When we suspected Archie was autistic I felt that I was in freefall and dealt with it the only way I knew how – researching and reading obsessively – looking for answers. I went into a whirl of activity to try and get access to every health and education service available. What I want to achieve with this site is to put everything found in that time, and since, together in a way you can quickly access - saving you time and energy, and hopefully help you reach a place of ‘feeling effective’ more quickly. I have read and reviewed a number of books and resources – which will hopefully help you decide which would suit you better – saving your time and money. I have no expertise or angle apart from being a parent of an autistic child who loves to read. If parents with more experience or knowledge than me hit this site – please check it through and let me know if there’s anything I should add – or anyone in the same boat please feel free to recommend books or websites that helped you. It’s all about helping each other – each one of us making the journey makes a mark and defines the path a little more for those joining in behind us.
Book reviews to follow:
Personal stories from families and Autistic writers (Both fiction and non-fiction):
Let Me Hear Your Voice – A Family’s Triumph over Autism. Catherine Maurice.
This is a good book for those considering ABA Therapy, though a little out of date, the story is still a detailed account of diagnosis, therapy and recovery in the US.
Unravelling the Mystery of Autism and Pervasive Developmental Disorder. Karen Seroussi.
I was gripped by this book – by the energy of Karen and her pursuit of answers. She reminds me of many driven parents of autistic children I have met. This wouldn’t necessarily be the first book to read as you go headlong into many issues that can feel overwhelming if you are still coming to terms with a diagnosis. However, as soon as you are ready to consider dietary intervention, supplementation or bio-medical intervention it should definitely be on your reading list.
George and Sam. Charlotte Moore.
This is a simple and authentic view of family life, made all the more interesting because Charlotte’s sons represent just two of the many faces of autism. It’s an easy read, very useful for those wanting to get to grips with what difference the diagnosis could make to their day-to-day life. Also good for relatives or friends wanting to understand more about the day to day effects of autism on family life.
Facing Autism. Lynn Hamilton.
This is a manual of advice put together by a parent of an autistic child. Based in the US, using ABA, Floortime, dietary and bio-medical intervention they ‘reclaimed’ their son from autism. This is a book to read with a pile of post it notes! I found so much to think about I had to mark all the pages and go back to them. In the very early days post diagnosis, you might feel overwhelmed with such a huge amount of information! Because it is based in the states, some of the info given doesn’t apply to the UK. A lot of similar information can be found from looking at the websites of UK charities and organisations using bio-medical approaches (see links pages). Again, the strong ABA focus got me feeling quite hopeless because it seemed unreachable for my family. If you are feeling that ABA and bio-medical are the way for you, then this is a good read.
Daniel Isn’t Talking. Marti Leimbach.
I have heard people LOVE this book and HATE this book. I think because it doesn’t quite know if it’s an account of diagnosis and therapy, or a ‘chick lit’ book (no offence, I love chick lit!). I personally found it very powerful and read it several times. Because Marti is a very ‘open’ writer, she describes the feelings and experience of having her child diagnosed with autism very well, and also the feelings of being ‘on the edge’ of sanity as a parent. I did feel a little let down with the ‘chirpy’ ending – but – it was still a great book, and definitely helped me recognise and accept some of the feelings I was ‘travelling through’.
The Boy who Loved Windows. Patricia Stacey.
This has been one of my favourites to date. Should be read by anyone considering Floortime (Stanley Greenspan) certainly, but it is a wonderful and inspiring story for any parent to read. This is beautifully written and gives many insights that are valuable and useful. This was the first book to give me faith that we could implement a programme at home that would really make a difference to Archie’s long term future. Reading this family’s account and the wonderful achievements they made together was all the more interesting because they had brought their son, Walker, forward from the earliest stages of development possible, he was developmentally delayed from birth. This helped me feel that we were already ‘on the way’.
Autism – An Inside Out Approach. Donna Williams.
It’s a rare opportunity to read the experience of being autistic being explained by someone on the spectrum. Thankfully, there are more and more websites and books doing so, and the insight we gain from these opportunities is amazing. This is another book I would recommend as a ‘must read’ – for parents or professionals. This is exactly what it says – from the inside out - and explains really well Donna’s perspective and experience of the world. From hair washing, to visual effects, to how her limbs feel. Utterly valuable and insightful.
Emergence – Labelled Autistic. Temple Grandin.
Possibly the most known of autistic people following recent documentaries, Temple’s story gives us an insight into her journey towards becoming one of the highest functioning individuals with autism ever known. There is so much to be gained from reading this book. The story of her early life from her perspective and including insights into the overwhelming fears and feelings she experienced. The inspiration of seeing what she achieved after following her strong interests. The hope gained from witnessing the adults who supported her and had faith in her abilities. I think we should read every book we can written from within the spectrum, because so much of what is available is speculation from without. I’d probably recommend reading Donna’s book first, but both are important.
The Curious Incident of the Dog in the Night-Time. Mark Haddon.
This is one of those books that everyone should read. The author has never (to my knowledge) stated that the main character has Aspergers Syndrome, but it is widely accepted that is the case. A great insight into a different perspective on the world.
Joe – The Only Boy in the World. Michael Blastland.
This is very intelligent and thought-provoking. Written by the father of an autistic boy, it is not a story of diagnosis, therapy and search for ‘cure’ like so many other books - rather a story that brings into consideration about how autism reflects on humanity, spirit and life in general. Interestingly, I found some peace in this book, though I couldn’t tell you how or why. Being written by a father, fairly unusual in autism literature, it’s refreshing. Michaels well reasoned and matter-of-fact recommendations at the end may be reassuring for parents who are feeling jaded by the bombardment of information about cures and therapies at high cost to their families.
Eye Contact. Cammie McGovern.
A very satisfying murder mystery where the only witness is an autistic boy and the story concerns his mother’s urgent need to uncover the truth for the sake of her son. This would definitely be enjoyed by anyone who liked ‘The Lovely Bones’. As a parent, I found it interesting reading and a welcome break from ‘diagnosis to cure’ books. Cammie comes from a place of loving your autistic child for who they are, not what they can do. I half expected to be disappointed or somehow ‘let down’ but the story was great and the ending was powerful to me, and even flicking back to it when I wrote this gave me a jolt. For obvious reasons I can’t explain why, but the overall feeling leaving this book was an uplifting one. Cammie McGovern – we want more!
A Miracle to Believe In. Barry Neil Kaufman.
From the authors of the 'Son-Rise' Programme, this is the story of Robertito - one of the first children they worked with after their own sons' recovery from autism. At first I struggled with the book because I had some reservations about Son-Rise (more to do with angst about not being able to afford it at the time), but by the third chapter I was hooked into the story and through it absorbed some of the basic principles of the programme. The book certainly had an impact on how I spent time with my son, and also led me to consider my personal acceptance of autism and the quality of interactions within the family group. It comes as part of the Son-Rise pack but is an interesting read even if you are not planning to fully embrace the Son-Rise programme.
Dietary Intervention and Bio-Medical:
The Body Ecology Diet. Donna Gates.
This is not a 'diet' book in the sense of losing weight, more a way of life for those who wish to recover their health and build their immunity. The 'rules' of the diet are quite complex and involve making your own yoghurt, cultured vegetables, etc. The philosophies stack up well, and anyone with digestive, weight, viral, cancer or neurological disorders will benefit from this way of eating - you need to be quite confident in the kitchen, so if you don't cook at all it might not be the best place to start. Those whose children have been on the gf/cf or other exclusive diets for a period of time and have test results that show they need to refine the diet or beat candida or bacterial overgrowth will find this (or the SCD protocol) a logical 'next step'.
Breaking the Vicious Cycle. Elaine Gottschall.
This book looks at the relationship between digestive disorders and diet, and explains the cycle of events that occur for resulting disorders like Crohns Disease, ulcerative colitis, autism, diverticulitis, celiac disease, cystic fibrosis of the pancreas, and other forms of chronic diarrhoea. This again, like the Body Ecology Diet, is a logical 'next step' for those who have been following gf/cf or similar protocols for a period of time and need to refine it more to beat candida or bacterial overgrowth. For us the BED seemed the best option, but I would recommend consideration of the two options according to which is most realistic for your whole family.
