A Caregiver’s Lived Experience: Ordinary Life isn’t Ordinary on the Spectrum

Bethany Ly, a fourth-year Bachelor of Occupational Therapy (Honours) student, has been working as a support worker for Alex, a young boy who sits within the “atypical” range of the neurological spectrum for a year and a half.

With her bachelor’s degree in its final months, Bethany reflects on the experiences of spending time with Alex, and the lessons she’s picked up along the way about life with a neurodivergent child.

[Pseudonyms used]

Most people are neurotypical, more people are beginning to gain awareness of neurological difficulties, but not many understand what life can look like for a caregiver with a child on the spectrum.

Mary is a mother of two – her oldest a wonderful daughter, and her youngest a wonderful neurodivergent son. Over the years, Mary’s son – Alex, has been diagnosed with Autism Spectrum Disorder (ASD) Level 3 amongst other intellectual conditions. I have been Alex’s support worker since the third year of my Occupational Therapy degree. It is now my fourth and final year, and support work shifts have become time spent with a dear friend of mine.

Taking me through her journey as a caregiver, Mary recalled the first noticeable signs during Alex’s developmental years – speech and language delays; then came the first conversation with a paediatrician, then a therapist, and countless more have followed since. For a change, it is my hope that my conversation with Mary will have captured a boy whose mind happens to be on a different channel compared to most, a world that can be unforgiving at times, and a mother who perseveres through it all.

Much like the healthcare system, almost every other life aspect isn’t nearly as straightforward for Mary and Alex as it is for others. From navigating the appropriate health services for her son, to seemingly typical parental duties, there were always barriers to overcome. Mary highlighted major difficulties with finding a school that supported Alex, but even more so was one that accepted his level of needs. In trying her luck to have both children attending the same school, Alex was assessed and rejected. It took significant time and effort to find a different school that offered enough support. Other challenges for Mary include things like taking Alex to visit friends or going out in public as a family unit. “Different times have different issues”, Mary said. Anxiety is constant – “what’s gonna happen at Movie World? At our friend’s party? Will we have a smooth flow at the shops?”. For a moment, imagine these are the guaranteed daily thoughts in your life. Overall, Mary summarised the burden on caregivers as being heavily influenced by one thing: “not being able to do things you would do with other kids in a typical way”.

Attending to life roles is also challenging – Mary’s job is highly demanding, and so are housekeeping responsibilities. However, the fight doesn’t end there. Negative social attitudes towards children like Alex are incredibly prominent, and likewise incredibly damaging. Judgemental looks and preconceived opinions aren’t subtle, yet according to Mary, they can be powerful enough to stop caregivers and their neurodivergent children from engaging in community activities altogether. It’s almost a forgotten fact that for any of us, some places can be too bright, too loud, or too overwhelming, hence the term ‘spectrum’ – a reference to our tolerance of the surrounding world. Life is much easier if you fall within the ‘typical’ portion of the scale, but as a society, we should remind ourselves that the ‘atypical’ range still belongs on the same spectrum.

Despite everything described and more, Mary’s self-identity and ownership over motherhood are held with grace and integrity. An educated woman with an outstanding job and a great cook, Mary names her most important role as “being a mum”. She affirms that having a neurodivergent child has not altered her perception of motherhood. When asked, she further identifies as “just a mum to two kids” – a phrase which rolled with the kind of certainty that cannot and should not be taken for granted. To Mary, Alex is her child and without a label.

For those reading, firstly recognise your judgement, and don’t stare any longer than you would at a child whose “tantrum” is driven by hunger rather than sensory overload. Even better – help if you know how, though self-reflecting and re-evaluating any negative attitudes you may have is as good a start as any.

For other caregivers, Mary has beautiful advice. Access any informal support you may have; for example, call the children’s grandmother to cook the family dinner, or schedule the cleaner right before the weekend (when you’ll actually spend time at home). Make time for a massage and a manicure (or more). The good days are good, so celebrate the little wins. On the bad days, take a deep breath before getting through them; remember, you have before, and you will again as long as you take each day as it comes. Finally, others’ attitudes don’t have to be yours too, so have a positive outlook on the future even amidst all the uncertainties.

To show respect for Mary and my special friend Alex, Mary’s words echo to conclude my article –

“Your child is your child first before any limitations. Do your best, because whatever you’re doing, it makes a difference”.