The Middletown Centre for Autism Podcast
The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus on the lived experience and knowledge of our community. Episodes highlight issues impacting autistic people and we share ideas for family members and school staff who are providing support.
The Middletown Centre for Autism Podcast
Understanding PDA with Dr Alison Doyle
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In this episode, we’re joined by Dr Alison Doyle - an educational psychologist, researcher and practitioner who has spent years supporting neurodivergent people. We discuss Pathological Demand Avoidance (PDA), why people may relate to it, how they can find support and why the topic may be controversial for some.
Understanding Pathological Demand Avoidance
Speaker 1Welcome to the Middletown Podcast . I'm Kat Hughes , I'm a researcher at Middletown and I'm also autistic . In this episode I chat to Dr Alison Doyle , an educational psychologist with many years experience supporting neurodivergent students at all levels . It was thanks to Alison and her team when I was in university that I got my own dyslexia and then autism diagnosis and I went from someone who epically failed her leaving search to someone who ended up with a PhD .
Speaker 1Alison has been dedicating a lot of her time to developing research and support relating to PDA . That's pathological demand avoidance , and PDA is a controversial topic for some , and we do chat about that in the episode . We also discuss the very real anxiety that people to PDA . That's pathological demand avoidance and PDA is a controversial topic for some , and we do chat about that in the episode . We also discuss the very real anxiety that people experience and how they might develop individual supports . I hope that , however you feel about PDA , you find something interesting in this conversation , Alison . Thank you so much for joining us on the podcast . To my shame , if I'm honest , PDA is a topic that I feel like I don't know nearly enough about . I've worked with a couple of people who identified as having PDA profiles and they had very sort of particular and really interesting ways that worked best for them in terms of working with them . But I don't know that much about it . So a very basic question can we kick off with can you tell me exactly what PDA is ?
Speaker 2Okay well , pathological Demand Avoidance , or PDA , was first proposed and researched around the 1990s by Elizabeth Newsom , and she drew on her work in the Child Development Research Unit of the University of Nottingham , where she pioneered a really interactive and child-centred approach to assessment . So she believed that observing children at play and interviewing parents are an essential part of the assessment process , and she observed that the behavior of some of the children attending her clinic was like autism , but with a seemingly better level of social understanding or atypical autism . And she argued for the recognition of PDA as a distinct qualitative difference within the then pervasive developmental disorder diagnostic classification of autism , which was characterized by this resistance to both pleasurable and stressful ordinary demands or tasks associated with daily life , using socially manipulative , avoidant behavior , impulsive , unpredictable and volatile mood changes and an obsessive focus on particular people , both negatively and positively . So PDA is increasingly recognized as a distinct profile within autism spectrum , for example , by the Autism Education Trust in 2017 , the Cooperative Research Centre for Living with Autism in Australia in 2018 , and the National Autistic Society in 2019 .
Speaker 2As our body of research evidence has grown steadily over the last 20 years , however , it is not recognized in formal diagnostic assessment instruments , so it remains a much debated and somewhat contested profile is that the term pathological is quite medicalised and is partially the reason why PDA has been contested in a clinical sense .
Speaker 2So we might better understand PDA if we unpack the word pathological , which means extreme and pervasive . So perhaps PDA might be more recognized and accepted if it was referred to as extreme and pervasive anxiety-based avoidance of everyday demands , where the use of social strategies is a core part of this avoidance . So individuals who self-identify or who have been identified as having a PDA profile might also share autistic characteristics , such as persistent difficulties with social communication and interaction , restricted and repetitive patterns of behavior , sensory processing difficulties , or may actually have a diagnosis of autism spectrum disorder , may actually have a diagnosis of autism spectrum disorder . However , there's also a growing argument that extreme demand avoidance is not isolated to an autism diagnosis and opinions differ as to whether PDA is a phenomenon within the autism spectrum or whether it's more effectively understood as an external comorbid condition related to heightened anxiety .
Speaker 1Pretty interesting . We have so much to learn still but it feels like we're getting somewhere finally in relation to it . And what are demands then in this context ? How do we describe them ?
