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PDA in the Family: Life After the Lightbulb Moment
In this honest and open account of life with her PDA daughter, Sasha, Steph Curtis reveals the everyday struggles and explores the milestones of raising a child diagnosed with Pathological Demand Avoidance. This book guides you through the Curtis family's 'lightbulb moment' of recognising Sasha's PDA profile following her autism diagnosis at the age of two, their experiences of various education settings and attempts to access support, everyday life at home and relationships with family and friends.
Bursting with practical takeaways and advice from creating personal profiles for your child to help them transition through schools and other settings to the reasonable adjustments you can actually ask for to help make life easier for your PDA child.
With unique insights from Sasha's father, sister, and Sasha herself, this book offers insider knowledge, understanding and advice from one family to another. It would also be helpful for those in education, healthcare or other settings to gain a better understanding of Pathological Demand Avoidance.
Bursting with practical takeaways and advice from creating personal profiles for your child to help them transition through schools and other settings to the reasonable adjustments you can actually ask for to help make life easier for your PDA child.
With unique insights from Sasha's father, sister, and Sasha herself, this book offers insider knowledge, understanding and advice from one family to another. It would also be helpful for those in education, healthcare or other settings to gain a better understanding of Pathological Demand Avoidance.
240 pages, Paperback
Published January 18, 2024
15 people are currently reading
130 people want to read
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Displaying 1 - 16 of 16 reviews
June 13, 2024
I just want to be clear that I don't rate books for other people, but for myself, as I usually can't remember books after a certain time goes by so it's more of a catalogue of books I have read and if I liked them or got anything out of them rather than a signal for others to read/not read something.
I personally did not get much out of this book. I did not learn anything or gain new insight or anything else.
Also, I think that perhaps this book isn't written in the best way that it could be.
Who is the target audience? I'm thinking that the author mostly wishes to reach out to those brand new to all of this and pretty much say "I know how it feels".
This book might indeed be of some comfort to parents (especially neurotypical parents) who are first facing all these new terms and ways of thinking, although I think even for this cohort there may be a disconnect. The reason for this being that there were few specific examples or other ways of drawing in the reader and connecting.
It just reads as a long, yet incredibly vague biography of a woman who has struggled and tried her best. You can definitely get that from her - she has tried her damnedest - and she clearly wants to help others in any way she can. Also it's great to see so many people being accepting of neurodiversities now, rather than the old view of broken neurotypicals.
I do think that this author has knowledge and experiences that could be of benefit, but perhaps needs someone to assist in crafting and packaging those experiences into a more engaging read.
I think much less of "this happened and then that happened" was needed. We, the reader, don't benefit from the logistics of this meeting with this school and that meeting with that school for example. You can get your main points across without delving too much into the specific details. Summaries with well chosen examples probably would have helped a lot.
(On a personal note I am exactly the same - I find it really hard to know what to say and what to leave out when I need to convey a point). So this is why I think having another person who is good at that sort of thing going through it, pointing out where to summarise, where to expand, where to add an anecdote etc... would be hugely beneficial.
Additionally, it could do with more "advice to parents". I understand, and agree with, the reticence to give too much advice on particular issues, as kids are all different, as are parental values and environmental factors etc.. however the author did give some advice here and there that is universal, such as keeping notes that could come in useful for when you see professionals. I think these titbits could have been expanded on a bit, either in terms of how she did it, with examples, or more broad examples others have suggested. I also think that this author probably has loads of other universal or almost universal advice she could share. Maybe she had her reasons though.
I personally did not get much out of this book. I did not learn anything or gain new insight or anything else.
Also, I think that perhaps this book isn't written in the best way that it could be.
Who is the target audience? I'm thinking that the author mostly wishes to reach out to those brand new to all of this and pretty much say "I know how it feels".
This book might indeed be of some comfort to parents (especially neurotypical parents) who are first facing all these new terms and ways of thinking, although I think even for this cohort there may be a disconnect. The reason for this being that there were few specific examples or other ways of drawing in the reader and connecting.
