Fifteen Things They Forgot to Tell You About Autism

Co-editor of the not for profit parenting magazine, AuKids, Debby Elley has now written her first parenting guide, Fifteen Things They Forgot to Tell You About Autism: The Stuff That Transformed My Life as an Autism Parent. Here on our blog, she describes the book and its aims in her own words. 

I’ll let you into a secret. It’s not really fifteen things, it’s a lot more. My son Bobby calls it Fifteen Things YOU TOTALLY MISSED About Autism, but the thing is, you’d be forgiven for missing them. No-one tells you what it’s important to know. You sort of find out the hard way. That is, with time and effort and sometimes a few tears.

Fifteen Things… is the sort of book that I could only write having amassed a decent body of evidence from my own experience of raising twins. It’s now 12 years since they were diagnosed and I’m one of those parents who can look back with the benefit of hindsight and tell myself where I went wrong. That’s no fun at all, so I thought that I’d prefer instead to tell those at the beginning of this learning curve where they can go right.

Fifteen Things

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Autism & Ageing – book extract

The latest in our blog series for Autism Awareness Month, we’re looking at Wenn Lawson’s excellent book for autistic adults. The first book to look seriously at the practical issues facing older adults with autism, Wenn Lawson’s groundbreaking handbook Older Adults and Autism Spectrum Conditions offers support, advice, and sensible ways in which to look at the issues. In this extract, Wenn uses himself as a case study.

autistic adults

As I’ve aged, I’ve noticed a few changes related to ASC that are relevant to this discussion. I’ve divided them into physical setting, emotional wellbeing and social setting, though clearly each overlap.

Physical setting

This broad topic includes health and mobility at home, outside home, at work, using public transport, and visiting family and friends.

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Coming Home to Autism

New book Coming Home to Autism takes a room-by-room approach to guide the parents of a newly diagnosed child through day-to-day family life. There are ideas and routines to try at home, including advice on toilet training, diet and nutrition, sensory play, and much more. We sat down with co-authors Tara Leniston and Rhian Grounds to find out more…

Congratulations on the publication of your first book! We want to let our readers know a bit more about it, so, can you tell us who this book is for? Who did you have in mind when you were writing it?

Tara – When my son was diagnosed with autism 5 years ago, I was looking for a book like this. I needed simple practical advice that was easy to read, and something I could use at home.  All the books that were available at the time were either very medical based, diaries of other people’s journeys, or books on pointing fingers as to why your child had autism.  I was very fortunate that I lived in the London borough of Wandsworth at the time Dylan was diagnosed, and I had access to the best help. I was also in a position where I could throw myself fully in to learning all about autism and Dylan. While I was writing I was thinking of all the information I wish I’d had in one place – as opposed to spending hours, weeks and months researching and wasting a lot of money on things that didn’t really help at all.

Rhian – Yes, as Tara says, it was written for families with younger children and those children with a relatively recent diagnosis. I was constantly thinking back to all the families I have worked with, what they said was most useful during their sessions and what they wished they had more advice on. I was also thinking of all the other professionals I have worked with over the years and how their knowledge has contributed to helping children and families consider and plan for all their child needs; from the day to day activities, sleep and communication. This book really is a combination of all those experiences and expertise.

autism

How did you discover your shared desire to help and advocate for autistic children?

Rhian – My career has been dedicated to working with all ages with ASD. I have worked, volunteered and supported autism awareness campaigns. At the same time Tara was raising money for the National Autistic Society; launching herself off buildings, clearly advocating for Dylan and autistic children! She was also supporting local families with advice and signposting them to resources and services. Through our common desire to advocate and consider ASD as part of our families and communities we developed a friendship.

Tara – I gave up my career as an actress to help Dylan and I threw myself in to learning all about autism and how I could help others in the same situation as us. The autism community is a fantastic group of supportive people, families and professionals. I believe Dylan brought Rhian and I together to write this book.

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Anxiety and the Autism Spectrum – book extract

As it’s Autism Awareness Month, we’re sharing a series of key extracts from some of our best and most popular books for autistic adults here on the blog. You may have already seen the extract from An Adult With an Autism Diagnosis which we shared recently, and below is an extract from The Guide to Good Mental Health on the Autism Spectrum. This short extract focuses on anxiety and autism, and we hope gives a good idea of what readers can expect from this book. 

The high rate of anxiety disorders among people on the autism spectrum may be due in part to the issues that people with autism spectrum conditions have to contend with in being part of the ‘neurotypical’ world. On a daily basis, autistic people have to make sense of a world that is extremely hard to decipher, deal with sensory overload (and worry about potential sensory overload), and navigate an often hostile and incomprehensible social world. All of these experiences can contribute significantly to a person’s anxiety levels. In addition, the autistic traits of perfectionism, preference for structure/routine and repetitive behaviours can all add to the levels of anxiety. In trying to make sense of the world, people with autism often want to imagine the outcomes of events or situations that involve them.anxiety
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Autism as Difference Not Disorder: Insights from the Author

Drawing on 30 years of professional experience and detailed research, Difference Not Disorder: Understanding Autism Theory in Practice exposes the myths around autism and provides practical guidance on teaching and learning, behaviour management, addressing sensory and physical needs of children with ASD.

