The autism wellbeing debate

by Richard Newson May 19, 2016

Jack Welch calls for better understanding of how autism can affect a young person’s wellbeing.

Improving wider public understanding of autism is an uphill struggle. In a survey by the National Autistic Society, just 16% of people with autism and their families believe the public have a clear grasp of what the condition is, despite high awareness of the name alone.

Here in lies the problem. Common behaviours like meltdowns, poor communication skills and anxiety in unfamiliar environments might be assumed as autistic traits for someone who is diagnosed with the condition, but if the public has little knowledge of what autism is, how can these behaviours be distinguished from what might be a serious underlying mental health problem?

Being on the spectrum myself, I’ve faced the challenge of being misunderstood as I grew up. I was educated at a mainstream school, so I was not always open about what the realities of having autism meant to me, seeing as my peers would probably have little knowledge of it themselves. However, the consequences of ‘bottling up’ my emotions, especially when I was targeted by bullies, meant I did not always deal with situations as I should, and would often lead to outbursts of anger or tears.

I shared these experience with a mixed audience of professionals and parents of children who were also on the spectrum at this year’s Cerebra Annual Conference. The event focused on improving mental health support for young people with autism, ADHD and other learning disabilities. As part of Young NCB, I supported a presentation alongside NCB’s Director of Research, Cathy Street, and fellow representative Kiri Joliffe.

I highlighted NCB’s participation work in engaging young people in mental health events, including last year’s ‘Growing-Up Happy’ conference and focus groups with the DfE and IPPR. These events were successful because they included participants from a range of backgrounds, rather than just those with bad experiences in mental health. They also kept the atmosphere relaxed whenever possible, with plenty of breaks and did not demand that we share personal stories if we didn’t want to.

A Q&A with the audience at the end of the Cerebra event, at times, became particularly emotive. It was apparent that many schools are failing to provide the right support for young people moving from education into employment. The damaging impact on mental wellbeing for both parents and children was all too clear.

There are efforts being made to have a better comprehension of the relationship between mental health and autism; there is strong evidence that those who have the condition are more likely than most to encounter problems. At least 40% of young people with the condition will have two or more mental health issues at some point, and might have other learning disabilities too.

Research to improve prevention services and the treatment of those with neurological conditions, was strongly supported by the personal stories shared at the conference. But within the environments which could help children and young people the most, schools and CAMHS services, there are often more signs of weakness than of effective, well-planned interventions. Most would agree with a call for change, but there are still many obstacles to putting that into action.

Jack Welch is a member of Young NCB.  To find out about joining visit:’s-young-research-advisors-group!.aspx


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Dementia epidemic hits young carers

by Richard Newson April 14, 2016

With the number of young people caring for an adult with dementia expected to rise, Emily Hamblin looks at what we know about them, and their experiences and needs.

Dementia is a major challenge to the nation’s health. With an ageing population, dementia prevalence is increasing, and with it, the number of unpaid carers. As young adults are increasingly living at home with their parents, the number of young adults caring for parents with dementia is expected to increase too.

Read our report.

There are also 40,000 people with young onset dementia, many of whom will have children living with or near them.

But what is known about children and young people under the age of 25 who provide regular and ongoing care and emotional support for a person living with dementia? Public Health England asked us to look into what is known about this group of young carers.

Worryingly, we don’t know exactly how many young people are caring for adults with dementia. There is also only limited evidence about how caring for someone with dementia impacts on children and young people, and how the needs of these young carers can best be met.

Young people caring for adults with dementia represent a small proportion of both dementia carer and young carer populations. Many do not access professional support despite being legally entitled to it. In common with many children and young people supporting individuals with other conditions, some do not identify as 'young carers' at all, so may not use young carers' services.

Dementia services also struggle to meet the needs of young people and their families. Given that the average age of unpaid family carers is 60-65, and that people with young onset dementia represent only 5-9% of all people with dementia in the UK – the focus is very much on helping older people. No practice guidance for professionals supporting these children and young people was identified in our research, nor were any tailored services or formalised networks for individuals aged under 18 supporting adults with dementia.

In addition to the challenges affecting young carers generally, young people caring for adults with dementia also have to deal with sudden mood and behaviour changes in the person they are caring for, loss of support and care from a parent with young onset dementia, and considerable strain on relationships with the person with dementia and other family members.

Young people respond to these situations in different ways. They may grieve for the person with dementia as they used to be, suppress their own needs for fear of burdening other family members, or engage in self-destructive behaviours. Whilst there can be positive aspects to young people caring for others, research shows that young carers often experience worse outcomes than their peers in terms of health, wellbeing, education and income.

Given the strain faced by young people caring for adults with dementia, statutory bodies and organisations should use and create opportunities to raise awareness about this group. Tailored information should be provided to children and young people providing care and support, and existing services should become more sensitive to the needs of families in which young people are supporting adults with dementia. Young people also need support to connect with others who share some of their experiences.

The hidden numbers of young people caring for adults with dementia deserve to get the support they need so their own lives and relationships aren’t undermined by the responsibilities they shoulder.

Read NCB's report Young people caring for adults with dementia in England.

Emily Hamblin is Senior Development Officer at the National Children's Bureau.



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Lost in the woods – training for the marathon

by Richard Newson April 4, 2016

Our epic London marathon runner Rozzie Simpson, shares her thoughts on ‘splits’, toilet breaks and saying goodbye to your toenails.

My mum, Elaine Simpson is the chair of NCB and I am so proud to be contributing in my little way to this charity that is such a vital force for good.

I’m a 21 year old medical student, studying in Sheffield. I’ve got two and a bit years left before I qualify as a doctor I’m currently taking a year out to do a research project on chest trauma. 

