ZigZag Leeds: Voluntary organisation for autistic children and families celebrates 20 years

Lisa, a mother to five grown-up children, three of whom are autistic, set up ZigZag in April 2004. After her son Michael’s diagnosis, she wanted to offer a supportive environment where families could meet for shared play and acceptance.

“When you’re raising children who are on the autism spectrum, you’re trying to meet their needs, which can be complex,” she says. "You’re juggling their access to appropriate childcare and education which can be challenging, attending their health appointments, trying to maintain a good home life and, like all families, enjoy some leisure at evenings and weekends.

“What was missing was a place I could go and return to with my children where autism was the common factor – not something where my children’s needs were not understood and not acknowledged – somewhere I could be at ease with families sharing my experiences.

“At that time, it didn’t exist, so with two dear friends, Beth and Marie, we decided to create it.”

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They arranged ‘stay and play sessions’ and saw demand grow, and by the third year had a monthly group at Kids Club House in Horsforth.

Autism is a lifelong developmental disability which mainly affects a person’s communication, behaviour and how they process tastes, touch and sounds (sensory processing).

Lisa is mother to Loriah, Mark, Louisa, Michael and Matthew, now all aged between 28 and 19, and with the support of husband Mark, she decided to retire from her career as a nurse due to her children’s care needs. She says that “having an autistic child can be challenging and every child on the spectrum is different.

“Your children may not cope with pre and post school clubs and activities, they may be developmentally at very different stages, and sensory issues such as noise or how busy a place is can render trips out impossible.

“So I devoted the next 16 years of my life to running ZigZag myself – to offer children on the spectrum somewhere where they can have fun with their families without judgement and be their true amazing selves.”

The voluntary organisation – which work with families who have children with or without a diagnosis – now runs 10 monthly activity and play sessions across Leeds including trampolining and soft play, holiday activity specials, parent/carer social events, autism awareness training and, most recently for 2024, a new face-to-face monthly parent support group.

“These sessions reserve venues especially for autistic children and their siblings and parents or carers, so there is complete understanding and acceptance of the differences that autism brings,” says Lisa, 52, of Ireland Wood, who is a teaching assistant in Chapeltown after going back to work a few years ago.

ZigZag became a registered voluntary organisation with Leeds City Council in May 2009 and in October 2023, founder Lisa James was honoured with a BBC Make a Difference award recognising community heroes across West Yorkshire, scooping the Volunteers award.

Last week, Lisa received an invite through the post from Buckingham Palace to attend a Royal garden party in honour her contribution and voluntary work supporting thousands of families of autistic children across Leeds and West Yorkshire over the last two decades.

Earlier this month, they celebrated the organisation’s 20th anniversary with a family fun day at Horsforth Cricket Club, hosting children's entertainers, a mini disco, face painting, bouncy castles, sensory areas and more.

Around three quarters of ZigZag’s management team are autistic adult, and the entire team has autistic children, teenagers and young adults.

To mark World Autism Acceptance week earlier this month (April 2-8), Yorkshire-based national charity Family Fund – which supports those on low incomes raising disabled and seriously ill children – shared mini poll findings from 200 families raising an autistic child, which showed that the majority were experiencing a lack of acceptance, understanding or support outside the home.

In the mini poll, conducted on social media, the top three things parents with autistic children felt were not understood were their child’s behaviour – such as not playing or following instructions in the same way (86 per cent), their child having “meltdowns” and getting very distressed (79 per cent) or not being able to speak or communicate as others might expect (70 per cent).

Family Fund highlighted simple steps people can take to make a positive difference to the daily lives of families raising an autistic child.

Thirty-nine per cent of people said making small allowances, such as allowing their child extra time or another turn on a swing or ride in line with their needs, helps.

A third of parents and carers said that not staring at them, or their child, makes a big difference. Chatting to families and giving them a smile also makes a really positive difference to parents and carers.

Lisa highlights education as an area where more needs to be done for autistic children. Currently, she says, there are not enough places in specialist settings.

"We have many members in the group who don't even have a school place and haven't had one for months and some of them years.”

With more children in mainstream schools, there needs to be an awareness to “see their behaviors as being autistic and not that of a naughty child, which a lot of them unfortunately do get treated like.”

Lisa adds: “Our motto is ‘you are never alone’, and everyone is welcomed into the ZigZag family with open arms.

“ZigZag is me, it’s my life and I can’t ever imagine a day in the future when I am not part of it.”