Thanks for doing this interview and putting out for the world to see. The audacity of some professionals to say PDA doesn't exists! My child very much exists, it's such a loaded statement. What I hear is: " go away, don't come here and challenge my knowledge or skills, that makes me look bad".
My 4 year old boy has just begun school, and amidst many great struggles we have recently heard about PDA, and this seems to be the most fitting description for his behaviours and personality, It has been heart breaking to seem him struggle so much since starting school
PDA and being learning disabled absolutely can co-exist, one of my children being an example of this! I see this is 2 years old,so I'm hoping your knowledge and experience of this has now progressed!
The research and development hasn’t changed on this. If a child has a learning difficulty and presents with demand avoidance then it may not be PDA but one of the other several demand avoidances. In cases like this we would recommend a PDA specialist assessing to unpick it all 💛💛💛
My daughter is 40 with a diagnosis at 13 months of developmentally delayed. At 16 75% of autistic traits. Moving forward to 40 I think her autistic traits have increased. Her developmental delay is classed as severe intellectual disability and I think a definite PDA.
Thanks for your comment, we appreciate your point of view and sharing your experience. We are working with the research that has been published and the guidance for identifying the PDA profile, and this video is still in line with that. Libby is one of the key people in the PDA Professionals network for the UK, and so if anything changes we will re-interview her and we can discuss and, of course, put your questions to her.
@SunshineSupportUK this is not quite right. A year or so ago, the pda society updated their website, and they/libby Hill did change some of the wording about how pda can also co occur alongside people with learning disabilities.
Thanks Lucy - our comment previously was over a year ago so it makes sense that things have evolved since then! We'll continue uploading PDA content (we work with Libby Hill quite often) which should reflect the changes and more up to date info! :)
@@SunshineSupportUK Thank-you. It's hard to overstate the value of the catharsis I get from the genuine lapse in my repressive loneliness, thanks to our community. My defence mechanisms against positivity are strong, but I'm working on it ❤️
I left home at 16 because I just couldn't stand the dictatorial way my mum dealt with me. It was her way or the highway, threats if I didn't do as I was told. It was constant arguments until I just couldn't bear it anymore and I left. But I have gone through life feeling like I fight everything everyday. Life just seems so heavy. Now I am 51 and a life coach I started with asked me if I had autism. I hadn't really heard anything about it before but she recommended a book which I read and page by page the penny started dropping. Today I saw a video about PDA and that penny dropped again as I have always felt combative and fought against any restraint I have felt.
Yours, sounds like my life story, I'm 56. Was diagnosed with adhd 12 yrs ago but the last two years learnt more by going to The Autism Show, NEC. My light bulb moment!! Fore-armed myself
My child will say something offensive and it is not for manipulation but to equalize their status and autonomy. For whatever reason they feel a power struggle this helps them to equalize that feeling. I politely respond with a non rattled “is that appropriate ?” Or “do we feel better?”
I have 2 adult children with ASD and PDA tendencies but one has learning difficulties and the other doesn’t. The boy also has a genetic disorder and more sensory issues and this fuels his PDA of daily tasks like eating and hygiene and he does not mask so shows in all settings but the girl masks outside the home and this has been the barrier to getting her a diagnosis and now in adult she has finally reached rock bottom and unmasked more which will hopefully help her get a diagnosis. It is so hard as until the individual lets others and professionals see their true self, professionals do not believe parents and the whole family end up in distress and trauma. Because she would not attend appointments but went to school (1 year school refusal) the system refused to diagnose. We are just attempting to re enter the system in adult services but waiting list about 2 years and daughter now has anorexia and severe anxiety and low mood and I’m her only support, while also caring for my son full time at home and working full time from home. PDA is very real and so obvious once you understand its complex presentation but professionals are years behind where we live and still think you can’t be autistic if you have imagination but its social imagination that is lacking not general imagination! 😳
Oh gosh what a difficult journey you have been on. We really do want to see changes in this area so children thrive and don't have such awful lasting trauma. We are here if you need us and run regular free cuppa & chats if you would like to join us. /Kat
Lucy Smith Hi Lucy, we would be keen to have you discuss this with Libby so we can provide some clarity. If you’re not booked onto our upcoming PDA webinar already, please let us know and we will extend an offer of a free place so we can explain this in further detail and you can ask Libby questions directly. She has so much knowledge on this presentation and is so keen to share it 💜 if you’d like us to provide some clarity do email us through our website and we will sort out your complimentary ticket 💜
Totally agree. This statement is totally invalidating and unhelpful to us parents who are experiencing even greater complexity of meeting needs yet PDA strategies clearly make sense and work. Diagnostic overshadowing is still rife and dangerous
Apologies for the late reply, TH-cam isn't great for showing us replies on threads of comments. Definitely get in touch with Libby Hill as she's so very articulate on the topic. PDA strategies often work well on neurodivergent folk whether they have PDA or not, because so many of us ND's have high levels of various types of demand avoidance as part of our presentation, but aren't explicitly PDA - I hope this is worded succinctly! But we do absolutely agree that PDA is far more complex and nuanced than the world has ever realised. This video is four years old and since it was published, guidance and literature on this is likely to have further evolved. We'll certainly pose the question to Libby and other PDA speakers we have connections with as it is very important to properly address, and we don't ever want anyone to be invalidated - the total opposite of what we set out to achieve. We hope you're doing well! x
Thank you for this, it's such a wonderful, clear explanation. I am a huge fan of Libby Hill 😍 I wish she could meet my daughter as I'm sure she'd see what I see.
