By Elyse Crowther
Opinion - Having a child diagnosed with autism can be isolating and overwhelming but there are plenty of ways to support parents.
Photo: 123rf
My son is autistic, when he was diagnosed it was pretty overwhelming even though I had an inkling it was what the paediatrician would say. You are bombarded with information on how to support your child, and to be fair it is so much harder on your child than you, but there wasn't much information about how to look after yourself, how to cope and really to be the best support for your child you need that.
Over the last few years I have struggled with feeling isolated, overwhelmed and scared but my family and friends, and the new tribe I have found, have taught me what I needed, so in the hope of helping other families who have had a recent diagnosis here are 10 ways to support a parent with a beautiful autistic child.
1. Keep inviting them - I turned down a lot at first because I was worried about how people felt about how my son might react to certain situations, I withdrew and to be fair I still do avoid certain things but friends didn't give up on us and I got more confident the invites were still there.
It was also really helpful when people give me extra details on what we were being invited to, so if it was a kids birthday they would give me a heads up that the location was particularly loud or that there would be a quite space available.
2. Ask questions - I loved and still love when people make an effort to understand my son so ask what sensory challenges they have and how you might make them more comfortable with you, ask if they have special interests which could help you connect with them. This is much better then asking if they are high or low functioning as these labels don't work.
When I turn up at a friends and I can see little adjustments made for my son, or they find a way to engage with him I feel accepted and I see him being accepted and its all anyone wants. I have had family members seek education through books, online seminars and talking with me and its always magic to see people show up for you like that.
3. Don't give up on the kid - My son might ignore you the first 10 times he meets you but he isn't being rude and one day you will say the right thing and he will respond and you will feel amazing for it and so will he. Yes he likes to be alone sometimes, even needs it, but he does get lonely and he does need and love connection with others.
4. Be a friend - Listen to the challenges we face, mistakes we make - don't judge or offer advice unless that's what we are asking - just listen and be there. We get so much advice from doctors, teachers, psychologists, books and articles we read - we are overwhelmed with advice!!
I have so many amazing people who do this for me and I know sometimes it must be painful - so I must thank them but just like any parent we have bad days and challenges and sometimes you just need to unload.
5. Teach your kids, it doesn't need to be specifically about mine but just that all kids are different and that just because one might react differently to a situation it doesn't mean they can't be a great friend. Just because they might seem different, they are not less, or weird! Their difference is their power!
6. Celebrate the successes with us no matter how small and when things are bad remind us what our kids have achieved and how far they have come! As a parent it's easy to be hard on ourselves and having someone bring our focus back to the good things is really important.
7. Share with us - I love hearing stories of families who have been through it and meet milestones and achievements they didn't expect - these remind me that there is so much hope and the world is learning and becoming more accepting.
8. Don't be offended - Autism means our kids don't see the world the way you or I do, this presents some challenges as they don't always understand social situations, they miss social cues and don't always behave in the way you expect. This doesn't make them rude so don't be offended.
They might not make eye contact, they might fidget or not return your greeting and they may struggle with receiving a gift - but they mean no offence, this is just them coping and trying to make sense of a world which doesn't always make sense to them.
Also remember eye contact isn't a requirement of listening, nor is sitting still or nodding in agreement - you can listen while fidgeting or looking at your feet or spinning on a chair.
9. Create safe spaces - A lot of places are challenging for our kids, but your house can be a safe space for us and our kids. It can be as simple as having some sensory options, keeping lights down, keeping the volume down. Let us know its ok if our kids flaps their arms, or spins around - that you understand that's just who they are and that you accept and love them for it.
10. Support - Show your support, April is a great month to do this - share some information about Autism, read a book or article, donate to the Autism Foundation and get on board with Hoods up Wednesday.
Autistics live in a world not made for them and in my sons case and many others his disability is quite invisible to most people so creating awareness is the best thing I can do for him, so those challenges and battles he faces can be understood and respected.
Seeing my workplace, my family and friends get behind this has shown me how supported I am, how loved he is and gives me so much hope for my sons future.
I am no expert, my experience is just my own and what I have observed and learnt from talking with other parents, every autistic child has their own challenges, their own battles and that's why its so important to take the time to get to know our child and know those challenges - that is how you can be the biggest support and help.
I didn't know I needed any of these things, I didn't know to ask for them or how to tell people - I was overwhelmed and scared and trying to be the best mum I could while navigating a confusing support system and learning a whole new world. But so many amazing people in my life just did these things and I appreciated it so much, it made all the hard stuff easier! I am still meeting people who continue to and it makes me overjoyed with hope that while my son lives in a world not made for him, he will still be understood.
- April is Autism Acceptance Month.