Gut and Psychology Syndrome. Dr. Natasha Campbell-McBride MD, MMedSci (neurology), MMedSci (Nutrition).
This is one book that holds all the principles of the link between nutrition, the digestive system and neurological conditions such as Autism, ADHD, ADD, Dyspraxia, Dyslexia, Depression and Schizophrenia. Dr. Campbell-Mcbride advocates the SCD system of eating, for patients with 'Gut and Psychology Syndrome' (GAPS). There is alot of information in this book and at first glance can seem overwhelming, but the information is laid out simply and gives you relatively easy access to an advanced level of knowledge. I would consider this a 'must read'.
Can’t Eat, Won’t Eat. Brenda Legge.
I’ve yet to meet a parent of an ASD child that doesn’t have amazing difficulty getting a variety of foods into their child. My neuro-typical daughter is a fussy eater, but I hadn’t experienced anything until Archie came along! This is one of those books to buy and use as a liferaft! I tend to go along merrily, spending hours trying to make pale, crispy food on blue plates that hides the nutritional bits from my eagle-eyed boy – but every now and again as I scrape yet another meal into the bin I really do feel that I am hovering on the brink of insanity and rage, and losing the will to live. At times like these, books like this come into their own – even if just to read it and snort – ‘yeah, tried that’, ‘hah – right’ until calmness returns. This does have handy tips to try – probably nothing you havn’t tried before, but probably things you tried and forgot and could try again. (nb: The best bit of advice of all that I received - make little batches of meals and freeze them – you don’t feel so emotionally attached once a meal has spent a week in the freezer, and these are good ones to use when you think you might be on the verge of murder…….!)
E for Additives. Maurice Hanssen.
This is a useful reference book, but probably doesn’t contain anything you couldn’t find on the internet. So, it’s not an essential, but useful if you prefer to reference with books.
Children with Starving Brains. Jaquelyn McCandless
This book is from the perspective of a medical professional and grandparent of an autistic child. She looks at many different approaches and gives very good insights and draws reasonable conclusions. Because she comes from a medical and scientific background, but also has the experience of loving an autistic child, her conclusions do come down somewhere in the middle ground, and the book is good reading for those of us who are trying to find the magical balance between being hopeful but not gullible. This is a book much needed for those of us who are trying to navigate information which is out of our natural depth of understanding.
Enzymes for Autism and other Neurological Conditions. Karen DeFelice.
For parents who find the GF/CF diet too overwhelming (and lets face it, it IS overwhelming!), you could investigate this new line of intervention. Many parents swear by enzymes and there are numerous entries on forums showing that kids are being able to reintroduce sensitive foods with the support they offer. The use of enzymes is further reaching than that, but this book can tell you everything you need to know about them.
Treating Autism – Parent Stories of Hope and Success. Edelson & Rimland.
What I love about this book is that it is a collection of stories from parents to lots of different ASD children. This makes it likely that all parents will find some recognition in at least one, but probably more, stories. The focus is on stories of successful interventions, mostly bio-medical. Important to remind us that autistic children have many symptoms that can be relieved or removed, and that they should be entitled to good quality medical care that takes into account common symptoms. There are some good snippets of information, though arguably they could be found on an internet search – but the strength of this book is for parents who want reassurance before they start looking into what parts of their childs’ health might be improved.
Optimum Nutrition for your Child’s Mind. Holford & Colson.
I think everyone with a child should buy this book, let alone anyone with an autistic child. There is a chapter dealing with autism, which gives some pointers and simple explanations – it will help you while you search for a good nutritionist (get one with experience of autism if possible) or DAN! Physician. Interesting for any parent to read.
Patrick Holford’s New Optimum Nutrition Bible.
If you are entering the world of bio-medical intervention, dietary intervention or supplementation and you have any less than a degree in human biology, get this book. It is simple and explains all the different systems in the body, how they work, what fuels them, and everything you need to know to be able to hold conversations with your practitioners, or understand the programmes they give you.
