Sitting in a clinical panel meeting, Sheffield mum Liesje Dusauzay felt very alone when three experts opposite broke the news that her two-year-old son was autistic.
This loneliness was compounded by the fact that her partner Paul had died in a motorcycle accident the year before. The tragedy had come two weeks after he had proposed to her.
As the medical jargon, worst-case-scenarios and straight-from-textbook advice washed over her head, Liesje wanted to be a million miles away from that room.
“They were giving me all these horrible scenarios,” said Liesje, of Darnall. “They said things like it’s highly unlikely Jayden is going to speak, or ever say ‘I love you’.
“It was awful. They were just reeling off a long list of things my son would probably never be able to do.
“In fairness, they gave me the worst-case-scenarios. But even still, it was very frightening
Liesje said she was advised to get her son Jayden, now 11, assessed for autism after he displayed some trademark symptoms.
Rather than playing with his toys, Jayden would organise them by colour and line them up in a row. He never spoke and would not make eye contact with anybody either.
Following eight weeks of assessment for Jayden, Liesje – known as Leesh – got the bad news.
“As the experts were telling me all this terrifying stuff, panic set in,” said Liesje. “I was angry, upset, confused, frustrated all at the same time.
“I needed support, friendly advice and to be told everything would be ok, it felt like I got the opposite in that room.
“I was basically given a few leaflets and sent on my way. It was a horrible experience, I felt so lonely.
“Jayden’s dad had died in a motorcycle accident the year before, two weeks after proposing to me. Jayden took his first steps the day after his father died too.”
Liesje said the first thing she did upon getting the diagnosis – as most parents will nowadays – was get home and start searching autism on the internet.
“That’s the first thing most parents do and it is definitely the worst thing parents can do,” she said.
“The internet is full of scare stories and, as autism is on a spectrum, a lot of what’s out there will not be relevant to everybody.”
For the next seven years, Liesje said she ‘struggled’ to learn coping strategies and techniques for her son.
Liesje was making it up as she went along, but the things she was doing were helping her son’s development.
In 2014, Liesje formed a community group with other parents, which has developed into charity Sparkle Sheffield, which now helps hundreds of families in the city.
“There are support groups out there in Sheffield who do some really great work,” said Liesje
“But unlike support groups, we give parents strategies and advice, as well as emotional support and a listening ear.
“Talking to other parents in the same situation, in any setting, is always recommended.
“When it comes to expert advice, though, it is often very clinical, complicated and scary for parents to take.
“We are all parents who have raised children with autism, we are living with it and we can speak to families in language parents understand.”
The charity helps families with autistic children meet the challenges they face, feel less isolated, less frightened and more empowered.
Sparkle offers: peer and mentor support, which gives parents an opportunity to talk things through; hand holding mentors to accompany parents to appointments and meetings; individual information and advice sessions; guest speakers helping to address problem areas such as communication, potty training, puberty; autism friendly activities that all family members can attend.
The group also goes into schools across the city for monthly meetings, where parents can discuss autism with parents that have been through it.
She added: “Most of the things the experts said Jayden might never be able to do have not happened. He lives a normal life essentially, which is testament to our work.”
Sparkle Sheffield now has 122 members, no paid staff, 15 volunteers and three trustees.
The charity has access to highly qualified and experienced autism specialists to provide information for parents about the condition and how they can best support their children.
This year Sparkle has been selected as the Lord Mayor's chosen charity.
n To find out more about Sparkle Sheffield, visit www.sparklesheffield.co.uk