Speaker 2Yeah , they're quite interesting . Demands are connected to any everyday activity , including self-care tasks , moving from one activity to another also , perhaps , or from one space to another , and that includes engaging in activities that are pleasurable for the individual , because that also is a self-imposed demand or expectation . So an important aspect of demand avoidance is understanding the contribution , particularly within autism , of sensory processing intolerance , of uncertainty and executive function difficulties that can result in high levels of emotional dysregulation , including significant levels of anxiety . So most recently , this was demonstrated in research from Aaron Ray , who argues that understanding sensory needs is a key underlying mechanism behind anxiety , especially in those identifying with PDA , and that can help us to move towards a strengths-based approach to supporting people . So , for example , recognizing that these factors can present as avoidance , freezing or escape in response to a specific event or context .
Speaker 2With PDA , this is , as I said , pervasive and extreme . Anything and everything might be experienced as a danger or a threat to person or equilibrium . So this is one of the great challenges for people who spend lots of time supporting a demand-avoidant child or young adult or adults , such as parents , carers , teachers , learning what these triggers might be , particularly in the use of language that might be perceived to be a demand or an expectation , which for the individual translates as you have no choice . So one of the most important approaches is to consistently see and understand that what the individual is communicating is I can't rather than I won't .
Speaker 1Makes a huge amount of sense , and maybe this is one of those questions sort of how long is a piece of string , but how might demand typically be avoided ?
Speaker 2So the way in which people with PDA practice , guidance from the PDA society , resisting and avoiding the ordinary demands of life , including tasks or activities , even those that may be pleasurable For example , wanting to go to the cinema but being unable to leave the house Using quite sophisticated social strategies as part of that avoidance . For example , diverting attention from the demand by using distraction and it's very difficult to reason with somebody who just says I can't , or I can't hear you or just straight ignoring you . Other higher level distraction techniques , such as completely ignoring the question and saying , oh , I like your necklace . Going to extreme lengths , for example , perhaps somebody might say I can't do that because my legs aren't working today . And if that still does not shut down the demand , ultimately this evolves into a loss of control and emotional outbursts in order to stop those demands , including destructive and self-destructive behavior , extreme mood swings perhaps . But , most interestingly , being comfortable in role play and using that engagement in role play and fantasy by pretending , taking on and inhabiting a character , for example in younger children , for example , fully being a dinosaur , or fully being or inhabiting , being a dog and in other situations . For example , I'm a fireman and firemen don't go to school . So I can't go to school today .
Speaker 2The obsessive behavior or intense focus on real or fictional people can often be focused on a specific person known to them .
Speaker 2Might be a sibling , might be one parent , it might be a particular child in their class .
Speaker 2It's quite difficult for peers because whilst that child might seem superficially quite sociable , sometimes that lacks a depth of understanding connected to that control and seemingly having very sophisticated conversational skills which actually mask an underlying difficulty . And that's hard for your peer group . It's quite challenging and exhausting to interact with someone who is inflexible about , for example , the rules of a game or has a need to script or dictate every aspect of play . So the responses , the way in which of avoiding demands , are quite sophisticated actually , but they do really , I suppose , are connected to the understanding that when the intensity of a demand is beyond what they can cope with , this leads to a need for control which is driven by an anxiety or a feeling of threat in the face of demands . And I would say this is something that I think all of us experienced during COVID . All of us experienced during COVID that fear and the need for control and things being beyond our control and not being allowed to do things . So perhaps that can give us a little bit of understanding as to how that might feel .
Speaker 1Certainly and yeah , it really shows that the huge levels of anxiety that people might be living under and the very intelligent and elaborate ways that they're coming up to try and sort of cope with that anxiety . And you mentioned a little bit the impact that that might have on peers , but I'm sure it has a huge impact on the individual as well .
Speaker 2Absolutely . I mean , this is what we have to understand understand that if we can hold in our mind that it's very much coming from a place of I can't rather than I won't , um , that really helps to understand what kind of an impact that might be having on the , as you say , on the individual . But what's the most interesting is this um , avoidance of things that would give pleasure , and I think that that's important because , if we reflect on , one of the features is the strength of imagination and creativity and role play that accompanies PDA . But when that engagement in that creativity or performance in itself becomes a demand , that's problematic . So , for example , whilst art or drama or music therapy may be beneficial initially , over time they might also be experienced as a demand to be avoided . For example , one of the adult respondents to our PDA survey in Ireland from three years ago stated that art therapy was very helpful , but my love of it is just another demand that I put on myself , so I struggle to do it , and that is so important to remember .