It just reads as a long, yet incredibly vague biography of a woman who has struggled and tried her best. You can definitely get that from her - she has tried her damnedest - and she clearly wants to help others in any way she can. Also it's great to see so many people being accepting of neurodiversities now, rather than the old view of broken neurotypicals.
I do think that this author has knowledge and experiences that could be of benefit, but perhaps needs someone to assist in crafting and packaging those experiences into a more engaging read.
I think much less of "this happened and then that happened" was needed. We, the reader, don't benefit from the logistics of this meeting with this school and that meeting with that school for example. You can get your main points across without delving too much into the specific details. Summaries with well chosen examples probably would have helped a lot.
(On a personal note I am exactly the same - I find it really hard to know what to say and what to leave out when I need to convey a point). So this is why I think having another person who is good at that sort of thing going through it, pointing out where to summarise, where to expand, where to add an anecdote etc... would be hugely beneficial.
Additionally, it could do with more "advice to parents". I understand, and agree with, the reticence to give too much advice on particular issues, as kids are all different, as are parental values and environmental factors etc.. however the author did give some advice here and there that is universal, such as keeping notes that could come in useful for when you see professionals. I think these titbits could have been expanded on a bit, either in terms of how she did it, with examples, or more broad examples others have suggested. I also think that this author probably has loads of other universal or almost universal advice she could share. Maybe she had her reasons though.
January 18, 2024
An interesting look into (one family’s experience of) Pathological Demand Avoidance, a type of autism. It’s informative but also speaks of the family’s personal experiences. Would be very useful for parents, especially those with a child with PDA. Although it’s clear a life with PDA is challenging, it’s refreshing to see it not spoken about as if having an autistic child is the end of the world as often happens with books about autism.
June 2, 2024
I’ve finally finished this after having to take a break half way through - some of the content really hit home for me and I had to pick back up when I was in a better head space.
I loved the openness shared by Steph and the honesty of how difficult parenting, and life, can be with a child with a Pathalogical Demand Avoidance (PDA) profile in the family. It is kind of reassuring to know that we are not alone in these daily challenges and I did get some relief from those ever-present thoughts of are we to blame, is she just naughty, are we imagining this…?
I’m going to re-read it and make some notes for our daughter’s upcoming Autism assessment as I think Steph words her daughter’s behaviours and anxieties so well, she could be describing our own experiences!
Overall a really positive read which left me feeling supported and my daughter’s needs recognised. Thank you for writing this 🧡 @stephstwogirls
I loved the openness shared by Steph and the honesty of how difficult parenting, and life, can be with a child with a Pathalogical Demand Avoidance (PDA) profile in the family. It is kind of reassuring to know that we are not alone in these daily challenges and I did get some relief from those ever-present thoughts of are we to blame, is she just naughty, are we imagining this…?
I’m going to re-read it and make some notes for our daughter’s upcoming Autism assessment as I think Steph words her daughter’s behaviours and anxieties so well, she could be describing our own experiences!
Overall a really positive read which left me feeling supported and my daughter’s needs recognised. Thank you for writing this 🧡 @stephstwogirls
November 20, 2024
I’m not sure I’ve ever felt so seen.
March 12, 2024
I am sure so many families will feel seen by this book and it provides invaluable insight into one family’s experience of PDA. I have learned a lot from Steph and Sasha.
February 13, 2024
I listened to the Audible version of this book, and I loved it. Steph is both informative and relatable, it’s lovely how often she stops to reiterate how brilliant her daughter is, despite the additional challenges.
It’s so wonderful to not feel alone, to hear how other people cope with the difficulties you face as a parent. Steph and Chris are wonderful parents and advocates.
Thank for this book, and all the resources you make available.
It’s so wonderful to not feel alone, to hear how other people cope with the difficulties you face as a parent. Steph and Chris are wonderful parents and advocates.
