Raising an Autistic Child & The Values of Lived Experiences

I have a 19-year-old son diagnosed autistic and ADHD, and he is absolutely amazing. He is a happy, contented, raising an Autistic child and the value of lived experiences and endearing person with a fantastic memory and just loves people! However, due to his severe learning disabilities and speech and language/communication delays, he still requires a lot of support from me and other adults involved in his care, which is something I never could have predicted when Autism was first mentioned and then confirmed.

Although I immediately accepted the diagnosis and moved forward, as a first-time parent it was a bit like walking even further into the unknown than I could have anticipated because I had very little knowledge about Autism, or what it meant for my son’s development, and ultimately his future. This is where the value of good support networks and lived experiences come into play.

Having access to support groups or making connections with other Autism families can be such a godsend for many parents because you feel less alone, you’re able to discuss your hopes and dreams, your struggles and concerns with people who genuinely understand the rollercoaster of emotions that can occur in a single day when raising an Autistic child. It took me a while to find these kindred spirits, mainly because I don’t like talking to people, I don’t know which, ironically, is now a huge part of my job, but also because I had recently moved away from my hometown and hadn’t had a chance to build up my social circle.

I was fortunate to have supportive family and friends who didn’t question the diagnosis or make me feel as if I was a bad mum, so I didn’t feel that sense of isolation or loneliness because they were always there if I needed them. However, their knowledge of Autism wasn’t any better than mine and I still needed to know how best to understand and support my son including educating myself. I was initially signposted to a parent carer support group when my son was still going through the assessment phase, however, I struggled to connect with those parents as I felt we were at different stages of our journeys, so I only went once or twice and never returned.

A few months later, I enrolled him in a preschool specifically for disabled children and met other parents there, which helped to increase my social circle. When my son eventually started school, I was able to meet more parents with Autistic children and have conversations with people I could relate to, who had similar experiences, and could share ideas and information.

Whilst medical professionals and other people working in these fields can and do undoubtedly help and support families, particularly with information and advice, they cannot necessarily relate to that all-important lived experience, that shared thing which makes your household feel ‘normal’ because someone else’s household is the same, or similar. Having discussions about faecal smearing, meltdowns, rigid diets, and routines, worries for your child’s future, or sharing your concerns that your non-verbal child will never speak becomes a part of that normal. You feel less alone when someone else has been there and gets it. Sometimes you just need someone to listen and acknowledge what you’ve said without minimising or trying to fix it. Sometimes you just want to vent your worries or frustrations and feel heard without judgments or suggestions of ‘have you tried…?’.

There is a meme that I came across a few years ago entitled ‘An autism parent fell in a hole…’, which highlights the importance of having other autism parents in your life, and this is exactly what I mean; finding and connecting with people who understand, who will climb into that hole with you and help you find your way out, or demonstrate how they did it. They can show you that things can and do get better and easier, suggesting strategies and interventions that worked for them, as well as connecting you with other parents or support services. Making that journey into the unknown much more bearable and less lonely. This is something I now try to do for others. Within my job role, I offer 1:1 support to parents with Autistic/ADHD children, as well as facilitating two monthly support groups with a friend and colleague.

I have also written a book entitled ‘30 Days of Autism‘, which is an introduction to ASD for parents of newly diagnosed children to help them navigate those early stages because we all know how overwhelming it can be. I want to impart the knowledge and experience I’ve gained through raising my son, as well as what I’ve received from other autism parents and professionals in this field, and share it with those who are new to this journey, who don’t know what to do, or who to ask for help and support.

If we all take our turn to jump into the hole, no one ever has to find their way out alone and it’s our children who ultimately benefit the most.
Stacey Saunders

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