Speaker 1It's really sad to hear isn't
Understanding Transition Challenges in PDA
Speaker 1it . It actually reminds me of a woman that I worked with , a wonderful woman , um , who identified as having a PDA profile and she would start a series , or start a series of books , tv or books and love them and then instantly have to stop .
Speaker 1And she , she tried to explore what it was that was causing her to have to stop and she did . She didn't know if it was the idea of losing them in the end or what it might be that caused it , but yeah , it seems like a similar thing she , she loved us and because of that she had to to stop engaging with them .
Speaker 2It's really really tricky yeah , it is , it is and so transitions are transitions a particularly difficult thing .
Speaker 1You mentioned sort of that inertia that people might experience . Are transitions something that might be tricky for people with PDA profiles ?
Speaker 2Oh , so that's transitions from activities or to situations , that kind of thing .
Speaker 1Yeah , exactly .
Speaker 2I suppose it's about looking at what the individual really needs . Yeah , exactly , with transitions which illustrate how they can be experienced as emotional peaks and dips . And I think that's useful again for us , because we have all experienced this as part of a personal life event , whether that be getting married , moving house , having a child , changing jobs , leaving school , moving countries , any event that creates a major change , and obviously what a major change means changes on the age that you are . A major change for a seven-year-old is quite different to a major change for a teenager or an adult . So if we think about the range of emotions involved anxiety , trepidation , annoyance and patience , sometimes depression but importantly , when these events are repeated or come around again , we revisit those feelings and we almost expect to have them . So that is part of our fear is that those feelings will be revisited or repeated . So I think that we can see how , for some people , the tasks which are also demands that accompany those events would prompt an extreme response . So another useful analogy , apart from the transitions curve , I think , is to think of life transitions , which are not necessarily isolated .
Speaker 2Events often happen simultaneously as a rolling landscape , that is , our life course or life journey . Sometimes we have a detailed map . Sometimes we do not . We might anticipate the hurdles , the mountains to climb , the rivers to cross , the stops or pauses along the way , but for some people those obstacles are not clear or they appear very suddenly and unexpectedly . So we also have to factor in the resources , equipment and personal support that might be required to get over those obstacles and reach our final destination . So for people who have a high need for predictability and an extreme intolerance of uncertainty , that journey needs to be planned well in advance . Ideally we try , and the people who love and care for us try to ensure that as far as possible that landscape can be navigated in the least traumatic and most accessible way . You know there are many scenarios where we can only support that person as best we can and hope that different settings help us , but that's not always the case .
Speaker 1And do we know why some autistic people might have PDA profile and others might not ? And is that even the right term ? Is it appropriate to say have a PDA profile ? I don't even know the language .
Speaker 2That's very contested . That's part of the problem . Is it a profile ? Is it a sub-profile ? What exactly is it ? Is it a separate , comorbid or co-occurring condition ? Because the argument is that it also would appear when people who don't have a diagnosis of autism , but again , any individual experience of any condition or disorder or disability is unique to that person .
Speaker 2Autism is formally described and recognized as presenting across a spectrum of difference , as is the case for other neurodevelopmental conditions such as ADHD dyspraxia . So we might also describe autism and PDA and note , you know , that it's not currently recognised within diagnostic guidelines , but a key concern for some autistic researchers is that the existing research and theory doesn't consider the perspective of individuals who do identify as presented with PDA or being demand avoidance . And you know , many studies have reported the significant life challenges for those with PDA and emphasize the need for further research and partnership with those individuals . It's the same as we know that autism is experienced quite differently in girls and women and consequently we might assume that there may also be gender differences within PDA . There are comparatively few research studies that explore PDA in adults and these tend to be accounts of or commentary on their lived experience .
Speaker 2Our research in Ireland in 2019 captured perspectives from a small number of adults in both the survey and individual interviews . Some people are more impacted than others . Some people experience it quite differently access to mental health services and the level of belief and support that's available to help them achieve autonomy and independence . So really , that's a difficult question . Do we know why some people struggle more than others ? I think that's an impossible question to answer . It's all dependent upon our individual experiences of life that sort of leads on .
