Sarah Cobbe has worked in the field of autism for more than twenty years, in a career that has involved teaching, writing and training. In this book, she distils her wisdom and care into simple strategies, and helps readers to see the world from an autistic child’s point of view. We asked Sarah all about the book to find out more.
This book mixes poetry, science, opinion, advice and more, it’s quite difficult to categorise in a nutshell. How would you describe it?
That’s a good question and pleasing in many ways because it resonates with my view of the autism spectrum. My book doesn’t fall neatly into one category of ‘content’ and nor does autism; how autism is experienced and what it looks like varies enormously from one person to another. I’m more inclined to describe Simple Autism Strategies for Home and School (SASHS) in terms of its aims rather than its classification but – at a stretch – might describe it as a guide to autism for those who are new to the diagnosis in children. Its content is necessarily broad to portray the range of possible and personal experiences of autism in a range of situations – explaining the what and the why before suggesting the how to.
How did the book come about? How did you decide to write a book and who did you have in mind when you sat down to put pen to paper?
Anecdotally, it seems that my more ambitious projects always emerge from incidental conversations that everyone except me forgets. What one person suggests in passing leaves me with an indelible mark that cannot be erased. Working in Kenya for 12 months and cycling solo across Australia are two notable examples – to which I can now add SASHS. The book started life as a handful of poems in a pocket notebook, which soon became two notebooks, then three. The mental low I had slipped into was dissipated by the routine of writing and gave me a constructive focus. I shared the poems with two of my office colleagues one Friday lunchtime and when they suggested I write a book, the idea was simultaneously appealing and alarming! Encouraged by the phrase
1 + 1 +1 +… = lots, I worked most evenings for the next twelve months and slowly saw it take shape. The book has inevitably changed since my first draft, but my aims have not. What I wanted to write was something that would be relevant to parents and staff in schools – helping them not only understand autism through the eyes of the individual, but to learn how to translate this understanding into physical practice. I hope that I have achieved some semblance of this.
Can you tell readers a bit about your background, and how you came to be interested in autism? What do you do day-to-day now?
In the introduction to my book, I say that my initial encounters with autism began after my graduation, when I started working in a community home for adults on the spectrum, but I don’t say how that experience came to be. In fact, I had already gained my first impression of autism as an undergraduate, evaluating an intervention programme focused on a primary school child. Her behaviour and response to the therapists was fascinating and compared with nothing else I had seen in the classrooms of my teaching practice. So, when I finished my studies and saw a job advert mentioning the word autism, I instinctively knew that this was going to be the first step in my career. Since then, I have assumed different roles in educational spheres, meeting children of all ages in mainstream, specialist, independent and international contexts – but always with a focus on autism. There’s never been any doubt that there wouldn’t be. Autism is something I’ve always been drawn to and feel the most connected to. Whether that has something to do with my own autism diagnosis, I’m not sure, but I do know that I have a better understanding of people with autism than those without! More recently, I have gained experience of working with children under five and spent many hours talking to nursery staff and parents. The heterogeneity of our pre-school environments is increasing year on year and the implications of this have inspired my return to higher education. I am in my first year of a PhD in Education and thrilled to be back in an academic environment. It’s been a long time. My last period of study was more than ten years ago!
Some of your chapters are on quite new topics of discussion within autism, such as PDA, women & girls, mental health, etc. Do you think our understanding of autism has improved in recent years? Do we still have a long way to go?
The amount and breadth of information available on autism today is incredible. We do not need to look very far to find a source that is related to a specific age group, topic of interest, level of expertise or particular format. There are professionals, organisations and services dedicated to the field and a multitude of qualifications and training available for those who want to formalise their knowledge. Topics that we knew relatively little about a decade ago have become key talking points, there are a wealth of options to pursue in terms of interventions and approaches. And of course the diagnosis itself has changed. So our knowledge base has most definitely improved but there are still avenues to be explored or covered more comprehensively. Early childhood autism, PDA, female pattern autism (a phrase I have borrowed), mental health, gender identity, sexuality, employment and ageing; these are topics that immediately spring to my mind, for instance. Plus, there is the ongoing query as to how the information is accessed and utilised; the extent to which knowledge is translated into understanding and practice is less certain. There is a long way to go but I don’t see the challenges as unusual or insurmountable. Maybe they are to be expected. The richness and diversity of profiles on the autism spectrum means that there will always be a need to learn more and to try harder – efforts that I hope all of us can aspire to make, within or without autism.