Difference Not Disorder

Our recognition and understanding of autism forms a recent story in terms of human knowledge. In my lifetime this story gained momentum, hastening to the current perception of autism as neurological in nature. However, across the globe this neurological nature, viewed at-odds with the neuro-typical one, is considered impaired or disordered. The over-arching aim of this book was to question this assumption while posing an alternative view of difference not disorder because of all the children I had the honour to work with, children with autism were some of the bravest.

disorder

There are limitless ways in which I witnessed their bravery. They included venturing every day out into a world with incomprehensible social rules and codes in which lack of or inappropriate response could result in unwelcome, verbal attention or even confusing reprimand. It also included perpetually manoeuvring through sights, sounds and textures that could overwhelm and/or aggravate the senses often without being able to express mounting stress and distress; and/or experiencing revulsions towards some tasks but compulsions towards others in situations where you had no idea of the duration or scheduling of either.

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An Adult With an Autism Diagnosis

It’s Autism Awareness Week in the UK this week and, while we want to foreground the voices of our autistic authors as much as possible every week of the year, this week it’s especially important for us all to better recognise, understand and accept the variety and validity of autistic experience. With this in mind, the below extract is an introduction to Gillian Drew’s bestselling An Adult With an Autism Diagnosis: A Guide for the Newly Diagnosed. Aimed at those who receive a diagnosis for the first time as adults, this book draws on personal experiences to provide positive advice on dealing with life, health, and relationships following an adult diagnosis. With thanks to the author for allowing us to share their story. 

Adult Autism Diagnosis

When I was diagnosed with Asperger’s Syndrome, an Autism Spectrum Disorder, at the age of 28, I was sent away without so much as a leaflet to explain what it all meant. As you can imagine, I was left with more questions than answers. What exactly is autism? Why do I have it? How can it be treated? What does it mean for my life? How does it affect work? How does it affect relationships? What are the long-term consequences? Can I still get married and have children? Should I get professional support? Where should I live? How do I explain this to people? Why was I not diagnosed as a child? Will things improve?

Unfortunately, there was nobody I could ask and nobody who could answer. As someone whose only knowledge of autism came from the movie Rain Man, I discovered to my dismay that there were no books catering for the newly diagnosed adult. The vast majority of the literature on autism focuses on children with the condition, and those books that do cover adults assume you either received the diagnosis as a child and therefore understand an awful lot about it already, or are qualified as a clinical psychologist. I craved a book that could help me understand what it means to be diagnosed with autism as an adult.

Failing to find it, I decided to write it myself to help others come to terms with this life-changing news.

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Creating Autism Champions

With Autism Awareness Week just around the corner, we are delighted to tell you about an innovative resource by Joy Beaney entitled Creating Autism Champions. Here, Joy explains what has inspired the book, and what can be done to increase awareness of and sensitivity towards children with autism.

autism champions

What made you want to write Creating Autism Champions?

I believe that we need to develop children who are aware of the various needs of people with autism and how they can work, grow and play together rather than putting the onus on those with autism to ‘fit in’ with school and society.

I worked as Manager of an Outreach Service supporting children with autism in mainstream Primary schools.  A major part of the work as an outreach service for children with autism was to promote inclusion. The outreach team delivered staff training to raise awareness of autism and recommended practical strategies and approaches to support children with autism. These practical strategies were designed to help the children themselves, as well as their teachers and caregivers. However, whilst these strategies undoubtedly helped the children to cope with the day-to-day problems of coping in school, we found that when the children with autism reached 8 or 9 years of age, new issues emerged surrounding the difficulties they had with social acceptance. We undertook a peer awareness project in local schools developing understanding and changing attitudes to autism so that children could become ‘champions for autism’ and support their peers both in the classroom and playground.

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Autism and Enablement

Described as ‘an excellent read providing visionary insight’ by Jane Miller (County Manager Occupational Therapy and Reablement, Kent County Council), Autism and Enablement shows how to help adults with autism achieve greater independence and become more self-sufficient.

enablement

We are very pleased to receive so much positive feedback after the launch of our book Autism and Enablement. The Kent specialist ASC Enablement approach is the first of its kind provided by a UK Local Authority and we are honoured to publish a book on the approach. We hope that the approach is taken up nationally; this is only equitable because enablement is provided across the county to older people and people with physical needs, and increasingly to people with mental health issues and learning disability. We would argue that people on the spectrum are prime candidate for enablement because it is not inevitable that just because you have autism you should be destined to rely on others throughout the lifespan. People we have met have been found to have significant potential for personal growth, increased self-worth and self-esteem, for an increased sense of wellbeing and internal resilience; many just haven’t been offered the right support and neither have their supporters.

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Winston Wallaby Can’t Stop Bouncing

Winston Wallaby Can’t Stop Bouncing is a fun, illustrated storybook that will help children aged 5-10 with Attention Deficit Hyperactivity Disorder (ADHD), Sensory Processing Disorder (SPD) and/ or Autism Spectrum Conditions (ASC/ASD) to recognise their sensory needs and to develop tools to support them. To learn more about the book, who better to ask than its authors, K.I. Al-Ghani and Joy Beaney? Chatting to them, we learned a lot about hyperactivity in children, what to look out for and what can help. There’s even a downloadable activity sheet for teachers. Read on to find out more.adhd

What motivated you to write Winston Wallaby Can’t Stop Bouncing and who is the book for?

Joy and I have worked together in special education for many years. We noticed that there were not many books available that could explain hyper-activity to children in a story format.  We decided to collaborate on this project using Joy’s expertise in Sensory Processing Difficulties, my skills as a story teller and Haitham’s ability to bring it all to life, through his illustrations.
We think the book has something for everyone: It is a story all children can enjoy. A story in which, we hope, children with hyperactivity will be able see themselves in Winston.  They will learn that it is not their fault and instead of being the problem, they could learn to be part of the solution. Parents and educators will have tools and strategies they can use that can help the child to manage their hyperactivity and, if successful, perhaps avoid the need for medication.

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