Autistica – Written evidence (YDP0020)

About Autistica

Autistica is the UK’s leading autism research and campaigning charity. Our mission is to create breakthroughs that enable all autistic people to live happier, healthier, longer lives. We do this by funding research, shaping policy and working with autistic people to make more of a difference.

In 2021, we launched a series of ambitious and visionary 2030 Goals. One of these is that by 2030, the employment rate for autistic people will have doubled. We are currently running a series of projects to achieve this goal, including supporting Sir Robert Buckland KC MP’s review of autism and employment.

General

What barriers do young disabled people face when leaving education and entering the job market and workplace? Does this differ between different conditions or disabilities, and if so, how?

A range of barriers across education, employment and our wider society all contribute to autistic people experiencing one of the lowest employment rates of all disability groups.

Growing up, autistic young people may have less access to extra-curricular activities and early work experience, either because these activities are not themselves accessible or because the young person does not have the energy to spare in navigating a neurotypical world.[i] For many young people, first jobs are in the service industry such as retail and dining; while every autistic person is different and some will excel in these roles, for many the overwhelming sensory environment and rigid social expectations shut them out of these sectors. This, in turn, puts young autistic people at a disadvantage when they seek to build a career.

Like many disabled people, autistic people face barriers in recruitment. Job descriptions are often vague and generic, with typical requirements such as “team player” and “excellent verbal communication” deterring autistic people from applying regardless of whether those traits are truly necessary for the role.[ii] Interviews are largely based on answering unknown questions quickly under pressure, which many autistic people find particularly difficult, and these questions are often framed in a non-literal way which autistic people are likely to misinterpret.ii Recruiters may also sift out autistic people through their conscious and unconscious judgements of non-verbal communication during an interview, for example the interviewee’s eye contact.

These outdated and discriminatory attitudes continue as an autistic young person enters the workforce, with one study reported more than half of autistic adults had been bullied by someone at work.[iii] Some will attempt to “mask” their autistic traits to avoid this, at great cost to their physical and mental health.[iv]

While disabled people are legally entitled to reasonable adjustments under the Equality Act 2010, access to adjustments in practice is a mixed picture. Many autistic people are not diagnosed until later in life, if ever, and will therefore not know to ask for adjustments.[v] Furthermore, not all neurodivergent people will identify as disabled and this is often a contentious topic, leaving many unsure as to whether they “count” as disabled for Equality Act purposes. Others still are reluctant to disclose that they are autistic for fear of stigma and discrimination, often informed by past negative experiences.[vi] For those who do ask for reasonable adjustments, the onus is usually on the employee to identify specific adjustments –especially difficult for young people entering the workforce for the first time – and many report that these adjustments are refused or poorly implemented.[vii]

How far do barriers to young disabled people accessing other public services, such as health and care services, present a barrier to young disabled people accessing the workplace?

Many autistic people are not diagnosed until later in life, if ever.v Even where a person is identified as potentially autistic, it is now the norm to wait years for an assessment; in June 2023, there were almost 11,000 new referrals for an NHS autism assessment compared to 645 people receiving a confirmed autism diagnosis, with the backlog expected to surpass 200,000 by next year.[viii] Those who are not diagnosed may not be aware that they are legally entitled to reasonable adjustments, or may not have their needs taken seriously.

With or without a diagnosis, most autistic people receive virtually no formal support.[ix],[x] This contributes to autistic young people facing difficulties in education with a knock-on effect for employment prospects,[xi] as well as poorer mental and physical health outcomes[xii],[xiii] which can prevent or delay entry into the workforce.

Scope of the inquiry

2) We have not focused this inquiry specifically on the experiences of young people with an Education, Health, and Care plan when they leave education and enter employment. What are your thoughts on this approach, and are there particular benefits or drawbacks to it? What other focused approaches could the inquiry take?

Almost half of young people identified in school as autistic do not have an Education, Health and Care Plan,[xiv] and we support the inquiry in including this group. That said, where EHCPs identify specific support needs in a young person, this can be a useful tool in identifying potential reasonable adjustments in the workplace.

Support for young disabled people

3) How effectively do education systems provide careers advice, guidance and support which meet the needs and career aspirations of young disabled people? How could this be improved, and what examples of good practice are there in the UK and abroad?

Careers advice, guidance and support for autistic people are often mixed. Too often, autistic people are assumed to be unsuitable for work, with little consideration for how they could be supported in the workplace or what they could achieve if adjustments were in place.

a) Do staff in schools and other education settings providing careers guidance and advice have the appropriate training and resources to support the needs and aspirations of young disabled people?