Thank for this book, and all the resources you make available.
January 30, 2024
Such a fantastic look into what life can look like if you live with a child with PDA.
It was so well written and a joy to listen to 💗
It was so well written and a joy to listen to 💗
February 17, 2025
This is a memoir of a mother of 2 daughters, one neurotypical (Tamsin), the other autistic (Sasha) with titular PDA (persistent/pathological demand avoidance) syndrome. There was also 1 chapter from the father's pov.
I found the description of their everyday life challenges due to the daughter's PDA enlightening and especially the last chapters talking about social interactions and possible solutions for parents / caretakers / teachers useful.
The concept that people with PDA are "not motivated by a system of rewards and punishments" feels relatable to me - I could never implement successfully methods in my life other people used like "reward yourself for an accomplishment", "set yourself a deadline", "use an accountability buddy" etc. In many cases I would either internally feel "this isn't important" and not do it, or the opposite "this is important and I'm falling behind / failing at it" which would make me completely shut down. I work better with coaxing than pressure, but I do realize I don't work "as well" as neurotypical people and the society won't give me a discount.
Sadly, the book doesn't really look into the mind of the PDAer, what do they think, feel, what motivates them. It's all about mom's struggles with the daughter, with the system (education, healthcare, etc.) and with not fitting into typical society's idea of a typical family, and very little about how the daughter actually feels. A few times when the subject was broached, there are quotes of the daughter saying she's unable to express her feelings and that was it. (Alexithymia happens among ND people where they either are disconnected from their feelings or unable to verbalize them, so there could be a grain of truth in this.)
I feel the middle was repetitive and mostly the author (mom) venting how the daughter leaves every event and social gathering after 10 minutes, how she meltdowns by rolling in a ball and screaming, and how some people don't understand it's a real condition and not the kid "throwing a tantrum and being naughty". At 60% I was so bored of the repetitive descriptions of what was frankly the same problem in a slightly different coat I skimmed to the later chapters which were more useful.
We get it, your daughter doesn't like social gatherings, loud noises and brushing teeth, and she likes music, McDonald's fries and playing on her ipad. Maybe these snippets made more sense when they were scattered blog posts, as the author claims to be a blogger, but consolidated it was extremely repetitive and moreover, not really useful.
The actual advice was contained in one, final chapter, and some also in bullet points after each chapter. Truly, so much of this book felt like filler to make it book-length instead of a pamphlet or a series of blog posts.
There's also no real conclusion because the daughter is still a teenager and still doesn't have her schooling situation resolved, which means there's no closure to this story. Not sure why publish this book now instead of waiting few years more, except to capitalize on the author's blog's momentum which might fade over time, or to cash grab on a half-made memoir.
Also, truly, I don't know how is it useful advice to let the kid have their way and always win in every game. I think one grain of truth is that the author worries her daughter will never be independent and with the portrayed situation she indeed won't be, because the world will not accommodate her as mom does.
I have a milder case of PDA / RSD (rejection sensitivity dysphoria) that often happens in neurodivergent people and I learned the hard way people don't care if they hurt my feelings, but will care a lot if I supposedly hurt theirs with any minor slight (for example telling them you won't show up to a social gathering - I'm not even saying about ghosting or leaving after 10 minutes, just telling them you won't come because you know you will have issues handling it).
Also I felt sorry for the neurotypical daughter, Tamsin, because as much as the author tried to convince us she gave quality time to Tamsin and tried the best for her daughters, it seemed Tamsin was either left neglected as the kid who causes no issue, or was forced to accommodate Sasha's moods and resign from things she deserved just not to cause trouble with Sasha.
It's a very common thing when parents have a child with special needs that the one without it is constantly made to go with less parental attention while being burdened with extra care duties for their sibling (scenes where Tamsin had to lose enjoyment from a game or leave a movie in the cinema to accommodate Sasha, or made play with younger children just so Sasha has company).
