BUT for families living life on the autistic spectrum and especially those with demand avoidant traits or Pathological Demand Avoidance (PDA) it can sure feel like they are.
You feel like your child is the only one. That you as a parent must be doing something wrong…after all everyone tells you that you are…blames you. So to protect yourself and them…you withdraw. You hide. Sometimes in your house…other times behind smiles and lies.
Knowing that there are others out there who if not on your same path at least on the same pilgrimage, the same journey…that is a first step. But you sometimes need more. You need answers…and while the truth is that even the experts don’t know a whole lot about some of this yet…it helps to understand what they do and don’t know.
This then is about some of the resources that this family has found useful along the way…
PDA Society should be your first stop for information and support…including a parents’ forum where you can ask those hard questions of other families like yours.
Lives in the Balance should be your second stop…I almost made it number 1 is how important it is. If PDA tells you what you are dealing with then Dr. Ross Greene’s site tells you how.
National Autistic Society (UK) maybe another good resource…but remember while PDA does sit on the autistic spectrum the methods that work best with it can be markedly different from other forms of high-functioning autism.
Autism Society (USA) but remember you are unlikely to find much information or many resources on PDA there as this is a ‘diagnosis’ that is primarily UK based. But still if you want local resources it should be a step in that direction.
But the best resources are the ones nearest you. I am blessed to live in an area with an active branch of the NAS as well as a home education group with loads of other ‘special needs’ families. Being connected makes this journey seem less daunting for sure.
Of course, there are loads of books out there too. This list is by no means exhaustive…just a handful of my favorites. I am where possible linking them to their Kindle ebooks. This is NOT an endorsement of Amazon, but from personal experience I know how desperately you can want to get your hands on something new that you hear about that might help. At the very least, you will be able to see a table of contents, brief description of the book, perhaps an excerpt and reviews by other readers.
Understanding Pathological Demand Avoidance by Phil Christie et al – The definitive book on PDA. Just two things…it is a dfficult read because 1) it is written more from a professional standpoint for other professionals and 2) those early outcomes they were reporting are scary. Just remember like I do…that does not have to be my child.
The Explosive Child by Dr. Ross Greene – If you can afford only one book make it this one. It is not the easiest read out there…especially if you are in the mind set of ‘fixing’ your child…this book is more about fixing how you see your role as a parent. And that can be even harder for some people to handle. But even those people could benefit by at least considering what he has to say on the subject.
At the root of all autistic spectrum disorders is sensory issues or sensory processing disorder (SPD). A lot of the work that I have done with PanKwake that has made our lives easier has been about addressing that root cause. Some of the books that I have found really helpful on that issue include:
The Out-of-Sync Child by Carol Stock Kranowitz – Like Phil Christie’s book this was the first major and definitive work on SPD, but likewise it is more technical than later ones. Still a good option though.
The Out-of-Sync Child Has Fun by Kranowitz – A bit easier to digest but it is not available as an ebook as it makes extensive use of charts and diagrams that do not translate well into those formats.
Sensational Kids by Lucy Jane Miller – Excellent for its incredible use of case studies i.e. stories of real parents and kids. But again…don’t go ebook.
Raising a Sensory Smart Child by Lindsey Biel and Nancy Peske – Rich content…fancy way of saying LOTS of good information that may result in sensory overload for the parents trying to read and digest it. The most comprehensive guide to sensory processing challenges…that is in the description and pretty much is truth in advertising. So not a good first book on the subject but a great encyclopedia on it.
Early Intervention Games by Barbara Sher – This one is EXCELLENT for giving specific games, toys and strategies for managing sensory issues.
The Ultimate Guide to Sensory Processing by Roya Ostovar – Yes, another one! I told you this was one of our primary strategies for living life on the autistic spectrum.
If dat ain’t enough, then there are these…
The Incredible Five Point Scale by Kari Dunn Buro – Get it! We used this one extensively in the beginning to 1) give her an emotional vocabulary and 2) make both of us more aware of when she was approaching sensory overload. These days…we have internalized it all so much that we just do it naturally without numbers, charts or apps. But it is an invaluable tool.
Managing Meltdowns by Will Richards – EXCELLENT!!! Not only does it give you a specific game plan to use with meltdowns but it helps you to understand them from the perspective of someone on the autistic spectrum.
The Edison Gene by Thom Hartmann – This book is about ADHD which can be either a co-morbidity with PDA/autism or confused with…BUT the important thing is that it is about a paradigm change. Instead of seeing these as diseases, syndromes or disorders, he postulates that they are in fact jumps in human evolution. So if you need a bit of help seeing how all this could actually be a ‘good’ thing this might help…it did for us.
Just Give Him The Whale by Paula Kluth and Patrick Schwarz – Written more for teachers and classrooms but it is great for again challenging our mindset about why and when things really have to be done a certain way.
Home Educating Our Autistic Spectrum Children by Terri Dowty – Homeschooling is a major part of our PanKwake strategy…this book talks about how and why it is the right choice for some other families…but I am the first to admit it is not for everyone.
I also admit that I found intense hope in some New Age philosophies. While I still balk at being identified with that term ‘New Age’ the idea of seeing your child as special not just special needs…of them being a solution to the complex issues that our world face…and our role as parents being more as guides…well, it alone can be transformational no matter what your belief system. So tongue in cheek I include these on this list from that perspective only…
Indigo, Crystal and Rainbow Children by Aingeal Rose
Fire Child, Water Child by Stephen Cowan
And those are not even all of the ones on my Kindle…just my top picks. You could spend a small (or large) fortune searching for magic cures, someone to ‘fix’ your child and ‘answers. I hate to tell you…none of those exist. Because our children and families are as varied and unique as rainbows.
Being honest here…at some point just how many do you need/want to read? Answer…when you are on year or two year long waiting lists or the professionals that you were referred to don’t have answers…
you as a parent do what you have to do for your child.
Using another analogy here (get used to them…a a writer I use them A LOT), I love sewing handmade quilts…and that is what these resources are like…patterns and blocks for you to pick and choose from in making YOUR quilt…the one that fits your child and family. And trust me sometimes it is a matter of trying something and it not quite fitting you…then you must decide whether to throw it all out and start over fresh or cut and shape it to fit your needs.
I cannot emphasize enough…
YOU ARE THE EXPERT ON YOUR CHILD…and your family.
Our answers are not for everyone…though I honestly believe they are a SOLID and STRONG pattern worth examining and cutting to fit your unique needs. If I did not then I would not waste my time or yours writing this blog.
So…I hope that you have found some things of interest to challenge you and some hope that life on this pilgrimage can be fun, delightful and happy as well as frustrating, challenging and unique.