Autism - a parent's perspective
It took six frustrating years to get a diagnosis of Asperger's Syndrome for Claire’s eldest son Jack. Here Claire describes how her son’s autism affects the whole family, and offers her personal tips and resources for other parents.
It took six frustrating years to get a diagnosis of Asperger's Syndrome for Claire’s eldest son Jack. She says the diagnosis was “like all the lights coming on at once”.
In this frank and revealing interview, Claire describes how her son’s autism affects the whole family, and offers her personal tips and resources for other parents.
Q1) What symptoms gave you your first suspicions that something was wrong?
When Jack was about 16 months old and his little brother was born, he had absolutely no interest in him at all, not even jealousy which I thought was a bit strange. I’d have been happier with a bit of sibling rivalry! Jack didn’t take much notice of his brother at all until Jack himself was about three years old. In fact, he shunned all human company, and particularly disliked being cuddled or petted which upset me quite a lot at the time. I just wanted to cuddle my son and he pushed me away! He also avoided eye contact and was more interested in inanimate objects than in people.
Q2) Why did you decide to get a diagnosis, and how did you go about it?
It took six and a half years to get a diagnosis for Jack. From the very beginning, no one listened to my concerns about my son or took me seriously - not my health visitor or GP, despite repeated visits. It was only when he started school that his teacher approached me and told me about Asperger’s being a type of autism that I began to look into it. It was she who referred him to the SENCO and the ball started rolling.
See National Autism Society information sheet How can I get a diagnosis for my child.
Q3) What was the diagnosis experience like?
Getting a diagnosis for Jack was like all the lights coming on at once. Suddenly there was all this help and information where before there had been nothing. I had been completely in the dark. It was also a great sense of vindication - I had been right all along! But this feeling of success was masked by the bitterness I felt that I had not been listened to, that I had struggled for years when the professionals, the very people who were paid to help, had failed us. Jack could have had help much sooner and some of his behaviours could have been addressed much more successfully if the correct interventions had been applied earlier.
Q4) How did you and your children initially react to the diagnosis? Have your feelings about autism changed over the years?
Jack still doesn’t understand the implications of his diagnosis – I don’t think he is ready to take it on board. Interestingly, his six- year-old brother has a much better understanding of what it’s about. We talk about Jack’s autism quite a lot, share books about it and things like that. My understanding of ASDs has changed dramatically. I see everybody’s autism is different, not fixed like Down’s for example, and it affects each individual differently.
See National Autism Society information sheet Basic Guidelines for parents of a child with ASD.
Q5) What were your next steps, did you have to make any changes to your child's lifestyle, routine or diets?
From the moment that I started to read about Asperger’s traits, I started to try and give Jack whatever I could to improve his potential. Jack needs routine and stimulation. He is a very active child with loads of energy so we do lots of clubs after school. He knows what he is doing from day to day and the structure helps us all. I’ve focused on solitary pursuits for him as he’s not much of a team player and activities that help to develop his gross motor co-ordination so he does swimming, diving and karate. He’s developed an interest in playing chess which helps improve his natural talent at problem-solving. He is also active in the Scouting movement, which develops his socialisation and sense of self-worth.
See National Autism Society information sheet Autism in the early years.
Q6) What about you? Has your life changed and do you feel supported through this change?
Bringing up any child with a disability is hard. All parents want their children to succeed – parents of disabled children are no different in that respect. We just have to work much harder to help our children achieve their potential and that involves changes, adaptations and sacrifices that parents of ‘normal’ children may not necessarily have to make. For example, I decided to give up my job as a primary school teacher so I could devote more time to my children and their individual needs. It’s a sacrifice that has paid off at the expense of my career – I now have a night job in a supermarket instead. But I’m there for my kids. My support comes from seeing my children succeed and being happy.
Q7) What about your family? How does living with two autistic children impact upon their siblings and your husband?