I get a parent wants to find a way to limit meltdowns, disturbance of family life and mental health crises of both themselves and the child and any other member of the family, and I hope Sasha manages to find a way to life her life the way she wants (which seems to be sitting at home and making youtube videos?), but overall I'm pessimistic about children like her being able to live their way on their terms - the world won't let them, and then, what will you do? I wish we were presented some coping strategies except "tell other people your child has a condition and hope they'll accommodate for it". Yes, we live in an ableist world and we have to find ways to navigate it instead of hoping it won't be this way.
Thank you Netgalley and Jessica Kingsley Publishers for the ARC.
EDIT: Decided to lower rating to 2 stars because in retrospect I'm still irritated with the mother's treatment of Tamsin and patting herself on the back for this double standard, this is horrible parenting advice. Also I was mislead by the publisher, because I applied for an ARC of a different book, Navigating PDA in America and was saddled with this one, somehow.
I found the description of their everyday life challenges due to the daughter's PDA enlightening and especially the last chapters talking about social interactions and possible solutions for parents / caretakers / teachers useful.
The concept that people with PDA are "not motivated by a system of rewards and punishments" feels relatable to me - I could never implement successfully methods in my life other people used like "reward yourself for an accomplishment", "set yourself a deadline", "use an accountability buddy" etc. In many cases I would either internally feel "this isn't important" and not do it, or the opposite "this is important and I'm falling behind / failing at it" which would make me completely shut down. I work better with coaxing than pressure, but I do realize I don't work "as well" as neurotypical people and the society won't give me a discount.
Sadly, the book doesn't really look into the mind of the PDAer, what do they think, feel, what motivates them. It's all about mom's struggles with the daughter, with the system (education, healthcare, etc.) and with not fitting into typical society's idea of a typical family, and very little about how the daughter actually feels. A few times when the subject was broached, there are quotes of the daughter saying she's unable to express her feelings and that was it. (Alexithymia happens among ND people where they either are disconnected from their feelings or unable to verbalize them, so there could be a grain of truth in this.)
I feel the middle was repetitive and mostly the author (mom) venting how the daughter leaves every event and social gathering after 10 minutes, how she meltdowns by rolling in a ball and screaming, and how some people don't understand it's a real condition and not the kid "throwing a tantrum and being naughty". At 60% I was so bored of the repetitive descriptions of what was frankly the same problem in a slightly different coat I skimmed to the later chapters which were more useful.
We get it, your daughter doesn't like social gatherings, loud noises and brushing teeth, and she likes music, McDonald's fries and playing on her ipad. Maybe these snippets made more sense when they were scattered blog posts, as the author claims to be a blogger, but consolidated it was extremely repetitive and moreover, not really useful.
The actual advice was contained in one, final chapter, and some also in bullet points after each chapter. Truly, so much of this book felt like filler to make it book-length instead of a pamphlet or a series of blog posts.
There's also no real conclusion because the daughter is still a teenager and still doesn't have her schooling situation resolved, which means there's no closure to this story. Not sure why publish this book now instead of waiting few years more, except to capitalize on the author's blog's momentum which might fade over time, or to cash grab on a half-made memoir.
Also, truly, I don't know how is it useful advice to let the kid have their way and always win in every game. I think one grain of truth is that the author worries her daughter will never be independent and with the portrayed situation she indeed won't be, because the world will not accommodate her as mom does.
I have a milder case of PDA / RSD (rejection sensitivity dysphoria) that often happens in neurodivergent people and I learned the hard way people don't care if they hurt my feelings, but will care a lot if I supposedly hurt theirs with any minor slight (for example telling them you won't show up to a social gathering - I'm not even saying about ghosting or leaving after 10 minutes, just telling them you won't come because you know you will have issues handling it).
