Carer stress and how coaching can help
What is stress?
One way to understand stress is as ‘overload’. When things are too much, our capacity to cope becomes diminished. It’s also important to recognise that what might be a stressor for one person may not register as stressful for another. How we evaluate stress makes a difference to what we experience as stressful. For example, you might find a noisy crowded environment incredibly stressful and come home with a headache, another person might find it quite exciting.
If stress is about perception, it’s also about how we react to that perception. In a stressful situation the body releases adrenaline as an immediate stress reaction, and cortisol is released after a prolonged period of stress (Grief and Palmer, 2022). Prolonged stress has a profound impact on our psychological and physical wellbeing.
Mackey and Perrewé (2014) developed the AAA model to describe what happens during stress reactions (Appraisal, Attribution, Adaptation):
In this model the primary appraisal stage determines how individuals will react to stress, and the emotions that come with this appraisal impact on how well-placed a person feels to cope or emotionally self-regulate.
What Is carer stress?
Many stress models are based on work conditions and job demands. However, carers experience stress differently. For instance, Grief and Palmer talk about work stress being managed by detaching oneself from that stress (a bit like walking out of the office at the end of the day) – this is not possible for carers. Hastings’ study (2003) found that stress affected parents differently: mothers were more likely than fathers to be impacted by stress due to their child’s behaviour.
Mothers of autistic children are more likely to experience stress if a child is emotionally distressed or struggles with emotional regulation (Brown, 2021; Higgins, Mannion, Chen, Leader, 2023) (this is often framed as children’s behavioural problems within studies). Parental stress also impacts on the child too (Brown, 2021). This means that stress can become embedded in the family a feedback loop.
How can coaching help with stress?
As a helping space designed to focus on you, coaching can support you to manage stress in a number of ways:
Education and Health Care Plans: some stats and links
Families I have spoken with recently have described challenges with EHCPs. If you are in the midst of pursuing an Education and Health Care assessment, waiting for an EHCP (49% of cases took over 20 weeks in 2023), or appealing an EHCP decision, you are not alone. Between 2017 and 2023:
for 6% assessed for EHCPs, there was a decision not to issue
The number of appeals have gone up year on year, with 28% of appeals against refusal of Local Authorities to conduct an Education and Health Care assessment
The Children’s Commissioner report (Jan 2024) notes that while only 32% of pupils with EHCPs were autistic, 45% of appeals related to autistic children, suggesting that these families are finding it particularly challenging to access support.
If you or your family are waiting for or thinking of appealing a decision:
- Government advice is available here: https://www.gov.uk/appeal-ehc-plan-decision
- IPSEA (https://www.ipsea.org.uk/appeals-against-a-refusal-to-issue-an-ehc-plan) offers advice for appeals (with template letters).
- Local SENDIASS websites also have useful information
- Special Educational Needs and Disability Tribunal You Tube videos on the appeals process: https://councilfordisabledchildren.org.uk/resources/all-resources/filter/inclusion-send/guidelines-parent-carers-looking-support-tribunals-or
- Autism Central feature EHCP workshops: https://www.autismcentral.org.uk/events
- If you are thinking of getting help with the appeal, the Council for Disabled Children Guidelines has guidelines for seeking support with tribunals: https://councilfordisabledchildren.org.uk/resources/all-resources/filter/inclusion-send/guidelines-parent-carers-looking-support-tribunals-or or see https://www.specialneedsjungle.com/getting-help-with-ehcps-be-careful-out-there/
If you would like emotional support, please reach out to us at info@careforyoucoaching.co.uk. We support you to support your families.
For more sources of statistics see:
Parental blame and how to start unblaming
According to Martyn Oliver, Head of Ofsted, ‘Work from Home parents ‘make children think school is optional’’ (The Times, 16/2/24 https://www.thetimes.com/uk/education/article/ofsted-head-wfh-parents-make-children-think-school-is-optional-qtrmqpw9z?msockid=34df726570726a120a9366d6716f6baa). Whilst this story mentions Oliver’s acknowledgement of the wider factors that underpin emotion-based school refusal, other news outlets leapt on the headline. In shifting blame onto parents, these stories conveniently ignore the reality of:
- increasing school exclusions: exclusions are up by sixty per cent in England since 2011 (Ambitious about Autism, 2018); nearly 90% of those excluded from schools over the past 5 years had special educational needs (https://www.bbc.co.uk/sounds/play/m0025bcf)
- chronic under-funding of SEND services, with English councils’ high-needs budgets in deficit by £3.3bn (Shttps://www.theguardian.com/uk-news/2024/dec/22/spiralling-demand-and-shrinking-budgets-why-englands-send-system-is-buckling).
