As an autistic teen I depended on the benefits system – we’re all at risk if harmful reforms go ahead

The government insists that welfare reforms returning to parliament for further consideration today (9 July) are about encouraging more people into work. But cutting social security without first reforming the systems that exclude autistic people from employment is not just ineffective, it’s harmful.

The personal independence payments (PIP) assessment process often fails to account for the fluctuating and non-visible nature of autistic disability. At my charity Enfold, which supports autistic families, we hear stories every week of autistic people denied support for being “too articulate”, or for masking their anxiety so effectively that assessors miss the reality of their needs.

To win over Labour rebels, the government has delayed the changes to PIP, but cuts to the health element of universal credit are still going ahead. The welfare bill proposes locking in a two-tier benefits system, where current claimants retain full support while new applicants face reduced entitlements. This risks creating a future in which many autistic people, particularly young people, are excluded from the very support that enables independence and self-determination.

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Three-quarters of unemployed autistic people say they want to work, but just 16% of autistic adults are in full-time work. The problem isn’t motivation, it’s opportunity. Autistic people face inaccessible recruitment processes, inflexible workplaces and a lack of understanding from employers. Without a cultural shift in how we define, recruit and support talent, these employment statistics will not improve.

My own journey through this system is a testament to both its necessity and its gaps. As an undiagnosed autistic teenager, I grappled with severe mental health challenges. For many years after, I depended on the benefit system, not as a choice but as a lifeline. The reality was that the world felt inaccessible – every step, whether navigating official paperwork or simply leaving the house, was its own mountain to climb.

When I eventually started working, it was only possible on a part-time basis. The workplace environment, the constant presence of people, the noise, the expectation of seamless communication – each posed its own significant challenge. While I was eager to contribute, the world of work was rarely designed for someone like me. That recognition, along with the voices of many other autistic people, drove me to found EnFold in Northamptonshire, a charity born from the urgent need for autism support that truly understands and adapts to lived experience. Today, I work full-time in an organisation that proudly offers a supportive and inclusive environment. This change was only possible because I had the scaffolding of adequate support, and because EnFold was built with neurodivergent strengths and needs at its heart. 

We’ve made inclusive recruitment a standard, not an exception. There are simple, low-cost adjustments that make a world of difference. We provide interview questions in advance, share photos of the interview panel to reduce anxiety, and offer flexible formats for candidates to communicate their strengths. For our staff, we provide flexible working hours as standard and have a culture that enables employees to ask questions and seek adjustments.  People who have previously struggled at work are thriving! If we, as a small charity, can do it, so can others.

On top of these structural hurdles to employment, the very process of seeking support to get employment is a labyrinth: complex, confusing, and laden with hidden obstacles. Many autistic people struggle with the initial step, simply picking up the phone to request a form or navigating the anxiety-inducing environment of a job centre can be overwhelming. For some, the sensory overload or the unpredictable nature of in-person appointments becomes a barrier, shutting the door to support before the process has even begun.

The welfare bill, as it is currently drafted, also sends a troubling message: that future needs are less valid than current ones, simply because they haven’t happened yet. That a young person who has not yet claimed disability benefits is somehow less deserving of a dignified life than someone who already has. It betrays a fundamental misunderstanding of what disability and neurodivergence really mean.

As the bill progresses through parliament, it’s more important than ever that we all seize the opportunity to propose meaningful amendments.

Firstly, the government must immediately halt the implementation of the universal credit changes until the review of PIP has concluded. Secondly, it is not enough to simply consult disabled people after decisions are made. There must be a formal committee of disabled individuals and organisations, including autistic and neurodivergent people, who are empowered to co-produce reforms from the very beginning. Their lived experience and expertise must be at the centre of every stage of the process, guiding both the design and delivery of these changes.

Thirdly, there must be significant investment in holistic, tailored support systems that recognise and respond to the complex realities of life for autistic and other neurodivergent people. 

Lastly, it is essential that in redesigning the welfare system, the government simultaneously commits to fundamentally redesigning the support structures for disabled people in work, making sure employment is truly accessible, sustainable, and inclusive. The government must lead a genuine cultural shift in employment, ensuring that inclusive hiring practices become the norm, not the exception.

This moment calls for more than policy tweaks; it calls for a renewed commitment to equity, inclusion, and justice. I urge policymakers, practitioners, and the public to listen closely to those with lived experience because when we build systems with autistic people in mind, everyone benefits.

Diane Johnson is the founder and CEO of EnFold, an autism support charity based in Northamptonshire.

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