker
since it was founded and therefore brings a lot of wealth and experience to our podcast today. So welcome Paula.
Challenges in Diagnosing PDA in Adults
00:00:49
Speaker
Thank you. Great to have you. and So I think probably one of the and sort of the best and places to start really is why is it um so hard for adults to get a formal diagnosis of PDA in the UK, especially through the NHS?
00:01:05
Speaker
it It is a really good question. And I think what we have to do, first of all, before we can really answer that question is we have to say, well, um there's always ah ah period of many years between a neurodevelopmental condition being identified by a researcher or a clinician um and such as PDA um um being then routinely assessed and diagnosed. Now that can be 20 years, it can be 50 years, it can be more. It depends on the need for plenty of peer-reviewed research.
00:01:50
Speaker
Professionals need to be aware and understand what PDA is. um Diagnostic clinicians need to understand and be trained in actually how to assess an individual for PDA.
00:02:04
Speaker
I am saying PDA, but I think we all know and recognise, you know, PDA is a profile of autism, but I'm just shortening it today. yeah um So as with many other newly identified conditions, it can take many years for them to be written into the diagnostic manuals. So they are the DSM and the ICD.
00:02:30
Speaker
And most clinicians within the NHS um are are a little rigid, especially where, you know, adult diagnostic services are concerned. um And so they won't diagnose anything that's not in those diagnostic manuals.
00:02:48
Speaker
Even though PDA isn't yet in those diagnostic manuals, some clinicians within in the independent sector and the NHS children's diagnostic teams are assessing and diagnosing children with a PDA profile of autism.
00:03:08
Speaker
And that's because children are generally seen as being a little...
Inconsistent Diagnoses Across Regions
00:03:13
Speaker
easier to assess because they haven't developed any other illnesses or mental health conditions.
00:03:22
Speaker
So when they are assessed, the clinician can see that all their particular traits must be related to their PDA and not another mental health problem. yeah um The other reason that you know children um do get diagnosed um quicker than adults is that um you've got to think about the pressure um that maybe the NHS are under from parents, from SEND teams, from other professionals, educational establishments, i.e. schools, et cetera,
00:04:03
Speaker
you know, they want children to be diagnosed with the correct diagnosis um so that they can um correctly support the child within the educational establishment, or they can correctly um ah use the right medications or treatments, you know, for these children. so So, as I say, they they are being pushed, children's services, to and to make sure that children get the right diagnosis.
00:04:36
Speaker
However, assessment and diagnosis for children is still in what we call our postcode lottery. Yeah. You know, so some parents are still having to fight hard with the and NHS or go to the independent sector.
00:04:53
Speaker
So currently I personally, I'm the PDA society, whom I work for, and are yet to hear of any NHS trusts in the UK that assess, well routinely assess and diagnose adults with a PDA profile of autism.
Need for Policy Changes and Training
00:05:17
Speaker
and that's across the board, none of of them have come forward and said, we've now been trained, we now can assess for a PDA profile of autism, which is quite different, really, to what we're hearing in children's services.
00:05:33
Speaker
Very different. Yeah, yeah. I mean, as you say, it's patchy as it is in children's services. It's that postcode lottery. But for adults, for there to be Nothing at all. That must be really disarping. Yeah. Yeah. so I suppose what we're saying is for that to be reversed, the NHS adult autism diagnostic teams, sorry, that's a mouthful. The NHS adult autism diagnostic teams would need to begin to rewrite their policies. Hmm.
00:06:05
Speaker
And they would begin to train all their clinicians in how to identify, assess and diagnose PDA. That's, you know, that's got to happen before adults, you know, are going to be able to get an assessment from the NHS.
00:06:25
Speaker
Yeah. And that obviously that's a huge amount of work. And not nothing that's going to happen overnight, is it? um No, I don't think it's going to happen overnight, just as it didn't in children's services. um But it will happen.