Watching this presentation, I’m wondering if PDA really explains a lot of the neurodivergent overlap between autism spectrum and ADHD diagnoses (“audhd” I’ve seen in a few internet spaces). If it eventually comes to be distinct from those two diagnoses in the DSM for that reason, it would be really interesting!
What is learning difficulty defined as? My son is so bright with vocabulary and knows so many facts on war and the world he’s 9 but he won’t read or write could this not be the demand disorder ?
Absolutely. However, it can be tricky to get screening/testing done, so many parents meet a bizarre amount of resistance here. Thankfully we are able to signpost and support them!
So people can have PDA and learning disabilities !!! unfortunately a lot of people with learning difficulties PDA have a really hard life because the training is not there 😞 a lots of staff and parents are very controlling in many ways and form towards people with learning disabilities.
We have had a look at the Mencap website and they don't mention an awful lot on PDA. The PDA Society will have the same sort of information as Libby as they all work together, they are all part of the PDA Professionals network who are actively researching PDA to develop a robust diagnostic tool and improved support and awareness. Much of what we know as professionals and families today about PDA is down to Libby and her colleagues. For more information please do have a watch of our full PDA training videos on the Sunshine Academy - www.sunshine-support.org/academy
Does anyone happen to know anyone with PDA knowledge in New Zealand? Ive recently discovered myself this is who Ive always been. I havent managed to find anyone here so far. Just in the UK and the US.
We hear this quite a lot at the moment, it seems to be something that is only really talked about here. More awareness and research is needed I believe.
I can't seem to find anyone with information about PDA with co morbid learning disabilities like dyslexia. I would love to learn how to deal with these two issues together.
We have a wealth of information available on PDA within our academy. We at sunshine are also hosting a whole day of PDA with tickets available now. Find us on Facebook for more information. To book this event specifically head to the events section on our page. Tickets are down to the last few!
Hi Stacey, saw your comment from 4months ago. I am learning about PDA, now in fifties but what l recently learnt at the Autism Show was co-morbidities instead of depression. Is dyslexia a co-morbid trait as you put it? Some co-existing traits in neuro-divergencies..
Sorry for the late reply - dyslexia can absolutely be a comorbidity of autism, and all other neurodivergence - we like to think of it as ice cream sundaes, with different combinations of toppings. :D Food analogies are a great way to illustrate this!
How do you teach children to turn off their offended button? Our child who presents as having PDA has four close-in-age siblings (6,7,9&10 years old). He knows their buttons and they react as a typical child would.
Hi! I'm not sure we can teach them to do that as children, it's about lowering their anxiety and to do that we need to help their internal 'risk assessor' feel calm and content. We have lots of resources around calming the nervous system, supporting children with PDA and lots more on the Sunshine Academy that you'll really enjoy watching and I'm sure you'll find interesting! Sign up to view them here: www.sunshine-support.org/academy
My daughter has ASD and I feel she has this, PDA. She never gives excuses verbally but just has behaviors when she is asked to do things she doesn’t want to do. She is pretty social. Is it possible to have both ASD and PDA? My daughter is very manipulative! She’s 7, and has always been like that. Who can diagnose her with this? Or see her to evaluate her?
For help and support on this please go to www.sunshine-support.org or find us on Facebook. For the full webinar which will help answer some of your questions visit www.sunshine-support.org/academy.