- £100m spent on blocking parents efforts to get SEND support (https://www.theguardian.com/uk-news/2024/dec/22/spiralling-demand-and-shrinking-budgets-why-englands-send-system-is-buckling)
Many parents are forced to leave the workforce precisely to support their neurodiverse children. A survey of 900 parents by Ambitious about Autism (2019) showed that 30% of those surveyed gave up work due to school exclusions and 20% of respondents had reduced their working hours to part time. Thus;
- Flexible working is essential for parents to be able to support their children, attend appointments, school meetings, not a luxury that enables various parent and/or child skiving as Oliver suggests
- These same parents who work from home are exhausted from having to constantly fight for EHCPs (which are denied – see above), and support.
Of course, to blame parents enables deflection of scrutiny of OFSTED and underfunding of schools. Sadly, parent blame is as old as the first identification of autism, with Leo Kanner on the one hand distinguishing autism as a distinct affective condition and on the other hand blaming children’s affective differences on ‘refrigerator mothers’ who were unable to give adequate attention and affection to their offspring to support their development. Furthermore, it’s mothers who bear the brunt of the blame and social censure for their children. Mothers are also more likely to be blamed for school exclusion (Mallace, 2024). Ward (2014) speculates that the combination of mothers being out in public with their children more frequently than fathers, and because of society’s expectations around the mothering role, they encounter more overt criticism and stigma. Children are also blamed (see Potts, 2020), because they do not conform to ableist assumptions about how they should be at school, which again refracts back on parents.
So blame is out there and socially-legitimised as a way of not confronting other inconvenient truths. What can we (as the recipients of blame) do about this? It’s easy to feel angry, helpless, and defeated when people fail/refuse to see how hard and how much parents work to support and fight for the rights of their neurodiverse children/children with additional needs.
We can challenge the blame. I speak with many parents who contradict judgments and advice offered by (possibly well-meaning but ultimately stigmatising) people: they do this with varying degrees of success. Challenging on an individual basis can come with some risks, but broader support groups and forums can provide solace and support. National Campaigns such as the National Autistic Society’s #A constant fight challenge the narrative that pushing everything back onto parents is okay. Work by Dr Naomi Fisher; Eliza Fricker; Heidi Mavir, and Danielle Jata-Hall among many give support and advice for parenting differently to support children’s individual needs (rather than molding them to fit with social norms).
Alongside these campaigns, the challenge can also come from within us (and this is where coaching can help!). A study by Moses (2010) found that some parents were able to facilitate a process of “unblaming”. Through ‘unblaming’ perceptions of self-blame were reworked over time, and parents redefined how they saw themselves, and were able to be positive about their parenting. This process was underpinned by wider support (often family support). A key tool for this process it to have a perspective about ‘contribution’ to an issue. Stone and Heen say that one way to move from blame to a more neutral stance on a conflict is to look at what each factor ‘contributes’ to it. This is a shift from judging to understanding. Thus, rather than parents blaming themselves for a child’s non-attendance at school they can consider:
- What did I contribute to this situation? (“I put the needs of my child first.”)
- Who/What else has contributed to the situation – e.g. the school?, government underfunding?, the local authority?, etc.
- When I look at the different contributors and what they have contributed, what do I think now?
And ultimately:
- Does blaming myself help me in this situation?
- What can I tell myself instead?
This subtle shift in language gives a different perspective: it doesn’t bypass the larger stigmatising social narratives, but it doesn’t accept them either. Coaching can be a helpful space to support you to build this repertoire of self-affirmation and move away from self-blame.