00:06:40
Speaker
yeah. You know, it's got to happen. Definitely, definitely. And I guess, but you know, if we think about the adults themselves then, as as we touched a moment ago, so how does it feel then for adults who who maybe have spent years knowing that something doesn't quite fit...
00:06:57
Speaker
but they can't get those professionals to validate what they're experiencing. What impact does that have? a Well, you know, from my daily work on the support service for the PDA society um and coming into contact with lots of adults um who have, who suspect they have PDA. um it's It's extremely frustrating for them.
00:07:24
Speaker
Extremely. um It's very confusing. And they don't always see whether it's through the NHS or through independent services. And it makes them very distressed and angry that professionals are not listening to them and they're not validating their experiences.
00:07:43
Speaker
yeah I mean, some come to the support service with no diagnosis at all and they've read something on PDA and for the first time ever, you know they've had their light bulb moment and they know a certainty you know that this is what has been missing.
00:08:02
Speaker
you know This information does validate their experiences. Some come with a diagnosis of autism to the support service, they may have got that from childhood. and Or they may, you know, have sought a diagnosis through the and NHS and come out with an autism diagnosis.
00:08:25
Speaker
no um I think the unfortunate bit that I find, you know, that that really sort of makes me quite sad is that some have have have not had that opportunity to have their traits recognised, their characteristics recognised, and that professionals in the past have actually diagnosed them with mental health problems.
00:08:51
Speaker
i tell And actually trying to get the NHS trusts to recognise that this is not a personality disorder, but this is a profile of autism.
00:09:07
Speaker
is actually very frustrating indeed. Yeah, I bet. I bet. Incredibly frustrating for, you know, for the for the individual themselves, their families and, you know, sort of it's it and it's been able that not being able to make progress, that feeling that everything just doesn't fit right. And why can't I do this? Or why do I find this difficult? And not having that answer is really difficult, isn't it?
Impact of Unrecognized PDA on Personal Lives
00:09:31
Speaker
yeah Yeah, very, very difficult. So then what impact then does that have on on maybe their work? And, you know, it's not just only only the the impact to themselves and how they feel about themselves. How about impact on work or relationships or their family life?
00:09:47
Speaker
Are you finding that that's, you know, or hearing from individuals that you've um worked with, how the impact that that's having on those areas their lives? Sure, yeah. I'm going to start with family. um So, you know, if your family, your parents, um didn't know about PDA way back in the 1960s or the 1980s, you know, and they were trying to raise you as a child, um Unfortunately, you know, they were told maybe you were naughty, you were lazy. Maybe they were told that you had a mental health problem. And so parents weren't able
00:10:29
Speaker
you know, if you're sort of 40 or 60 years old now, your parents weren't given the right approaches, strategies, professionals to help raise you prevent, you know, anxiety and prevent you developing mental health problems. So unfortunately, families sometimes are, well, become estranged, really. You know, because, you know, you might get to 16, 18 and your parents are still giving you requests and demands that you can't cope with. You're becoming more aware of yourself. And sometimes that young person will actually leave home.
00:11:14
Speaker
we Leave home probably far too early. like and and then have a whole another set of difficulties to contend with. Um, but what it does do is leave family relationships very strained.
00:11:28
Speaker
Yes. Um, some have, you know, been able to develop them again later on in life. Um, but for some, it leaves them very lonely and very isolated.
00:11:39
Speaker
Yeah. And then it's trauma for that individual and trauma for the, for the other family members as well. Isn't it? This is very often incidences that, that happen that it takes a long, long time, if at all, as you say, to be able to get over and move forward. Um,
00:11:53
Speaker
Whereas if they just had that diagnosis when they were younger, then Maybe, maybe, maybe not, but maybe those instances might not have happened. Yeah, exactly. um So sometimes we can't blame parents because they didn't know. yeah ah But what we're left with is an adult who's now possibly living on their own.
