Part 2: Parental Burnout – Neurodiverse families

Many neurodiverse families throw out the typical “parenting manual” and instead adapt their approach to the unique needs of their family.

In part one of the parental burnout series we reviewed research that indicated that parental burnout occurs when the level of stress outweighs the availability of resources to cope with it. This explanation really resonates and takes away a lot of the shame that comes with not being able to “cope” with everything that parenting and life throws at you. If we had a spare couple of hours a day for self-care, didn’t have to worry about finances or job instability, had a caring and available partner that took half the load, were surrounded by a supportive community and had access to respite options, things would pretty much be manageable, right?

Having the right level of resources to cope with demands is crucial for all parents, but scientists have found that there are certain risk factors that increase your chance of burnout. These include:

  • Perfectionist parenting standards – you want to be the perfect parent, striving to make the right and the best decision for your child in everything.
  • Low co-parent support – your partner doesn’t share the emotional, physical or mental load, and most of it falls to you.
  • Lack of social network – you feel isolated because of your circumstances or physical location and you lack practical or emotional support.
  • Children with high-support needs – your child’s needs impact daily life and your ability to meet financial, personal and family goals.
  • Work part-time or stay-at-home – a full time job is seen to provide respite and purpose for parents, but not working at all or working part-time increases your chance of burnout.
  • Poor regulation strategies – you are someone who has difficulty managing your emotions or you do it in negative ways.

In this article we are going to look a bit deeper into burnout experienced by parents in neurodiverse families. 

Parenting a neurodivergent child

A neurodivergent child needs more help to navigate the world than their peers because the systems and constructs were created by and for neurotypical brains. 

In addition to standard parenting duties, caregivers of neurodivergent children often also have to:

  • Advocate for support across different contexts 
  • Pursue assessments while dealing with almost impossible barriers
  • Sift through information about their child’s neurotype and self-educate 
  • Navigate funding schemes and support systems
  • Organise and take children to a range of allied medical health specialists
  • Practise strategies or do activities to support regulation and sensory needs
  • Scaffold executive functioning for their children
  • Learn, adapt and adjust day-to-day life to support their child’s fluctuating needs
  • In some cases, homeschool their children

A recent study conducted by Curtin University found that “80% of caregivers in their study experienced poor wellbeing, high levels of stress and mental health issues.”3 Negative stigma was reported as an issue in local communities, with more than 22% of caregivers in the study cohort feeling even more socially isolated because of their experiences. 

Overall, researchers identified a range of problems faced by caregivers of neurodivergent children, “including lack of support groups, available education and training, and financial aid and assistance”.3

When caregivers don’t have the right level of support themselves, it can make life more challenging, resulting in:

  • Financial stress
  • Hindrances in career success and progression
  • Sacrifice of personal goals/needs and impact to self-identity 

The more support needed by a child, the more likely the family will experience financial difficulties. A parent’s capacity to earn a living wage is impacted by their availability to work. Finances are further stretched due to the expenses associated with therapy, adaptive equipment and assistive technology. 

Additional risk factors for neurodivergent parents

There is very little research that looks at parents with neurological differences like Autism and ADHD, and their experience raising children in relation to burnout. There is even less research conducted by neurodivergent scientists and interpreted by the same. The truth is, unless you have lived it, there are nuances you will miss or data that you will misinterpret.

The following points are a combination of lived experience by the author, informal conversations with other neurodivergent parents, articles written by Autistic parents, themes from neurodivergent support groups and from the available studies in this area.

Undiagnosed neurodivergence

Parents of neurodivergent children are more likely to be neurodivergent themselves. We know that some brain differences are highly heritable, for example inheritability for ADHD was found to be 66%-86% and Autism to be 64%-91%. 

In cases where caregivers are unaware of their own neurotype, they can find themselves struggling with parenting and general overwhelm without knowing why. The advantage of knowing what type of brain you have is that you are more likely to identify your triggers, have developed positive coping strategies and structured your home environment to support regulation. A diagnosis also opens up the door to explore and try medications that help manage specific symptoms, increasing a parent’s ability to function more optimally.

Executive dysfunction

A significant proportion of neurodivergent people report some level of impairment in executive functioning. Executive functions include the skills that help us plan ahead, manage priorities and regulate our physical and emotional states, which are crucial in meeting personal, professional, relationship and parenting goals. Impairment to executive functions means that neurodivergent parents work much harder at making things work.

Sensory sensitivities

Sensory overwhelm is an additional challenge that some neurodivergent parents have to contend with. Sensory sensitivities and needs of family members can sometimes clash in households affecting both adults and children. Outside of the home, neurodivergent individuals are also exposed to a barrage of sensory stimuli that they can’t always control or manage effectively. The danger of sensory overwhelm is that it can trigger meltdowns. 

Masking

Neurodivergent individuals can find themselves in workplaces that are not inclusive or in groups who do not understand the need for accommodations. This forces individuals to mask their needs to fit in and to protect themselves from ableism. Masking to keep oneself safe has been shown to produce a level of chronic and intense stress that increases the risk of depression, anxiety and, in some extreme cases, suicidality.

Hyperfocus

ADHD and Autistic brains have interest-based nervous systems, which means that the things we are passionate about can supercharge our ability to focus – this is sometimes referred to as hyperfocus. This phenomenon describes a person’s ability to be so absorbed in a task, to the point of completely ignoring or ