Neurodiversity 101: How do we care for the carers?

I am in the midst of writing a book with Theo Smith about parenting and neurodiversity due to come out in early 2025 so I am thinking a lot about being a parent of a ND child and working... and how it is difficult trying to juggle home and work life. I always think wherever you are, you are guilty of something!

" I should be working now" or " I should be with the kids now"...

We chip off parts of ourselves to try and be our best wherever we are ... sometimes feeling that we are not doing anything right.

“I learned, however, that the loss of balance is ultimately more painful than the giving up required to maintain balance. It is a lesson I have continually had to relearn. As must everyone, for as we negotiate the curves and corners of our lives, we must continually give up parts of ourselves. The only alternative to this giving up is not to travel at all on the journey of life.”

―?M. Scott Peck,?The Road Less Traveled: A New Psychology of Love, Traditional Values and Spiritual Growth

While I was married and had a great husband I was the person involved in planning and doing most of the day to day parenting. I was a young parent and had a young mother and was extremely lucky that my mother, lived in the same city and was a key person helping me and truly allowed me to be able to work.She didn't work outside the home and was a fantastic support system for me in many, many small and bigger ways. As a grandparent, today, I am still working full time. I try to support my children as much as possible ( I made macaroni cheese yesterday while taking a meeting online!) but I am not able to take on the day- to- day care.

After school club is something that has become a practical necessity but comes at a cost. Five days a week in 2023 costs on average ￡67.42. If you have more than one child ... then do the maths!

Where and when you work can make a difference

Being a parent of a ND child is wonderful but sometimes can be challenging.If you have a job that allows you to work from home this provides some potential for you to respond to 'emergency' situations that by definition are unplanned.

It can mean you are there to listen to your kids when they have had a bad day at school (which usually ends at 3.30 and not 5.30). By being there you can avoid a meltdown and a potential long night of disruption and poor sleep for all. You can be there to sit with your child while they do homework (or none gets done). The secondary impact of coming home at 6 o'clock for your ND child is not having some quiet down time after school which may also be important to ensure a settled evening and night.

Caring ++ impacts on careers

There is some evidence that the prevalence of providing care peaks around ages 45–54 years for women and 45–64 years for men (Robards?et al.,?Reference Robards, Vlachantoni, Evandrou and Falkingham,2015; Department for Work and Pensions,?2017).This importantly also coincides with the peak time for many people trying to progress as much as possible in jobs!

Vlachantoni et al (2020) cite that:

"One-third of mid-life individuals are ‘sandwiched’ between multiple generations, by having at least one parent/parent-in-law and one grandchild alive. Among them, half are simultaneously supporting both generations. Caring for grandchildren increases the probability of also supporting one's parents/parents-in-law, and?vice versa."

One of the central issues regarding caring for multiple generations is how carers divide their resources (time, work, finance,?child care, elderly etc.) between the generations. One article in the Guardian described the the latest UK census showing that about 1.5 million carers spend more than 50 hours each week caring for elderly or disabled relatives

Caring responsibilities for older parents affect the employment of mid-life individuals (Gomez-Leon?et al., Reference Gomez-Leon, Evandrou, Falkingham and Vlachantoni, 2019) and may also have an indirect effect on their adult children's employment through limiting the provision of grandchild care (Dykstra and Fokkema, Reference Dykstra and Fokkema 2011).

Women are 7x more likely to be out of work because of caring duties. This hits women hardest in their 30s with one in 10 women in this age group dropping out of the jobs market because of pressures of looking after their family.

How many of these are parents of ND children?

What are the real costs of this?

1. Neurodivergent children at increased risk of being excluded from school - I know many parents waiting with trepidation for a call from school every day/ and or need more support from parents practically and emotionally.
2. Cost of parenting a ND child is greater.
3. Cost of living has increased
4. Having an ND child means more contacts with school on a day- to- day basis.
5. More attendances at Primary Care on an already over burdened GP services. Hobbs reported in 2016 there were increased ?frequent visits of children which may indicate underlying unmet medical or psychosocial needs. This increased by 9.3% between 2007 and 2014 among children below 5 years of age.
6. Parents waiting for support in schools, or waiting for a diagnosis for their child may have increased health issues themselves. There is evidence that frequent attendance is related to presence of psychosocial and mental health problems, younger age, school absence, presence of a diagnosed chronic condition, and high level of anxiety in their parents.
7. The time costs for navigating diagnostic and intervention pathways requires time from a parent- attending appointments, completing paperwork.

What can we all do?

Recognise this IS a BIG reality.

Carers UK estimates that the number of unpaid carers has risen to 10.6 million (Carers UK, Carers Week 2022 research report). This means that 1 in 5 adults in the UK are currently providing care. Every year, 4.3 million people became unpaid carers – 12,000 people a day (Petrillo and Bennett, 2022).That unpaid care saves millions of pounds so providing support to the carers makes sense for us all.?The unpaid work performed by carers for family members is too often ignored in work place and social policy discussions. .

*In the UK there is a new Carers Leave Regulation (2024) which is worth a read.(I am concerned that this may mean there will be ironically increased inequality and discrimination against female workers..... what do you think?)

Know that we pay for it - in many ways if we don't recognise this.

Women, in particular, acting as the sandwich filling have a greater risk of :

• Burnout
• Loss of talent and earnings
• Loss of a chunk of your workforce
• Greater burden on an overstretched workforce e.g. G.Ps.
• Parents/Carers are your 'cheapest' support system.. so we need to ALL protect them

Flexibility, where possible, assists everyone at different stages of their lives.

“Leadership is not being in charge, it is about taking care of people in your charge.” says Simon Sinek

Please discuss this in your organisation today!

What can you do as a parent?

Seek and use all your support networks ??: Connect with communities and support groups for parents of neurodivergent children. Sharing experiences and advice can be incredibly uplifting and informative. Trade support with other parents if you can in your school - it is a survival tactic!

I have experienced in the past being the filling in the sandwich and remember to cherish the parents and children you have while you have them. But I also remember it was exhausting too. Your friends can sometimes help you to the humour in the moments too!

Prioritise your self-care ??: Being a parent is a marathon and not a sprint.Taking care of yourself is not selfish—it's essential. Regular breaks, exercise, and hobbies can recharge your batteries and improve your ability to care for others. Even a 10 minute walk in the fresh air or 5 minutes having a cup of tea allows you to see you have some time which is yours too.

Blog Author

I am Amanda Kirby, CEO of Do-IT Solutions a tech-for-good company that delivers consultancy and guidance, consultancy, training and web-based screening tools that have helped 10s of 1000s of people.

Contact us and we can discuss how we can help.

We strive to deliver person-centered solutions relating to neurodiversity and wellbeing.I am a mixed bag of experiences and skills and have 25+ years of working in the field of neurodiversity.

I am a medical doctor, Professor, and have a Ph.D. in the field of neurodiversity; most important of all I am a parent and grandparent to neurodivergent wonderful kids and am neurodivergent myself.

I have written 10 books so far.Theo Smith and I wrote the UK award-winning book?Neurodiversity at Work Drive Innovation, Performance, and Productivity with a Neurodiverse Workforce. My 11th book came out in 2023 Neurodiversity and Education. Theo and I are writing a new book this year about parenting and neurodiversity!