Also I felt sorry for the neurotypical daughter, Tamsin, because as much as the author tried to convince us she gave quality time to Tamsin and tried the best for her daughters, it seemed Tamsin was either left neglected as the kid who causes no issue, or was forced to accommodate Sasha's moods and resign from things she deserved just not to cause trouble with Sasha.
It's a very common thing when parents have a child with special needs that the one without it is constantly made to go with less parental attention while being burdened with extra care duties for their sibling (scenes where Tamsin had to lose enjoyment from a game or leave a movie in the cinema to accommodate Sasha, or made play with younger children just so Sasha has company).
I get a parent wants to find a way to limit meltdowns, disturbance of family life and mental health crises of both themselves and the child and any other member of the family, and I hope Sasha manages to find a way to life her life the way she wants (which seems to be sitting at home and making youtube videos?), but overall I'm pessimistic about children like her being able to live their way on their terms - the world won't let them, and then, what will you do? I wish we were presented some coping strategies except "tell other people your child has a condition and hope they'll accommodate for it". Yes, we live in an ableist world and we have to find ways to navigate it instead of hoping it won't be this way.
Thank you Netgalley and Jessica Kingsley Publishers for the ARC.
EDIT: Decided to lower rating to 2 stars because in retrospect I'm still irritated with the mother's treatment of Tamsin and patting herself on the back for this double standard, this is horrible parenting advice. Also I was mislead by the publisher, because I applied for an ARC of a different book, Navigating PDA in America and was saddled with this one, somehow.
April 30, 2024
I really enjoyed reading PDA in the family - after the lightbulb moment. Steph's writing was really relatable and very funny. There were times I laughed, and times I cried. She hits the nail on the head in so many points and it really helped me understand our own journey more with our PDA'er.
I would definitely recommend this book to others going through their own journey of PDA or demand avoidance.
I would definitely recommend this book to others going through their own journey of PDA or demand avoidance.
March 8, 2024
A really good insight to parenting a child with PDA, I found myself nodding along in many places and reflecting on my experiences as a parent to autistic children. Steph gives some good advice too and I would definitely recommend to both parents and professionals working with autistic children, especially those with a PDA profile
March 30, 2024
An extremely useful, first-hand insight into the life of someone with PDA, and how it not only affects them but the entire family. It was thoughtfully written, giving both facts and feelings.
It’s helped me to gain a better understanding of PDA and ways in which to deal with people with it in a more effective, anxiety-reducing way
It’s helped me to gain a better understanding of PDA and ways in which to deal with people with it in a more effective, anxiety-reducing way
April 1, 2024
Steph Curtis shares her experiences of parenting her now 15 year old daughter.
As a mother of a son with autism, ADHD and PDA, I found myself relating to her journey. I was hoping for some more direct tips on management and whilst I did not get this, I did find the book reassuring that the struggles I face are not mine alone.
As a mother of a son with autism, ADHD and PDA, I found myself relating to her journey. I was hoping for some more direct tips on management and whilst I did not get this, I did find the book reassuring that the struggles I face are not mine alone.
June 13, 2024
This book is very well written and insightful for the often overlooked PDA profile in Autism. As a PDA adult, it feels validating to know that there are other people in the world who struggle with demand avoidance like I do. I hope that someday Sasha can share her experiences herself. Highly recommend this title for anyone working with Autistic children.
March 12, 2024
A personal story of life with a child with Pathological Demand Avoidance. With lots of advice and plenty of insight. A really good read if you want to know more about this condition. Steph story starts from a very young age up until her daughter reaches her teens and it's eye opening.
January 30, 2024
Written for sympathy and attention an awful book with no useful advice or substance. JKP used to be a publisher to go to for self help. Now they are one to avoid
June 20, 2024
“Now is not forever.” So good to remember when each stage feels so hard.
Encouraging book and easy to relate to. Very honest about the difficult reality of living with PDA.
Encouraging book and easy to relate to. Very honest about the difficult reality of living with PDA.
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