parent opinion

'Being a single mum to two autistic kids challenged everything I thought about parenting.'

Autism Parenting” – is there ever a more maligned phrase in the autism community?

If you’re not autistic, as I am, it’s not correct to use this phrase to describe the parenting of a child with autism. 

I have learned so much from the voices of those autistic people out there, who have spoken of their experience with parents who took on autism as an identity, even if they aren’t autistic themselves.  

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Their point is, that even though we are parenting children with autism, and that can be hard and scary and exhausting, that the journey, the autism, actually isn’t ours as parents. 

It’s a confusing divide to navigate.

So much of my experience in the special needs community, both online and in person, has been divisive and fraught, as well as being actually helpful and healing.

 As voices of actually autistic people have been able to be heard more clearly than ever, through advocacy, through technology, through Facebook and Instagram and community, these voices are powerful.  

They’ve been silenced for a long time, they have been told how to “mask” and pretend and how to fit in to society.  

Naturally, a lot of actually autistic people are very critical of how parents of autistic children express and share their experiences online. 

I can forget that when I talk about the difficulties I have in supporting neurodiverse children - that I am not just speaking of my experience as a parent. I am speaking of my children’s childhood. I am telling the world things that they may not want told when they are older. 

Sometimes in the life of a parent of a child with special needs, there is chronic overwhelm, tiredness, self doubt, a sense of failure and anger at supports that can be invasive and parent shaming, hurtful and excluding - so many of us find ourselves in the gaps between the help that exists, and the help that will actually “help”.  

I get frustrated and tired and acknowledge that I, along with other parents, can be offensive in the ways that I speak about my children.  

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This isn’t because I hate autism, or my children, or the world in particular. It’s just because I feel overwhelmed, I feel inadequate. I feel that with my finite resources, I am failing my children.

It’s been a sharp learning curve for me since my foray into the world of autism.  

I was an undiagnosed autistic person, who thought that if the hole in my self-esteem that wasn’t fixed by someone actually wanting to marry me, it would surely be fixed by having a perfect little baby who would knit our family together for eternity?  

A tsunami of emotions and experiences was waiting for that beautiful little child, born almost 15 years ago. 

I remember looking into their eyes and thinking that they seemed like they’d been here before, that I’d never seen eyes so blue, and that I was absolutely terrified that I was responsible for such a precious soul. 

I struggled with parenthood. I hated the feeling of breastfeeding, I found the crying soul destroying, we both slept badly and I declined into an ultimate nervous breakdown. 

Spending almost the whole of my child’s first year alive in psych wards, I struggled with my sense of self and how to parent and be me, when I didn’t actually really know who I was in the first place.  

So, when our precious child started exhibiting some signs of autism, it was easily related to my lack of constant support for him. Attachment problems. So I tried harder, I threw myself into parenting him.

I was parenting from a place of guilt.

I wanted you to see that everything was fine, that I had let everyone down by having a nervous breakdown, but that I’d be fit and skinny and kind and mentally well and everyone would see that my child was the happiest and that I was the best at parenting.

Some say that our children are our best teachers, and I believe this to be true. I wanted my children’s childhood to be about me. My success. My triumph over my adversity, my success story, my inspiration porn. ('Inspiration Porn' was coined by the late Australian disability activist Stella Young, for a loose genre of media depictions of disabled people.)  

I listened to the other mothers in my mothers’ group, and they seemed to have confidence that I didn’t. I doubted myself constantly, and I tried all sorts of measures to control and coerce my child into behaving well.

This was back in the late aughts, when gentle parenting wasn’t really out there, or considered effective. When I yelled, they weren’t afraid of me. They yelled and screamed back. 

It escalated horribly, and I knew that it didn’t work. I didn’t want to make my children afraid of me.

I was beginning to see that my own experience of becoming a human being, was being disingenuous. Of being fake, of trying to take the emotional temperature of the room and then be whatever I thought the people in that room wanted. 

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I started to realise that the things I wanted my children to be were the things that I never managed to be. Popular. Socially aware. Unafraid.  

Instead, all I saw in them were all the things I struggled with.

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I loved my kids so much, but I was frightened for them.  

The world, and children, can be incredibly unkind to those who are different and don’t have that innate sense of fitting in. I suffered terribly from bullying - wherever I went, the joke seemed to be on me.

I cringe when I think back, about how I just wanted to be one of the popular school mums, how I wanted to have play dates, how I wanted my kids to have a childhood that I felt I didn’t have.

