Pathological Demand Avoidance Syndrome - My Daughter is Not Naughty

by Jane Alison Sherwin

Jane Alison Sherwin's honest and uplifting account provides insight into the challenges of bringing up a child with Pathological Demand Avoidance (PDA). After years of misdiagnosis, Jane's daughter, Mollie, was diagnosed with PDA at the age of seven, and we follow her experiences pre and post diagnosis to age 10 as she attends school, interacts with the outside world and approaches adolescence. Throughout, Jane provides commentary on her daughter's behaviour and the impact it has on her family, explaining the 'why' of PDA traits, including the need for control, meltdowns, obsessive behaviour and sensory issues. She reveals the strategies that have worked for Mollie and provides essential advice and information on obtaining a diagnosis and raising awareness of PDA. The book also includes an interview with Mollie. Full of advice and support, and with a focus on understanding the child and how he or she sees the world, this book will be of immeasurable value to the parents and families of children with PDA as well as the professionals working with them, particularly teachers and teaching assistants, SEN co-ordinators, psychologists, outreach workers and social workers.

Genres: Nonfiction, Parenting, Autistic Spectrum Disorder, Mental Health, Psychology, Health, Education

328 pages, Paperback

First published January 21, 2015

Reviews

[Anne Clay · Rating 5 out of 5]

Loved this book! The author explained things well and used many accounts of the struggles of raising s child with PDA along with the effects on the family. The book was full of great advice and led the reader along a very realistic account from a moms point of view of the difficulty of raising a daughter with this issue. As of the writing she had only gotten her daughter to the age of 10. I would like a sequel.

[Jennifer · Rating 4 out of 5]

Once you have read Jane Sherwin's account of her life with her daughter Mollie, you first have to take your hat off to her for managing to write a book at all so soon after things got a teeny bit more settled for her. That she has written a good book is amazing. She has woven authoritative information about Pathological Demand Avoidance Syndrome effectively with her own family's experiences. Her description of how we got where we are now is better than almost anything I have read (whilst leaving out the less savoury political issues of ego clashes between influential people who should be ashamed of themselves if only they weren't dead and the charmless past behaviour of the now on-board National Autistic Society)

Her story chimes with so many others who have had to change their paradigm for parenting. Supernanny should be made to read this whilst sitting on The Naughty Step. There are many families where the unaccountable have made well-intentioned parents and their children's lives much more difficult than they have to be and delayed accurate identification and more appropriate strategies. Some aspects of Mollie's behaviour are at the extreme ( not uncommon) end of the spectrum - the need for constant attention and to control the behaviour of family and friends, especially those the subject of her current obsession, to what for the victim is an abusive level. I felt the book wobbled a bit talking about a spectrum... I disagree that it is simply a matter of severe to mild and her description of the mild end of the spectrum is, I suspect, mythical rather than actual, other than what can be achieved with the right understanding, environment and support.

I particularly liked the section on the impact on her own mental health - the impact of having to fight for everything at the same time as dealing with very significant challenges and how long term the impact has been. I did think a few things were mentioned, seemed potentially very relevant but left unexplored compared with other issues - her own school history (ironically she is much more positive about the schools her daughter attended even though all placements broke down), the experience of having to have Mollie taken briefly into care. I almost wonder if there's a typo where she suggests that oversexualised behaviour isn't mentioned in the literature as a feature of PDA. But it is a very frank, open book and the ungushing but real appreciation she has for her daughter not solely despite but sometimes because of the way she is shines through, especially because she gives Mollie herself a voice in the book. She also gives credit to others who have been vital in supporting her and Mollie and made the difference between near disaster (that looks pretty much like disaster) and irretrievable disaster.

The book is limited because Mollie was still so young when it was written although it does try to address what little is known of what might happen next. The pity is that the best writers on this subject are spread in a fragmented way across a plethora of forums, blogs and social media, there's far too little communal engagement with families and clinicians and researchers. (Although some great stuff has come out since this book was published)

[Carly B · Rating 2 out of 5]

Depressing but IYKYK. Would have liked some shreds of hope or feasible tactics.

[Heidi · Rating 4 out of 5]

This was really informative and gave me some ideas to use with my PDA son.

[Jo · Rating 4 out of 5]

The subtitle ‘My Daughter Is Not Naughty’ defines what I believe to be the real story behind Jane Alison Sherwin’s informative book, ‘Pathological Demand Avoidance Syndrome: My Daughter Is Not Naughty.’

Any parents of children with behavioural issues that need special attention will recognise Jane’s story; the challenge of the journey from cry for help to eventual diagnosis, the battle for the correct type of help for their specific problem, the desperation of loving this child so very much that you tolerate behaviours you never dreamed of experiencing because you know it’s just not their fault.

‘Am I a bad parent?’ is the torment behind the parents’ early years with their child, as is the need to explain to tutting onlookers just why ‘my daughter (or son) is not naughty’ and educate them as to the reasons why.

Jane Alison Sherwin’s book is a very real and honest account of her journey through Mollie’s early years to diagnosis, her final withdrawal from the state school system and how, with her supportive family network, the mum (and family) learned to adjust her expectations of a parent/child relationship to meet the very complex demands of Mollie’s syndrome.

