‘We shouldn’t have to fight so hard’: Jewish mother’s plea for better autism support

By the time most parents learn what an Education, Health and Care Plan (EHCP) is, it is because somebody has told them their child might need one.

Shona Bergson learnt because her son did.

Over the past 16 years, the Jewish mother-of-five has become fluent in a world she never expected to enter – one of assessments, annual reviews, professional reports and support plans. It is a language she believes no parent ever wants to learn, yet one many find themselves speaking as they try to secure the help their children need.

Now, after years spent supporting her own family and listening to the experiences of other parents, Bergson has decided to speak publicly for the first time, hoping her story will reassure families who feel overwhelmed and encourage a wider conversation about the challenges of raising autistic children.

“My knowledge and experience made me want to write,” she told Jewish News.

Bergson’s understanding of autism has come not only from raising her son but also from studying child development herself. She holds a degree in Playwork Studies and a Level 2 qualification in Understanding Autism, qualifications she says helped her better understand both her own family’s experiences and the wider challenges facing others.

Over time, Bergson realised her family’s experience was far from unique. Conversations with other parents, whether in support groups or everyday life, often returned to the same themes: navigating a complex system, chasing assessments and wondering where to turn next.

If you can’t afford it… they either give up or give in

Her own journey reflected many of those same challenges.

Bergson spent years gathering reports, coordinating with teachers, psychologists and other professionals, and repeatedly following up with services to ensure the support promised was actually delivered.

Even after support was in place, she says, the work never stopped. Families face ongoing annual reviews of their child’s Education, Health and Care Plan (EHCP), alongside regular communication with schools, following up on agreed support and completing extensive paperwork to ensure provision continues to meet their child’s changing needs.

Those experiences, combined with the stories she heard from other parents, eventually prompted her to put her thoughts into writing.

Rather than focusing solely on her own family, Bergson wanted to capture what she believes many parents quietly experience behind closed doors.

She believes one of the biggest frustrations is not recognising that a child needs help, but securing meaningful support once those needs become clear.

She also believes there is a growing divide between families who can afford private assessments and therapies and those who rely entirely on statutory services.

“If you’re able to afford it privately, then I think your child will be okay,” she said. “If you can’t afford it… they either give up or give in.”

For Bergson, the emotional toll reaches far beyond assessments and paperwork.

Like many parents, she has balanced supporting an autistic child alongside raising her other children while trying to understand behaviours that people outside the family may struggle to appreciate.

“Parents have to deal with their child’s behaviour every single day,” she said. “Especially now that parents are working more, and they’ve got other children to look after.”

“For me, I just burn out with that.”

She believes greater investment in early intervention could transform outcomes for many families.

“I think the government should put more money into the early years and early primary so it doesn’t become a huge problem in secondary,” she said.

She would also like to see greater autism training for teachers and employers, believing better understanding would help autistic children thrive throughout education and into adulthood.

For me, I just burn out with that

Many of the concerns Bergson describes are echoed by organisations supporting autistic people across the country.

According to the National Autistic Society, 270,701 people in England were waiting for an autism assessment in March this year, with around 90 percent waiting longer than the 13 weeks recommended by the National Institute for Health and Care Excellence (NICE). The charity’s latest survey also found that 95 percent of autistic people and parents or carers said getting support for a child with Special Educational Needs and Disabilities (SEND) is “a fight”, while only seven percent believed children with SEND have their needs met at school.

Commenting on the findings, Mel Merritt, Head of Policy and Influencing at the National Autistic Society, said: “What we’ve heard loud and clear from parents, teachers, and autistic people is that the current school system is letting down autistic children and this can’t carry on. Children with SEND and their families are forced to fight for the most basic support, while teachers and school staff struggle to meet their needs due to a lack of capacity and resources, leading to serious concerns about children’s safety.”

Merritt has also warned that autistic children and their families have been “left exhausted and traumatised by long fights for support”, saying reforms must ensure children receive the education and support they need.

Within the Jewish community, Norwood says Bergson’s experiences mirror what many of the families it supports describe. A Norwood survey of Jewish parents of children with SEND in north-west London and Hertfordshire found that 66 percent of the children represented were autistic, underlining the scale of demand for autism-related support within the community.

Heather Cohen, Head of Children and Family Services at Norwood, said many parents struggle to access help because services remain heavily dependent on obtaining a formal diagnosis rather than responding to a child’s immediate needs.

“Many families are unable to access help because their child is awaiting a diagnosis, despite having clear needs,” she said. “The system is still overly diagnosis-driven, leading to delays, confusion about where to turn and an impact on a family’s wellbeing as a whole.”

Cohen said many families supported by Norwood describe paying privately for assessments and therapies because statutory services are unavailable, while others face lengthy and stressful journeys trying to secure appropriate educational support.

“Parents we support frequently report having to fight for their child’s needs to be recognised and met,” Cohen said. “The process for securing an Education, Health and Care Plan (EHCP) is often adversarial, lengthy and traumatising – particularly for families navigating this without expert support.”

My knowledge and experience made me want to write

Norwood also highlighted the wider impact on Jewish communal life. The charity said 44 percent of respondents to one of its surveys reported challenges participating in Jewish life, with families describing barriers to accessing synagogues, youth movements, holiday programmes and other community activities.

“Our experience shows that in many communities, autistic people and their families often feel unwelcome or invisible,” Cohen said.

For Bergson, those wider concerns reinforced why she chose to share her story.

She does not believe her family’s experiences are exceptional. Instead, she hopes they reflect the reality faced by many parents who quietly spend years advocating for their children while trying to hold family life together.

More than anything, she hopes other families will recognise themselves in her experiences, feel understood and know they are not alone.

Read Shona Bergson’s accompanying personal reflection, The realities of being Neurodiverse, here.