Autism Acceptance Week is here and the message is clear, no one should feel judged for being autistic or have to wait many months or even years for a potentially life changing diagnosis. Yet, families in West Berkshire can have a three year wait to access the Children and Adolescent Mental Health Service to get a diagnosis for their child and much needed help and support, bringing many families to a crisis point.
This case study shows how Home-Start’s Resilient Families Project is here to help. We help families to adopt a positive parenting approach, supporting them to reflect on incidents that happen and to observe where and when these behaviours occur, finding possible triggers. It is a very personal service, that identifies parenting strategies that work for their individual child, recognising the importance of having routines, boundaries and rewards to create positive relationships and consistency.
Sarah*, was referred to us in May 2020 when her son Archie* was 5 and his new sibling was just weeks old. At our first call, mum shared how her son’s behaviour was affecting their family life. Archie seemed to have a good understanding of the world around him for his age but he was often repeating back what had been said and he didn’t always understand the context. His short term memory was poor, but he could remember things from a long time ago and usually things you would rather he didn’t like a dead deer on the road. He showed no understanding of emotions. His sleep was poor and his behaviour was unregulated, he was unable to control his anger.
At breaking point, the family paid thousands of pounds for private assessments and Archie was diagnosed as autistic. Sarah described the experience, “£750. That’s how much we were told for an assessment and subsequent diagnosis, if applicable. It was simple. Fill in these forms, we can fit you in next week. Sorted! Except the £750 turned into nearly £2,500. All on a credit card. Because we had no other option. We were beyond desperate.”
Sarah needed emotional support so aside from help with parenting strategies we kept regular contact so she could have a safe space to discuss the reality of their situation. She needed help liaising with the school who were also struggling with Archie’s behaviour after periods of lockdown. Finally having a diagnosis meant Archie could have Education, Health and Care Plan and regular support on a one-to-one basis.
Bedtimes were difficult so Home-Start provided resources to support their evening routine including a bedtime checklist and strategies on what to do if Archie couldn’t get back to sleep. Sarah also learnt how to defuse the escalation of heightened emotional outbursts and not to focus on the consequences but just on calming down. Sarah acknowledged “I just need help in making him realise how wonderful he is and how to manage his emotions.”
When parenting strategies were in place, mum had the ongoing support of a volunteer to give Sarah a listening ear and some time to herself. At the end of support, she reflected on the difference Home-Start had made, “Having someone listen to me and our struggles and just get it was invaluable. I have felt judged so many times because of Archie’s behaviour or my parenting.
“Going through the motions of strategies with support really helped. Support to implement resources that will support a happier home, e.g. labelled draws, tick charts and visual timetables etc.” Finally, she added that what made the difference was “just feeling heard and that I am not losing my mind”.
At Home-Start, we celebrate neurodiversity and help parents to see the incredible little person behind the meltdowns. We are delighted that our project has received another two years of funding from West Berkshire Council.
Grace Green, the Home-Start West Berkshire Director said “this project has helped so many families to understand what their children are trying to communicate and support them with strategies to help reduce triggers. It has brought peace back to many households and we are pleased we can continue to do such vital work.”