Autism: What it means for families

26 Jul 2016

Parents of children diagnosed with autistic spectrum disorder (ASD) are benefiting from new films featuring families in a similar position.

Being told your child has ASD can come as a shock, says Occupational Therapist Suzy Laird, who works in Barts Health ASD Assessment Service (ASDAS). Talking to parents of newly diagnosed children, Suzy and her colleagues realised that, although they discussed the diagnosis with parents, their messages weren’t always getting through.

“Obviously when you’re being given bad news and being told that your child has a lifelong disability, sometimes parents are very confused and don’t hear what we are saying,” says Suzy. “Then their appointment finishes and that’s it – they’re left to deal with this diagnosis. We’re linking them into other services, but they do find it a difficult and confusing time.”

Suzy and her team came up with the idea of producing a series of films for parents that would explain what ASD was and where they could go for support. With funding from Barts Charity, three films have been produced, which parents can watch once they feel more able to engage with the diagnosis.

Crucially, says Suzy, the films feature parents in a similar situation: “They can speak a lot more powerfully than a professional can, and from their own point of view.”

The films also help with the assessment process – particularly play-based assessment where a therapist works closely with the child to look for particular signs.

Family and friends

Another advantage of the DVDs is that they can be given to family and friends – “It’s not just parents that are affected by the diagnosis,” Suzy points out. The films can help with understanding that a child has a recognised condition that affects their behaviour.

The films can also be viewed on the Barts Health website, so schools, children’s centres or other people who might interact with children with ASD can better understand their condition.

The films feature children from a range of ethnic backgrounds, and can help parents bring into the open a condition that may not be well understood and may still have stigma attached to it. “In cultures such as Somali and Bengali there is no word for autism,” points out Suzy. Somali and Bengali versions of the films have been produced, so parents can communicate their child’s condition even though they lack the word to describe it.

The films were well received by professionals at a launch event and are proving popular with parents. “Each time they watch it they pick up something else,” says Suzy. Having parents talk about what to expect has been particularly enlightening:  “They’re getting information from somebody who’s been through the lived experience.”

You can view the films here.

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