Speaker 1My next question was going to be do we know how common PDA is in autistic people ?
Speaker 2and that might be a gray area too , I'm guessing there hasn't really been a large-scale study on prevalence since 2015 .
Speaker 2A researcher called Christopher Gilberg and his colleagues first determined the incidence of PDA within a group of individuals who had met the diagnostic criteria for autism , all living in the Faroe Islands , an archipelago in the North Atlantic .
Speaker 2It's an autonomous territory of Denmark . So the entire population of 15 to 24 year olds were screened for autism and 67 individuals met those diagnostic criteria . The parents of 50 of these individuals were interviewed using the Diagnostic Interview for Social and communication disorders that's known as DISCO . So there are 15 items on DISCO which really equate very closely with PDA features . And as those 59 individuals met the criteria for a possible diagnosis of PDA , meaning that one in five of those with autism had indications of having PDA in childhood . So the study found that you know , possibly PDA constitutes a minority of all cases of autism diagnosed in childhood , but there hasn't been a study since then , so it's still quite difficult to know what that incidence might be . But it would suggest that the experience and presentation of PDA changes over time , perhaps due to acquiring coping mechanisms , access to appropriate support , maturity of executive function support maturity of executive function .
Speaker 1But also with adults , as people move into adult life , having the facility to have greater control over how the demands of everyday life can be negotiated and managed , but it's still considered to be a rare profile among autistic individuals and yeah , it makes a huge amount of sense that as someone moves into independence and has that greater control over what they can and can't do in their life , they would be able to navigate but possibly limit themselves quite a lot as well , because they are sort of trying to protect themselves from that anxiety , so they might be missing a lot of things , I suppose exactly and if someone is listening and they're identifying themselves with what you're talking about , or if a parent or teacher is listening and they're sort of thinking , well , this might match a little bit with a young person that I know .
Speaker 1How would someone know if they had a PDA profile or were a PDA ? That doesn't seem right .
Speaker 2Yes , that's really tied up in the whole diagnostic process . Unfortunately , currently there's no formal diagnostic pathway to identifying PDA or assessing PDA . There are , as I said previously , factors within the DISCO to identifying PDA or assessing PDA . There are , as I said previously , factors within the DISCO that can be viewed as reflective of PDA . That was first established in a research paper by Elizabeth O'Nions and her colleagues in 2015 , and it's been undergone several revisions since then . There is something called the Extreme Demand Avoidance Questionnaire , but that's a measure used in research . It's not a clinical tool for assessment and diagnosis . So people need to be careful about using that tool or have been assessed using that tool , because it was never developed for assessment purposes .
Speaker 2But I would say what's important is to collate observations about your child and their experience of demand avoidance in multiple settings in home school , wider community observations and examples perhaps from teachers and other professionals . So you have a good body of data , a good body of evidence , and it really helps to write it down and take note of all of these instances because you have a very clear view on what is happening . So , noting these down , keeping a diary they can inform a conversation that might be part of an autism assessment or reassessment process . It can help to clarify thoughts about how the individual can best be supported outside of the home as well , and then the possibility of PDA can be more robustly explored in a clinical setting . I suppose that's true of all of us .
Speaker 2When you're concerned , or you're worried about a potential condition is bringing to your appointment whether it be with your GP or a clinician a body of evidence as to what's happened is very important , particularly when , in the moment , you may not remember or you may have forgotten . So I would strongly recommend reading the guidelines called Identifying and Assessing a PDA Profile Practice Guidance . This was published by the PDA Society in 2022 . Published by the PDA Society in 2022 . It's been developed by a body of NHS and private clinical professionals and there's a lot of good advice there on seeking further assessment or initial assessment and how that might be framed .
Speaker 1Right , that's really helpful , and are there some general coping strategies that might be helpful , either to support someone or for someone to be able to use themselves ?