Wheat Free, Gluten Free Cookbook for Kids and Busy Adults. Connie Sarros
The recipes are very US based, along with the measures and ingredients. Some could be converted across, but as we are striving to follow a gluten, casein, corn, and egg free diet – so much needed to be replaced that it made it a lottery. However, if you are only removing gluten, and your child likes the peanut butter and ‘jelly’ variety of meals, the recipes are kid friendly and fun.
The AiA Gluten & Dairy Free Cookbook. Marilyn Le Breton.
This is the book to get if you can only get one. This was written specifically for the Allergy Induced Autism Group, and concentrates on the Gluten and Dairy free diet. There were quite a few ingredients I found it difficult to get hold of, but there were many recipes to choose from, and lots of suggestions for alternatives. There is also an easy to follow key for other key allergens in the recipes and a number of suggestions for alternatives.
Cooking Without. Barbara Cousins.
I found this book really catered for quite a bland, adult taste – I didn’t find much to tempt a sugar-craving three year old. It’s useful, but if you could only buy one book, I probably wouldn’t recommend this one. Having said all that, when I went back to review it, I found a few recipes that I wanted to try – so maybe it’s one to add to your collection once you’ve got used to cooking alternative foods.
What to Eat When you Can’t Eat Anything. Chupi and Luke Sweetman
I love this book and have referred to it time and time again – both for myself and the kids. Because it is written through finding foods for ingredient-sensitive teenagers, some of the recipes are for credible alternatives to fast food favourites. It’s particularly useful if you are excluding many ingredients – because a number of the recipes have no allergens. However, if you are following a GF/CF diet you will need to substitute in most recipes. Also the weights are in cups, but you can work out the measures on the internet.
The Wholefoods Allergy Cookbook. Cybele Pascal.
This is another book where ingredients are sometimes hard to find, and the meals are fairly adult. There’s a whole chapter on salads. Because I was looking for a book to help me with alternatives for a very self-restricting child, I was looking for something that gave me child-friendly recipes, this wasn’t it – but again, it’s useful to have on the shelf when I am looking for inspiration.
Reference:
The Autism Encyclopedia – Neisworth and Wolfe.
This is an interesting book, but probably most useful for a student wanting a quick reference, or for a school resource for Special Needs Teachers. I didn’t find anything in it that I couldn’t find relatively easily on the internet.
Approaches to Autism. – National Autistic Society.
This was a little booklet-type book that gave a one-page outline of every type of therapy available. It was useful as a starting point, but the information in it could also be found on the NAS website, so I wouldn’t say this was a vital purchase, but it did help me consolidate and refocus my thoughts when the internet research on therapies was feeling ‘vast’.
Understanding ADHD, Autism, Dyslexia and Dysporaxia. Professor Colin Terrell and Dr Teri Passenger.
This is part of the BMA series of Family Doctor books, available in some pharmacies or surgeries. It's a very compact and simple explanation of these disorders but would be useful for giving to a family member who wants to understand autism but doesnt 'need to know' the more complex parts of the story.
Practical Family Guidance:
10 Things Every Child with Autism Wishes You Knew – Ellen Notbohm.
This would be a perfect book to give to grandparents, cousins, babysitters, anyone who is in contact with your child and wants to know more. It spells out very simply how to be a more ‘autism-friendly’ person. It can help you very much in the early days while you are getting your head around what it is to be autistic, and trying to adapt your behaviour and the child’s environment to suit them better.
Everybody is Different – Fiona Bleach
This is a great book to give to children in the 7-12 age group who have a brother, sister, cousin or best friend who is autistic. It explains the condition well, and will help children develop their understanding. It is also useful for helping them see that their feelings are acceptable and understandable, positive or negative. It will also help them articulate well in situations where they may need to explain or defend their siblings behaviour.
Changed by a Child – Barbara Gill.
This book really helped me. It is a general book, written for parents of a disabled child. It’s perfect for leaving on the shelf in the loo, and just reading one page at a time. It is uplifting, and very supportive. I definitely came to terms quicker with my feelings through reading this book, and found the stories and perceptions really useful for helping me frame my ideas. This is a GREAT gift to give to a parent of an autistic (or other disabled) child.
