By Tara Thompson
It’s a common statement that I’m sure a lot of parents with children on the spectrum have heard perhaps once or twice (or 50 times).
While in many cases comments such as this are meant to be supportive and reassuring, there are times it makes you feel that you are over-dramatising your child’s behaviour; that an autism diagnosis is the new craze or that it’s easier to just ‘blame’ it on something else.
I remember speaking with one of my daughter’s therapists (for her cerebral palsy) about her behaviour and mentioned that it had been brought up that she may be diagnosed with autism, to which she replied ‘I think autism is being overly diagnosed these days’.
I also remember when she was officially diagnosed that I felt a mix of emotions: relief that I could gain a better insight into her world and why she acted certain ways, but I also experienced a sinking feeling knowing that not many people would understand.
It’s strange that my daughter’s cerebral palsy diagnosis is so accepted and no one questions it. It is visible at all times; it is evident. But an ASD diagnosis seems to bring either a heap of opinions or is disregarded. Sometimes it isn’t easily recognisable and, well, all kids have tantrums don’t they?
I feel there needs to be a little more awareness out there as to what autism actually is, to promote acceptance, remove stigma so that children aren’t misunderstood and parents don’t feel judged.
As a mother of three with a previous career working with children I am quite accustomed to what a tantrum looks like. Minor or extreme, a relaxed chilled child or a hyperactive buoyant child; tantrums don’t discriminate. I put my daughters behaviour and frequent ‘tantrums’ down to pain and discomfort caused by her cerebral palsy, frustration brought on by her body not being able to move the way she wanted and to her having a bit of a feisty and cheeky personality.
But as she got older, they became more frequent and intense. They weren’t caused by not getting her own way, she wasn’t acting out because she was just over-tired or frustrated about something, they weren’t starting simply because I asked her to do something or, heaven forbid, I gave her a green bowl when she wanted a pink bowl (the amount of battles I have had over this back in my preschool teaching days).
The typical tantrum strategies I had up my sleeve just weren’t going to cut it. I wasn’t able to simply just give in or give her what she wanted in a desperate attempt to keep her quite. I couldn’t ignore the behaviour to show it wouldn’t be tolerated or distract her by something else.
There was nothing I could do to calm her in these moments!
While she does still have a ‘normal’ tantrum, because let’s face it she is a toddler, I have learnt that there is a huge difference between a typical tantrum and an autistic meltdown.
Like most girls, my daughter loves dolls – it’s really all she is interested in – but most of the time it is impossible for her to play happily with them. I just figured she was limited in her play due to her cerebral palsy and this frustrated her. But I began to realise the things that were distressing her were not due to her physical issues. When you feel that you’re walking on eggshells in order to play with your daughter something isn’t quite right. I needed to ensure that her doll’s blankets were perfectly even on each side, tucked right underneath and it was a must that the top of the blanket touched her doll’s chin. Her doll’s teddy had to be placed at it’s right shoulder facing down…you can see where I’m going here; so many different ‘rules’, and most of the time I still couldn’t get it right. Playing dolls always ended in intense meltdowns and was stressful on everyone.
Then there are the things that are so important to her but seem so insignificant to us. I remember one time she was so worked up because I didn’t understand what she meant when she said ‘are we going to the netball court with the white or the red’ She picked up that I was unsure what she meant and instantly broke down because of it. It took 20 minutes to just get her in the car and she still wasn’t calm – all glassy eyes and a blank stare. She was pretty much unresponsive. I had no idea what she was taking about until a week later when we went to her sister’s netball training and she said “this is what I meant mum, this netball court has white and red lines, the other place has only white lines”. There were barely any red lines. But she notices everything; she takes in so much wherever she goes and fixates on particular things that become extremely important to her.
I began to notice that if something changed in her routine she wasn’t able to cope; that if something was out of place in her room it caused her anxiety, that meeting new people or too much social interaction exhausted her. This all led to her behaviour intensifying. More often then not if we went somewhere she would meltdown as we were leaving or as soon as we got to the car, even though she was ready to leave. It got to a stage where I was scared to take her anywhere by myself as I wasn’t sure how she would cope or react to certain situations. I struggled as I felt like I had no idea what I was in for as each day was and felt so hopeless.
A typical tantrum is goal orientated and can usually be calmed whereas an autistic meltdown is mostly caused by being overwhelmed by sensory stimuli and can’t be calmed by the usual tantrum strategies.
It is clear to me now that she has no control over her meltdowns and that it is almost impossible for her to be distracted.
I have learnt so much about my own daughter in a few short months. I can now appreciate the way she acts without feeling clueless as to why. You see, her autism simply means she perceives things in her own way; her brain is unique and wired a little differently. It means I need to be able to come into her world and try to understand while also teaching her strategies to also come into mine.
Yes, she can seem and act perfectly normal and, well there is a simple answer for that; she is! But acting a particular way at times isn’t easy for her, it’s exhausting – hence the meltdowns. Her obsessions, repetitive behaviours and constant need for routine bring her calmness and help her to cope and enjoy day-to-day life.
So yes, all kids have tantrums, they are frustrating and exhausting but sometimes it’s just a little more complicated then that.