They would have consistency and a gang of friends, be one of the group and I would document it all on Facebook, it would look right and I would have finally proved myself as a worthwhile parent and human.  

What an awful, terrible load to put on a child, and how wonderful and excellent that they blew all my plans to smithereens.

One of the pivotal experiences of my conflict between wanting to be insta-parenting and actually parenting my actual child, happened during a dress up day. 

Parents of children with special needs die a little inside every time a dress up day note is sent home. Our children thrive on structure, on things staying the same, on making the “right” choices.  

They often actually like their school uniform because they don’t have to worry that they might have worn something that isn’t “right”. So, school dress up days can be massive meltdown fodder. 

This one particular dress up day, I worked really hard on a cool costume. I was proud of my efforts and knew it would look good on my Facebook wall. I would be officially “nailing” parenting.

The next day, disaster struck. The costume was worn, but vital elements were discarded. This was not going the way I planned. I screamed and yelled and threatened, until I eventually stood there in the school grounds, with discarded accessories (and a few odd glances from other parents), and realised that whatever I was trying to do, it wasn’t working. In fact, it was ridiculous. 

In my attempts to be a good mother, I was trying to impress the world with my compliant child. 

I was trying to prove that I was good, because I could bend my child’s will to mine.  

Then I realised, I didn’t want my children’s childhood to be about me. I wanted it to be about them. 

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I wanted to be their safe space and their calm, not their judge. I didn’t want them to feel like I was another person that they had to impress and entertain with their ability to sit still, to go to school, to sit on Santa’s lap even though he scares you.

I went and sat in my car, and cried, for all the things that I was trying to be as a parent, and all the ways in which they were totally inadequate and just plain wrong. I cried because I knew I had to be real, and let my children be real, and that was terrifying to me.

Not long after Costume-gate, I realised that my (now ex) husband wasn’t committed to letting our children be who they were.

He wanted them, and me, to be calm and pretty and drama free. To follow the rules and put on a smile and entertain.

I realised in my decision to leave him, that I wasn’t a drama queen, or embarrassing. Life is dramatic and embarrassing and attempts to avoid that are attempts to withdraw from real people and real experiences.

Deb and her daughter. Image: Supplied. 

I try not to regret the mistakes I have made in the past.

The ones I made when I just wanted myself and my children to fit in. My children and I can’t go with the flow. We all need processing time, we all need space and time out from people.

We sometimes can’t complete tasks, we need patience and help and kindness to navigate the internal storms that both neurology and environment cause. I cringe when I think of the things I’ve said about my kids and myself in the past. 

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The awful, long, complaining, angry texts that I sent to friends and family, or posted in facebook groups, before I truly understood what autism is all about.  

I grieved angrily the parenting experience that I thought I would have.

I thought I would have baking cookies and I love you, and Santa photos, and Halloween photos, and a million other memories that I now realise are just shitty Hallmark movies. Real life isn’t like that.  

I try to be careful about what I share about my children, because I don’t want to invade their privacy. I don’t want their lives, or my life supporting them, to be inspiration porn.  

We aren’t brave because we keep on going.  

But we do need concessions, along with respect and love and a place to belong.  

Being a single parent to two children with autism is one of the hardest things I’ve ever done. It can be isolating and scary and I can feel that all evidence points to me failing miserably at everything, at being lonely, at feeling that what I spend my life doing (appointments, meetings with teachers, NDIS planning and implementation), is a waste.  

Wanting to be honest about how things are, but not wanting to expose my children to judgement - this is the hardest thing I’ve ever done in my whole life. 

It is hard to turn my back on a world that has a million Instagram pictures of families on outings, doing things that we just can’t do as a family.

It’s hard to get a message from a friend who says that Mangosteen, Juice Plus, Filtered Water or cutting dairy will heal my child and their brain and help their functioning.

I used to get upset at people who sent messages like this, because it’s such a misunderstanding of what autism is.  

Autism isn’t something that needs curing. 

It needs support, it needs love. It needs processing time. It needs to frequently remove itself from other people, because other people are confusing. It’s overwhelming and beautiful and magical.

Any mistakes that I make in the way I speak about my kids or their childhoods, are because I didn’t know any better. 

I am allowed to grieve an experience I thought I would have, but I need to always realise that my children are not a cross to bear nor anyone’s inspiration porn. 

We need empathy, but never pity. In being patient and kind and real with them, they have taught me to be patient and kind and real with myself.  

It’s been the absolute death of any kind of life I thought I would have, but the birth of an authentic life that is real and kind and loving, and I could never regret that.  

Feature Image: Supplied.