… inside the Neurodivergent Home

Behind the closed doors of thousands of homes lies a profound, often unheard but harsh reality: the overwhelming emotional, physical, and financial toll of caring for a loved one with a neurodevelopmental or neurodegenerative condition like autism or dementia.

While these caregiving journeys are often fuelled by deep, unconditional love, they are also scarred by chronic sleep deprivation, the isolation of societal stigma, and the exhausting, daily grief of navigating a world that fails to understand. For family caregivers, the reality of living with these conditions is a relentless balancing act—one that requires acting simultaneously as a medical advocate, legal navigator, and emotional anchor, often at the heavy cost of their own mental health and identity.

One parent of a neurodivergent child told me: “It’s like a constant state of siege from all directions.  You want to help and love but you have only two hands and one heart. You never feel that you are enough, you know enough or can give enough”.

It is perfectly natural for our eyes and our caring instincts to go to the child, but the parents and caregivers are there too, often relegated to the background, and going through incredible stresses and demands.  Caring for children with intense sensory needs, sleep disruptions, or prolonged meltdowns creates a continuous state of fight-or-flight. It is no surprise that parents report elevated anxiety, depression or ADHD symptoms.  Beyond the psychological manifestations lie deadly, higher risks of cardiovascular disease.

And where and when do parents and caregivers learn to cope with their situation?   On top of their normal parenting duties, they must combat intolerant or unsupportive elements in their quest to ensure that the educational and health needs of their children are met.  They are expected to be aware of the legal rights of their children, their own legal rights, and they have to be ready to fight ignorance and indifference.  In their effort to do anything, to go anywhere, to seek support and help, they must juggle conflicting theories and therapies, and doubt and confusion are the last things they need in their plight.

Ironically … and tragically … instead of finding support in their social circle, these parents end up withdrawing from the stream of stares, the mistaken judgements, stemming from ignorance, which see certain behaviours as bad parenting, and the embarrassment of “disrupting” normal social activities … even going to a restaurant, a cinema, or a play area, becomes difficult to face.

And of course, the therapy sessions, the psychological assessments, the out-of-pocket costs, the endless shuttling to and from appointments and the hours spent in waiting rooms do not help either.

All the while, these parents may be feeling guilty at experiencing certain feelings … is my child’s condition in any way my fault?  Am I doing enough? There may be moments where they need to adjust to the change in what they had imagined parenthood would be, topped by the gnawing anguish when the question of how their child will get along without them pops into their mind: How will the world treat my child when I am no longer around?

Questions.  More and more questions, captured in print in the consultations held during the run-up to the launch of Malta’s National Autism Strategy (2021–2030), “a landmark 10-year framework explicitly designed to empower individuals on the autism spectrum and foster a society that meets them halfway, rather than focusing solely on the challenges of a diagnosis. Officially titled Safeguarding Equity: Malta’s National Autism Strategy,the plan represents the nation’s first-ever comprehensive strategy specifically dedicated to autism. Click here

The strategy was well received. On the international level, it was widely approved by international bodies for moving away from portraying autism as a “disorder” and focusing heavily on empowerment. Its wide reach was seen as a model for others to study, with Heta Pukki, President of the European Council for Autistic People (EUCAP), describing the strategy as “unique” and noting that European disability advocates were closely tracking Malta’s holistic approach.

In the local context, while welcoming the framework, local mental health and social professionals explicitly warned that the strategy would become a mere “academic exercise” if it was not backed by concrete actions and real-world funding.

These warnings do not seem to have fallen on deaf ears. Government has established specialized autism units in mainstream schools, including Ta’ Paris Middle School in Birkirkara and Ħandaq Middle School in Qormi. These units provide adapted environments to support student integration into regular schooling. Specialized training programs in inclusive pedagogy have been implemented for mainstream teachers and Learning Support Educators (LSEs). The state funded and built dedicated multi-sensory learning rooms within state educational facilities to fulfill environmental adaptation targets. 

Tasked under the Persons within the Autism Spectrum (Empowerment) Act, the government fully activated the Autism Advisory Council to monitor policy benchmarks and advise the state on lifelong learning and personal autonomy goals. Moving from policy to strict regulation, the Ministry for Inclusion suspended funding to private service providers upon discovering serious compliance, health, and safety failures during official state reviews. This is the attitude and implementation that parents and serious professionals seek.  

The saying that “you must put your money where your mouth is” cannot be more realised than through the Labour Party’s pledge to fully fund the cost of required therapeutic services for neurodivergent individuals and children with disabilities, with further support for persons beyond the age of 18.

And yet, in writing, I realise that the persons suffering from neurodivergence have again completely hogged the limelight, and I remember that my intention was originally to focus on those parents and caregivers who remain in the background.  Yes, of course, the services and facilities will help.  The funding will help.  Do we risk forgetting someone or something?  

Behind every milestone achieved by a neurodivergent individual is a team of dedicated caregivers. Yet, in our rush to provide the right therapies and resources, the physical and mental health of these parents and guardians risks being sidelined. It is time for a shift in perspective. Caregiver well-being is not a luxury or an afterthought; it is a critical component of the care equation. When we invest in the health, rest, and emotional support of parents, we are investing in the long-term success of the individual. True inclusivity and support must mean caring for the caregivers, too.