When Robbie Hallam was diagnosed with an autism spectrum disorder, it answered a lot of questions for his mum, Emma. With support the family is now working together to help Robbie develop his communication confidence. Bristol Community Health meets the Hallams.

A debate is afoot in the Hallam family about which household chore is most fun. “I like polishing,” says Sian (9), waving her yellow duster above her head with a grin. There are some further discussions about the pros and cons of hoovering, and with that Sian, her twin brother Robbie and sister Catrin (12), thunder happily up the stairs.

It’s a bright, bustling family scene, but as mum Emma curls her feet up underneath her and tells me their story, it has been a difficult journey.

A year ago, Robbie, then eight, was diagnosed with an autism spectrum disorder (ASD) by the South Gloucestershire Autism Spectrum Assessment Team, which is part of the new Community Children’s Health Partnership (CCHP).

Having the diagnosis and the support that came with it was a huge relief, says Emma, and it’s helped the family move on and work together to support Robbie.

But there were many years where Emma felt a burden of uncertainty. She felt that something was different about Robbie but wasn’t sure what it was.

“I thought I was going mad. I constantly questioned whether I had things wrong. People would say: ‘It’s nothing to worry about. It’s just how boys can be’. No one wanted to believe there was something else going on.”

Early signs

Emma never felt that she ‘got’ Robbie as a baby: “I tried really hard to understand him, but it took me ages to get a smile. But I thought it was just a stage that would pass.”

Robbie went to a mainstream preschool in Norfolk when he was nearly three, and he was only really comfortable when supported directly by his favourite play worker. But he was interacting well with his family at home, so the health visitor had no real concerns at that time.

After the family moved to Bristol, Robbie and Sian attended a Steiner kindergarten from the age of five. “Robbie’s teachers were insightful and professional – they quickly gave Robbie some extra support with music and movement therapy. But he had clear social anxieties, even in a more protected, less pressurised environment,” says Emma. When he was about seven, he moved up into the lower school for more formal learning. This was when the problems became more obvious. “Robbie just wanted to do his own thing,” remembers Emma. “And he didn’t have the natural skills to be able to say to other children: ‘Will you play with me?’ He would run out of the classroom without warning, and needed ear defenders to cope with the general hustle and bustle of classroom life. I was in the school every morning doing relaxation exercise with Robbie, just to get him ready to go into the classroom.”

Before he started the lower school, Robbie’s teachers had a frank conversation with Emma and her husband, Adrian. “It was a very welcome discussion. She thought it was time to see a healthcare professional about Robbie’s social anxieties,” says Emma.

Robbie was seen by the GP, who then referred him to a paediatrician. Robbie was then referred to the South Gloucestershire Autism Spectrum Assessment Team. While this was happening, Emma and husband Adrian made the decision to home-school all their children. “I was going into Robbie’s school so often to support him, so I decided – why don’t I just do it myself? I just wanted him to have the time and space to learn, with less stress,” Emma says.

Knowledge is power

The Hallams went in to see Gerry, Specialist Speech and Language Therapist on the Autism Spectrum Assessment Team for an initial assessment. Within a week Gerry came to see Robbie at his home for some play-based assessment.

Gerry, who is also team leader at CCHP’s South Bristol Speech and Language Therapy Team, thinks back to the first time she met Robbie: “He was a lovely, funny character. His language was very precise and pedantic. He was like a little old man in an eight-year-old body. When I met him, he didn’t give me any eye contact, and he was anxious and worried. But Robbie loves scientific, construction toys like Lego, so when we started playing he soon warmed up.”

“Gerry’s questions teased out such subtle results – they were incredible,” remembers Emma. “Gerry was talking to him about a butterfly and a cocoon, but he wouldn’t engage with her in the story. He just wanted to talk about his Lego. That’s all he wanted to do.” As Gerry puts it: “Robbie is keen to talk, but he doesn’t have ‘social reciprocity’, which is a hallmark of autism. In these cases it’s hard for children to imagine what other people are thinking. Children may also have a monotonous voice and not use physical gestures to help the natural flow of a conversation.”