I’ve loved running since I was 15, but up until a year ago, I couldn’t go further than 5k. I was a heavy teenager, and carrying a lot of weight meant longer distances were just beyond me. But then I lost four stone, and to my delight, I realized I could run further than before. Every time I ran a bit longer I dreamed a bit bigger. I set my sights my first marathon: London, the best race in the world. I feel so privileged to be running it for such a great cause.

Sponsor Rozzie.

I’m four weeks out from the big day and have been training in earnest for 12 weeks. That’s 60 runs, 409 miles and over two and a half days on the road. I’ve run in every storm from Gertrude to Katie and they’ve failed to dampen my enthusiasm. Far from it, I’ve gone completely running mad. I wake up planning runs, I bore everybody to death talking about trainers and if anybody stays still long enough I insist on showing them my latest “splits” (a breakdown of the paces I’ve run for each mile).

My longest training run (21 miles) is now safely under my belt. It’s a very different beast to those 5k slogs I used to do; what was once a simple matter of lacing up and heading out now needs a whole lot of planning. You’ve got to think about hydration, nutrition, toilet breaks and routes. If you’re out running for half an hour, not very much is going to happen to you. If you’re out there for three hours or more, it becomes an adventure. I’ve got lost in the woods, scared ramblers, tried to sneak into a pub for a wee and realized its’ actually a very fancy restaurant, heard gunshots and convinced myself a passing van driver was trying to murder me to name just a few incidents.

What I’m starting to lack in the toenail department, I make up for in determination. I’m so excited that my solitary sport could help somebody else through donations, so please sponsor me. I’ll need all the encouragment I can get come April 24th!

Sponsor Rozzie and support our work with children at:




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How the law protects disabled children’s rights to ordinary lives

by Richard Newson March 7, 2016

Steve Broach, a barrister specialising in the law applying to children and disabled people, looks at how legal rights can be used to protect young people’s quality of life.

Disabled children’s rights to the support they need to lead ordinary lives are under threat.

The next round of cuts to local authority budgets will result in services for vulnerable children below the child protection threshold shrinking, in some areas almost to vanishing point. For example, Community Care magazine recently reported one impact assessment for the cuts taking place in Newcastle as resulting in the ‘increased targeting of residual services on only the most vulnerable’, including that unmet support needs will result in a requirement for more specialist services.

It is at times like the present that the law may have the greatest relevance. The law is about establishing minimums – baselines in terms of both processes to be followed and services to be provided.

When money was flowing into the system, for example under the Aiming High for Disabled Children programme in the late 2000s, the law can take more of a back seat. But when times are tough it is vital that everyone in the system understands the legal entitlements of disabled children, young people and families.

For example, the requirement to provide a sufficient level of short break care under the Breaks for Carers of Disabled Children Regulations 2011 is vital when research from the Every Disabled Child Matters campaign shows that these services are under threat.

It is in this spirit that we have produced the second edition of Disabled Children: A Legal Handbook, written by a team of specialist lawyers. The Handbook aims to give everyone – disabled young people, parents, professionals and legal advisors – clear guidance on the legal requirements across core areas such as education, children’s services, health and housing.

There are also chapters on vital cross cutting principles, including equality and non-discrimination and disabled children and young people’s decision making rights.

The Handbook begins with a chapter summarising the research on the realities of disabled children and young people’s lives.

The test of whether the Handbook has been a success will be whether the gap between the law and reality for disabled children, young people and families gets narrower during its lifetime. That will be no small task in the context of the cuts to services.

If it is to be achieved it will not happen through the courts alone. Although legal processes up to and including judicial review are vital for enforcing rights, the greatest prospect for change comes in my experience from families working together to persuade public bodies to follow the law. I know this works, both with and without the involvement of lawyers, from the positive outcome to disputes in relation to education and care services across the country.

All the chapters of the Handbook can be downloaded free of charge from the Council for Disabled Children website. Hard copies are available from the Legal Action Group.

Steve Broach, a co-author of the Handbook, is a barrister at Monckton Chambers in London. He has a wide-ranging public law practice with a particular focus on the law and policy affecting children and disabled people. Prior to becoming a barrister, Steve worked extensively in the voluntary sector on behalf of disabled children and adults.


Filed Under: Involving Young People

Fuel poverty: living in a cold home doesn’t just affect older people.

by Richard Newson February 26, 2016

Sophie Adam considers the one in five young people who live in fuel poverty.

Struggling to pay energy bills and keep warm at home is traditionally seen as a problem that only affects old people but this is not the case. The numbers of families with children living in inadequately heated homes is rising. Young parents and households headed by young people are now disproportionately affected by living in a cold home.

Approximately 40 per cent of households living in fuel poverty are couples or lone parents with dependent children. In total, 3.8 million children in England live in families that are struggling to pay their energy bills.

When we spoke to young parents about what it’s like to be unable to heat your home properly, one of them put into words perfectly how it undermines her family’s quality of life:

“No-one can understand fuel poverty unless they have lived in it. Fuel poverty is when you wake up to find you have no gas, no money and two days ‘til payday. You have to feed cold food to your children and wrap them up in coats, gloves and scarves indoors or trail them round the shops all day to keep warm.”

The consequences are far-reaching and can mean parents cutting back on essentials to keep their homes warm or being forced into debt when they cannot afford to pay their energy bills.

For a child, growing up in a home that is cold and damp can have a long lasting effect on their health, learning and enjoyment of life.

‘We are worried that our children’s health might be suffering as a result of living in cold and damp homes’

Young parent in Lambeth

The estimated cost to the NHS of treating conditions and illness in people of all ages caused or made worse by cold homes is around £1.36 billion per year.