Speaker 2way . That's very , very much the same with coping strategies , whether that be strategies that people use themselves or that their loved ones or teachers or so on and so forth , or care workers use with them . Individual strategies that children and adults might use for self-support can only really be identified by that individual in conversation and discussion with supportive other people . It's really because demand is experienced in such a unique way and the avoidance is so unique . You have to find your own individual strategies that work for you . Now what is interesting is caring for animals or access to a pet seem to have a very useful calming effect and in some cases , can almost act as a mouthpiece for discussing feelings , and that's important if we need to get to the bottom of what is the demand and how does that feeling transpire . And it can also be used to filter those demands by placing them within the context of caring for something else . So it was very interesting . Quite recently , the PDA Society conducted a survey with parents on animals and pets , and some of the comments that parents submitted were his turtle sits on his lap during online classes . In other words , he now sleeps a whole night through with the dog on his bed , or lying with her dog helps her to relax . The dog lies across my son's lap and if he's anxious he strokes her . My daughter cannot deal with physical contact with a human but gets a lot of benefit from hugging our small dog . So it's almost like something that stands between the individual and the person who's making the demand , if that makes sense . So understanding this demand avoidant and sometimes challenging behaviour can be better understood , but also , I suppose , using the kind of tools that are used sometimes in education settings . So one would be star setting , trigger , action , response or an ABC chart what's the antecedent , what is the resulting behavior , and then what is the consequence . This observing , as I said before , can really help us to stand back and reflect on aspects of the environment or the behavior or indeed responses of other people , including ourselves , and how these might be creating the anxiety , including understanding that rewards and praise may also be perceived as setting up a demand or an expectation that must be repeated . So by taking note of those triggers or antecedents , especially where it's very difficult for the individual to articulate what is causing the demand , that can give us an awful lot of information about how we can make the experience for people a little bit easier by adapting the environment , by adapting our own behavior , for example .
Speaker 2You mentioned , I think , occupational therapy . Those therapies and interventions must be devised specifically for that individual . So occupational therapy as a discipline considers this interplay between the person , the environment and their occupations or activities , and they can be really , really helpful , really really helpful . They can improve self-confidence , self-esteem , improve anxiety and social interaction , as well as sensory processing .
Speaker 2The one important thing , I think and Phil Christie is a PDA expert who proposed this a very long time ago and personally and professionally , it's something that I absolutely subscribe to is the concept of one good adult . This was a key factor determined in the my World survey , which was a collaboration between Jigsaw , the National Centre for Youth Mental Health , and the UCD School of Psychology in 2012 and 2019 . It's a really integral part of building trust between a child or a young person and an other adult . So accounts from adolescent and adult PDAs and their families really point to this as being a key factor in many of the most successful outcomes . Having somebody who stands outside of the family , who they absolutely trust and can talk to and can take guidance from , is very valuable .
Speaker 1And where might a person go for support with PDA ?
Understanding Life With PDA
Speaker 2One of the most useful sources of information on understanding how daily life is experienced and managed by people with PDA is to actually read first-hand accounts . So there are some really useful themed conversations collated from children and adults by the PDA Society on their website pages under life with PDA or how PDA Can Feel . So the adult themes cover managing life , education , work relationships , parenting and the future , and there are also many blogs , video stories and Facebook accounts from teenagers , young adults and adults such as Sally Katz , christy Forbes , rico Julia Daunt that kind of thing . It's quite interesting because people often say well , as he would say , he's a PDA blogger , and he put it best in one of his blog posts when he said one of the most common worries for the future is around supporting the child in the present . So if I reduce demands , how will they cope as an adult if they've never learned to comply with demands now ? And he says here is my answer to this question what they need now is what they need now . None of us know whether they'll need these same things in the future , and I think that's a really important part of thinking about support for PDA . So , as I said , there are a number of useful blogs and blogs first-hand accounts .
Speaker 2All of the information and guidance mentioned so far are valuable . I could definitely point people in the direction of the PDA Society . They continue to advance their initiatives . They've recently added recorded Q&A sessions on a range of topics , such as navigating and reducing distressed behaviours , working with and supporting PDA adults . As part of our research study , we appointed an advisory group comprising therapists , post-primary and special needs teachers , psychiatrists , psychologists in the HSE and the private sector , parents , individuals who identify with PDA and we invited them to create guidelines for every context school , college , clinic , adult services specific to Irish settings that parents and carers could share with professionals working with their child or adult . So these are free to print , download or email . They're available on a website called prismdlrcom that's Prism DLR , which is a charity , and I would suggest that these be downloaded , emailed , brought to an appointment and provided to education professionals , clinical professionals , care workers , anybody where a discussion needs to take place about support and how that or what shape that support might look like or what shape that support might look like .
