My brother died because drug dealers took advantage of his autism. He was told he wasn't disabled enough

When Claire was at school she was “nailing it” in class, but when it came to exams, she struggled for years due to a lack of support for her disability. 

Claire Wilden, 20, recognised she had traits of autism when she was seven, when her older brother was diagnosed. She explained to the Big Issue that her symptoms were brushed off until she was 13, and even then, she was not able to access a formal diagnosis. 

“At school, there was a place you could go to if you had a diagnosis where you could get support in lessons, you could get support for any issues that you might be going through. Because I didn’t have a diagnosis, I couldn’t go there,” she explained. 

Claire’s experience is far from rare, with a report by children’s charity Coram Voice finding that children in care and care leavers with disabilities and long-term health conditions are likely to be missing out on the vital support they need. 

The report found a disparity between the amount of care leavers who have a recorded disability, and the amount of care leavers self-reporting a disability or long-term health condition, suggesting a “significant number” of these children are not receiving the support they need. 

According to a Freedom of Information request to all 153 English local authorities, 13% of care leavers had recorded disabilities, however 27% of care leavers self-reported a disability or long-term health condition.

Claire, a care-experienced consultant who has worked with children’s charities including National Children’s Bureau and Barnardo’s, said while she struggled with taking exams in halls with other students, she was not able to take exams in separate rooms as she wasn’t formally diagnosed with autism. 

“As nobody was willing to get me a diagnosis, it meant I failed a lot of exams… which was really confusing for my teachers, because in class I was nailing it,” she said. 

She claimed her social worker “fought and fought” for her to get support, and she was diagnosed in an initial meeting as having traits of autism. She was promised a follow-up meeting to test for dyspraxia, and ask some further questions for a formal autism diagnosis, however the meetings “never actually happened”. 

“Which meant that I didn’t get the support that I was entitled to, or that I believe I was entitled to, because those two meetings never happened,” she said.

Claire explained that her “amazing” social worker fought to have her take exams in a separate room despite her not having a formal diagnosis, and as soon as the accommodation was made, her grades went up. 

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Susan Lake, 26, also said she didn’t think she “received the right support” for autism and a brain injury. 

“I did try raising it with the care home and my social worker, that I needed support in school, but because I was in a separate part of the school for special educational needs students, they thought that was enough, but it wasn’t,” she told the Big Issue.

Susan explained that she knew she was autistic since the age of 11, but wasn’t officially diagnosed until she was 21. 

“That was quite a significant issue, because obviously the problem with not having a diagnosis is a diagnosis does open up doors for you,” she explained. “It meant that I didn’t get any services for autism, autism-related issues or traits, because I wasn’t diagnosed.”

Susan added that she had a “real downfall” at the age of 16, when she was put on an “independence” scheme, which “teaches residential children how to live independently” over the ages of 16 and 18, “ready to move out on your 18th birthday”.

“The moment I turned 16 was a real downfall for me as a disabled child in care,” she said. “I suddenly had to manage going to medical appointments on my own as a vulnerable 16-year-old, and I just didn’t go anymore, so my physio stopped, I missed so many vaccinations, I didn’t go for eye tests… I stopped getting my braces tightened, and I got them taken off early because I couldn’t handle going on my own.”

She was made homeless at 16 and went into temporary accommodation, which “couldn’t meet my needs” and didn’t have certain access requirements, for example the lift wasn’t turned on before 8am, despite her needing to go to sixth form at 7am daily. 

At 18, she was put in a supported living placement, which has been “much better” for her.

“I have support workers come in every day and they’re autism trained, mental health trained, and physical needs trained,” she said. “And they all know that I’m care-experienced, so they’ve all had to do care experience training as well.”

Susan said there should be a “protected characteristic surrounding children in care with disabilities”, and that if being care-experienced was a protected characteristic, it would “safeguard so many children”.

Coram Voice’s report also found inconsistencies in how disability is defined across local authorities, with “huge” variations found in the percentage of children in care who were recorded as having a disability in different local authorities. This meant that in some local authorities, 3% of children in care were recorded as having a disability, going up to 32% in others. 

The report also found that due to a “lack of resources”, there was a high threshold to reach in order to receive support, which Coram Voice said led to some care-experienced young people being seen as “not disabled enough” to receive support. 

In addition, Coram Voice stated that mental health issues including depression, anxiety, and PTSD are reportedly not included in the “disability codes” used by local authorities. 

Claire explained that her older brother was severely impacted by not being treated as “disabled enough” due to his autism, despite being vulnerable. She told the Big Issue that when he turned 18, he went from “two-to-one supported living” into a flat by himself. 

“The flats all around him were being used by drug dealers… the ones around my brother did take advantage of him because he didn’t know how to say no,” she explained, telling the Big Issue that the decision to place him in accommodation on his own “ended up costing his life”.

“He died from a drug overdose in 2020,” she said, because drug dealers had taken advantage of his autism. 

She explained that her brother “slipped through the cracks” because he was moved into a different local authority when he turned 18. She said several different teams had been conflicted over his care, and he “didn’t get the support he needed”. 

“There was a place that he could have gone to live when he turned 18… that would have been absolutely perfect for him, that would have had still two-to-one support,” Claire said. “He would have had everything he needed. But it was decided that autism isn’t enough of a disability to qualify to support with specialised living accommodations.”

“They turned them away because autism isn’t enough of a disability,” she said.

Claire explained that after her brother died, she began “campaigning for children’s rights and getting involved in so many different charities”, adding that there needs to be “new roles” appointed in social services so people don’t “fall off the care cliff” when they turn 18, and so teams are “still working together to support that young person”. 

“Because I’ve experienced the hardship of the care system in my own merit, and I’ve also experienced what it’s like being a family member of somebody who gets failed by the care system with my brother, it’s made me fight and campaign and do whatever I can to make sure that people get the support that they do need,” she said. 

Coram Voice made several recommendations, including improving knowledge and data about the types and prevalence of disabilities among children in care and care leavers. It also recommended services “be more inclusive and responsive to the needs of care-experienced disabled young people, including those who do not meet thresholds for specialist services, but whose additional support needs cannot be met by existing services.”

It added that there should be “smoother transitions from care” for children with disabilities. 

Dr Claire Baker, senior practice adviser with Coram Voice’s Bright Spots programme, and author of the report, said: “Our work has revealed significant disparity in the numbers recorded by local authorities. It has highlighted that young people’s voices are missing. 

“It’s clear that whatever way disability is measured, we are talking about a significant group of children in care and care leavers affected. Improving data and all of us being more curious about disability in our work with care-experienced young people are changes we need to see.”

A Department for Education spokesperson said: “We are committed to breaking down barriers to opportunity for all children, especially those who face additional challenges, to ensure they have support to achieve the best life chances.

“We are currently reviewing gaps in data for looked-after children and identifying ways to address them, including by updating statutory guidance so that looked-after children and care leavers receive the health services and wellbeing support they deserve.”

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