Diagnosis

What its really like to parent a child on the autism spectrum

Team Kindship
• Date:
April 10, 2022
• Reading time:
3 minutes

There definitely aren’t any ‘how to’ books or resources on this topic. I feel like this question could be answered by many contributing parents, with many different stories, tips, and advice…. to still not have a ‘one size fits all’ answer. Let’s say it’s more of a never-ending series.

The thing is autism is a spectrum, meaning its extremely broad with many different severities, offering multitudes of differing characteristics and symptoms. No one child with autism will look the same as another and the ‘but they don’t seem like they have autism’ comments are possibly one of the most infuriating things you can say to a parent with a child with autism.

I remember when I was pregnant with my first child. I was confident, I read all the ‘what to expect books’, went to the classes, read all the things, and had experience working with children. Surely, I would have this motherhood thing down pat. I knew when my daughter should sleep, how long to go in between feeds and that dummies were a ‘no no’. Yep, I was the perfect parent before even becoming a parent. 

How fooled I was!

She had a dummy within the first week, was a terrible sleeper and wanted to feed every 2 hours. 

The toddler years were a little easier. She developed how a ‘typical’ toddler would, so I knew what I was in for, the tantrums, the teething, the milestones. Yep, many hard moments but looking back now, what a breeze it was!

Fast forward a few years later to child number two. 

Despite learning first time round that I can’t be prepared for ‘all the things’, I still felt confident that I knew what parenting looked like. Insert a premature birth, extended NICU stay, relentless specialist appointments and an early diagnosis of Cerebral Palsy and wowza, wrong again!

Despite all that, what puzzled me most was her behaviour, and I was constantly pondering the same questions repeatedly.

Why is she always upset?’

‘Why is she so attached to me?’

‘Why doesn’t she seem to like being around other people?’

‘Why are her tantrums so intense?’

‘Why did I struggle so much with her behaviour?’

‘Why does she scream every time we leave places?’

My husband kept mentioning autism and I kept brushing it aside, because I knew what ‘autism looked like’ (so I thought). I always put everything down to her cerebral palsy and then sometimes convinced myself that I just wasn’t doing a good enough job.

The diagnosis

Desperate for help with navigating the challenging behaviours that my daughter was constantly showing, I finally seeked advice from a behaviour psychologist. From that first initial appointment without even meeting my daughter she said, “I am 95% sure your daughter has autism” and within a few months after the required assessments it was confirmed. 

All the emotions!

Relief! So, it wasn’t just me or my parenting. It wasn’t that I was failing at this mum gig. How reassuring to now have answers and be able to get the support my daughter needed.

Shock! But she seemed so different to the children I had taught with autism. I remember seeing the parents of children with autistic children at the preschool I worked and at and always felt a sense of pity, not for their children (they were wonderful) but for them. They always looked so exhausted, and I constantly thought ‘I just don’t know how they do it day in and day out’. To be honest the thought of it scared the crap out of me.

Petrified! Yep, I was shit scared. What does this mean? What does her future look like? How will I be able to support her when we were already navigating a journey of cerebral palsy?

Curious? Excited by the thought that I could learn more about her needs and gain an understanding into her world.

So many emotions all felt at once for many months after that confirmed diagnosis, along with ‘Ok, so what will our autism journey look like for our family?’

Parenting a child with autism

If someone asked me to give two words to describe what parenting a child with autism looks like? Challenging and fascinating immediately come to mind. I’m not going to beat around the bush and only discuss the amazing things that this ‘autism parenting gig’ has to offer. Because the truth is, it is bloody hard! 

Not just hard through the trickier stages, not just hard some days. It’s hard a lot of the time.

I think for me the part that I struggle with most is not knowing what each day will bring and often having that sense that I feel like I’m walking on eggshells. My daughter struggles with emotional regulation, meaning that she has a difficult time keeping her emotions in check. It’s so hard to see her constantly dealing with explosive meltdowns because her mind simply can’t handle a world that just doesn’t seemed equipped to understand her needs.

She spends most of her day masking behaviours and trying to push away all the sensory overload that crowds her mind. Noise heightens her, change triggers her, social interactions exhaust her…just to name a few daily challenges. It’s impossible for her to just have a cruisy, calm, and collected day and that saddens me. 

We don’t go a day where challenging behaviours aren’t around and as a parent its exhausting trying to constantly stay patient and help her through it. Poor me, right? I’m not the one even having to deal with all these huge overwhelming emotions and it’s so taxing. At times I feel guilty feeling this way, but you know what I am human and constantly walking this road is exhausting. There is no point pretending I’m this superhuman mum that doesn’t find this journey hard, it doesn’t do me any favours and certainly doesn’t help others thinking I’ve 100% always got my shit together.

I think another aspect I find challenging to deal with is that autism is such a misunderstood diagnosis. I remember when we were in the stages of getting diagnosis assessments done, I shared it with one of my daughters’ regular therapists, in which her reply was ‘Oh it seems everyone puts everything down to autism these days, everyone is getting diagnosed’. If that’s the view that some professionals still have then it just confirms that many others simply just don’t understand autism. Constantly having (well meaning) friends and family members share how their child is the ‘same’ and has the same anxieties and struggles. It can be an extremely isolating journey that no one seems to understand. My daughter isn’t naughty. She doesn’t act certain ways for attention, and I certainly don’t just need to ‘discipline’ her differently. It’s not just a fad diagnosis that parents are wanting so it excuses behaviours! It is a much-needed diagnosis that some parents are seeking so they can best accommodate the needs that their child has. It actually scares me to think about if I wasn’t equipped with the knowledge, I needed to truly understand my daughter, what a daunting and frightening world it would be for her.

Is parenting a child with autism filled with just a handful of stressful and challenging moments day in and day out? Definitely not!

My daughter is incredible, and I find her fascinating. I feel privileged that I get to have insight into her mind and be able to step into her world to better understand her.

She is the most unique, witty, smart, literal, accomplished little 7-year-old I know. 

I love how her fixation with time ensures I am never late. “Mum its 8:05 you’re not dressed, we need to leave in 25 minutes”. Her little time updates start from the moment she wakes up.

I am captivated by her amazing memory and the attention to detail she shows everywhere she goes. Fortnightly visits to her behaviour phycologist and always notice any changes to her office. “You moved the candle; it was on your desk last time?”. This is also super helpful when I’m at the shops and can’t remember what I need!

I am obsessed with her quick whit and the way she immediately puts smiles on people faces just by being unapologetically herself!

I am forever impressed by her attention to detail and high standards she has for everything she does.

I feel I need a whole blog just to capture all the rewarding and wonderful moments I get to encounter just by being her mum. Yes, parenting a child with autism is hard at times and it’s a whole different parenting journey compared to my two other neurodiverse daughters, but I can honestly say I wouldn’t change it for the world. The things she has taught me have built me to be a stronger, more confident, and patient version of myself and I count myself lucky that I get to see the world from her perspective. Forever grateful that I was chosen to be her mum!

 

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