The relief and grief of a child being diagnosed with autism
New TV drama The A Word tells the story of a family discovering that their quirky five-year-old son is in fact autistic.
The A Word focuses on the Hughes family - at first glance, they seem to be living an idyllic life in the Lake District. But Paul and Alison Hughes are beginning to realise that there may be more to their five-year-old son Joe's quirky behaviour than just eccentricity. A diagnosis of autism plunges the family into a disorientating world of medical jargon and new expectations.
What is it really like for families to be told by the experts that their child has autism?
For Nikki, the dust is still settling. Her eldest son Sam (not his real name) was diagnosed with Asperger's syndrome in January at the age of six, after a four-year battle to convince people he was not simply badly behaved.
"In some ways it was a massive relief, to know it wasn't just us being incompetent parents," she says. "But in the same moment it's being confirmed that your son has a hidden disability and he isn't going to grow out of his problems. It's bittersweet."
She describes Sam as an "angry baby" who would have tantrums lasting two hours, sometimes culminating in him holding his breath and passing out. He was kicked out of nursery and rejected by childminders.
"It got to the point his behaviour at home was so difficult we were generally worried we couldn't keep our younger son safe - he was hitting and punching, out of control because he was so stressed. At that point I paid to get a diagnosis privately."
Sam was diagnosed with Asperger's syndrome, with sensory issues and short-term memory problems.
Nikki says: "Certain noises are unpleasant to him like electric hand dryers which he finds unbearable, but in other areas he's under-sensitive - he jumps on furniture and fidgets because he's not getting enough sensory input to make him feel grounded."
But there are also challenges which are not medical.
"Sam went the whole of last year without being invited to a party," Nikki says. "If he just had one friend who understood and tolerated him it would make him feel he was part of something."
This sense of isolation is played out in the programme with Joe always appearing to be on the outside of social interactions.
What is autism?
- A developmental disability that affects how people perceive and interact with the world
- More than one in 100 people are on the autism spectrum
- People may be under- or over-sensitive to sounds, find social situations a challenge, experience a "meltdown" if overwhelmed
- Asperger's syndrome is a form of autism. Often of average or above average intelligence, people have fewer problems with speech but may still have difficulties with processing language
Source: The National Autistic Society
The character is played by newcomer Max Vento, a - non-autistic six-year-old who is described as "simply perceptive" by the producers.
The A Word's screenwriter, Peter Bowker, took great pains in making sure the depiction of autism and the familial trials around it were accurate.
He worked with the National Autistic Society (NAS) which tries to help producers and writers make sure that autism is portrayed as accurately as possible.
In the first episode the family take Joe to a specialist who observes his interaction through a series of play-tests before giving his diagnosis.
Tom Purser from NAS advised the writers: "We had quite specific points around the diagnostic process to ensure it was accurate and matched the clinical process, but on the other side it was a question of whether it will resonate with other families and be interesting."
Purser has been there himself. His son, Charlie - now 14 - was diagnosed with autism as a toddler. Like Joe in The A Word, Charlie was initially sent for hearing tests when he didn't respond to people calling his name.
"I was able to talk about our experience and it very much matched the script. It's a subtle detail but brings it to life," he says.
At the start of the series, the Hughes family sees Joe as endearing and intelligent, which is why they believe he doesn't engage with other children. Secretly they harbour concerns that surface when other people start querying his behaviour.
Purser remembers that denial is easy for parents until certain crunch points act as red flags.
"It tends to happen when they're not hitting their milestones," he says. "You can say, 'Sure he was slow to talk but he got there' but the crunch point is when they've hit school and the social element becomes more significant."
Charlie was diagnosed while still at nursery, but Purser says it came with crushing reality.
He says it's a relief when something is confirmed but then you have to face up to the loss of the child. "My wife talks about grieving. As first-time parents your expectation about what your child is going to be like is shattered by that diagnosis. You start reckoning with your past and thinking, 'Did we miss something?'"
The positive, Purser says, is it led Charlie to the right support.
"Our son is lovely and we wouldn't change him. He goes to a mainstream school, with full-time support and has a very small group of friends who 'get' him." He explains that his son's language is now good, though he started primary school without functional language and wasn't toilet trained. "So where he's gone from then to now is such a development."
Purser reveals that Morven Christie who plays Alison Hughes in the series didn't research the condition - she wanted to learn about autism alongside her character. She portrays a mother plunged into darkness, the language and medical jargon disorientating and scaring her.
It is something that resonates with Sharon King, whose three children - Rosie, Daisy, and Lenny - are all on the autistic spectrum.
Daisy, now 15, was the first of the three to be diagnosed.
King says: "I was shell shocked. They just gave me a leaflet and said it was just a case of watching and learning. I didn't know much about it at all so my ideas of autism were all askew - I imagined kids rocking in an empty room which is nothing like the reality. We get so much joy and love from our children."
Lenny, 14, was diagnosed at the age of three. Rosie - despite being the eldest - was nine before anything was confirmed. Now 17, she is preparing to study creative writing at university. Her two younger siblings, meanwhile, don't have the use of language.
Unlike some parents, King believes a delay in diagnosis can be beneficial.
"It took a year with Lenny after he started missing his milestones but that gave us time to absorb the news. We went through some dark days when I became quite depressed, when I blamed myself and didn't go out because people were looking and staring."
She says as a family they talk to anyone who shows curiosity, and firmly believes autistic children shouldn't hide away.
"It's nice when people ask about it now and I love talking about my children, I'm very proud of them. They are just ace."
The first episode of The A Word will be shown on BBC One at 21:00 on Tuesday 22 March 2016 - catch up on BBC iPlayer
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