Gerry told Emma and Adrian at a follow-up meeting that Robbie was on the autism spectrum. “Of course, I burst into tears,” says Emma. “But a lot of it was relief, because I knew that I hadn’t made it all up. And straightaway Gerry said: ‘There is so much we can do.’ She was very professional and empathic, and positive about Robbie’s life chances. She was really good with the whole family.”

A diagnosis is very hard, says Gerry. “Parents often feel that they’ve lost their ‘perfect’ child. But we spend most of the meeting talking about the child’s strengths and then create an action plan. By the end it always feels positive.”

With latest research suggesting that 1 in 80 people have ASD, there is more information and support available than ever before.
As Gerry notes: “With ASD can come real strengths. Often young people can make a special interest their job and excel in later life. Autism is a description of the way a child or young person understands the world. My role is not to mend them, but to support them.”

What next

Gerry helped the Hallams put together an educational health assessment request for Robbie, which has been submitted to the local authority for review. This aims to help Robbie get extra support throughout his education. The Hallams also attended a Cygnet course, which are parent training and support sessions Gerry and other professionals run for parents in similar situations. They learn more about autism, theories and techniques, come to terms with the diagnosis and develop supportive networks. “It’s been really helpful for us,” says Emma. “We have made the most amazing connections with people over the challenges Robbie has faced – and have also become lifelong friends with some of the wonderful classroom assistants who have supported him along the way.”
Robbie is also having further input from an independent speech and language therapist, with support from Emma and Adrian at home.

He is working hard on his social thinking to help him communicate. The family uses Lego therapy: Robbie, the ‘builder’, listens to someone else, the ‘designer’, and follows their instructions as he builds.

It has also helped the family to write down clear expectations for Robbie about situations or activities so he knows what is expected and why. Emma and Adrian can then refer back to it and say: ‘This is what’s expected of you now, Robbie.’ They also use comic strips to help him think about feelings and what underlying intentions people might have when they speak.

And how is it all going? “I’m really proud of Robbie,” says Emma. “He’s trying really hard. He said to me the other week: ‘How are you, Mum?” That felt like real progress.”

His strong relationship with his sisters helps him too, and he benefits from their social role modelling. “Robbie said recently: ‘Sian really likes Brownies, doesn’t she?’, says Emma. “He’d watched Sian coming home absolutely beaming after Brownies, and he made a connection which he wouldn’t have done before. Now it’s happening quite frequently. It’s like a flower coming out.”

Emma Hallam: What I wish I’d known

• Listen to your instincts and talk to your child’s educators at an early stage.
• Have an honest discussion with educators - and encourage honesty in return. They will need to provide a detailed statement, along with your GP, to get a referral to speech and language therapy and a community paediatrician.
• The sooner you feel there are problems, get on top of them. It’s helpful to get an early diagnosis if possible.
• Getting a diagnosis of ASD will help your child – it’s not a label. It will help you access the support your family needs.

Our Speech and Language Therapy team
Children’s Speech and Language Therapy is a team of about 80 therapists who support 0-18 year olds. We are based in children’s centres, clinics, nurseries, specialist and mainstream schools. We assess, diagnose and support children and young people with speech, language and communication difficulties and eating and drinking needs.

The service is part of the Community Children’s Health Partnership (CCHP), which Bristol Community Health runs in partnership with Sirona care & health (lead provider) and Avon and Wiltshire Mental Health Partnership NHS Trust to deliver children’s community health across Bristol and South Gloucestershire. The service transferred to our organisations in April. Find out more about CCHP.

If you have any concerns about your child’s communication or behaviour, talk to your GP, health visitor or school health nurse. For more information and resources about autism visit the National Autistic Society.

What does a Speech and Language Therapist do?
The team supports in the following areas:

• Assessments and diagnosis of autism in children.
• Therapy for children who have a stammer.
• Assessment, advice and intervention for children who have difficulties with speech sounds.
• Assessment and input for children who have difficulties understanding and using language.
• Feeding and drinking support for children and young people.
• Parent training courses for vulnerable families to help them communicate with their children.
• Social communication input for children. With older children this may include support to develop non-verbal communication, relationships and social insight.