00:12:15
Speaker
So in terms of not having a diagnosis and being in work, well, work is incredibly difficult for a PDA-er. Some do manage it, some work part-time, some work, well, they're self-employed, because that's maybe easier. and Some volunteer, and because that's you know one day, because that's all you know they feel they can cope with, but it gives them the self-esteem that you know they like. um
00:12:46
Speaker
But to be honest, in a workplace, it's a jungle of policies, procedures, requests, expectations, you know, as an employee, you're expected to do certain things every day, yeah like turn up for work on time.
00:13:05
Speaker
You know, for some PDAs, that's incredibly difficult. So without a diagnosis, you can ask for reasonable adjustments. yeah And as part of the Equality Act, you are supposed to get those reasonable adjustments.
00:13:20
Speaker
ahead But with a diagnosis, and with a diagnostic report that then can go to your employer your human resources department could probably mean that you get more reasonable adjustments than without a diagnosis Yeah, and that those reasonable adjustments are appropriate as well, isn't it more More appropriate, yeah. and Regarding relationships, um you and I would know that you know living with a partner, being married, yeah having a relationship um has its ups and downs. yes
Finding Community and Validation
00:14:04
Speaker
All couples have their ups and downs.
00:14:07
Speaker
Yeah. Well, I think if, if you were with somebody and they knew what your difficulties were, they knew what your strengths were. um they knew what you found hard and they could help and compensate for that, you know, and they could step up to the mark. It would be so much easier on a relationship. Yeah.
00:14:29
Speaker
Yeah. I mean, obviously, that depends on PDA expressing to their new partner um that they have PDA. um Here's a diagnostic report if you want to read through it or just picking out certain things to to help them understand you.
00:14:49
Speaker
Yeah. so relationships are hard at the best of times. Mm hmm. Probably more so if you have neurodivergent condition um and certainly if you don't reveal that condition to your partner. yeah so yes, PDAs can have several partners, but then so do some of us anyway. This is true.
00:15:20
Speaker
Yeah. Yeah. It just adds that extra layer, doesn't it? of ah um Sometimes it's that miscommunication, isn't it? and ah And, you know, as you say, you know, as as if you're... um living with somebody you and have a relationship that you there's often miscommunication that happens within any relationship but it could be that extra layer of of not understanding where the other person is coming from that then can cause those tensions in a relationship that if they knew the reasons why somebody was acting or behaving the way they were then there'll be more at that understanding isn't it
00:15:56
Speaker
Yeah. I mean, um one example I remember from a conversation a long time ago was that um ah a lot of their arguments happened after dinner and the PDA couldn't understand why.
00:16:10
Speaker
um and then over a bit of a an argument, it came out that the person they were living with said, you know In my family, it was always understood that if one person washed the dishes, the other person would dry them and put them away. And you never do that.
00:16:30
Speaker
ah Of course, the PDA has said, well, I didn't know that was one of your expectations of me. You should have said sooner. ah But actually, now that's become a bit of a demand and I can't do it. We'll have to work through that one.
00:16:47
Speaker
yeah yeah But it let both parties know what the difficulty he was. And most of those arguments and discussions you know um were put to bed and they worked around it.
00:17:01
Speaker
yeah Yeah, yeah, yeah. It's it's having having the knowledge, isn't it? It's been able to work through it. But if you don't haven't got all the pieces of the jigsaw, just so to speak, it's really difficult then, isn't it? Yeah, it is.
00:17:13
Speaker
So for many adults, then getting or not getting a diagnosis can really shape how they see themselves as well. And how does that search for answers affect someone's self of identity and maybe their self esteem?
00:17:29
Speaker
oh I found this quite a big question. going to answer it the best way I can because, um you know, i'm I'm not a PDA-er.
00:17:39
Speaker
and I may live with one, yeah um but he doesn't always tell me how he's feeling. yeah um So I'm just going to do the best I can with this one.
00:17:50
Speaker
For any one of us, a sense of identity and belonging can really help us feel heard, acknowledged, validated and understood as well as hopefully better supported by everyone around us.
