Stories: Emma
Peer guide reflections on feeling connected
We are sharing stories of people's experience of Autism Central, to help others understand the impact of peer education and encourage more families to find out how the service could help them. Autism Central helps families and support networks learn more about autism and how to navigate support.
Meet Emma
I’m a parent to neurodivergent young people, have a neurodivergent husband and I am on the pathway for an ADHD assessment myself. My career pathway in education and clinical settings was born out of necessity, as there was such limited help for my children, after the long diagnosis process. I knew that the best way to support them was to learn as much as I could about autism and ADHD.
However, the more knowledge I gained, the more I started to advocate for my children with school and other professionals. I was viewed as the ‘difficult’ parent, who was asking for too much. School then became a horrible place to visit for my son and myself, where we were isolated, ignored and made to feel a burden.
"Some say that they’ve been made to feel like they are bad parents and put under pressure to change things that are not under their control."
Before starting my work as a peer guide at Autism Central, I supported many parents on their autism journeys in the Kent area where I live. I had also started doing quite a lot of my work online during the pandemic.
This really brought home to me just how important it is for parents to meet with another parent who gets it, and to have someone to talk to. Many parents feel they can’t trust the health system or they struggle to get timely and personalised responses from professionals when they are needed most. Some say that they’ve been made to feel like they are bad parents and put under pressure to change things that are not under their control.
Becoming a peer guide
I am excited to be a peer guide for the Autism Central programme. Families are often running from pillar to post, trying to get support, information and answers to longstanding questions. It is great they can get all of this at Autism Central in one place now.
The guidance we are providing is neurodiversity-affirming and evidence-based, moving away from the negative, deficit-focused messages around autism that families so often receive. Many families also feel very isolated. We are offering a safe space for people to come together, share experiences and feel less alone.
"We are offering a safe space for people to come together, share experiences and feel less alone."
Feeling connected
As I live in a neurodivergent household, it's always good to keep up to date with the latest research and to consider different perspectives. As I am on the ADHD pathway myself, I'm also beginning to identify who I am and to recognise my own neurodivergent traits, so learning and exploring more about this is helpful. The resources that are offered as part of the Autism Central programme are just brilliant and cove a wide range of topics. There are lots of useful short videos with tips and advice for parents. I also love listening to the Autism Central podcast, especially when I'm cleaning the house or walking the dog, as it helps my ADHD brain to focus.
My work as a peer guide for Autism Central has also helped me with supporting my own autistic family members. In my sessions, I use materials that have been created by people with lived experience, and we explore them together as a group. This gives me ongoing opportunities to learn and to reflect on the ideas and insights shared in each session.
Since delivering sessions for Autism Central, I have felt really connected to parents and grandparents who have attended and continue to come back. Hearing about their children’s and grandchildren's focused interests and looking at aspects of joy has made this experience such a happy one. I have learnt so much about the importance of validation, acceptance and the power of monotropism as a form of regulation and joy.
"I have learnt so much about the importance of validation, acceptance and the power of monotropism as a form of regulation and joy."
Building community
I wasn’t sure about delivering virtual sessions for families, as I like having face-to-face contact with people. But the work with parents online so far has just been so validating! It also feels like we're building our own little community full of love, care and shared resources. We're seeing some of the same parents returning to sessions and we're beginning to know more about their families and their children.
And the resources we can share with people are so excellent and the team of people working for this programme are so enthusiastic and supportive, that working as a peer guide has been a brilliant experience.
"It also feels like we're building our own little community full of love, care and shared resources."
I like telling families that the great thing about Autism Central is that it is a one-stop shop. It covers everything from early years all the way through to adulthood. And all the guidance and resources are really high quality, based on the latest research and evidence.
I found that as a parent, you keep searching and scrabbling for information – first when they are little, then when they become teenagers and then adults. You ask yourself, “what do I do now?” It’s just amazing to be able to tap into all of these different resources for different ages that Autism Central offers - live webinars, one-to-one support, videos, podcasts - and to have access to experts all in one place.
It's also a really safe space for families to come to and they can be sure that all of the facilitators who run sessions for the programme have lots of lived and professional experience. There's no judgment here - if your child has been eating chicken nuggets for five days because of restrictive eating, we get it, we understand.
"It's also a really safe space for families to come to and they can be sure that all of the facilitators who run sessions for the programme have lots of lived and professional experience."