Speaker 1Really really helpful . One of the reasons I think that I've not learned that much about PDA and I've not known where to start about PDA is because I know that there has been some kind of pushback in certain areas of the community and I think for myself . I think the reason that I was a little bit wary of it is . I think , as you mentioned earlier , the word pathological makes me a bit uncomfortable because it just feels very medicalized , and I think the word avoidant I was wary of because it feels like it's a choice and that you know , someone is sort of just being a bit difficult . So I think that sort of made me sort of go well , we don't know enough about this to wade in . So where do you think some of the pushback has come from ?
Speaker 2It's very difficult . As you said , the language is quite unhelpful . I feel very strongly the same way about the term school refusal , term school refusal , um , because it's much more than somebody simply refusing to do something . There's still disagreement about PDA as a construct and even whether it's useful to employ a specific label , and some of those arguments encompass um aspects of whether it is really , I suppose , useful . Is it necessary ? Is it unnecessary ? It's unhelpful because all assessments should pick up on all traits and be able to make appropriate recommendations that are helpful
Understanding and Supporting Demand Avoidant Behavior
Speaker 2In practice .
Speaker 2Demand avoidant behavior is often perceived to be oppositional defiant disorder or conduct disorder or just bad behaviour , sometimes attributed wrongly to poor parenting , and this causes huge confusion . I know it's . The use of the term PDA causes division within the autistic community who , for the most part , are actually opposed to any subtyping of autism . Also , when looking from an autistic perspective , is it rational ? Is it not just nature's answer to overconformity ? Thus , you know the term is inappropriate , but inappropriate because , as you said , it pathologizes what could be a natural behavior .
Speaker 2Some professionals argue that oppositional defiant disorder could be diagnosed as a co-occurring condition alongside an autism , as an alternative to using the term PDA , or that PDA could be described instead by attachment disorder or personality disorder or trauma , but it's very difficult . There are overlaps in characteristics and diagnostic criteria which make it really difficult to unpick exactly what is underlying a very complex presentation . The notion of PDA is gathered ground due to social media , due to parental pressure , and puts the emphasis on the individual and not the wider environment or interactions with others . So it's very difficult . These disagreements exist as to whether extreme anxiety-based demand avoidance occurs within autism across profiles as a collection of symptoms , or whether it's a distinct developmental profile , odd or conduct disorder , both of which have criteria which describe the presence of spiteful or vindictive behavior which , in my experience , does not reflect PDA . So whilst it's possible for an individual to have either one of these as a co-occurring disorder , they are qualitatively different to PDA . So that gives you a kind of flavour of the difficulty surrounding this concept .
Speaker 1Certainly , and I know a friend of mine who identifies with it very much has found it incredibly helpful as something that she can use . So it's almost sort of an anchor that she goes to when her instinct is to say no and to try and back out of something . It gives her a moment to stop and think is it the PDA , what is it that's happening ? And she can kind of analyse it within that moment , which I think is incredibly helpful . So I think if people are identifying with it and finding it useful , then it's important for all of us to learn about it , and our jobs to learn about it certainly might . Anyway .
Speaker 2Yeah , I agree with that . I think that's a very important point , because and I think it is important- to see it as something which may not necessarily be confined to autism .
Speaker 2For me it's very similar to the concept of um , autistic inertia , just this inability to move forward or to start something , or to step out of something and and to finish something that you're engaging . But personally I also think there's , you know that can be applied to adhd , for example . You know the , the deep hyper focus . You know we call it in the ADHD community , oh , procrastination hyperfocus . So it's a very similar thing , this kind of inertia . So once we start putting labels on things , it becomes incredibly difficult .
Speaker 1Yeah , it really does . It really does . Well , I guess that kind of leads to the next question that I was thinking of . Obviously , I would assume that the PDA isn't really considered within the diagnostic process . If someone is getting an autism diagnosis , would it be helpful if people were thinking of PDA in that moment ?
Speaker 2I think it would be helpful in respect to it could potentially alleviate the tendency to misunderstand external behaviors you know , as we talked about here , evidence of instances or when demands become too much in a number of different settings .
