We caught up with Catie who runs DiaryOfAnImperfectMum.com. It’s an excellent blog about family life and parenting, with advice about autism, tips and reviews.
When did you first realise your son had autism and how did you find out?
A rather abrupt nursery teacher told us our son was … like a special needs child … at age 2 ½. But we had also noticed things at home. He never really pointed at things, he was quite floppy, his play was very different, he lined things up. He hated having his hair cut and would wander away from us when we went out.
How did you feel when you found out that your son had autism?
A real mixture of emotions. First, relief to know we weren’t going mad and there was something. Hope because he was diagnosed early and I had heard that early intervention was key. Yet I was also scared as I had no idea what the future would bring.
Did you know what help was available to you when you first found out and where did you first turn for help?
Quite simply no! The centre where he was diagnosed told us he was too young for therapy from a psychologist, so we had no idea what to do. I asked my GP and the health visitors. We were referred for speech therapy and physiotherapy.
What advice would you give a parent who suspects or has just found out that their child has autism?
Don’t panic! Always focus on your child and not the diagnosis.
What exactly is autism? Did you know what it is when it was first diagnosed?
I am a primary school teacher and had worked with children with Asperger’s syndrome so I had some understanding of autism through my work and training.
Autism is a lifelong developmental disability which affects how people communicate and understand the world around them.
How does autism affect your son’s everyday life?
My son needs help with planning and organising himself. He is in a ‘normal’ primary school but has an assistant. We use visual cues to remind him what to do e.g. in the shower (or he would just stand there and not wash) to flush the toilet (he often forgets) or to tell him what is happening that day. He likes structure and organisation and needs to know what is happening to feel safe and less anxious. We use visual timetables especially in holiday times.
He has intense interests e.g. computer games but finds it hard to play with toys in a creative way – he doesn’t play with action figures, Lego hurts his fingers. He has motor skills problems so finds sports challenging, he also struggles with buttons, laces and cutlery (he is 9).
Although he has friends, he can sometimes find it hard to know how to respond in social situations, he misunderstands figurative language and cannot always read people’s emotions. It can be very difficult for him to fall asleep.
How does your son’s autism affect your everyday life?
Most of the time it doesn’t, we don’t see it because the things we do to support him are just part of our life but there are scary times when all I can see is his autism, when I lose sight of my son. Then I need to take a step back. Special needs parents are not perfect and riding the autism roller coaster can be hard!
What are the biggest challenges facing you, your son and your family with regards to your son’s autism?
The biggest challenge for me is the lack of support. I think parents are put under a lot of pressure to coordinate their child’s care, be their advocate and to essentially become the expert. My biggest worry is that we are making the right choices for him and what his future will be.
What has been the greatest help for you, your son and your family in overcoming these challenges/in living with your son’s autism?
School: we found a really good school and have had amazing support from them. We had parental support from a psychologist to talk about our worries and concerns – this was fantastic! Starting my blog: The Diary of an Imperfect Mum. Writing about our journey has been really cathartic for me and it is great to link up with other SEND parents and follow their stories.
What’s the main bit of/the best advice you’d give any parent who has a child with autism?
You are the expert, as you are the one that really knows your child. Don’t let people tell you what your child is capable of – be ambitious! Push them to achieve, they will surprise you.
I can see from your blog that you love #autiquotes, or quotes about autism. What is your favourite quote you’d like to share with other parents?
I love quotes and I wanted a way to reach people to try and challenge the stereotypes about autism and raise awareness so I started writing Autiquotes: Quotes about Autism. My favourite is:
What does your son’s future hold for him? What hopes and wishes do you have for him?
We try not to look too far ahead. My big lad has surpassed all of our expectations. All I hope is that he is happy, that he continues to learn and that he finds someone who will love him for the funny, kind, clever, amazing person he is.
Which stereotypes around autism do you find most untrue, upsetting and/or unhelpful?
That autistic people are loners who don’t want friends. That they don’t show empathy or love. That they are either non-verbal, low intelligence or rain man with nothing in between. That autism can be miraculously cured.
People need to remember the saying; So you’ve met one person with autism then you have met one person with autism. Everyone is unique!
I think that the media feeds stereotypes as they focus on extremes. The ‘normal’ everyday story of living with autism is not newsworthy. I would like to see more positive representation of autism and autistic people to provide my son and others with autism with great role models.
On your blog you say, “When I tell people my son has autism, most people ask me the exact same question; Does he have any friends?” How does this make you feel?
I understand why people ask this, I think they are really asking; Is he OK? A lot of people say but he’s not that bad though or he looks normal. I don’t think people really know what to say but feel like they have to respond. A better response is and how does this affect him or so what do I need to know?
Generally, what have you learnt about parenting, life, people or children from your experiences as a parent of an autistic child?
Becoming a parent does not come with guarantees. We need to accept our children for who they are and love them unconditionally. We need to trust that in the end we will all arrive at the place we need to be. Our experiences are unique and it is how we choose to respond to them that will define us. I am determined that we will enjoy the ride!
FamilyPoint Cymru would like to thank Catie for her time and once again point you in the direction of her blog. If you’d like info on what support there is for children with autism in your area, head to your local Family Information Service. Alternatively here are some charities and organisations that operate in Wales:
- Autism Wishes
- Contact A Family – Wales
- National Autistic Society Cymru
- Young Minds’ autism info for parents
- AWARES – the All Wales Autism Resource
- NHS Direct Wales’ Autism spectrum disorder info
Finally if you’d like to have your say on FamilyPoint, whether as an interview or writing your own article, please drop us an email on firstname.lastname@example.org.