I'm pretty confident that my youngest child has PDA (I just started looking into getting a diagnosis). However, choices just DO NOT work for him. If I ask him for instance, "Would you like to brush your teeth before or after your bath". His response would be "I don't want to brush my teeth at all. I'm too tired." No matter how many times you repeat the options, he will simply repeat his stance, over, and over again. Strongest willed child I have EVER met.
@@ExistenceUniversity We didn't get a notification that you'd replied, sorry! This made us chuckle! 😆 We hope you're well and living your best PDA life - we're making sure our content is as PDA accessible as possible! 💛
really don’t like the pathologizing of pda. “bizzare” and saying that were essentially problems “spend a day at these families homes and you’ll see”. pda is also internalized. and someone can have pda and no autism either
Hi! This is all expert-led information, in the UK PDA is a distinct presentation. We thank you for your views but assure you that the information within this video is NICE guideline supported in the UK. Your country may have different guidelines. We also are aware that Aspergers is no longer in the DSM, and the very good reasons why, but remember, there are still people out there who have the term on their medical record who many still use it for themselves which is their prerogative and not ableist. This video is also 4 years old. We are a majority neurodivergent crowd here at Sunshine Support but we also ensure that the information we air is formally and clinically supported. In the UK, PDA is classed as a presentation of autism, whether we or yourself actually agree with this or not. Times are changing and this definition is likely to evolve with time. We would also like to add that PDA can present differently amongst individuals, it isn't internalised for everybody.
Thanks for doing this interview and putting out for the world to see.
The audacity of some professionals to say PDA doesn't exists! My child very much exists, it's such a loaded statement.
What I hear is: " go away, don't come here and challenge my knowledge or skills, that makes me look bad".
guirigirl1 you’re welcome! Lots more coming up! Stay tuned!
My 4 year old boy has just begun school, and amidst many great struggles we have recently heard about PDA, and this seems to be the most fitting description for his behaviours and personality, It has been heart breaking to seem him struggle so much since starting school
If you'd like a chat, we're here to help you. We have plenty of help available on PDA.
PDA and being learning disabled absolutely can co-exist, one of my children being an example of this!
I see this is 2 years old,so I'm hoping your knowledge and experience of this has now progressed!
The research and development hasn’t changed on this. If a child has a learning difficulty and presents with demand avoidance then it may not be PDA but one of the other several demand avoidances. In cases like this we would recommend a PDA specialist assessing to unpick it all 💛💛💛
My daughter is 40 with a diagnosis at 13 months of developmentally delayed. At 16 75% of autistic traits. Moving forward to 40 I think her autistic traits have increased. Her developmental delay is classed as severe intellectual disability and I think a definite PDA.
Thanks for your comment, we appreciate your point of view and sharing your experience. We are working with the research that has been published and the guidance for identifying the PDA profile, and this video is still in line with that. Libby is one of the key people in the PDA Professionals network for the UK, and so if anything changes we will re-interview her and we can discuss and, of course, put your questions to her.
@SunshineSupportUK this is not quite right. A year or so ago, the pda society updated their website, and they/libby Hill did change some of the wording about how pda can also co occur alongside people with learning disabilities.
Thanks Lucy - our comment previously was over a year ago so it makes sense that things have evolved since then! We'll continue uploading PDA content (we work with Libby Hill quite often) which should reflect the changes and more up to date info! :)
I wish I'd seen this 4 years ago! Glad I didn't see it tomorrow! I am an adult who's world just changed.
So relatable, as a company mostly made up of late diagnosed ND adults - you're not alone, we're here for you and you are SEEN!
@@SunshineSupportUK Thank-you. It's hard to overstate the value of the catharsis I get from the genuine lapse in my repressive loneliness, thanks to our community. My defence mechanisms against positivity are strong, but I'm working on it ❤️
You've got this!!!!!! I hope you're doing well.
I left home at 16 because I just couldn't stand the dictatorial way my mum dealt with me. It was her way or the highway, threats if I didn't do as I was told. It was constant arguments until I just couldn't bear it anymore and I left. But I have gone through life feeling like I fight everything everyday. Life just seems so heavy. Now I am 51 and a life coach I started with asked me if I had autism. I hadn't really heard anything about it before but she recommended a book which I read and page by page the penny started dropping. Today I saw a video about PDA and that penny dropped again as I have always felt combative and fought against any restraint I have felt.
Thank you for sharing, I hope you find these 'light bulb' moments liberating, and that you have a support network to navigate through your learning.
Yours, sounds like my life story, I'm 56. Was diagnosed with adhd 12 yrs ago but the last two years learnt more by going to The Autism Show, NEC. My light bulb moment!! Fore-armed myself
@@Domdeone1 This is very relatable to many of us at Sunshine Support!
