ICare4Autism recently interviewed author Sandy Howarth, whose book, “No Matter What” was an International Book Awards Finalist. In the book, Howarth discusses her journey as a parent coping with a child who suffers from autism and the many challenges she faced. The book is a compelling journey that not only gives us emotional insight, but serves as a kind of handbook for parents who find themselves in a similar position. In our interview, she discussed her inspiration for the book, her son Steven, and what she has learned throughout her journey.
Q. Having a child with autism is challenging, but many people do not share their story with the outside world. What sparked you to write this book? Were there challenges along the way?
Yes, autism is intensely challenging and a great number of people would find it exceedingly painful to share their story with the outside world. As it happens I used to be a deeply private person who had hoped that the UK education system would help my son. I worked with Steven at home and I allowed him to return to the UK education system, but I felt trapped at seeing the lack of progress he was making. The challenges along the way were mostly associated with dealing with the Local Education Authority. Seeing progress when I worked with my son at home demonstrated that this was the level of support he needed. I agreed to allow Steven to return to the LEA system. Seeing Steven regress was emotionally and mentally draining especially since I recognized his potential.
Q. The one thing we noticed when reading “No Matter What” was that it provides a step-by-step guide to help parents from diagnosis, to treatment, to raising a child with autism. Why did you choose to include all of it?
I chose to make my book a step-by-step guide as autism is a complex disorder that cannot be explained without covering every issue involved. I had to learn it all myself and I found that the step by step guidance would help people understand the process better. There was a stigma attached to mental health at the time of Steven’s diagnosis of autism in 1996. During this time there was very little information on the subject – learning about the subject and what it meant for the individual and the parents was quite an eye opener. Having learned it all I wanted to help other parents through my experience. The diagnosis of autism is like no other diagnosis – it is a shock that causes parent’s lives to come to a standstill.
Q. Diagnosis of a child with autism can be extremely difficult for parents to accept, what were some of the things that went through your mind?
Yes, the diagnosis of autism is tough to accept – some of the thoughts that went through my mind were – fear of dealing with a bizarre condition, fear of what the future held for my son, shame, guilt and the thought of living in a dark and lonely world rejected by society. Once I came to terms with my son’s autism I dealt with the initial concerns by confronting them. The thoughts of others were secondary to help that Steven needed.
Q. The book describes many effective coping strategies, what would you say was something you learned that was particularly successful in helping you deal with parenting a child with autism?
The most effective and powerful tool in helping my son is pure love. To give love unconditionally and focus on your child as someone who needs help. “No Matter What” places an emphasis on love and understanding in accepting and dealing with my son’s autism. Look at the child’s needs, recognize every issue that needs to be addressed and look to the future in finding the solutions. The attitude that I adopted is that my son Steven is a beautiful human being with a desperate need. I have had to develop complete mental toughness in dealing with the challenges of Autism.
Q. Your book has gained international acclaim and was an International Book Awards Finalist, surely parents with children who do not have autism have come across “No Matter What”. Do you feel it’s important for them to also read it, if so, why?
My book will benefit most parents and families. Often parents hope to fulfill their dreams through their children. My book helps focus beyond oneself to not feel self pity but to refocus the attention on what can be done to help the child with autism. “No Matter What” looks at the problem, understands the problem, finds solutions and helps deal with it. Many strategies outlined work not only with autism but with challenging behavior in general.
Q. There are many things you discuss in the book that were particularly challenging for you, what would you say was the most difficult part of raising Steven and what are some of the things you learned?
I have had many challenges but the most tiresome has been dealing with the Local Education Authority. I have learnt many things along the way but most importantly I have developed a deep understanding of the most complex and least understood of mental conditions. In gaining a strong insight into autism I respect and value the strength of all individuals on the autism spectrum.
Q. It seems that you have really dedicated your life to your son and ensuring that he makes the most progress possible. What is your advice to parents who are going through what you did and what you continue to go through?
My advice to parents is to be grateful for the beautiful child you have been given “No Matter What” and you will find the answers to coping, living and the ultimate joy through the love you show for your child.
Q. With the success of “No Matter What” many of our readers are eager to know if you plan on writing more, do you have any other projects lined up- writing or otherwise?
I am currently involved as a founder of the “ACT NOW” Campaign. This campaign highlights the challenges faced by families with autism in the United Kingdom and looks to receive 50,000 signatures on a petition to take to Downing Street with the hope of stressing the effect of the proposed cuts to services for families with autism and other disabilities. My main plan is to teach Steven. Writing another book is not possible as writing “No Matter What” was an emotional journey, which I wouldn’t want to relive. I prefer to focus on the positive and I hope that when I ultimately get a chance to pursue my passion for painting that I will once again be able to convey a positive message.