My Brother is Different – Louise Gorrod.
This is a book aimed at early years siblings of children with ASD and there are other alternatives for siblings with an ASD sister. I found this useful to read through with my 5 year old and then ‘leave around’. Occasionally she has asked me to read it to her again, and it’s useful as a bedtime book or a conversation starter.
How to live with Autism and Asperger Syndrome – Chris Williams/Barry Wright.
Of all the general guides to life with an autistic spectrum disorder, I found this the most comprehensive, the most practical and the most useful. Definitely a must have book for a family beginning to learn about ASD, and useful to keep on the shelf for referring back to when behavioural issues or other queries crop up.
Taming Your Gremlin – A Surprisingly easy method for getting out of your own way – Rick Carson.
This is not anything to do with autism, but is very useful for helping yourself with motivation and moving yourself forwards. I had many crises of confidence, particularly when setting up home education or trying to make decisions about the many areas you get plunged into when you parent an ASD child. I was getting stuck in procrastination and research, and this book really helped me identify what was holding me back and what I was afraid of. Most importantly it just helped me get on with stuff!
Why Me? Why This? Why Now? Robin Norwood.
I read this hoping to find some inner calm. There were a number of useful thoughts which helped me organise some of my feelings, but it relies very heavily on the reader having total belief in reincarnation so it lost me about two thirds along the way and I never completed it. So, if reincarnation is your bag, you should read it.
Sensory Issues:
The Out of Synch Child – Carol Stock Kranowitz.
An ABSOLUTE must for any child with an ASD. Reading this will help you make sense of some of your child’s sensitivities, understand some of their behaviour and you will definitely know by the end of it if you need the services of an Occupational Therapist, or other sensory based practitioners. I found Archie on nearly every page and this book was a really important part of helping me get to know and understand him better.
The Out of Synch Child Has Fun – Carol Stock Kranowitz.
This builds on the other book with lots of suggestions for playing and working with sensory kids. Probably not essential in the early days, but when you are planning a programme at home, or activities that will soothe or energise your child it could become a well-thumbed resource.
Education & Resources:
Engaging Autism – Greenspan/Weider.
Personally, I would recommend this to anyone with an ASD child. Stanley Greenspan sets out his theory well and makes it easy to access. Though a full-commitment to the programme, like ABA, needs many hours (and help – it requires very high energy levels!), you can take on board the principles and use it in day-to-day interaction with your child. There are many resources available free on the Floortime website, along with many you can purchase.
Behavioural Intervention for Young Children with Autism – A Manual for Parents and Professionals. Catherine Maurice.
I tutted and sighed through the first few chapters of this book where Catherine Maurice pours scorn on virtually every other way of working with your child than the one she uses. This lady definitely believes that ABA and prayer are the only way. If you get past those chapters, this is actually a GREAT resource, well laid out, easy to use, giving you what you need to start working with your child straight away in a methodical, sensible way. Again, my experience with contacting ABA practitioners was off-putting – I really couldn’t afford to set up the programme, and didn’t have faith that it was ‘the one’ for us. I found the ‘our way is the only way’ attitude probably pushed me away from something that has worked out to be very useful. This guide gives you a way to access ABA and see if it ‘fits’ your family. The financial and time commitment required for a full-time programme mean that not every family can take this path (but this book means you can at least try it and see).
The Irreducible Needs of Children – Brazleton & Greenspan.
This is very interesting for those working with children or using the Floortime model, but not really essential. I would recommend ‘Engaging Autism’ instead for parents – then maybe following up with this if you want more substance around the theories.
A Picture’s Worth – Andy Bondy & Lori Frost.
This is a small book and not given to embellishment, but it was the very first book I read, and was instrumental in me setting up Archie’s first picture exchange, something that reduced tantrums massively within days and gave him his first understanding that big humans could be useful for getting you food! If you want to get some initial picture based communication going before you have time (or money) to go on a PECS course, get this book. As a parent, there was enough to help me set up what he needed in the house to get his immediate needs met – mostly food and drink requests. Most importantly, it gave me something straightforward, effective and practical I could get on with in the agonising period while we were waiting for appointments.
