Supporting parents and carers of neurodivergent individuals
By Dr. Natasha Hirst on 11 December 2024
Parents and carers of neurodivergent children and adults are faced with the challenge of providing care for their loved one whilst simultaneously battling with medical professionals, education providers and social services to secure access to support. Providing a supportive environment for parents and carers of neurodivergent people is vital to enable them to stay in work.
Genius Within are a Community Interest Company specialising in supporting neurodivergent adults and the organisations that work with, and employ them. Professor Nancy Doyle, Chief Science Officer and Founder of Genius Within, explains why it is so important for employers to pay attention to the needs of their staff who are caring for neurodivergent children. “Parents are increasingly dropping out of the workforce in order to care for neurodivergent children who are unable to attend school, with no support services or alternative education plans in place. This is costing businesses productivity and talent loss, and contributing to the burden of economic inactivity for the taxpayer. The economics alone make this issue a crisis, but when we add this to the psychological cost of exclusion, desperation and bullying from educators that many parents receive, it is also a human crisis.”
Additionally, Doyle explains that, “research has shown that parents of disabled children have cortisol levels (a stress hormone) similar to combat veterans. The stress comes from the lack of support, prejudice and discrimination they face in society. Employers can help with flexible hours and hybrid working policies, providing Employee Resource Groups for parents to receive peer support and just a general empathy for the challenges that parents face.”
Juggling careers with caring
Law firm RPC and Law Care launched their Mind the Caring Gap report in June 2024, exploring the impact of caring responsibilities in the legal sector. 77% of respondents said that their mental health was affected by their caring role and 57% felt their career was impacted due to caring responsibilities.
Rachel Pears, Head of Responsible Business at RPC, shared her lived experiences as a mother to an autistic daughter, explaining how the challenges of managing behaviours and multiple appointments and fighting for support for her child left her fearing that she may not be able to retain her career.
Pears said, “I have certainly faced challenges in juggling the competing demands of being dedicated to my hard-earned career and what caring for others can entail (not to mention carving out time for myself occasionally). It has taken its toll on my mental and physical health. Over the years, I have had to work part-time, flexibly, remotely and take time off in order to evolve with the changing demands of caring.”
The support from her employer was invaluable in reaching a sense of balance that enabled Pears to stay in work and manage her commitments as a parent carer. She added, “I am also aware of how fortunate I have been that at work I have experienced such steadfast support from RPC and my managers. Although many would probably assume that my caring responsibilities would have negatively impacted my commitment to my job, it has had the opposite effect and has only strengthened my work ethic and loyalty to the firm. Work has been my respite and has given me a sense of identity and purpose outside of my role as a mother or daughter.”
Could this be me?
It is not uncommon for parents to recognise neurodivergent traits in themselves as they go through the processes of seeking a diagnosis for their children. ‘Cadno Coch’ from Autistic UK explains that, “like many adults diagnosed Autistic, it was identifying, recognising and feeling the struggles my child was having, alongside having reached crisis point myself, that led to me seeking my own diagnosis.” He used his lived experience to set up staff neurodiversity networks within the North Wales Police and later for local health boards.
The lengthy battles to secure appropriate access to education and other services continue into adulthood, so support for parents and carers need to be responsive to this. ‘Cadno Coch’ said, “Sometimes you need the same kind of flexibility as a parent would have of an under 18. If my 23 year old is having real difficulties at home, I need to leave work now. Some understanding of employees needing to have flexibility around that and putting procedures in place to facilitate that is important.”
Whether they choose to seek an assessment for themselves or not, this realisation can lead to a re-examination of their own identity. Yasodha Rajadurai works as a parenting and neurodiversity coach, supporting neurodivergent adults and neurodiverse families. She helps businesses create environments where neurodivergent individuals can thrive using a strength-based, person-centered approach.
Rajadurai points to the challenges of self-care when managing the demands of work and caring on top of a new diagnosis. She said, “being a parent, that’s one role. If you decide to go and get diagnosed, then there’s also the need to reflect on how that identity changes for you and how you then, in a way grieve for that old person and then work out how you’re going to transition into that new identity. Some other things like trauma might come up, people might need different types of support. Parents often don’t give enough time and space to work on themselves, which is quite key because happy parent equals happy child, happy family. It’s so important to consider your own care and well-being as well as trying to put your child first.”
Even with a diagnosis, many neurodivergent adults are left without support. Alongside setting up and sponsoring employee networks and support groups, Rajadurai notes the provision of parent coaching to help employees manage the challenges and have space to work on themselves, stress management and self-care.
Flexibility is key
Although the reasonable adjustment provisions of the Equality Act 2010 do not apply to carers of disabled people, there is some protection from discrimination by association and harassment. Other legislation such as the right to request flexible working is often key to providing support.
The City and Guilds Neurodiversity Index Report launched in partnership with Do-IT Solutions aims to champion and support neurodiversity in the workplace. The 2024 survey report showed that neurodivergent respondents were more likely to have neurodivergent children. 28% of organisations reported not having any accommodations for parents/care givers of neurodivergent children. This can compound the challenges at work for neurodivergent parents who risk burning out.
Professor Amanda Kirby, CEO of Do-IT Solutions said, “Many people who are neurodivergent often also have neurodivergent children too. Sometimes navigating the challenges of educational systems while at the same time balancing jobs can be very stressful. It can result in talented people having no other choice but leaving their jobs. Flexibility and understanding by employers can result in employees productivity increasing markedly and also maintaining their wellbeing.”
Top tips
- Encourage flexibility, including hybrid and remote working. Allow carers to juggle their commitments and trust them to fulfil their role in a way that works for them.
- Training for managers to support open conversations and person-centred solutions to the challenges carers and neurodivergent staff experience.
- Set up staff carers’ support groups and provide signposting to resources and other networks. Encourage peer support and connecting with others in your organisation who understand the challenges of the job as well as being a carer.
- Practical carers’ leave policies and a review of all other policies to be inclusive for carers, including recruitment, senior representation and career development opportunities.
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