Understanding Autism - one Mum's story
Wonder Mum Dawn Prowse 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 boys – and the relief of having a ‘label’ for her children’s behaviour.
Understanding Autism... one mum's story
Wonder Mum Dawn Prowse is mother to eight children, two of whom are on the autistic spectrum. In this interview, she describes the gruelling process of diagnosis, treatment and support for her boys – and the relief of having a ‘label’ for her children’s behaviour.
Q1) What symptoms gave you your first suspicions that something was wrong?
My son Raenie seemed ‘normal’ as a baby, except he was a late walker (he started at 16 months). As a two year old he didn’t play with toys - he preferred things that spin at the park. My other son Paskal never played with toys either, but he would play along side other children. But Raenie would just sit with adults and not play with his brothers or other children. As a toddler he would flap his hands a lot, and it was actually a friend that picked up on Raenie’s strange behaviour, as she was minding a child who behaved like Raenie and had received some information from the National Autistic Society. She passed the information on to me and when I read the characteristics, I found I could tick most of the boxes to describe him.
Q2) Why did you decide to get a diagnosis, and how did you go about it?
The diagnosis came when Raenie started school. He had an horrendous first month, and was sent to the Headmistress for raising his voice in the drama studio because it echoed. I took him out of the school for a week and explained that I was waiting to get him diagnosed. I could not believe they were so horrid to him – the teacher clearly could not cope at all. All I could think of was this little, bewildered four-year-old sitting in the Headmistress’ office, not really having any idea why he was there. I was very cross and upset at the time.
To speed up the diagnosis I made an appointment with a private paediatrician. Even that didn’t go smoothly at first, but we finally got to see a child psychologist. She saw him a few times and diagnosed him with Asperger's syndrome/ dyspraxia.
With Paskal’s diagnosis, it has been more difficult. In fact, in the two and a half years it has taken to get him diagnosed, we’ve been told more than once that they didn’t want to give him a label. But after reading Multicoloured Mayhem I decided yes, he did need a ‘label’ to get the right help at school.
National Autism Information Sheet How can I get a diagnosis for my child
Q3) What was the diagnosis experience like?
Both diagnoses were tiring, upsetting, and certainly not straightforward. If you are not prepared to fight, you will get turned away without any outcome.
Q4) How did you and your children react to the diagnosis initially? Has how you feel about autism changed over the years?
Raenie was quite young when he was diagnosed, so he was oblivious to it. I just sat and cried and cried. I don’t know whether I cried from a sense of relief, or from wondering how he would cope as he grows up.
Paskal was diagnosed when he was a bit older, in August 2006. I was relieved for him and he was happier to have a name for his difficulties. I understand the spectrum more now, as I hadn’t realised there were different forms of autism. I am definitely more tolerant of other people with autism now.
National Autism 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?
I made changes gradually, as I had to do a lot of reading up and research on autism before I understood it. I still read everything and anything about it, to try and understand them both.
Sleeping is one of the things I have tried to help them with and we’ve made changes to deal with that in particular. Days out have to be planned and children need clear timetables.
National Autism Information Sheet Autism in the early years
Q6) What about you? Has your life changed and do you feel supported through this change?
My life has changed considerably, and it can sometimes be very stressful. Schools can be unhelpful, though I am lucky with Raenie, as his new school tries very hard help him in any way they can. So I feel supported by them and of course my family, but not so much by any one else.
Q7) What about your family? How do you think living with two autistic children impacts upon their siblings and your husband?
The older children help a lot with Raenie and Paskal, but my youngest son feels a bit unsure. He obviously doesn’t understand autism, and whilst I do try and explain it to him, he is only 11 years old himself. If Raenie and Paskal are being naughty, they get told off the same as my other children. It helps that my husband is quite laid-back and plays computer games with them. That said, my husband and I do sometimes argue because I am tired from them waking up early.
National Autism 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?
I would tell them to be positive. Make a list of your concerns, ask any questions and list your child’s characteristics. Also, try to remember and make a note of things that happened when they were younger, as specialists will ask you these things, and it’s sometimes hard to remember. Finally, don’t give up, stay informed and read as much as you can about the problems your child has. As parents you know your own child best, so don’t give up until you get a satisfactory diagnosis - even if this means months or even years of appointments.
Find out more
- The National Autistic Society has a wealth of information and support for people with autism and Asperger's 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 and 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 about 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 effects 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.
- Autism - a parent's perspective: It took six frustrating years to get a diagnosis of Asperger's Syndrome for Claire’s eldest son Jack. Claire describes how her son’s autism affects the whole family, and offers her personal tips and resources for other parents.