• Something about the label ‘high-functioning’ didn’t sit well with me. (Cavan Images RF)Source: Cavan Images RF
The label reassured me, and helped me feel seen. It gave me something concrete to work with. Yet, something about ‘high-functioning’ didn’t sit well with me.
By
Noor Abdul

17 Aug 2020 - 9:20 AM  UPDATED 17 Aug 2020 - 1:49 PM

“Your daughter has high-functioning autism.”

While my five-year-old daughter played with the toys in the doctor’s office, I felt a tumult of emotion: relief, grief and validation, to name a few. I knew there was more going on with my daughter’s rigid behaviour, obsessions and explosive temper. These were the harder flip sides to her deep creativity, wisdom beyond her age, and joyful theatrics. The label reassured me, and helped me feel seen. It gave me something concrete to work with. 

Yet, something about the label ‘high-functioning’ didn’t sit well with me. 

After a successful preschool drop off, my daughter’s teacher said that there a few other kids with autism in my daughter’s preschool. “But your daughter is so much better than X,” she smiled. I smiled back uncomfortably. I met this little girl who was “low-functioning”. She was much less verbal compared to my daughter, and was more likely to grunt and scream when overwhelmed. My daughter can pass as neurotypical, albeit a distracted one, on a good day. 

“But your daughter is so much better than X,” she smiled. I smiled back uncomfortably.

As I reflected on that on the drive home, it finally hit me. High functioning doesn’t mean easy functioning. And what if these labels fluctuate from day to day, or from hour to hour, as they so often do? A truer expression is this – just autism.

According to Autism Awareness Australia, “‘high functioning’ presumes functional strengths that an individual may not have; by contrast, ‘low-functioning’ comes with preconceptions of not having strengths or abilities.”

Some days, my daughter and I are both high-functioning. These are the days where we’ve both had good sleep – a true miracle. The nature of our creative brains makes it so difficult to wind down and sleep. These are the days where our days simply flow so well, because we can flow so well. Daily demands are easy to handle. We can laugh at setbacks and shrug it off.

On other days, we are low-functioning. This often happens after a late night, bad sleep, or extra stress. Maybe all of the above. Because she is only five, basic tasks like brushing her teeth, using the toilet and having a shower feel like too much of a demand. And yet, outwardly she looks exactly the same as the day before. These are the days where her school refusal is at its peak. “I’m not going to school. N-O. I’m going to stay in my room and not come out. You cannot force me,” she declared, glaring at me. I’ve learned the hard way that screaming back at her and forcing her into her car seat doesn’t work. She can unclip herself now and run out of the car.

Because she is only five, basic tasks like brushing her teeth, using the toilet and having a shower feel like too much of a demand.

When I am low-functioning, then I am much more likely to be triggered by her. On my low-functioning days, I try to give myself grace. These are the days where I leave the laundry unfolded, the dishes in the sink, the floor un-mopped. These are the days where it’s okay to let my kids and I zone out to yet another Frozen or Frozen 2. It’s about getting through the day, attending to my basic needs, and helping my kids with their basic needs. Basically, my priority is to keep myself and my kids alive. I have no energy to write anything on these days.

These are also the days where I don’t at all expect my daughter to make it to school, or practice writing, or reading at home. That would be too much of a demand for both of us. 

Adults and children with autism like my daughter and I feel tremendous pressure to just ignore our discomfort and get on with living the way neurotypicals do. We force ourselves to make eye contact, engage in small-talk, and ignore our sensory needs. We hide our stimming and make ourselves small. We make neurotypicals feel comfortable at the expense of our own authentic selves. 

We hide our stimming and make ourselves small. We make neurotypicals feel comfortable at the expense of our own authentic selves.

This way of living is not sustainable. This is what leads to meltdowns, in the short-term, and mental, physical and emotional health problems in the long-run. 

Masking is traumatic. I’ve been doing it my whole life, and it’s hurt my mental health and sense of self. I want better for my daughter. I am building my tribe, so I can help her build hers. I am learning now, as an adult, to recognise what I actually need. By recognising my needs, I can meet them, instead of throwing an adult tantrum or resorting to passive aggressiveness when I am overwhelmed. 

It is so hard, sometimes, to recognise what I need when I have spent decades pushing myself beyond breaking point just to feel worthy of love and belonging. I want better for my daughter. I want to give her the acceptance and safety I never had, as a child, teenager, adolescent and young adult. And the truth is that I can only help her meet her needs after I meet mine. I grow with my daughter in our journey of living our authentic, autistic selves.

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