Neurodiversity - are you one of the sandwich generation?

Neurodiversity - caught in the middle - are you one of the sandwich generation?

In the last week or so I have been thinking a lot about being a parent and at the same time trying to juggle home and work life.

“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

Jacinda Arden's decision to step down as prime minister in New Zealand has brought this into focus.Former New Zealand Prime Minister Helen Clark understands more than most the pressure of having a country's top job. She reported that it was important to have a strong support system to deal with the demands of the job.

"Jacinda has a very supportive partner and her parents have also been tremendously helpful in supporting her. "

I have talked before about 'quiet quitting' and burnout but this was quite noisy quitting.

It seems a shame we have to wait till we can't cope any longer and 'snap' to have to leave a job that with some support you could continue and thrive. ( This may be different for political jobs where you get voted out!). Ardern said she “no longer had enough in the tank” to continue. We often say to each other we need to care for ourselves but don't you think society **and that means us*** need to care for each other?

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

Let's think about the sandwich generation

We are increasingly recognising the sandwich or ‘stretched’ generation. This may be people providing financial support, time and care for both parents and children... and even caring for grandchildren.

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 our jobs!

There are only 24 hours in a day.

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.

An article in the Guardian this weekend 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.

Are you the 'filling' in the sandwich in your Neurodivergent family?

Being a parent, working, and supporting elderly parents can mean there is very little time if any left for yourself.

If you are also neurodivergent yourself, parenting ND kids, and also trying support to your parents?This can be another level of demands.It can feel like you are juggling increasing numbers of balls trying to balance work and home life and constantly worried they will be dropped at any one time!

Working from home may be the only way that allows you to pick up a prescription for a parent, or fetch the kids from school and sit with them while they do homework. It may allow 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 ( I can still remember this with my kids) and by being there you can avoid a meltdown and a long night of disruption.

Having elderly parents can also mean a call in the middle of the night because a parent has fallen. I remember one night when both my parents went to hospital in the same night in two separate ambulances !!!

I also remember very long days that meant picking up my work when the children had gone to bed, visits had been made to check on parents.I also learned to start the day before everyone else in the house.

How many elderly parents of ND families are also undiagnosed NDer's too... and trying to cope with the changes in their wellbeing in potentially a less accessible world. (Dyslexia is not just for Xmas!)

Multigenerational support systems under pressure- a 'perfect storm'

"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."

What are the factors at play?

1. Increased costs and lack of availability of child care - means you are unable to work full-time without family support.. who is going to do that?
2. Increased costs and availability of elderly care - so who is going to provide the support?
3. Neurodivergent children at increased risk of being excluded from school - I know many parents waiting with trepidation for a call from school every day.
4. Cost of parenting a ND child is greater.
5. Cost of living increases( I don't need a reference for you to know that one!).
6. Having an ND child means more contacts with school on a day- to- day basis.
7. 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. Parents waiting for support in schools, or waiting for a diagnosis for their child may have increased health issues themselves but also may see greater mental and physical challenges in their ND children too. 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.?
8. The time costs for navigating diagnostic and intervention pathways requires time from a parent- attending appointments, completing paperwork.

Who is squeezed in the middle of this sandwich the most...

Women with ND children in their 40s and 50s will be the ones most squeezed and impact on work choices, and the ability to progress in their careers.They are also the ones who really need flexible approaches to work settings and times..

Mothers are having their children older and older...

There is an intertwined impact on multiple generations.

Double decker or triple decker sandwiches?

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).

I was extremely lucky when I was a young parent and a doctor with 3 kids.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 she 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 but I am not next door to them so some of the small everyday ways I can assist is much harder to do.

What does this mean for mothers and daughters?

Have a read of this article.."Caught in the middle in mid-life: provision of care across multiple generations"....

• Very little personal time. No time for exercise.Less time for socialising with friends.
• Difficult choices- if you have greater demands for supporting your child who may be having real challenges in schools it is really hard to know how to divide your time.
• Impact on mental wellbeing - Sleep disturbance.Greater anxiety/stress/fatigue with an impact on physical wellbeing over a period of years can impact on longer wellbeing.
• Not being able to progress in work despite having the skills to do so. This has an impact on your overall life earning capacity.
• Choosing a lower paid job to enable more flexible working resulting in increased financial pressure despite increasing costs.
• Having to give up a job because of caring duties.

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. .

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

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

• Burnout
• Loss of talent
• 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

See that women have the same opportunities for progressing in work as men- but this does mean a redesign of the workplace that can benefit us all.

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

We need to wake up and see the real impact and potential loss if we don't recognise the squeezed generation and the talents that are being lost. There seems to be a move by some organisations about 'back to work' and everyone being visible. I think we need to fight against a ' one size fits all approach'.

If we enforce this approach this has a direct bias for a large group of people in society. With talent shortages and retention issues we cannot ignore the potential gains for society.In the?Gartner 2021 Digital Worker Experience Survey, 43% of respondents said that flexible working hours helped them achieve more productivity, and 30% of those surveyed said that less or no time commuting allowed them to be more productive.?

Check out the gains of flexible working for all.( Also read the article in the Washington Post about lay offs and who these impact on most as well!)

Remember it impacts the sandwich generation more than any and especially neurodivergent families.

Please discuss this in your organisation today!

The blog author

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

I have very personal multi-generational experiences of being neurodivergent with my wonderful family.

Theo Smith and I wrote the UK award-winning book?Neurodiversity at Work?Drive Innovation, Performance, and Productivity with a Neurodiverse Workforce. I have my 10th book coming out called?Neurodiversity and Education?coming out in March 2023. I was also voted one of the top 20 Thinkers by?HR magazine for 2022!