Speaker 2And looking at this through the lens of , you know , identification and assessment , going to those guidelines published by the PDA society which collate all that professional practice and experience of a multidisciplinary group of professionals , it can really help to they provide some very good suggestions for how to include it within an autism assessment . So , clinically , we seem to be stuck in an impasse in terms of this lack of formal recognition and acceptance and this kind of bleeds into it happening in other contexts , such as education contexts such as education and healthcare settings . So this needn't be the case where multidisciplinary assessment points to extreme anxiety-based demand avoidant behavior as an explanation . So perhaps practitioners , clinicians , might include this in an assessment , reporting it as the presence of a PDA profile or demand avoidant profile , or a demand avoidant profile which is seen in it also accompanied by autism . This would support parents in sharing information about this profile with other people who are going to be supporting that individual and it will be helpful then in signposting the many pertinent resources that are available my very last question for you .
Speaker 1Um , I'm always very aware and I think the way that we understand autism has shifted so much in terms of our awareness of the impact of the outside world and the impact of understanding and acceptance on autistic experience . And so I wonder is there anything that , as a society , we need to change to be able to better support autistic folk in particular , who identify with PDA , or just people who identify with PDA in general ?
Speaker 2That's a big question . So autism itself is surrounded by many stereotypes and misunderstandings , lack of empathy being one , for example . Arguably one of the most frequent misconceptions about PDA is that demand avoidant behavior , especially where it may manifest as a behavior of concern , is a deliberate and considered refusal to comply , which is not the case . Autistic and PDA profiles are nuanced , they're dimensional . They require a unique approach to support and management . Fundamentally , they require flexibility , a recognition that what works today may not work tomorrow . That as an individual grows and develops , strategies that were previously may need to be reviewed and revisited , perhaps adapted . An acceptance that there's no absolute right or wrong way of doing things but there may be a better or more successful approach to support . That individual Strategies that work for your child and your family might not necessarily work for others or convers . Conversely , recognizing that strategies recommended by others may not necessarily work in your own context . So understanding that the child or young adult or adult that you are supporting is unique and building a support framework as it relates to them and being there , trusted , their one good adult , would be very helpful In terms of masking difficulties or differences , either at home or in the school setting . This might contribute to misunderstanding if an individual is perceived to be engaging in calculated behavior , which is not the case at all , it's really important .
Speaker 2I mentioned earlier the use of the term school refusal is very unhelpful in the context of PDA or indeed anybody else . Children and young people by and large have an open and engaged interest in learning and they welcome the opportunity to expand their areas of interest and indeed to share these with other people and actively want to enjoy friendship . Children who identify as PDA or present with PDA features . One of the difficulties is sometimes self-sabotaging , their own need to have a friend or to play with somebody , and it's really important that we can help by understanding that Challenges in attending school are more highly associated with emotionally based school avoidance . So negative feelings such as anxiety , emotional , physical stress associated with previous experiences , they create a reluctance to attend school , which leads to a reduced attendance and then , consequently , further anxiety regarding school .
Speaker 2Some of the parents I have talked to about their child being supported in school , parents and carers refer to supportive school staff as people who just get him or they just get her . So that means taking the time to acknowledge and explore their perspective and to develop this relationship built on trust . So , in education settings creating an environment that feels safe , creating a low arousal environment , a balanced and tolerable level of engagement in task recognizing when , accepting that some engagement with a task and recognising when it might just be becoming too much a creative and flexible approach to managing that engagement as well and recognising that there are other similar profiles intolerance of uncertainty , autistic inertia . They all need a long term commitment and a whole school approach .
Speaker 2When I think about it in terms of the autistic experience of everyday settings and what we can do in society , just recently , talking to a student an adult student one of the most traumatic events for them is , for example , visiting a hospital setting . You get a medical appointment . A hospital setting is not really set up to reduce anxiety or stress because even when you receive a letter explaining what is going to happen , the reality can be somewhat different because they're very busy places . Because they're very busy places , they're very noisy places . So we need to look at our environment and how we can create a more . I wouldn't hesitate to use the word pleasurable for a medical appointment , but a tolerable situation .
Speaker 1That's an awful lot to think about . Thank you so . So much , alison .
Speaker 2My pleasure .
Speaker 1Thanks so much for listening to the podcast . If you want to know more about Middletown , you can find us on Twitter at Autism Centre , or on Facebook or Instagram at Middletown Centre for Autism .