Description
This accessible support guide provides practical advice for parents and carers who have an autistic child or young person. Being the guardian to anyone comes with daily struggles. However, caring for an autistic child or young adult comes with a complex set of challenges, which can feel overwhelming and isolating when you do not have the right support system and resources to meet your loved one’s specific needs.
Written for parents and carers at any stage of their journey with autism, this friendly, illustrated guide provides an accessible overview of key information and terminology with advice on all aspects of a carer’s role from diagnosis, education and healthcare to employment and ageing. Offering strategies and guidance based on personal experience alongside other lived experience stories, A Practical Guide to Autism is a go-to resource to help parents and carers make the best choices and look after their own wellbeing, as well as that of the person they care for.
Audience
Parents and carers of autistic children, young people and adults; teachers; educators; mental health and other health and social care professionals; students of these professions.
Author
Dr Andy Evans is a writer, advocator and carer to his autistic adult son. Autism and dyslexia have been part of his world for 30 years, following the diagnoses of his children who have a mixture of both. When he began this journey, Andy had no prior knowledge of autism or dyslexia but quickly learnt that the best and most reliable help and support was from those with lived experience. Over the years he has continued to support other families to help them advocate for their loved ones, and advocates locally for better services for autistic people. He contributes regularly to the users and carers groups of the Central North West London Mental Health Services and supports a local charity, MK Autism, with research and articles.
Details
Publisher: Pavilion Publishing and Media Ltd
ISBN: 9781803883915
Publication date: November 2024
Pages: 235
Content
Preface
Introduction
1. Parent or carer?
Mindset
➢ Welfare
➢ List of dos
➢ Who is the expert?
➢ Words of caution
2. Autism
➢ What is autism?
➢ Terminology explained
➢ Invisibility and disability
➢ Prevalence
➢ Origins and myths
3. Practical advice
➢ Diagnosis
➢ Education
➢ Healthcare
➢ The law, knowing your rights
➢ Ageing
4. Building understanding
➢ Reading and listening
➢ Words matter
5. Building resilience
➢ Coping mechanisms
➢ Planning
➢ Therapies
6. Lived experience
Glossary and references
Sarah, Parent –
A Practical Guide to Autism” is a wonderful resource for parents/carers of autistic people, particularly those beginning their journey.
It made me cry at times and laugh too. Obviously I know there are other parents/carers to autistic people out there, but it helps to read that directly and to know that we’re not alone. At times it was like a validation; I may think I’m failing my daughter, but actually I’m doing ok! Although I’ve understood that my daughter is autistic for many years, I didn’t know anything about it or how to support her. I had many people ignore me, some deceive me and some point me down the wrong path entirely. The author (and others like him) are selflessly helping the rest of us to better understand and support our loved ones.
This guide is invaluable to anyone starting out on this journey. How and where to access support, and understanding the law is so important, e.g. I didn’t know until fairly recently that ‘reasonable adjustments’ in school are actually the law. Like the author says in the book “the law trumps policy”. I really like the layout, how each topic is separated, but also how one thing leads into the other, along with advice and tips from his (and others) lived experience providing examples to reiterate or demonstrate his point. It’s well written, clear and easy to understand. I particularly enjoyed Chapter 5: Building Resilience. I’m probably guilty of insulating my daughter too much, but I realise I need to support her more to support herself and I hope I’ve got much better at planning!
My daughter is 13, she’s autistic, likely ADHD and OCD too. We’ve been waiting since March 2022 for a diagnosis, and it’ll likely be another two years before we get one (in reality we’ve been waiting for two years before that, but a Senco told us she’s made a referral but actually hadn’t! For the last 18mths, she has been finding life particularly challenging and at times her anxiety has taken over her with ‘the black dog’ visiting often (or gremlins as she calls it). I love the author’s “DEFCON”; my daughter is very much prone to meltdowns and shutdowns and whilst I’m still learning, I feel that I understand some of her triggers much better, so I’m able to support her when they happen but more importantly before they happen. The author also explains burnout in the best and most understandable way I’ve come across.
My only critism of his book is that he didn’t write it sooner!
To the author: Thank you for the support and advice you give. Thank you for making me think, and think differently. Thank you.