What would your advice be for parents who are in the process of getting or have just received an autism diagnosis for their child?
I suppose it’s human nature to want to offer an opinion on something and to give another person advice, but in this particular area, I would be very cautious. Autism affects individuals and families in vastly different ways and so any guidance and support should be situation and person specific. Based on my own experience and experiences, however, I might suggest the following – in no particular order:-
- You are are not an ‘autism mum’, you are a mum who has a child with a diagnosis of autism. See yourself and your child as individuals – let autism underline you but not define you (Instead of ‘mum’, you could equally insert ‘dad,’ ‘grandparent,’ ‘sibling’ etc)
- Look after yourself so you can look after your child. It’s likely that you will want to do everything humanly possible to make sure your child is happy and therefore be reluctant to let other people help or guide you. Recognise your strengths but also know your limits. We are not always at our best, we do not always do our best and that is ok
- Anticipate an emotional response to the diagnosis even if you were expecting it or had been seeking one. And expect these emotions to fluctuate and change over time. I have run the course of relief, grief, anger, frustration, denial and depression since my diagnosis – and will occasionally return to any of these depending on how things are in my current situation. Two years on, I think I am moving mostly towards an acceptance of me just being me instead of trying to rationalise my diagnosis (it’s still work in progress..!)
- Share the diagnosis with your child at the right time in the right way. As I see it, knowledge of who / how we are helps us develop a sense of self, which later provides a context for understanding other people. A positive sense of self should mean a greater belief in oneself and higher levels of self-esteem. I have learned the hard way that if you don’t like or understand yourself, then it’s very tricky to develop positive relationships with others
- Remember that everyone has a starting point when it comes to understanding autism; that what you know now will probably be infinitely more than the lay member of public who misjudges or misinterprets a moment involving your child. In this instance, you are the one who is more informed, more insightful – and hopefully more tolerant. It’s easy to become upset by critical bystanders but we should be heartened by a wealth of experience that exceeds theirs, and emboldened by the fact that our responses have the potential to lead the way and change opinions
We’ve are in the midst of world autism awareness day/ week/ month at the moment.
Many members of the public are aware autism exists but have little understanding of what that actually means for autistic individuals. What actions do you think would help to increase awareness and understanding?
I wonder if this statement provides some measure of the progress that has been made already – that we are now shifting our goals because many people have at least heard of autism and can use the word in conversation. Use of the word, though, does not equate to understanding and endorsement. Many people, for example, still think of autism as a condition of extremes – where individuals are either severely affected or seriously gifted – and consequently fail to recognise or consider the full range of autism profiles. Elsewhere, we can still read descriptions of autism (negatively) as something that is complex and variable, with emphasis on its limitations and ‘challenge’ to others. Information may have increased awareness but it has not necessarily improved people’s understanding of or response to autism. One of my suggestions therefore would be to focus on the language that is used to discuss autism:-
- Providing a more comprehensive picture of autism profiles – so that diagnoses in those with subtler presentations are not missed, better understood and better supported
- Using terminology that is accurate, balanced and person-centred – so that people can relate to autism in a more realistic, constructive and positive way
- Increasing conversations and experiences involving people with and without autism – so that relationships and interactions are accepted as everyday occurrences without stigma or prejudice
What are the most valuable lessons you’ve learned from the autistic people you’ve worked with over the years?
Probably the most important lesson I’ve learned is one that I can apply to myself as a professional and as an individual. This is the realisation that satisfaction is greater and more pronounced when considering the smallest steps of progress, for these are likely to have taken the most time to develop with the most exertion and greatest consideration. As a professional, I feel far greater joy when a child masters something that has taken weeks or months to learn rather than something s/he has accomplishes immediately. Instant success is obviously pleasing but not as powerful as that which has involved a sustained period of effort and commitment. It’s something I try to apply to my personal life too – to recognise that success should not be about comparing myself with others and their timescale of achievements but about the progress I make in my own way and in my own time.
Where can people find out more about your work and the book?
Now that my book is on sale, I’d love to hear what people think of it and about any of the strategies they’ve used. SASHS readers can contact me using the email address provided on the ‘Contact the author’ page at the back of the book. Alternatively, if people are interested in my PhD research on early years education, autism and inclusion, then they are welcome to drop me an email at edslc@leeds.ac.uk. The book is for sale on the JKP website, or anywhere else that you buy books.
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