It’s really hard for ‘outsiders’ to understand what it’s like living in an autistic family – the impact of having autistic children has affected all of us. When I joined NAS and started reading literature about autism, I soon started to make connections with some of my husband’s behaviours and particular oddities. I believe there is a very strong possibility that he may also have Asperger’s syndrome but he doesn’t want to look at that as a possibility. He has in fact just recently left the household because it’s all proven too much for him. But there is excellent support from self-help groups, parent support networks and of course NAS. There are even sibling support groups which we’re hoping to become more involved in this year.
See National Autism Society information sheet The impact of Autism on the family.
Q8) What advice would you give to a family who are about to go through what you have gone through?
Put your children first and try to give them what they need. It’s really hard work but if you start early your children really will reap the benefits and you will see their lives improving. Join NAS and any other support groups, even if you think you know it all already! I think it benefits my family to know that there are other families like ours, especially for my non-autistic son. Talk about autism both within your family and outside of it. I believe I have a duty to help educate the ignorant about autism and the best way to do that is to share our experiences, strengths and hope with others. Living in an autistic family can actually enhance your life and makes you realise strengths and qualities you never knew you had!
Find out more
- The National Autistic Society has a wealth of information and support for people with autism and Asperger Syndrome, their parents and carers.
- Rayven's Rants is an excellent blog which answers some common questions from parents.
Books for Parents:
- Asperger's Syndrome - Tony Attwood - THE definitive guide for parents and carers written by one of the leading and long standing experts in the field.
- Siblings of Children with Autism, a Guide for families - Sandra Harris and Beth Glasberg. This book was very useful in meeting the needs of my neurotypical child and helping me to see how having autistic brothers impacted on him.
- The Other half of Asperger Syndrome - Maxine Aston - A very useful book. ~An excellent guide to living in an intimate relationship with a partner who has Asperger's syndrome.
- Can't Eat, Won't Eat - Brenda Legge – Useful book, with practical methods to solving autism based dietary issues.
- Asperger's Syndrome in Young Children - Laurie Leventhal-Belfer and Cassandra Coe - A developmental guide for parents and professionals - includes a useful summary of early childhood development stages which you can use to help monitor your child - one to use against unhelpful professionals!
- Asperger Syndrome and Difficult moments - Brenda Smith Myles and Jack Southwick - Practical solutions to tantrums, rages and meltdowns - THE book to have! It's all in there and all situations are covered!
- My Social Stories book - Carol Gray and Abbie Leigh White - If you decide to use social stories with your child, this book is a must.
Books to help children:
- Huge Bag of Worries - Virgina Ironside - Helps to encourage children with the benefits of sharing what's on their minds.
- Tobin Learns to make Friends - Diane Murrell - How to play fairly, take turns and share.
- Play with me: Including Children with Autism in Mainstream Schools - Isabel Cottinelli Telmo - For older children, helps explain what Autism is all about and its effects.
- My Brother Is Different - Louise Gorrod - A favorite with my 'normal' child. Very simply explains the affects of Autism.
- Able Autistic children: children with Asperger's Syndrome: a booklet for brothers and sisters. - Julie Davies - For older readers or reading with an adult.
- Parent's Guide to Autism: You’re familiar with the term, but how does autism actually affect a child? How can you tell if your child may be autistic? And what should you do if you see the signs…?
- Behaviour and Discipline issues for children with Autistic Spectrum Disorders: Children with Autism and Asperger's Syndrome have unique behaviour issues... the National Autistic Society has some simple and effective strategies for dealing with behaviour at home and in public.
- Supernanny Blog: Dawn Prose: Dawn gives the lowdown on family life with her eight children, two of whom are on the autistic spectrum. Take a peek at her daily routine as mum, chauffeur, nurse, teacher, hairdresser, accountant, agony aunt... and now blogger...
- Autism - one Mum's story: Wonder Mum Dawn Prose is mother to eight children, two of whom are on the autistic spectrum. In this interview, she describes the process of diagnosis, treatment and support for her children – and the relief of having a ‘label’ for her children’s behaviour.