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Hollyoaks' staff have more training in autism awareness than some health professionals

 TV star Carrie Grant wants better autism training and awareness, and says nurses can help through ‘collaboration, community and curiosity’
Picture shows TV presenter Carrie Grant with her family (L-R): Talia, Imogen, Carrie, Nathan, David, Olive. She wants better autism training and awareness, and says nurses can help through ‘collaboration, community and curiosity’

TV presenter and campaigner Carrie Grant wants better autism training and awareness, and says nurses can help through collaboration, community and curiosity

  • Carrie Grant believes health professionals are the key to better care for children with autism
  • Nurses can learn from experts by experience the parents of children with learning disabilities and/or autism
  • Schools, like many NHS health and social care staff, could benefit from more training

As the mother of autistic children, broadcaster and campaigner Carrie Grant is passionate about better autism training and awareness.

The presenter of TV programme The One Show says she and her husband vocal coach David Grant welcome the advent of mandatory training for all NHS health and social care professionals on learning disabilities and autism.

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TV presenter and campaigner Carrie Grant wants better autism training and awareness, and says nurses can help through ‘collaboration, community and curiosity’

  • Carrie Grant believes health professionals are the key to better care for children with autism
  • Nurses can learn from experts by experience – the parents of children with learning disabilities and/or autism
  • Schools, like many NHS health and social care staff, could benefit from more training 
 Talia, Imogen, Carrie, Nathan, David, Olive. She wants better autism training and awareness, and says nurses can help through ‘collaboration, community and curiosity’
Carrie Grant with her family (L-R): Talia, Imogen, Carrie, Nathan, David and Olive.

As the mother of autistic children, broadcaster and campaigner Carrie Grant is passionate about better autism training and awareness.

The presenter of TV programme The One Show says she and her husband – vocal coach David Grant – welcome the advent of mandatory training for all NHS health and social care professionals on learning disabilities and autism.

‘We didn’t really know about special needs when we were growing up. As children we’d grown up with our parents saying, “Don’t look, don’t stare,” when someone was different,’ says the mother of four.

‘Our health visitor was wonderful when we told her we felt something was different’

Her daughter Imogen, 14, was diagnosed with autism at three, and another daughter, Talia, 18, when she was seven.

‘Our health visitor was absolutely wonderful when we talked to her about how we felt something was different. Talia, for example, would always need to sit at the same place at the table. She can’t be flexible, finds change very difficult and couldn’t bear foods touching each other.

‘And Imogen couldn’t bear to sit near the fridge because the noise was too loud. But the health visitor was so helpful in getting Imogen diagnosed.’

School was difficult. Since Talia achieved all her academic targets, her school was reluctant to accept that she was autistic and make changes, even with an education, health and care plan in place.

‘For an autistic person, A&E is terrifying, with the bright lights and the noise – it’s not surprising it can bring on a meltdown’

‘She felt like an alien. She ended up in hospital on suicide watch, but CAMHS (child and adolescent mental health services) wouldn’t see her, since once she was out of hospital she was no longer in crisis. The second time, they were absolutely wonderful, with regular appointments and the right medication.’

But having to take Talia to hospital was challenging. ‘For an autistic person, A&E is terrifying, with the bright lights and the noise – it’s not surprising it can bring on a meltdown,’ says Ms Grant.

It helped to be in a room rather than a ward. Encounters with doctors were difficult, too. Doctors would make observations on a child who was not making eye contact, without having read the notes, and ask ambiguous questions which people with autism find hard to understand – many find reading facial expressions difficult and need reassurance they are doing it right.

First autistic actor to land a role in a UK TV soap

High functioning autistic people may go undiagnosed and only enter the health system when another issue arises, such as depression, self-harm, eating disorders or suicide ideation.

‘Many autistic girls are brilliant at counting calories, so working with numbers is better than saying: “Love your body”,' says Ms Grant. 

'Talia is the first autistic actor to land a role in a UK TV soap [playing Brooke Hathaway in Hollyoaks]. Hollyoaks sent 200 of its production team for autism training, so they now have more knowledge than many health professionals.’

‘There have been too many young people with autism and learning disabilities dying in NHS care’

Mandatory training in caring for people with learning disabilities and autism for all NHS and social care staff in England – including nurses – is due to be piloted this year, and it is hoped this will become a legal requirement by April 2021.

‘There have been too many young people with autism and learning disabilities dying in NHS care,’ says Ms Grant.

Girls often adjust better, make more eye contact, respond better to questions

A booklet produced by the charity National Association for Special Educational Needs called Girls and Autism: Flying Under the Radar, which Ms Grant helped launch, has some telling statistics. In about 55% of cases, autism spectrum disorders occur along with learning disabilities. And while four times more boys than girls have been diagnosed with autism spectrum disorder, the condition may be far higher among girls, who often adjust better, make more eye contact, respond better to questions and have fewer repetitive ritualistic behaviours.

Some 40% of autistic children are excluded from school. Imogen Grant has now been out of school for two and a half years, and is visited by teaching assistants. ‘Mainstream schools say she’s too autistic, and special schools say she’s too academic. So she sits in her room all day. What happens if she develops depression and mental health problems because she doesn’t fit in?’ Ms Grant asks.

Many learning disability nurses 'get' autistic people and understand people who are different

She believes health professionals are the key to better care for autistic children, and would like to see better autism training in schools. ‘Two days of special education needs (SEN) training are not enough, since 17% of children have SEN, which can mean anything from children with diabetes needing help with insulin to attachment disorder or autism.’

Learning disability nurses have a special role to play. ‘Many just “get” autistic people, and understand people who are different – they’re brilliant,’ Ms Grant adds. ‘And they can explain all the acronyms, which are bewildering to newly diagnosed families.’

Nurses can learn from parents in families with learning disability and/or autism who are experts by experience

How can nurses help? ‘Collaboration, community and curiosity,’ she says. ‘David and I run a support group from our home for 140 families with high functioning autistic children, and the level of knowledge there is phenomenal.

‘Nurses should feel confident to ask parents, since we’ve been living in families with learning disability and/or autism for years and we are experts by experience.

‘And come to us with your questions – even what we call the basic ones – because once they are out of the way we can work together and start communicating about what is important.’


Carol Davis is a freelance writer

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