One of the first issues we realised we all had in common was our inability to join traditional Parent Councils.

 

The barriers to our participation were our children’s needs, other carer roles and our children’s exclusion from education. We all found that we felt as excluded from the school body as our children were and we were travelling a very different pathway through education.

 

By listening to the parents who spoke to us, we felt we had to narrow what we were doing to ASN in mainstream education. That was the issues parents most wanted to discuss. 

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​We initially started with a Facebook page and Twitter/X account. We found that engaging with parents wasn’t that easy so we continually reviewed in weekly meetings our approach to parental engagement. We also asked informally what would make engagement easier? 

 

What we learned mirrored our own experiences. It was difficult to engage with groups, meet ups, Parents Councils, as it was a low priority on our weekly agenda of meetings, supporting our children at home or supporting them with the intense dysregulation they experience once they are home.

 

Multiple caring roles was another barrier, not understanding the language of education and how complex it is to access services was a common theme. Irregular sleep patterns of so many children with autism: ADHD impacted parents' availability and their concentration levels. So many ASN parents are in survival  mode. Our committee members decided to use WhatsApp as a way of parents connecting, sharing information and giving each other support.

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This led to the very late night group chat that’s there for parents to support each other and give advice around children who struggle with sleep and are prescribed melatonin to try and let the child and family get some sleep. Many of the parents experience their children not sleeping for days on end and the reality of their home lives is very often hidden from view. The chats led to Zoom meetings with parents, offering them the chance to connect, even just socialising with a group of parents who 'just get it', don’t judge and don’t offer advice unless it’s sought. What was clear is that ASN parents struggle to connect with other parents who have lived experience of raising a child or children with additional support needs. We have found humour, friendship and a profound sense of empowerment which was the one of the aims of our campaign: to empower parents in some way. 

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Our monthly Zooms have filled and all the parents who participated want more, so we have decided to have monthly ASN parent Zooms for parents to connect. Committee members are present to offer moderation if required. So far this has been extremely positive and we have received feedback that parents feel less isolated and it’s a Zoom event to look forward to. As we move forward, we hope to develop new ways of breaking down the barriers of participation our community faces, including being a neurodivergent parent. 

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We have no Zoom Pro and it’s really heartwarming when parents rejoin the meeting. You know they want to be there. We are planning parent-led podcasts too as another way of empowering ASN parents to speak about their lives with confidence in a supportive environment and community. It’s going to be called initially No Problems Here! 

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We hope to raise the profiles of parents of children with ASN and make it positive. We also hope to inform parents of their children’s rights to education. We have loads to learn and we are looking forward to learning from Connect and networking with other inspiring groups of parents doing positive things.'