00:18:11
Speaker
um Achieving a diagnosis can help you on your pathway to understanding yourself, trying to play to your strengths, um work through your difficulties This can in turn can raise a person's confidence and self-esteem and, you know, and find a like-minded group, you know, find your tribe yeah and who will understand you, you know, and can actually say, oh yeah, I do that.
00:18:47
Speaker
You know, I mean, I remember, and I've got something called Meniere's disease, which is an imbalance in the inner ear. Mm-hmm. So sitting down is really good.
00:19:00
Speaker
um And once I found somebody else who had Meniere's disease and I could talk to them all about it, you know, we'd say, oh, yeah, spiral staircases. No, no. So likewise, you know, if you suspect you've got PDA, you've just been diagnosed with PDA, finding your tribe, i.e. finding a like minded group of people, whether that's on Facebook or a support group or or somewhere else, locally, um is is it's just really, really good for your self-esteem and your confidence. You know, you really don't feel so alone. Yeah. um
00:19:42
Speaker
mean, there are some adults that have not actually been able to obtain a diagnosis through the and NHS or and the independent diagnostic senders, but they still know that they have PDA,
00:19:54
Speaker
and self-identify. Now, obviously, there are there are quite a lot of people who are self-identified as having PDA, and they are accepted into the PDA community. You're definitely welcomed at the PDA Society um because everyone knows how difficult it is to achieve a diagnosis as an adult. um So, you know, i would say...
00:20:25
Speaker
start, you know, start um talking to somebody yeah about PDA and you will see how they also probably have the same difficulties as you and you will find some sense of identity and belonging. Definitely. And, you know, they can reach out to our, we have, PDA Society has a Facebook group for adult PDAs, don't we? So, you know, reach out there.
00:20:52
Speaker
And connect, as you say, find your tribe, connect with people and share your experiences because that's that's when the support kicks in then, isn't it? That's how how we can support each other.
00:21:02
Speaker
i mean, one thing um the manager you taught me was that an awful lot of people are on the edge just reading posts. yeah know They've registered and they're just reading. And eventually, after some time, you know they then start posting as well. Yeah.
00:21:20
Speaker
you know And so you know I'd encourage anybody to you know start reading and you'll see how your ah traits, difficulties, characteristics are the same as other people.
Growing Awareness but Diagnosis Challenges Persist
00:21:34
Speaker
Everyone needs to belong, I think. you know Everyone needs to be understood, but they also need to understand themselves. but That doesn't always come through diagnosis.
00:21:45
Speaker
No, no. um um And we've talked previously, and we have that, you know, diagnosis in itself is that bit of paper that report, but actually it's that what does it bring? What does it bring with it? And what that understanding for you as a person and for other people is, is what's important. if you can get that without the diet and a formal diagnosis, then that's great.
00:22:05
Speaker
But as you say, it's finding your tribe, finding the people, helping people understand how you feel and why you feel like that is is important. Yeah, absolutely. Do you think then that the system is improving or are are adults still having to fight for recognition the same way parents fight for PDA children do?
00:22:25
Speaker
I think awareness of PDA um in the last 10 years has significantly grown. And not just through the PDA Society, there are now probably 100 times more books. um There are now some um professionals, whether they be private or whatever. You know, there are some people out there that understand PDA. and um So and professionals out there that understand PDA. um yeah the only thing we're missing in the adult sector really is um is that diagnosis from the nhs you know it's not even a postcode lottery doesn't matter where you live where you're not getting one um you know so um so awareness has grown but it's the diagnosis that's that's really not grown fast enough because the nhs aren't training their clinicians yeah um you know
00:23:23
Speaker
If I think back, and I am a bit old, um to when in the 1940s, you know, when um autism ah was identified.
00:23:36
Speaker
I'm going to use one of my sons. um He wasn't diagnosed until 1998 with autism.
