All About Me is an in-depth guide describing the practicalities of telling a child or young person about their autism diagnosis. It discusses when to tell, who should do it, and what they need to know beforehand. In this blog, author Andrew Miller explains his reasons for creating the book, and who can benefit from it.
What motivated you to write All About Me?
Telling children and young people that they have autism and trying to explain what it means to them is difficult. The abstract nature of autism, its associated differences in cognition and its lifelong implications make it hard for children to understand, and finding out that they have autism could potentially cause some individuals emotional and psychological upset. Therefore, in some cases it could create more problems for an individual than it might intend to solve.
Through my own work teaching more than 250 individual children about their autism, however, I have found that sharing a child’s diagnosis with them can frequently turn out to be a highly positive and enjoyable experience for both the individual concerned and everyone else involved in the process. The majority of children who first learned about their autism through the methods and approach described in this book have seemed to accept their diagnosis well. This has enabled their parents, and the other adults supporting them, to talk openly with these children about their autism. In many cases this led to them using knowledge of the child’s autism jointly to help make practical improvements to the individual’s daily life and involve them more in planning for the future. Many children were relieved to be told about their diagnosis and some have even gone on to regard its discovery as being a cause for celebration.
There are several reasons why it may prove vital to tell a child about their autism at the earliest stage possible and these are all put forward in this book. Not least, though, providing children with this missing piece of their self-knowledge might better protect their long-term emotional well-being and enable them to take up their legal rights to participate as fully as possible in making decisions affecting their lives. Despite wanting and needing to share the diagnosis with a child, parents, school staff and other professionals can often be concerned that doing this themselves could damage their relationships, or they may feel that they have insufficient knowledge and skills to explain autism to a child on the spectrum.
Given the situation described above, and the large rise in the numbers of children being diagnosed with autism, it is perhaps surprising that very little practical guidance appears to have been written for professionals and parents on the subject of telling children that they have autism. Moreover, specialized professional support for this sensitive and challenging work is not always readily available when children and their families need it. Therefore, I wrote this book to share my own experiences and to add to what literature is available for professionals and parents who are contemplating the prospect of having to tell children about their autism diagnosis themselves. It provides detailed step-by-step guidance on how to disclose and explain a child’s diagnosis and comes with a range of free downloadable materials. These include differentiated teaching and learning resources that are fully editable and designed to support the programme whilst catering for each child’s unique preferences, differences and needs.
Why did you choose the approach towards teaching children about autism described in the book?
The approach and content chosen for All About Me was initially inspired by a description of how Jude Welton, a psychologist and author, explained his diagnosis to her own son who had Asperger Syndrome (AS). She presented this to a conference I attended in 2004 shortly after the publication of her book called Can I Tell You about Asperger Syndrome? Her presentation also pointed to work by two earlier authors: an article about how to write a special type of social story called Pictures of Me by Carol Gray and I am Special, which is an autism workbook by Peter Vermeulen. From this I concluded that an ideal way to go about disclosing their diagnosis to most of the children I worked with might be to produce a unique printed booklet with each individual which contained a personalized narrative about themselves and framed their autism in the context of their own personal attributes.
This approach appeared to offer a positive framework which could be used to present autism safely to very different children across the spectrum and with minimal risks of negative outcomes. The whole process could present a child’s autism to them concretely in a matter-of-fact, calm and reassuring manner, as just being a part of who they are as a person. The booklet could be used afterwards as a visual tool for consolidating and developing what a child learned about themselves and their autism during the programme.
Which children is this programme suitable for?
Experience has shown that All About Me is flexible enough to be used successfully in some form with most children with an autism diagnosis, who have some understanding of language and have developed an effective means of expressing themselves. This is provided the work is carefully planned in detail, differentiated appropriately and carried out at the right time.
The children I have led this work with included girls and boys from diverse ethnic and cultural backgrounds. It has been delivered to children who had no prior knowledge of their autism as well as to some who had already been told but needed to learn more about it. Their ages were between six and 18 years, with the majority being in their final year at primary school or first year of a secondary placement. Some of them were very able academically while others attended special schools and inclusion units for children with special educational needs (SEN) or autism. It has proved possible to adjust the programme to include individuals who presented challenging behaviours despite these often meaning that they were much more easily distracted and harder to engage.
Besides a child’s parents, which adults is the book intended for?
In educational settings, this book might be used by staff who are qualified to work in the following roles:
- the special educational needs coordinator (SENCo)
- the inclusion manager
- learning support/SEN teachers
- class teachers in specialist schools and inclusion units.
Besides school staff, this book is also intended for outside professionals who could be supporting children with autism in similar capacities to these:
- local authority SEN and autism advisory/outreach teachers
- educational psychologists
- mental health professionals.
Could you provide a brief overview of the book’s main content?
There are two parts to this book. Part I (Chapters 1-3) aims to help adults reach a point where they feel able to make informed decisions on whether telling a child that they have autism would be in the individual’s best interests at the time and, if so, how best to go about it. The key benefits and risks associated with choosing to share or withhold the diagnosis are presented. Adults are then signposted towards the types of information they may need to gather about each individual child and their circumstances before they will be ready to commence planning and delivering the work.
Part II is made up of six further chapters which do the following: describe in detail how to teach the programme to different children; identify and advise on how to address potential issues that could arise during an instance of the work; and suggest ways to continue helping children to understand and live with their diagnosis after the programme has been completed. There is also advice on how to share the child’s diagnosis safely with the people around them at home, school and elsewhere. The final chapter draws all the downloadable resources together.
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