As a mum of four boys with autism, Sarah Ziegel has turned her experiences into a practical guide
What are the chances of having all four children with the same severe form of autism? We don’t know exactly, but it’s safe to say that any such family would be almost unique.
And yet, that is exactly the case with us. We have four boys, all of whom had been diagnosed with the non-verbal, no-eye-contact kind of autism by the age of three; the kind of autism which changes utterly the life you expect your children to have.
Hope, however, burns bright. I am often asked what has had the greatest impact on the fabulous progress my boys – Thomas and Benjamin, who are now 17, Hector (15) and Marcus (8) – have made over time: from non-verbal at three to the young people they are today, enjoying their lives, talking, mixing in society and able to do things that seemed impossible in their faltering early years.
Key to it all is that we never accepted that they wouldn’t progress, and we have spent the past 17 years doing everything possible to maximise their potential. ABA – applied behavioural analysis – was vital: 35 hrs a week from age three, alongside mainstream inclusion at a wonderful local primary school. The programme is individualised and covers communication. In our case, that meant teaching the boys to speak one word at a time, addressing negative behaviours – of which we had many in the early days – play skills, social skills and daily living. Everything, in fact, that a non-autistic child would learn naturally. With autism, it requires careful and intensive therapy by trained tutors on a one-to-one basis to ensure that the learning occurs.
In addition, we have always included our boys in mainstream life. Initially this meant autism-friendly cinema showings and autism-friendly theatre, which we still attend. Slowly, however, we introduced them to noisy, highly stimulating sensory environments and these days they can go anywhere happily.
Never give up hope of improvement: predictions are there to be defied. Autistic or not, we are all capable of acquiring new skills at any age. At 17, our older boys are still learning new language, and all four are as determined as we are that they should make the most of their lives. We now have a seriously fast runner and artist, a drummer and all-round musician and a keen YouTube filmmaker on our hands. The youngest is also doing well, though we don’t yet know where his talents lie. None of our quartet is defined by his autism. And while language limitations preclude the possibility of taking GCSEs, that only hardens our resolve to help them succeed at the things they can do.
I have now written a book, drawing upon my years of experience to offer practical help and emotional support to parents in a similar situation, as well as explaining how and where to find further assistance. I believe that we can do so much to help children with autism and that no one should put limits on them. My hope too is that the book will provide insight for those who know little about this condition and, perhaps, dispel some of the myths that surround it.
So, if you see us out and about in Sheen or in Richmond Park – the family with four big, noisy, very active boys making a statement wherever we go – please don’t feel sorry for us. We are enjoying our lives to the fullest.
- A Parent’s Guide to Coping with Autism, by Sarah Ziegel, is published by Hale and available in Waterstones and online
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