Pathological Demand Avoidance Syndrome was a term coined in the 1980’s by Professor Elizabeth Newson to describe a group of children that presented with a unique cluster of symptoms.
These children were extremely complex and would often remind the referring clinician of a child with Asperger’s Syndrome, but something just didn’t quite fit, due to the atypical presentation that these children displayed.
Most notable was that these children appeared to have better communication skills, social understanding and imaginative play than you would typically expect to see in a child with ASD. However, it was noted that that these skills appeared to be at a surface level only and lacking in depth.
They also all shared what would become the over-riding diagnostic feature for PDA ‘an obsessive avoidance of everyday demands’
The National Autistic Society provide a useful factsheet about PDA.
The PDA Society provide information, support and training for parents, carers, teachers and individuals with PDA.
Living with PDA is extremely challenging and frustrating for many parents due to the extreme complexity of this condition. This is often further compounded by a lack of awareness, understanding or acceptance from professionals, family and friends alike.
I am the parent of a child diagnosed with PDA and I, like you, have experienced all of the above and continue to face many battles on a daily basis in order to secure the correct support for my child.
I hope that this blog may offer guidance, for parents of children with PDA, in order to navigate the many winding roads that they may face both at home and in their dealings with professionals.
Please note that I am not a professional and so this blog is based on my personal experiences and my own research. Where possible any information or advice shared is linked to an official source.
Any parenting tips or strategies are based on my own experiences. Therefore they may not be suitable or practical for all families and individuals with PDA. They are merely suggestions to give understanding and guidance. Ultimately each family living with PDA will hopefully fine tune and adapt any suggestions in line with their own unique family situation and child.
N.B. If there are any links that appear to be broken or not working then please do inform me in the comments box at the end of each post.
Thanks for your informative website. My son, now aged 27, has visited this weekend and informs me that he believes he has PDA. I’d like to email you direct so that any comments I make aren’t on public view, is that possible? Kind regards, Heather
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Hi Heather, yes if you would like to email me then you can reach me at shiggs55@hotmail.com
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Thanks, have responded by email.
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I have recently discovered information on PDA and this describes my 18 year old autistic son. I am saddened to see so little support in the USA. Are there any organizations here that are shedding light on PDA?
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My apologies for the late reply and yes it is indeed sad that there is so little support or awareness among professionals in the USA. There is a parent support group for the USA which can be found here https://www.facebook.com/groups/pdausa/ and there is a charity that has been set up by a parent of a child with PDA http://www.pdamatters.org/what-is-pda/ The following post from my sister site may also be of interest re how it may be possible to approach professionals in the USA. In the UK the growing awareness is very parent driven and so it may be possible for parents to be a very strong driving force in the USA. Hopefully, at some point, the professionals in the USA will begin to catch up with the many parents who already recognise that this profile is the most suitable fit for their child https://pdaguidance.wordpress.com/category/do-you-live-outside-of-the-uk/
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Hi Jane a member of my Facebook group suggested to contact yourself. We would be very grateful if you could support our government petition for health care professionals to recognise and understand PDA, we have so far over 4000 signatures many thanks Maria smith xx
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Hi Maria, my sincere apologies for the late reply to your comment. Life has been extremely hectic just lately with various PDA related projects on the hop which has meant that my blog has been somewhat neglected. I think that I have signed your petition, but as soon as I get 5 mins I will also do a post on my blog. This is likely to be next week if that is ok?
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My daughter was diagnosed bipolar and anxiety since 10, I have always believed aspergers, although I am not a professional either, just a mom who researches everything to help her child. Now at 17 I have come across PDA. I presented it to her counselor, she is in agreement. I will speak with her psychiatrist on Monday. Now I am researching everything I can find on PDA. What I am unable to find is any suggestions to how to handle these children. Like what kind of therapies or even just how to help her live. Any suggestions, or am I in search of something that just does not exist. Help please.
Thank you!