00:23:47
Speaker
it with autism So I said to the pediatrician, um do you do you diagnose children with autism all the time? And she said, actually, I'm in my 50s and this is the first child I've diagnosed with autism, even though this is my job.
00:24:05
Speaker
Yes. know, and and I was astounded. yeah So I think we've got to remember how long it took to for children and then adults to start getting diagnosed with autism to realize we may have to just wait. And that's an awful thing to say.
00:24:27
Speaker
um but yes, it's a postcode lottery for children, but we've not got there for adults yet. Yeah. Yeah. yeah Um, I think the other thing to say is,
00:24:40
Speaker
um There's something that drives me really to, to be on our support service, um especially in the, you know, sort of the over 18s inquiries.
00:24:54
Speaker
Children have their parents to negotiate through the minefield of the NHS to try and get a diagnosis.
00:25:06
Speaker
or they have parents who can possibly save up and pay for an independent diagnostic centre for a diagnosis.
00:25:18
Speaker
But the adults that I see coming forward and contacting us um are adults that because of their PDA, they're on benefits. They're unable to pay for the independent diagnostic centres. And um they don't have those family members who can help them.
00:25:42
Speaker
to navigate NHS, only to be told probably, you know, that the NHS don't diagnose PDA. um yeah i think we just have to remember that the adults who suspected they have PDA have pathological demand avoidance.
00:26:04
Speaker
some will be unable to write an email, make a phone call or attend an appointment with a professional.
00:26:15
Speaker
yeah So it's going to be incredibly hard for the adults you know that I talk to who to achieve a diagnosis you know without the NHS.
00:26:29
Speaker
Yeah, definitely. And as you say, it's having that It's having that structured support around you that when you that you have when you're a child, whereas when you're an adult, that structure support might not be that are there anymore or to that extent, or you're expected to do things yourself and therefore with the demand avoidance, it's really, really difficult. yeah
Reaching Out for Support and Connection
00:26:48
Speaker
um And I know shortly we're going to be recording Q&A session about that and giving some lot more practical steps about how and and sort of adult diagnosis, so for um getting on that pathway to help with adult diagnosis. But just to sort of finish off our and podcast, and what is your most important takeaway, would you say, for our listeners?
00:27:13
Speaker
knowing that I might be talking to um a lot of adults who suspect they have PDA yeah or a lot of parents who suspect their ah young adults you know have PDA. and I think my my sort of parting thing would be, please, if it's the one email you do do this week, please contact the support service.
00:27:38
Speaker
yeah We have some absolutely lovely people ah waiting there to reply to your email. Try to be as specific as you can.
00:27:49
Speaker
i know it's not a ah long web box to put your information in, but just put what you can and we'll reply and we can have that two-way conversation through email or telephone if you can manage it. um And we can start talking about your needs.
00:28:05
Speaker
Yeah. Your needs, okay, and how... we can help you to meet your needs. um And the other thing I would say to adults is it doesn't matter that you don't have a diagnosis diagnosis in some ways. I know it may to get services, I'm aware of that. but um just try to contact one other person whether that's the pda society or whether it's going onto the pda society's facebook or another one and start talking to somebody please try not to be totally alone yeah now that's such that's such good advice and if You know, if if when we broadcast this podcast and if it's just one person contacts somebody on Facebook, if they so write that one email or reach out to somebody, then that that it makes that difference, doesn't it? Because it's it really is about finding your tribe, making those connections and having that understanding from others as well. So that's brilliant. Thank you so much, Paula. We really do appreciate it. If you enjoyed our podcast today, then please don't forget to to like and subscribe. And, and you know, if there's any any other support that you feel that you need, as Paula said, like then please do reach out to our support service. Again, the link to that will be in our notes.
00:29:23
Speaker
um and And just thank you very much for listening. And thank you once again to Paula. Thank you for having me. Thank you. So please do take care of yourself, everybody. Take care.
00:29:34
Speaker
Bye bye.