@@SunshineSupportUK lnteresting Sunshine Support
My child will say something offensive and it is not for manipulation but to equalize their status and autonomy. For whatever reason they feel a power struggle this helps them to equalize that feeling. I politely respond with a non rattled “is that appropriate ?” Or “do we feel better?”
This is fabulous - we do the same!! Whereas our parents/grandparents in the same situation would likely have shouted!
I have 2 adult children with ASD and PDA tendencies but one has learning difficulties and the other doesn’t. The boy also has a genetic disorder and more sensory issues and this fuels his PDA of daily tasks like eating and hygiene and he does not mask so shows in all settings but the girl masks outside the home and this has been the barrier to getting her a diagnosis and now in adult she has finally reached rock bottom and unmasked more which will hopefully help her get a diagnosis. It is so hard as until the individual lets others and professionals see their true self, professionals do not believe parents and the whole family end up in distress and trauma. Because she would not attend appointments but went to school (1 year school refusal) the system refused to diagnose. We are just attempting to re enter the system in adult services but waiting list about 2 years and daughter now has anorexia and severe anxiety and low mood and I’m her only support, while also caring for my son full time at home and working full time from home. PDA is very real and so obvious once you understand its complex presentation but professionals are years behind where we live and still think you can’t be autistic if you have imagination but its social imagination that is lacking not general imagination! 😳
Oh gosh what a difficult journey you have been on.
We really do want to see changes in this area so children thrive and don't have such awful lasting trauma.
We are here if you need us and run regular free cuppa & chats if you would like to join us.
/Kat
PDA does go along side people with learning disabilities. I think you are doing the parents and the person an injustice.
Lucy Smith Hi Lucy, we would be keen to have you discuss this with Libby so we can provide some clarity. If you’re not booked onto our upcoming PDA webinar already, please let us know and we will extend an offer of a free place so we can explain this in further detail and you can ask Libby questions directly. She has so much knowledge on this presentation and is so keen to share it 💜 if you’d like us to provide some clarity do email us through our website and we will sort out your complimentary ticket 💜
Totally agree. This statement is totally invalidating and unhelpful to us parents who are experiencing even greater complexity of meeting needs yet PDA strategies clearly make sense and work. Diagnostic overshadowing is still rife and dangerous
Apologies for the late reply, TH-cam isn't great for showing us replies on threads of comments. Definitely get in touch with Libby Hill as she's so very articulate on the topic. PDA strategies often work well on neurodivergent folk whether they have PDA or not, because so many of us ND's have high levels of various types of demand avoidance as part of our presentation, but aren't explicitly PDA - I hope this is worded succinctly! But we do absolutely agree that PDA is far more complex and nuanced than the world has ever realised. This video is four years old and since it was published, guidance and literature on this is likely to have further evolved. We'll certainly pose the question to Libby and other PDA speakers we have connections with as it is very important to properly address, and we don't ever want anyone to be invalidated - the total opposite of what we set out to achieve. We hope you're doing well! x
Thank you for this, it's such a wonderful, clear explanation. I am a huge fan of Libby Hill 😍 I wish she could meet my daughter as I'm sure she'd see what I see.
Watching this presentation, I’m wondering if PDA really explains a lot of the neurodivergent overlap between autism spectrum and ADHD diagnoses (“audhd” I’ve seen in a few internet spaces). If it eventually comes to be distinct from those two diagnoses in the DSM for that reason, it would be really interesting!
Yes! There is research scheduled into this, I'm sure as it makes complete sense doesn't it?
What is learning difficulty defined as? My son is so bright with vocabulary and knows so many facts on war and the world he’s 9 but he won’t read or write could this not be the demand disorder ?
Thank you for your comment, it would be worthwhile discussing this with PDA specialists like Libby or the PDA Society.
kids who dont read or write….. pls hve them tested for dyslexia.
Absolutely. However, it can be tricky to get screening/testing done, so many parents meet a bizarre amount of resistance here. Thankfully we are able to signpost and support them!
I have PDA but I intentionally refuse to manipulate people because I hate being around manipulative people. I could But I refuse to !
That's really interesting. Thinking of it as an active choice brings is such a different way of looking at things. Thank you for sharing that with us.
Just to clarify with Libby. If she goes on to mencap the evidence is there!!! People diagnosed with learning disabilities also PDA
So people can have PDA and learning disabilities !!! unfortunately a lot of people with learning difficulties PDA have a really hard life because the training is not there 😞 a lots of staff and parents are very controlling in many ways and form towards people with learning disabilities.