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Hi Mickey, I am not currently aware of any specific therapies that are helpful due to the fact that our children’s demand avoidance can often prohibit them from actually being able to engage in any type of therapy. However, it can be possible to develop a framework of strategies to use in the home and to then expand on in order to include more and more situations. For parents it can often be about reading as much as possible about PDA so that we can then develop the most suitable framework of strategies for our child. Many strategies and suggestions can often be geared towards young children but these can be adapted for older children and even for adults. The following link should help you to begin this process by signposting you to the most relevant information available on the internet. It may also be useful to sign up to some PDA parenting courses / workshops in order to meet up with other parents. Or perhaps one that may be more geared towards adults given your daughter’s age. http://www.help4psychology.co.uk/managingchildrenoradultswithautismorpda.html and https://pdaguidance.wordpress.com/category/home/beginning-your-journey-with-pda/
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Wow I am blown away by this site. firstly I am 100% convinced that my daughter has PDA, it fits her behavior completely. Secondly the help on how to get a diagnosis is possibly going to be very helpful. I went to GP but they said it’s impossible to make the referral. I am working through the list of what to do next in that section now. Staffordshire NHS is a real mess. Just wanted to thank you for this information.
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I am so pleased that you are finding the site helpful. To my knowledge Staffordshire NHS do not currently assess or diagnose PDA. Therefore, you would need to pursue funding for an out of area referral and follow this up with an appeal against the decision if your request is turned down. Some parents have been successful via this route but others have hit brick walls and so it is worth preparing yourself for having to proceed through the whole complaints procedure and so on. You may find this local support group helpful to join if you are not a member already https://www.facebook.com/groups/1098430363540888/
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Looking, without much luck, for adult PDA information.
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I do apologise for the lack of adult information. Currently, there is little information regarding adults with PDA that is available to share, and my own personal experiences are related to a child of 13 years old only. However, many of the strategies that are appropriate for children remain the same for adults but would need adapting inline with maturing years.
Further information
The PDA Society have an enquiry line that you can contact for information about adults with PDA PDA Society Enquiry Line
The PDA Society are also currently producing a series of adult case studies, these will be added to in due course adult case studies
There are several blogs written by individuals with PDA which can be extremely helpful and informative blogs a personal favourite of mine is Riko’s Blog – PDA and more
Finally, there is also a couple of facebook PDA adult support groups Adult PDA Support Group and Parents and Carers of Young Adults with PDA
I hope this is helpful
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Thank you! This is helpful. Regards, As
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Hi, my son is 13 years old, he has an ASD diagnosis from the age of 7. After watching a programme on TV, the girls’ behaviour matched my son completely with PDA, with the addition that my son is selective mute. We have a social worker that doesn’t believe in PDA, we live in Newport, South Wales & we’ve been told by a Psychologist that they don’t diagnose PDA here. We’re having some struggles with my son in relation to education, some days he’ll go, but others we have complete refusal & our social worker is looking at us. We’re at a loss as to where to go. I’d love him to be diagnosed. Also, I’m not on Facebook. I read your book, it was extremely enlightening & it’s unbelievable how similar their behaviours can be, a great read.
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Hi Karynn-Anne, I’m pleased that you found my book useful but I am sorry to hear about your current difficulties. You could try to request funding for an out of area assessment to have you son’s diagnosis refined to reflect PDA. Sometimes this approach can be successful but many requests may also be refused. It can be helpful to try to get your MP onboard with you. https://pdaguidance.wordpress.com/category/diagnosis/c-requesting-an-out-of-area-referral/ However, even when a child does have a PDA diagnosis it can still be a battle to get the correct support in place for education. If he is often school refusing you would need to collaborate with the school to see what support they can put in place or offer as an alternative to school attendance. This should be viewed as absence from school due to health issues and not as truancy https://pdaguidance.wordpress.com/category/education/d-school-refusal/ I believe that in Wales they are still operating the statement system of assessment and support. In England it has now transferred over to an EHCP. However, similar principals should still apply. If your son doesn’t yet have a statement it would be worth applying for a full assessment of needs with a view to supplying him with a statement of needs. If he does already have a statement then you would need to call an early review to have it amended to better reflect his needs. Even if he doesn’t have a diagnosis of PDA, that shouldn’t matter because his statement should reflect his individual needs and the most appropriate strategies. This should be needs led and not diagnosis led. There is loads of info on this section of my website including links to useful resources to share with schools https://pdaguidance.wordpress.com/category/education/ you may just need to adapt some of the info given that Wales still operate a statement system, but as I said before similar principals should still apply.