Pathological Demand Avoidance Syndrome, or PDA as it is known, is a relatively new diagnosis to the group known as Autistic Spectrum Disorders with ‘The defining diagnostic criteria for PDA … an anxiety driven need to avoid the demands of everyday life and to be in control at all times.’ (Kindle Paperwhite Loc977/3098). As such, very little is known about it in the wider field and books like these go a long way towards helping people understand that apparently ‘naughty’ children isn’t always about the parenting. Unfortunately it will take a while for the knowledge to seep out into a more general field and it is likely to be those with personal experience who will pick up this book initially, but without these books by parents brave enough to tell their story, then maybe it would take even longer.

A very interesting and informative read. Thank you Jane Alison Sherwin.

I give this book 3 and a half stars.

[Sarah Hyatt · Rating 1 out of 5]

I was so convinced I would find this book insightful that I actually bought it on Amazon as opposed to even looking at the library. And now I'm trying to figure out how to get a refund on a Kindle book, so that's sort of like a review in and of itself...?

I didn't find this book to provide information about PDA in a way that was unique or more coherant than many websites dedicated to the topic. With a book, I'd hoped for a more in-depth, personal account, but instead it became more of a dry play-by-play of the daughter's behavior. Without the help of the reading and research I'd done before reading the book, it likely would have been even drier. It just went on and on and on without much reflection or application.

I never really found the uplifting part, because it just continued on listing how awful everything was. There are a few attempts toward empathizing with the daughter, but for a book titled "My Daughter Is Not Naughty" I felt like all I did was read about her behavior. The few insightful moments were scattered among pages of endless details about her negative behavior, and they were very few indeed. The most promising part was an "interview" with Mollie, the daughter, who was 10 by the end of this book and likely old enough to offer some reflection, but her "interview" was more like:

Q: What makes you do [x] thing?
A: IDK? I just do.

So... not a lot that can really be extracted from that.

This book would have benefitted SO MUCH from a ruthless editor, and also from maybe being spewed out in a private journal first. I get the frustration of often incompetent professionals, and the aggravation of having a whole set of credentials and knowledge that is overlooked, but the way it came across in this book didn't really set off my "hey, I know that feel!" reactions, it just perturbed me more.

This book just left me PERTURBED, and with no real helpful information.

[Charmaine · Rating 5 out of 5]

I feel like I could have written this myself, page after page I cried... mollie is a carbon copy of my almost 9 year old daughter. The daily struggles we have lived through for years. School refusal. Severe anxiety.

If you want to know more about PDA this is the book for you.

I want to hug mollies mum and thank her, I finally feel a little bit less alone on this journey.

[TheAuDHDTeacher · Rating 5 out of 5]

Amazing book. Highlights the struggles faced by an autistic individual with a PDA profile as well as the impact on the family and the lack of support available. Very easy to sympathise with the whole family. Very well written too. A must read for any parent of an autistic/ PDA child as well as practitioners/ professionals who work with children. This book clearly highlights just how much of an impact anxiety has upon behaviour.

[Blair Peterson · Rating 5 out of 5]

As a parent of a PDAer I wish that I had purchased this book so much earlier. It was so informative and so comprehensive. Sherwin wrote a book that was personal and there was clinical information to back up and support the ideas. I am so impressed by the research that she did 7 years back when even less was known about PDA. This is a must read. Since my daughter is a teenager I hope that Sherwin will write a sequel so that I can learn more about Mollie's progress.

[Gypsy · Rating 3 out of 5]

This book was decent, though I think I would have gotten more out of it when I first began learning about PDA. It's written by a mom who is raising a PDA daughter and she has some pretty good insights into what her daughter may be thinking of feeling. She misses the nervous system piece and I think that's really important to understand. Overall, worth the read but I'd recommend it more to people who have just realized that they're child may be PDA.

[Tara Neale · Rating 1 out of 5]

A bleak and stilted view of the gift of a child which views the world in a clearer manner than much of society. A selfish mother's egocentric mourning for a child that she was never promised. I sincerely hope her precious daughter never reads this one.

[Kimberly Pendleton · Rating 4 out of 5]

Ideal if you want an approachable way to learn more about PDA from a parenting perspective. Lots of personal stories to help with your own journey.

[Danica Holdaway · Rating 2 out of 5]

Interesting and clearly a vital book for some but the format was painfully inefficient

[Stacey Kimmel · Rating 4 out of 5]

This book has given me a lot to think about and has me wanting to learn more.

[Cathy · Rating 3 out of 5]

Look while it’s lovely reading about someone who has similar experiences - I found the format hard- and it was more like a diary and I wanted more helpful advice and strategies

[Sharon Gardner · Rating 4 out of 5]

A personal account of a family's difficulty in trying to support their daughter and help her to get an accurate diagnosis. I had not heard of PDA until recently, and this book provides lots of useful information and strategies for people in similar situations.

[Lara · Rating 4 out of 5]

Well written, very informative, not trying to get sympathy genuinely wants to help others, uplifting. No repetitive text

[CL · Rating 3 out of 5]

very interesting book although I felt that it wasn't written very well