Families in poverty are facing extreme difficulties and need benefits support - Carlie Brough

What this experience did was inspire me to set up Autism Hope Sheffield six years ago, through the Parson’s Cross Initiative in the north of the city. Autism Hope is a parent-led support group, with one main goal: to connect other parents who have children with autism spectrum disorder.

The group was born out of a desperate need for connection and understanding, both of me as a parent and of my beautiful son. Isaac was two when he was diagnosed, after showing profound regression at eighteen months. This began our journey in the world of autism. Seeing your child regress and lose skills they have previously held is incredibly frightening for a parent. My once sociable and happy infant became extremely anxious and lost in his own world, with me unable to reach him.

Group members support each other, but there’s still an isolation and a stigma you can feel. There are parents who can't work, because they've got a child with severe anxiety. They've given up their jobs, and they're living in poverty and with the judgement that goes with that.

This week is Challenge Poverty Week, a chance to speak up about the systems and structures that hold many people back. When we talk about poverty, families with additional needs are often an overlooked group.

I consider myself one of the lucky ones in that the severity of Isaac’s autism meant the diagnosis took less than twelve months. However, those twelve months were incredibly difficult and frightening. Parents are facing this every day and unfortunately the wait for diagnosis is now years rather than months.

So, what needs to change in society, to support children like Isaac and families like mine? Firstly, many schools could do more to accommodate the adjustments that would help a child's ability to have a successful mainstream education – such as allowing a child a start time five minutes before or after their classmates, or allowing them to eat in a separate place.

Secondly, more should also be done to support parents to access specialist provision where appropriate, and more investment is needed. Many parents’ applications are turned down because of the shocking lack of places in schools, or on the basis that the needs of the child cannot be met. If a specialist provision cannot meet the needs of the child, then where will they access the education every child is entitled to?

Thirdly, more support for mental health for children and parents should be a priority. A child shouldn’t have to wait months – sometimes even years – to receive much-needed counselling and therapy. Anxiety, depression, and self-harm are common with children with autism and the waiting time is devastating to a parent at their wits’ end, trying to keep their child safe. Parents may have to give up work as they need to be full time carers, and this affects the family's finances dramatically.

Financially, more should also be done to support parents to claim carers’ allowance, disability living allowance and other state benefits, and these benefits must be increased, to reflect the financial insecurity and extreme difficulties families face. That is what is at stake when we talk about poverty and benefits.

Carlie Brough, co-founder of Autism Hope Sheffield, took part in the Archbishop of York’s recent roundtable discussion on tackling poverty in Yorkshire.