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Hi Jane
I have just found your website and it’s a breath of fresh air. I, like Karynn-Anne, live in Wales where they do not seem to recognise PDA. I have know for years that my little girl is different from other children but thought she was just hyperactive. She is 8 years old and her behaviour is becoming ever more challenging. She has not been diagnosed with ASD or PDA but I know she is PDA as it is the only thing that fits. I went privately to see a occupational therapist and a behaviour specialist and they both confirmed she was on the autistic spectrum and is a sensory seeker. The school educational psychologist was in the first instance extremely unhelpful, blaming my parenting skills and being a single mum seemed to compound this. After she attended a seminar by Phil Christie she now believes my daughter to be PDA. We are on a waiting list of 2 years to see a panel, the paediatrician was very dismissive and I know I have a huge battle on my hands to get her diagnosed with PDA. Your website is so helpful and really lifts ones spirits, thank you. It would be great if there was a PDA support group in my area but I have yet to find one. I find that professional help in my area is non-existent. I work closely with the school to continually find ways to help my daughter learn. There are many behaviours I am faced with where I just have no idea how to deal with them and I am sure like many parents, I reach the end of my tether and react in completely the wrong way. My daughter see’s her father every other Saturday (his choice to do no more), I find that when she comes back I have hell for a week, she will start hitting me more and demand avoid more. Rewards work well with her and on a good day she will even decide on a reward system herself i.e if she puts her shoes on for five days she will receive a reward. It is an exhausting battle but she is such a sweet, loving, full of energy little girl and we have so much fun when she is on good form. Thanks again for the website, I will be using all the information to get help and diagnosis.
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Thank you for your comments Dawne and I hope that you do manage to navigate the complex diagnostic journey. The recent webinars by the PDA Society may be helpful for you to have a look at also http://www.pdasociety.org.uk/blog/2017/03/webinar-on-pda
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Hi Jane
Is there an up to date link to the following that you used to have on your blog?
http://web.archive.org/web/20150930070610/https://understandingpda.com/tag/dsm-5/
It is so useful for showing professionals when seeking an asd diagnosis. It came up in the Australian Facebook group discussion but we couldn’t find a current link.
Thanks
Anne Rhodes
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Hi Anne
I’m afraid that I closed my understanding PDA blog down sometime ago, due to Mollie wanting to have some privacy online. The link that you provided shows that, somehow, one of the articles that I wrote has been stored somewhere on the net. Could you print that off as an alternative? I am extremely busy at the moment with PDA related stuff in other areas but when I get the time I can try to produce an improved version of my previous efforts on the PDA guidance website.
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Hello,
I recently stumbled across information about PDA while looking for advice of what to do about my son running from school. My 8 year old son has been diagnosed as extreme bipolar, adha,odd, etc. He spent 9 months in a mental facility and now is on antipsychotic medicines that do not seem to be helping. I live in SC and I want to get my son checked out to see if he has PDA as all of the information I’ve read about it lines up with everything that is my son. How can I go about getting an assessment for him? Is there a certain type of medical professional that needs to do this? Thank you in advance for your advice and help.
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Hi Brandi, my sincere apologies for the late reply to your enquiry. Life has been rather hectic lately with various PDA related projects and my blog has been sadly neglected. I’m so sorry to hear about the difficulties you are experiencing with your son due to the extreme / complex nature of his presentation. As other interventions and medications have not yielded any improvements I can totally understand the importance of exploring the PDA profile of ASD as the differential interventions could make a huge difference if PDA is the underlying cause for his difficulties. The PDA Society have produced a step by step guide to navigating the diagnostic pathway, inclusive of links to independent services who do have the experience to identify the PDA profile of ASD https://www.pdasociety.org.uk/families/diagnosing-pda. It may also be worth sharing some information about PDA with the professionals currently involved in supporting him and beginning to implement PDA strategies to see if they are beneficial. Many parents also find it extremely helpful to join a support group and to attend PDA parenting courses for further support and advice. I have included some links below which may be helpful.
https://www.pdasociety.org.uk/resources/awareness-matters-booklet
https://www.pdasociety.org.uk/families/strategies
https://www.pdasociety.org.uk/families/training-and-conferences
https://www.pdasociety.org.uk/resources/blogsandfacebookgroups
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