Mothers on the Frontline: Autism, COVID-19, and the New PIP Criteria

Autism Hounslow Mother’s Day – EID – solar eclipse – Celebration @ Holiday Inn Brentford

Appearances can be deceptive! Mothers including autistic mothers are worried that the experience of autistic people during COVID higher hospitalisations, adverse mental health impacts, preventable deaths—will be reflected by welfare reforms like the new Personal Independence Payment (PIP) regulations. Many autistic individuals specifically non learning disabled individuals already face difficulties when their experiences of disability do not neatly fit into traditional, quantifiable categories. For example, while some disabilities are measured by visible physical limitations, the unique social, sensory, and communication challenges associated with autism might not add up to the “four-point” threshold required in a single activity under current PIP criteria. This systemic mismatch can mean that policies intended to support disabled people end up leaving out those whose functional impairments are less obvious but nonetheless deeply affect daily life2.

In many ways, the disproportionate impact of COVID-19 on autistic communities—and the subsequent risk posed by these new PIP criteria—reflects broader societal patterns regarding how the worth of autistic lives is valued. During the pandemic, autistic people often encountered barriers to accessing timely healthcare, struggled with disrupted routines, and experienced heightened anxiety due to rapid changes. These factors may have contributed to higher hospitalisation rates and poorer outcomes. When the assessing framework for benefits overlooks the everyday challenges faced by autistic people, it sends an implicit message that their unique needs are less significant than those of others whose disabilities are more readily measurable. The situation underscores an enduring bias in social policy: when systems rely on narrow definitions of “disability,” they risk devaluing experiences that are more nuanced, yet equally critical to one’s ability to live independently and with dignity1.

Critics of the current PIP reform argue that these changes do not reflect the actual lived reality of many autistic individuals. Instead, the reforms seem to prioritize reducing costs over adequately supporting those in need—an approach that can be interpreted as a societal undervaluation of autistic people. This perspective is echoed by advocacy groups who emphasize that many autistic adults already face significant employment barriers (with statistics showing that only 3 in 10 autistic adults are in work) and often rely on benefits as a lifeline for everyday support. It raises an important question: to what extent do our policy frameworks, by failing to incorporate the full spectrum of neurodivergent needs, mirror the broader social judgment about the worth of autistic lives4?

The crux is that both the disproportionate negative outcomes observed during COVID-19 and the design of the new PIP criteria may be symptoms of a deeper, systemic issue—a society that often does not fully acknowledge the intrinsic value of autistic lives. This connection challenges us to rethink how disability is measured and how benefits systems might be reformed to be more inclusive and reflective of diverse experiences. It also emphasizes the importance of involving autistic people directly in the discussion about what support truly means for them, ensuring that any changes to assessment criteria genuinely capture the challenges they face on a daily basis.

There is much more to explore here, especially regarding how policy reforms can be reimagined to honor the diverse ways disabilities manifest.