We have had a look at the Mencap website and they don't mention an awful lot on PDA. The PDA Society will have the same sort of information as Libby as they all work together, they are all part of the PDA Professionals network who are actively researching PDA to develop a robust diagnostic tool and improved support and awareness. Much of what we know as professionals and families today about PDA is down to Libby and her colleagues.
For more information please do have a watch of our full PDA training videos on the Sunshine Academy - www.sunshine-support.org/academy
Does anyone happen to know anyone with PDA knowledge in New Zealand? Ive recently discovered myself this is who Ive always been. I havent managed to find anyone here so far. Just in the UK and the US.
We hear this quite a lot at the moment, it seems to be something that is only really talked about here. More awareness and research is needed I believe.
I can't seem to find anyone with information about PDA with co morbid learning disabilities like dyslexia. I would love to learn how to deal with these two issues together.
We have a wealth of information available on PDA within our academy. We at sunshine are also hosting a whole day of PDA with tickets available now. Find us on Facebook for more information. To book this event specifically head to the events section on our page. Tickets are down to the last few!
Hi Stacey, saw your comment from 4months ago. I am learning about PDA, now in fifties but what l recently learnt at the Autism Show was co-morbidities instead of depression. Is dyslexia a co-morbid trait as you put it? Some co-existing traits in neuro-divergencies..
Sorry for the late reply - dyslexia can absolutely be a comorbidity of autism, and all other neurodivergence - we like to think of it as ice cream sundaes, with different combinations of toppings. :D Food analogies are a great way to illustrate this!
How do you teach children to turn off their offended button? Our child who presents as having PDA has four close-in-age siblings (6,7,9&10 years old). He knows their buttons and they react as a typical child would.
Hi! I'm not sure we can teach them to do that as children, it's about lowering their anxiety and to do that we need to help their internal 'risk assessor' feel calm and content.
We have lots of resources around calming the nervous system, supporting children with PDA and lots more on the Sunshine Academy that you'll really enjoy watching and I'm sure you'll find interesting! Sign up to view them here: www.sunshine-support.org/academy
My daughter has ASD and I feel she has this, PDA. She never gives excuses verbally but just has behaviors when she is asked to do things she doesn’t want to do. She is pretty social. Is it possible to have both ASD and PDA? My daughter is very manipulative! She’s 7, and has always been like that. Who can diagnose her with this? Or see her to evaluate her?
For help and support on this please go to www.sunshine-support.org or find us on Facebook. For the full webinar which will help answer some of your questions visit www.sunshine-support.org/academy.
I'm pretty confident that my youngest child has PDA (I just started looking into getting a diagnosis). However, choices just DO NOT work for him. If I ask him for instance, "Would you like to brush your teeth before or after your bath". His response would be "I don't want to brush my teeth at all. I'm too tired." No matter how many times you repeat the options, he will simply repeat his stance, over, and over again. Strongest willed child I have EVER met.
Try rephrasing the sentence… we have lots of advice about this on our PDA courses on Sunshine Academy here: www.sunshine-support.org/academy
I have PDA so bad that when she said "Let's talk about" I switched off... Don't tell me what to talk about lol
Sigh...
We didn't consider that demand lol we will moving forward!
@@SunshineSupportUK don't worry I quickly came back lol
@@ExistenceUniversity We didn't get a notification that you'd replied, sorry! This made us chuckle! 😆 We hope you're well and living your best PDA life - we're making sure our content is as PDA accessible as possible! 💛
really don’t like the pathologizing of pda. “bizzare” and saying that were essentially problems “spend a day at these families homes and you’ll see”. pda is also internalized. and someone can have pda and no autism either
Aspergers is not a diagnosis or term that is used. it is ableist
Hi! This is all expert-led information, in the UK PDA is a distinct presentation. We thank you for your views but assure you that the information within this video is NICE guideline supported in the UK. Your country may have different guidelines. We also are aware that Aspergers is no longer in the DSM, and the very good reasons why, but remember, there are still people out there who have the term on their medical record who many still use it for themselves which is their prerogative and not ableist. This video is also 4 years old. We are a majority neurodivergent crowd here at Sunshine Support but we also ensure that the information we air is formally and clinically supported. In the UK, PDA is classed as a presentation of autism, whether we or yourself actually agree with this or not. Times are changing and this definition is likely to evolve with time. We would also like to add that PDA can present differently amongst individuals, it isn't internalised for everybody.