THIS LIFE WAS NEVER IN THE BROCHURE

If you know one person with autism… then you know one person with autism. Every autistic person is different. Thousands of families around the world live and struggle with severe autism. This part of the spectrum is little known, even less talked about, and almost never portrayed in any media.

Nadine Honeybone, Founder and CEO of award-winning UK charity, Autistic Minds, talks frankly about her life caring for her son with severe autism and profound multiple learning disabilities. Determined to make severe autism better understood, this is her first book to raise awareness and provide much-needed support for others.

From negotiating the ‘system’ for sixteen years to making the hardest decision of her life for her son, in This Life Was Never in the Brochure Nadine shares her unexpected journey, warts and all

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Why isn’t anyone talking about severe autism?

Probably not an easily consumable topic for the general public. It’s real. It exists. Thousands of families around the world are living with it daily.
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More importantly many autistic children and adults are disabled by it and suffering because of it daily. I know we should never use the word ‘suffering’ when talking about anyone with the diagnosis of autism. However severe autism is different and does cause people to suffer. Autism is a diagnosis that is shared by a huge spectrum of abilities, disabilities and differences. I use the word ‘severe’ only to describe the severity of the challenges faced by those that have this particular presentation of autism.

I know and I work with many adults that have the diagnosis of autism. They are amazing human beings all of them, all different and all unique in their take on the world. I understand their pride and I appreciate their abilities. I also understand their challenges and work every day to understand more. They are my teachers. ‍None of the colleagues I work with though depict the autism my son has. He is an adult with no communication tools at all. Non verbal and has no capacity to make his wants and needs understood. He is reliant on his team of care staff to do almost everything for him, from his personal care to every aspect of living.

Nothing I have seen in any media has shown me this other world in which severe autism exists. Nothing to watch that I can relate to and know that others can understand it is happening. Nothing to tell me that the general public get it and will be accepting of my son in this world.

Inspirational

“An exceptional book ! Even if you don't have a child with Autism, you should still read it as the book communicates truths applicable to everybody.”

A heart-rending read

“An honest insight into one families' experiences of autism.

Bravely authentic, emotional and heart-rending”

What a story!

"Thank you Nadine for your ever wavering honesty in your story. I loved every turn of the page. As hard a read as it was, it was your love for Tommy that shone through!"

Amazon best seller

To enquire about Nadine speaking at your event, please get in touch

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I’ll never be able to look at jelly again without feeling love!

“Beautifully written, insightful and informative, thank you for sharing with us your life with Tommy. I felt the love you share on every page and your honesty brought me to tears more than once.

You also gave me hope, for a future that at times can seem so bleak, it gave me comfort knowing that there are positives to look forward to ❤️”

Broke my heart and mended it a few times

“So many takeaways from this beautifully written story. I admire Nadine for her ability to look at things also from a philosophical point of view, which must be difficult through all the pain. Her compassion and love for her son out of this world and we all need to take a page or two out of her book (literally) on healing. I also related to Alun’s experience of finally getting the bicycle out of the box.”

Heartbreaking & Hopeful

“Everyone needs to read this book regardless of whether they have a child with autism or not. Nadine has given us an insight into her families life and shared the struggles they have faced as a family in their fight to care for Tommy.

Beautifully written, this book was an education and a powerful lesson in the importance of fighting for what you need and looking after yourself.”

About the author

I’m a Mother to one very special child, Tommy, who I had when I was 40 after many struggles with conceiving and on our third IVF attempt. I am also a wife to Alun, who has journeyed with me and is thankfully still my husband.

My motherhood journey has not been typical. Tommy lost all development at 15 months and had an early diagnosis of autism at 2, then a learning disability later on. After the diagnosis I went online and researched the internet. I found a website near the top of the search list which said I needed to buy this product from America to help cure him. Who was I to know what was true and what was misinformation. I learnt the hard way about what’s out there to help and guide parents in their journey with autism.

I connected with other parents who told me “There is no help at all”, but I looked and found some and started putting them on a spreadsheet which grew quite large. I then decided to share my research and launched The Autism Directory in September 2010 which became a registered charity in September 2011. It’s now quite an organisation after a name change and I continue to be the CEO of the award winning charity, Autistic Minds.

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Broke my heart and mended it a few times
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“So many takeaways from this beautifully written story. I admire Nadine for her ability to look at things also from a philosophical point of view, which must be difficult through all the pain. Her compassion and love for her son out of this world and we all need to take a page or two out of her book (literally) on healing.

I also related to Alun’s experience of finally getting the bicycle out of the box.”

Well-written, honest, with moments of dark humor and lots of unconditional love

“I bought this on the recommendation of a friend. I only have limited experience of the subject but the title intrigued me and I was not disappointed. For me, this book is many things; it's a family's story told very well, it's also a critique of how we support the individual and the family of someone with profound multiple learning disabilities, and it can also be support and advice to other families on that journey, and finally, it also challenges people like myself as to how we value and support the families, support workers and policymakers. It's well-written, honest, with moments of dark humor and lots of unconditional love.”

Think you know autism? Think again and read this book.

“This book is beautifully written and filled with both love and frustration as it takes you on the journey of a mother as she navigates an under-funded and under-educated system to provide the best care for her son; he has autism and profound multiple learning disabilities and as he approaches adulthood, difficult decisions need to be made.

Highly recommend this book. It’s not without pain. But it’s also a beautiful story of love, aka Jelly.”