Mother and son photo in spectrum with quote

Our Not Enough campaign demands better support and services for autistic people. Two in three autistic adults in England do not receive the care they need. We spoke to Jane, mother to 21-year-old Christopher, about their experiences of trying to get the care he needs.

Christopher is autistic and has a learning disability and ADHD. He’s really articulate, but has some difficulties understanding what goes on around him. He needs constant help to focus on any task at hand.

In 2014, we moved to Desborough, in Northamptonshire. Chris was able to receive direct payments for his support, and we were able to go to two day centres for four days a week. The centres are great, but it’s not the only support Chris needs.

Although Chris is supported on a day-to-day basis, there are no aspirations for Chris’ future or focus on what he can achieve. There needs to be a plan to help Chris live as independently as he can, but there isn’t one. When I tried to contact social services to ask them what they can do, I found that Chris’s social worker had left and nobody had told us. I’ve not had any contact from them in the last two years, and so if anything goes wrong with his support, there’s nobody to turn to. I really worry that he’s been forgotten about and there’s no safety net. If his support were to break down, I’d have to support him entirely on my own.

His care isn’t getting any better, and without a clear plan to support him to live more independently, it feels like he’s treading water. Like any person, as we get older our ambitions, hobbies and aims in life change, but Chris’ care package doesn’t reflect this and he’s stuck without a way to progress or grow. It’s not right that he’s written off, just because he’s autistic.

Over the last two years, the contribution Chris has to pay for his support has gone up. Nobody’s checked that he can afford it, and I’m left picking up the slack. I can’t leave my son to work and earn an income, so things are really tight. If this carries on, there’s no way that I’ll be able to support myself and Chris. I feel like I’m in limbo, unable to guarantee that I can provide for my child and that is terrifying.

I’ve seen both good and bad examples of support, but everything is a constant battle and the end result is such a lottery. I can’t guarantee that Chris will continue to receive the care he needs, and that is the worst fear a mother can have.

I’m trying to plan for my son’s future, but trying to fight providers and different agencies is stressful and hard. It’s only when I pause for thought, I realise that we’re so alone – and this needs to change.

We have found that only one in ten autistic people feel social workers have a good understanding of autism, and this is a barrier to receiving the care they need. We’re calling on the Government to introduce specialist autism teams in every council in England. Find out more about how you can support us here

 

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