By Nazreen Bibi
Evidence suggests that autism parents experience higher levels of stress, anxiety and depression than the general population. As a mental health nurse I have seen that unmet parental mental health needs pose a significant risk to social, psychological, and physical wellbeing of the parent and the child with ASD.
The analogy of the jug and cups is fitting. Imagine yourself as a jug full of water and the cups surrounding you are protective factors, such as sleep, relationships, advocacy, work and leisure. All those cups need some water in them so that your jug level is stable.
Now, imagine being an autism parent facing sleep deprivation, constant worry, continuous damage to the home, meltdowns, the need to fight endless medical, social and education system battles — the cups are depleted and your jug overflows, filled with anxiety, stress and exhaustion.
In my last blog, The Dangerous World of Marginalizing Autism Parents, I discussed some of the toxic anti-parent ideologies too often regurgitated on #AcutallyAutistic Twitter and social media. I am concerned these nasty attacks can increase psychological distress amongst vulnerable, tired autism parents.
Imagine days of working so tirelessly for your loved one with autism, only to log into social media to be bullied and gaslighted by strangers calling you an abuser and a failure, and claiming to be able to do a better job than you (when they appear to have no knowledge of how severe autism presents itself and the impact it has on the lives of the whole family). This ideology is harmful, harmful to parents who are already stretched in terms of mental fragility and emotional and physical wellbeing, low on resources in terms of sleep and rest. The impact can be devastating for the parent and their severely autistic child whose entire wellbeing is dependent on their parents wellbeing.
Or being accused of violating your child’s privacy. What? Do you mean my nonverbal daughter’s right to be invisible? It is this very idea that people like my daughter must be hidden away somewhere that causes parents like me distress and anxiety. Autism awareness is the cornerstone of autism advocacy. Often when neurodiversity proponents put forward the argument that parents must “seek consent” what they fail to understand is that proxy advocacy is the primary solution when an individual lacks capacity. Who better to advocate than the person who loves the individual more than any person alive?
Then there is the neurodiversity proponents’ obsession with fine details, for example, minor points of terminology, or the blue color, or the puzzle logo. Their incessant harping and carping over the most trivial matters is yet another attempt to diminish and undermine parents and their lived experience of autism.
Bullying can exacerbate mental health fragilities and vulnerabilities; it is well recognized that it can lead to or worsen feelings of isolation, rejection, exclusion, and despair, as well as depression and anxiety. In the case of autism parents, this can have potentially serious consequences. For example, here in the UK, severely autistic children can be forcibly placed into care, and often this is due to parental stress, anxiety and depression and lack of early intervention, stigma and social isolation.
Parent advocacy on behalf of children who have no voice is one of the most important cups surrounding the jug. Take away that cup, and you disempower and silence parents, with negative consequences for them and their children. Anyone faced with the arduous task of caring for severely disabled loved one needs encouragement, recognition and support, not a daily virtual fistfight.
Always remember, mental health is every bit as important as physical health. Autism parents are just as worthy of dignity and respect as people with autism.
Nazreen Bibi is a mental health nurse, parent, campaigner and advocate based in the UK.