Content warning: This post mentions child deaths and suicide.
Background:
The NCMD (National Child Mortality Database) records how many child deaths there are in England and reports how many of these were autistic children. We’ve been working with the NCMD to improve data collection and reporting, so that children who were on a waiting list or suspected to be autistic are also included in the numbers reported.
As part of our work with the NCMD, we were given the chance to provide information cards at a big conference for paediatricians (specialist children’s doctors). We used this as an opportunity for our network members to share, based on their experiences, what they want paediatricians to know about autism.
How this work empowered people to make more of a difference:
This piece of work was a chance for autistic people and supporters of autistic people to share information that might lead to paediatricians offering better care to autistic children in the future.
What did we ask people to do?
We emailed a survey link to all members of the Community Network (at that time 1055 people). In the survey, we asked network members to tell us what they want paediatricians to know about autism and to explain the impact of any positive and/or difficult experiences.
In total, 44 network members responded, with this including 31 autistic people, 27 parents/carers of one or more autistic people, and 8 people who work in the field of autism (these groups overlap).
How we used responses:
Network members told us what they wanted paediatricians to know about autism. We read all the comments and found five broad areas:
1. Autism presents differently in girls.
2. How difficult it can be for autistic children to attend appointments.
3. Autism is a spectrum and presents differently in each person.
4. It’s important to listen to autistic children and their parents.
5. The possible consequences of autistic children not being diagnosed in their childhood (for example, not getting support and suicide).
Altogether, 20 quotes were used – the image below shows some of the quotes and the front of the information cards:
What's next?
We have permission to use some of the quotes on our social media and in the charity’s future work, so we’re considering how we can make this work even more impactful.
We’re also still working with the NCMD to improve data collection and reporting of child deaths and will contact network members when there are opportunities to get involved in this work.
Want to get involved?
If you’re not already a member of our Community Network and want to be part of opportunities like this, you can find out more information and sign up here.
