Anthea’s story: Parenting Autistic children as an Autistic parent

Aether and family take a selfie. Photto: Flick Smith

 

Anthea is an Autistic mother of three Autistic children, including Aether. Aether is the focus of a new documentary, Who I Am, which follows the family over several years as Aether explores his gender identity, seeks inclusive healthcare and uses his art to explore who he is.  

We spoke to Anthea about her experience raising three Autistic children alongside her Autistic husband, supporting Aether through his gender exploration and having a documentary crew capture three years of their lives. 

Can you tell me a bit about yourself and your family’s journey with autism? Who was diagnosed first, and how did this lead to other diagnoses? 

Our 12-year-old was the first of us who was identified as Autistic. She has a lot of medical conditions and was a frequent flyer at Royal Children’s Hospital. I noticed a few signs from when she was an infant. Her autism was missed by the public system by many specialists. She was never even assessed by them despite requests from our doctor. Things were getting so challenging that we sought the opinion of a private paediatrician. This began her journey of diagnosis. I knew as we were going through the process with her that our son who was 2 was also in need of an assessment. He was the next to be formally diagnosed. I did not think our eldest was Autistic as they did great at school and had a close group of friends. However, once they started high school everything fell apart and it was suggested to do some learning assessments. Autism was screened due to the other siblings. Turned out he was, too! I always knew my daughter was very similar to me, I read a book to help me support her better. Low and behold, I was reading about myself! This prompted my diagnosis. Since then, my husband has been diagnosed as well. 

What has been your experience parenting Autistic children? 

I think parenting Autistic children as a neurotypical person would be very different to how I parent, being Autistic myself. I parent by feeling, by sensing where my children are at and what they need. I use my gut feeling and intuition. This serves me very well. Being a parent to Autistic children is amazing. They are amazing. I connect to them on a different level. I love how literal they are, for example, if someone in our house asks what time it is, the answer must be to the exact minute. They have a deep kindness about them and such strong passions for things they are interested in. 

What services and information sources did you seek out to support yourself and your family, and how did these impact your experience? 

Finding good services and information sources has been a very long process.  When we first sought support for our daughter, there was none. The people we were referred to did not understand her or her needs. Since we did start getting supports it has been a lot of trial and error. I believe the best support for them is a parent who is strong at advocating and has a deep understanding of their needs and how to support them. I have to juggle a fine balancing act to give them the supports they need without bombarding them with too much therapy. I find by far, the best supports are people who are neuro-affirming and have lived experience. I try to work mainly with therapists who are neurodivergent themselves or at least care for people who are. I do a lot of advocacy work myself, I apply these same principles to select organisations and people I work with. 

 

Anthea and Aether. Photo: Flick Smith

How has being Autistic yourself influenced your parenting? 

I feel because I am Autistic I can connect well with my children and can sense what they need and when they need more support. I can’t stand yelling or people being angry, I parent in a calm way, for the most part! I am still human and Autistic, so it can be very challenging at times. In fact, when my daughter has been really stressed out and having severe meltdowns, eventually it wears on me and I end up having a meltdown as well. This doesn’t happen often and I now know what it is. I have also learnt a lot of things that help to prevent meltdown or lessen the impact, for both of us. 

What was it like to have the documentary makers film your family over several years? 

When we were travelling it was a lot of fun to have the film crew join us on some of our exciting adventures! Once we got back home and COVID-19 hit it was a bit more challenging. Life was very busy with appointments, therapies and many other things. It was harder to organise the times to set aside for filming. We also had to be more creative as sometimes we were not allowed to see each other, so would have to do some video diaries and speak online. It was funny watching the filming back, as we noticed how many different hairstyles we had over the years! A lot of it was watching back from several years ago, so it was interesting to see the progress since then.  

What was it like for you to watch Aether’s journey on screen, and how did it differ from experiencing it firsthand? 

Watching the journey on screen gave me some further insight to some of the things he was going through. What you see in the film, although absolutely accurate, is very different to our everyday experience of life. I don’t see a lot of the creative side of Aether day to day. My experience is mostly of typical teenager who likes spending time in their room. I do have to be very vigilant though, looking out for signs of mental health deterioration and diminished self-care. Our relationship at home consists mainly of cracking jokes at each other and me giving a bit of direction here and there to him. I have backed off more and more in this regard over the last few years. I feel as he is nearly 18, he needs to take responsibility on how he is going to be in this world. 

How can art and other passions and interests support Autistic people to express themselves? 

I wouldn’t specifically say art can help Autistic people, as not all Autistic people like or benefit from it. In Aether’s case though, what he creates are elaborate passion projects. Once he gets in the zone he will draw for hours and hours on end. He creates the characters personalities, their clothing, where they live. It’s not just drawing but creating the entire reality. I feel it’s very important for anyone to have things in their life that they are passionate about. This is particularly important for Autistic people as it can help to counteract the additional stressful/negative things that we deal with. Autistic people tend to be monotropic, in that we hyper focus on one thing at a time and the more passionate we are about it, the deeper we get into it. I’ve always encouraged all our children to have extracurricular activities to find their passions. For our youngest this took quite a while as he would get so overwhelmed by too much stimulation. He has now found tennis. I will take him out of class early if he looks like he is getting overwhelmed at all as it is more important to me that he keep wanting to go back rather than push through at that point. 

What advice would you give to other Autistic parents raising Autistic children, particularly those with children exploring their gender identity? 

My suggestion would be to show them that they have your full support, that you will love them no matter what. Allow them the space to explore, experiment and find who they are, while providing a safe place for them. Be kind to yourself. Their journey affects you so closely that you will go on your own journey. There is no right or wrong way to feel, coming to terms with some of these things is not easy. Allow yourself the space to grieve for what you thought was going to be if this is what you need. In our experience, Aether needed to know where I was at in this process. It was very important for him to know that I was struggling to get my head around some aspects, he really needed to know he had my support and that I was trying. When you are ready, seek the supports for yourself in whatever way feels most comfortable for you. 

Who I Am is currently streaming on 10play. You can watch it here. To learn more, visit Who I Am’s website.