There are a range of specialist careers advisory services available – for example, see talentinocareers.co.uk and samee.co.uk. However, in practice, resource in schools is often limited; this means that careers advisors are given too little time with the young person to get to know their strengths and needs. 

4) How far do employment support mechanisms such as Access to Work or Disability Employment Advisors meet the needs of young disabled people entering the job market for the first time? How could these services be improved?

Access To Work can often provide crucial support for autistic people, but awareness of this remains limited. Furthermore, some report that the process of applying can itself be inaccessible and unclear, particularly for young people entering the job market for the first time who may not be sure what their needs will be.

What is the first point that a young disabled person would engage with an employment support scheme, and how are such schemes communicated to young disabled people?

In many cases, these schemes are only available after entering the workforce. For those who are diagnosed while already in the workforce, they may engage with relevant employment schemes after this point.

As some autistic and other neurodivergent people do not identify as disabled, and whether neurodivergence is a disability remains a contentious topic, many neurodivergent people are left unsure as to whether they “count” as disabled for the purposes of these schemes.

5) What are young disabled people’s experiences of the transition from education-based support to employment-related support? Do young disabled people face barriers to accessing support during this transition? Could these services be better linked, and if so, how?

Many autistic young people and their families describe the transition to adulthood as a cliff edge; with autism still too often viewed as a childhood condition, what little support there is frequently dries up on adulthood or on leaving education. At present, there is no way back into formal autism-specific support after diagnosis, meaning those diagnosed as a child often have to fend for themselves to find support as an adult. A lifelong stepped-care system could change this; Autistica have committed to partner on proposals trialling the feasibility and cost-effectiveness of models for stepped care and digital case management.[xv]

Support for employers

7) How effective are government programmes which support or encourage employers to employ disabled people, particularly young disabled people? Does this differ by condition or disability? How could they be improved?

As above, awareness of these schemes is often low, and autistic young people are often left unsure if they “count” as disabled for the purpose of participating in these schemes. Furthermore, while there has been a recent surge in interest in neuro-inclusion, the fact remains that many employers are not thinking about autism and neurodiversity when they think about disability. This contributes to the very mixed experiences autistic people report with wider disability schemes in practice, which in turn dents their future confidence in such schemes in future.

What steps could be taken to improve awareness and uptake of relevant government support schemes?

As a starting point, clarifying what is meant by “disability” in each scheme and as under the Equality Act more generally could increase uptake from neurodivergent people who may otherwise not realise they can use such schemes. Not all neurodivergent people identify as disabled, and even those that do may not realise they qualify for such schemes, due to persistent misconceptions that there are a set list of conditions that “count” as disabled or that there is a register for disability.

b) What actions could employers be taking without Government support? What barriers prevent them doing so?

Relatively small adjustments such as removing unnecessary criteria from job advertisements, offering interview questions in advance and adjusting the workplace environment can make a huge difference to an autistic person’s experience and productivity in the workplace. Many employers want to do the right thing, but are unsure of how. Autistica are currently developing a Neurodiversity Employers Index to provide an evidence-based framework for neuro-inclusion.[xvi]

Many autistic people are undiagnosed,v and many of those who are diagnosed choose not to disclose this.vi Of those who do disclose, the most common time to do so is after starting a job, in part due to fear of discrimination during the recruitment process.vi This means that adjustments should be proactively offered to all, with or without a diagnosis, rather than waiting for autistic people to identify themselves.

Enforcement of the rights of disabled people in the workplace

8) How effectively are the rights of disabled people upheld and enforced in the workplace? What barriers do young disabled people face in accessing the support (including legal support) that they need and are entitled to? How could enforcement mechanisms be improved?

Wider lack of access to careers advice, and increased social isolation, can leave some autistic people unaware of their legal rights in the workplace. Even when an autistic person is aware of their legal rights, they may be less likely to advocate for themselves when these are breached; either due to inherent communication difficulties, or due to fear of being forced back into looking for work in a job market that is often hostile to autistic people.

a) Is the present legal framework sufficient, in theory and in practice, in dealing with disability discrimination faced by young disabled people transitioning from education to work?

In practice, laws around disability discrimination at work are often difficult to enforce, as discrimination is often based on unconscious bias and employers may find other reasons to justify their actions. Furthermore, not all neurodivergent people identify as disabled, they are often left unclear as to whether they “count” as disabled for Equality Act purposes.

20 September 2023