If you want somewhere to talk about a child’s school exclusion, to disentangle this from self-blame, and to start doing some ‘unblaming’, I’m here to hold this for you. Care for You Coaching offers a safe non-judgmental space where you will be listened to. We will support you to support your loved ones. If any of this resonates with you, reach out to me on info@careforyoucoaching.co.uk
Fierce self-compassion: how coaching can help us sustain our support for our loved ones
The National Autistic Society recently reported that autistic people and their carers face #a constant fight: for assessment for diagnosis (with an estimated 400,000 waiting over a year for their first contact with a health service, (Children’s Commissioner Report, 2024: 36)), for school support, for EHCPs. Parents and carers I speak to tell me how exhausted they are. Exhausted from having to take time off work to take children to appointments; having meetings with schools; chasing people for support; form-filling; from constant advocacy for their young people, and weathering judgments from people who cannot understand or empathise with their situations. The fight is compounded by a system that deflects the problem back to the parent/child/family rather than looking at the system itself (see Running and Jata-Hall’s report, 2023 – 87.8% of parent / carers respondents said they felt blamed for some aspect of their autistic child’s presentation). As Heidi Mavir so eloquently describes in Your Child is not Broken (2023), this constant ‘fight work’ can be really triggering for neurodiverse parents who find that their neurodiversity is positioned as a problem.
For wearied parents and carers every day is continually filled with fighting battles on a number of fronts. So how can the fight be sustained?
Whilst it’s not a complete answer, I really like Kristen Neff’s concept of fierce self-compassion as a foundation to build principles to support the #constant fight. Neff, herself the mum of an autistic son, developed this concept after reflecting on an exchange with a judgmental parent. Neff’s response to the parent ‘shushing’ her autistic son was a mixture of fierce defence of her child and subsequent self-compassion. She reflected afterwards that both components are totally necessary and valid: to legitimately exhibit a fierce protective anger to mitigate suffering/social judgment on behalf of those who are misunderstood (‘the fight’) and self-compassion, so we are a good friend to ourselves when we are in the midst of a struggle (Fierce Self-Compassion, 2021). That’s the first reason that this concept is useful – it gives permission to legitimately be angry at injustice and actively and outwardly express that anger (there’s more to say here about the how – but that’s another blog post!), and alongside the permission to not beat ourselves up or carry the weight of social judgment, but recognise that we need to be a best friend to ourselves (and not just in times of adversity).
For Neff there are three key components of self-compassion:
Kindness: within self-compassion is a drive to alleviate suffering. Sometimes this can be easier to do for others than for ourselves. We pour so much into supporting others we often have no more kindness to extend to ourselves when things haven’t gone as we had hoped. Kindness gives us the capacity to extend understanding and acceptance to ourselves; to say ‘this has been rough’ and ask ‘how can I best support myself?’.
Common humanity: this is where we are aware that others may be suffering too. We can often become isolated and feel like the anger and the fight is ours alone. It’s also a reminder that we are as Neff says ‘worthy of humane treatment’ (2021: 23). Here self-compassion is being aware that we ourselves, and others, are worthy of compassion.
Mindfulness: what Neff means here is really the capacity to sit with discomfort – to acknowledge that what we are doing is difficult or hard, and be aware that we may need support during difficult times. This mindfulness is ‘being aware of’
Self-compassion can be a challenge when you are exhausted from advocating and supporting others. It might not feel that you have enough energy left to support yourself.
This is where coaching can help. As you’ll see on our Care for You website, coaching is a talking space, where you bring whatever you need and you have an empathetic supportive listener to share your story with. Coaching is more than listening: coachees have said it can provide ‘containment’, a safe place to put stories and troubles so they don’t leak out into other areas of life; and it can help (if you want it to), with thinking through what will come next for you. In essence, coaching is great space for scaffolding parents and carers to build self-compassion:
Kindness: Coaching is a space that is dedicated to you. It can be a first step in helping you to recognise and articulate your needs, followed by supporting you to plan to meet your needs. If you find being your own best friend difficult, you can be confident that your coach
will hold you in high regard to help you to begin to do this work.
Mindfulness: we can’t take away the frustrations and depletions of these battles, but if you need it, coaching can give you a place to unpack how you are feeling and think through how you might face these battles, what steps you’ll take first, and what steps will follow those.
So coaching might be one way that you can be supported to keep going, or it can help you to build strategies, coping mechanisms, and support to help you get to where you need to go. If you want to talk, please get in touch with us info@careforyoucoaching.co.uk. We’re here for you as parents and carers, to support you to support your loved ones, and to support yourselves.