The Toddler’s Busy Book – Kuffner.
This isn’t ASD focussed. I got it before Archie was born for ideas for games with his older sister. It has lots of ideas for games, arts, crafts, messy stuff, etc., that are easy to adapt. If you are not great at improvising activities for toddlers (personally, I used to run out of ideas after about 3 seconds), this is useful to flick through when you need inspiration, and has another version for babies and also for older kids.
Small Steps Forward – Sarah Newman.
This book focuses on different play and interaction with Special Needs children in general, looking at the different areas of development and suggesting things to do. It is easy to read, easy to use, and a good book to ‘dip into’ for inspiration. I used it a lot in the early days before our programme started to come together. There are also some chapters where Sarah speaks from experience about her life with her sons, one who is on the spectrum, and lots of advice. Sarah is a very ‘can do’ person, heading a group supporting parents of children with disabilities, making presentations and generally keeping very busy – her spirit comes through loud and clear in this book. There is also a follow up book now for older children.
The First Idea – How Symbols, language and intelligence evolved from our primate ancestors to modern humans. Greenspan/Shanker.
This again, is really interesting reading for those studying autism or play therapy, or those undertaking Floortime who want to really understand the underpinning philosophy. However, if you are a parent wanting to just get on and use intensive play with your child, you should start with ‘Engaging Autism’.
My First Signs – Child’s Play.
There is a whole range of these books, but this is a great starter for experimenting with Makaton. The book is one you can read with your child, but also shows adults clearly how to do some of the basic signs. Archie has never (yet) signed himself, but I do believe that the adults around him signing does help him make sense visually of what is going on. There are lots of other Makaton resources, books, video’s etc available if you find you get along with it, and some free resources on the CBeebies website.
It Takes Two to Talk – Manolson/Hanen.
This is an early and very family-friendly manual for developing communication in natural family situations and settings. Nothing in it is rocket science, but there are lots of methods once learned, always with you. This is refreshing in that it doesn’t demand intensive hours and expensive therapists, but helps you make the absolute most out of every natural opportunity to communicate.
The Child with Special Needs – Greenspan/Weider.
This is a similar book to ‘Engaging Autism’ with a broader spectrum of special needs covered. I’m going to say again - really interesting reading for those studying, or those undertaking a Floor-time programme who want to increase their understanding of the underpinning philosophy. However, if you are a parent wanting to just get on and use intensive play with your child, you should start with ‘Engaging Autism’.
Toilet Training for Individuals with Autism & Related Disorders. Dr. Maria Wheeler, M.Ed.
This is exactly what it says on the tin! A comprehensive guide, useful to parents or teachers. It tells you exactly what you need to see BEFORE you start training, and exactly how to go about it. The information was also useful for other friends of mine with 'neurotypical' boys who were proving hard to toilet train!
Relationship Development Intervention with Young Children. Gutstein/Sheely.
This is another FANTASTIC manual. This is probably the most accessible of all the home programme manuals in that you don’t immediately feel guilty about not having 40 hours a week or £30k a year to run it! This method is among the newer ones to enter the market, and they are onto something. Easy to understand, easy to use, practical and effective - the activities start from a level where the child is able to attend to simple tasks and basic guidance from an adult.
Playing, Laughing and Learning with Children of the Autism Spectrum. Julia Moor.
This is another great resource for play ideas. I gave this book to Archie's Key Worker at Nursery, as it contains lots of simple activities and guidance of how to work with autistic children on simple tasks. It is also great to 'dip into' when you are looking for ideas to fulfill a part of a home programme. This isnt about philosophy, it's a straight forward play resource.
Giggle Time, Establishing the Social Connection. Susan Aud Sonders.
This book contains a programme and activities designed to develop the communication skills of children with Autism, Aspergers and PDD. Another great resource for the nursery or school. It could be used at home by itself or as part of a home programme - If you have different volunteers or relatives visiting, and one is particularly talented at engaging socially with your child, you could just hand them the book and ask them to work through it as their contribution to the programme.
If you have found these book reviews useful, please consider a small donation to Archie’s Learning to Live Appeal
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