Charles and Tina Parker, parents of their autistic child Chris, have a wealth of experience in bringing up a child with severe autism. Keen to share their journey with other parents, they have published a series of “tell it as it is” books. The latest focuses on their battle to secure supported living for their son Chris.
We talked to them about the emotional and practical challenges they have faced over the past 25 years, and why they continue to campaign for a greater understanding of autism.
Tell us about your journey to diagnosis. When did you suspect Chris might be autistic?
When Chris was just over a year old, we started noticing some significant delays in his development. He was completely non-verbal, appeared oblivious to us and couldn’t even point to what he wanted. After failing several hearing tests, he was observed in a nursery setting by a multi-disciplinary team who confirmed there was no problem with his hearing but diagnosed severe autism and global developmental delay.
What did you find the most challenging when he was younger?
The constant high-pitched screaming. He would tear at his clothes and physically attack us and his brother, and he had no sense of danger and needed watching all the time so that he didn’t hurt himself or others. He was incontinent until he was nine, and up throughout the night. We were on the go all of the time, tired and exhausted – but had no help.
How did this impact family life?
It was very isolating because of what others perceived as behavioural problems. We couldn’t go to playgroups and he wasn’t invited to birthday parties. We couldn’t get babysitters. There was no going out for the day like other families did. We just went out in the car and kept driving, or we stayed at home.
How would you describe your parenting style and how it has evolved?
We quickly changed from being reactive parents to proactive parents. Once we were given a diagnosis, we made it our mission to find out as much as possible about autism and to understand what Chris needed from us. Instead of reacting to his behaviour we started to ask ourselves how it felt to be in his shoes for 24 hours. In this way autism has enriched our lives and made us better people. And we work together. Teamwork is paramount.
What other challenges did you face as he got older?
Finding the right school for Chris – and keeping him there – was a real challenge. Some (not all) schools made us feel judged and the staff weren’t interested in our views on what would benefit him. Autism is unique to every individual – as unique as your fingerprint – and we knew him best.
The most recent challenge since leaving education, has been to find suitable supported accommodation for him. It has taken us over two years but he is thriving now.
What advice would you give other parents of autistic children?
To go with your gut as a parent and don’t be afraid about pushing for a diagnosis as this will help your child. Ask for support and advice and never give up. Don’t be put off it that means confrontation. Some parents think social workers are there to catch them out but try to think of them as the “professional ambassadors” for your child.
Parents also need to know about legal deputyship. Whilst Chris is now an adult physically – he’s over six foot tall – mentally he is still a child. Since he turned 18 and lacks capacity it has been important for us to have become legal deputies for him. Without this, parents lay themselves wide open to losing control.
What do you think needs to change so that parents of autistic children receive the support they need?
There needs to be much greater understanding of how autism impacts not just the child but the whole family. Professionals need to make sure the parents are OK. No one asked us how we were feeling. Social workers, case workers and those in education in particular all need better training.
Children’s services appear to have improved but when it comes to adult care there is much that still needs improvement. It must be remembered autism poses lifelong challenges, it doesn’t just suddenly disappear.
What hopes do you have for Chris’s future?
That Chris continues to live happily in his own environment. As parents we have always dreamt of the day when he has a say in where he lives, what he does, what he wears, and what he eats. It’s amazing really what he has achieved.
According to the Office of National Statistics (ONS) in 2021, a staggering 75% of autistic adults live with their parents, compared to just 16% of disabled individuals overall. Find out more about The Parkers and buy their book here.
Read another parent’s experience of parenting a child with autism here.
