World Autism Acceptance Week: Bonnybridge mum tells of lack of acceptance and understanding faced by families with autistic children

That’s the findings of a poll of 200 families from across the country run by national disability charity Family Fund.

One local mum who knows these challenges all too well is Rebecca O’Raw.

She lives in Bonnybridge with five-year-old son Noah Reid, who is autistic and has a rare genetic condition called adult-onset leukodystrophy.

Rebecca said: “Noah is nonverbal so communicating is really difficult and he can become frustrated very quickly.

“I feel like we can’t go to ‘normal’ days out due to the behaviour issues Noah faces. It’s even worse when you have a million eyes on you so we tend to look for ASN (Additional Support Needs) places as all the parents there just get it.

“People who don’t understand autism tend to see our children as ‘naughty’ kids – but that is just not the case.

“Noah’s moods can change quickly and he finds small things very frustrating. Noah only sleeps a couple of hours a night too, so it’s very intense trying to support him and manage his behaviour literally around the clock.”

Family Fund has supported Noah and Rebecca through grants, including providing a trampoline, sensory equipment, washing machine and a bed and matress.

But they are not alone in the way that they feel judged.

The mini poll, conducted by the grant making charity supporting families on low incomes raising disabled and seriously ill children, showed families felt their children and situations were not understood.

The top three things parents with autistic children felt weren’t understood were their children’s behaviour – not playing or following instructions in the same way (86 per cent); their children having meltdowns and getting very distressed (79 per cent) or not being able to speak or communicate as others might expect (70 per cent).

World Autism Acceptance Week runs from April 2 to April 8, and the charity is highlighting the simple steps people can take to make a positive difference to the daily lives of families raising an autistic child.

Of those responding to the charity’s poll, 39 per cent of people said making small allowances, such as allowing their child extra time or another turn (on a swing, a ride etc) in line with their needs, helps. While a third of parents and carers (33 per cent) say that not staring at them, or their child, makes a big difference and chatting to families and giving them a smile also makes a positive difference.

Autism is a lifelong developmental disability which mainly affects children’s communication, behaviour and how they process tastes, touch and sounds (sensory processing). More than one in 100 people are thought to be on the autism spectrum.