Family Survival Kit
#AutismAcceptanceWeek
- Carole Evans
We call this a survival kit in our house. It contains the things we need for our youngest autistic child to cope when we go out. We may need some of it. We may not use it at all. Most parents with autistic children will have something similar.
"We are teaching them to cope emotionally in ways their peers will not, and many adults never learn to do. To do this, we need to learn not only how to help them regulate their emotions but to regulate our own first so we can."
The thing I wish I’d known as a parent earlier is that we need to build our own survival bags, too. Not physically, but in other ways. Being a parent of an autistic child can be isolating, exhausting, and emotionally overwhelming. Not only do we need to be a parent, but an advocate, a carer, and have knowledge that often doctors do not. We are expected not only to raise our children, but to teach them to wear a mask appropriate for society, whilst we’re also giving them tools to not need to mask in the first place. We are teaching them to cope emotionally in ways their peers will not, and many adults never learn to do.
To do this, we need to learn not only how to help them regulate their emotions but to regulate our own first so we can. Often, without guidance on how we should. Especially so we can ignore all those people who stare, judge, or tell us how to parent because our child is different. Those adults are not self-regulating, but expect a child to be able to. And we cope with this, and help our children anyways, because we know what our children need.
"And this is why I wish I had known about building my own survival bag sooner. Because help is available."
A sad truth is that autism assessments take too long, and many of us are drowning with no support. And this is why I wish I had known about building my own survival bag sooner. Because help is available. Getting a referral is hard, and the process is harder, and at the end, they give you a diagnosis and a leaflet and send you on your way. So please don’t wait to get help and support thinking you need a diagnosis, as we can help and support each other much sooner.
"For us, Home-Start has been our lifeline, helping us with our child, things at home, having someone to talk to, and helping us find other services and groups that have helped our son."
Speaking to a health visitor can be a good first step, as they can refer you to organisations such as Home-Start, Action for Children, or other charities. Of course, you can also self refer to Home-Start. Often just this first step can lead to so much more.
For us, Home-Start has been our lifeline, helping us with our child, things at home, having someone to talk to, and helping us find other services and groups that have helped our son. By being able to talk to other parents with autistic children – all completely different – we know we aren’t alone. By having people there who can give us advice, or help advocate for us, and be there when we are overwhelmed has helped our family grow stronger.
We have tried all the help we can, and some of it honestly has not worked. Some we have had to persist with and alter to fit our child’s unique needs. And some we laughed at, yet proved to be exactly what our child needed. All of them are building blocks for our survival bags. Finding what works for you and your family is your survival bag. And we don’t have to build them alone.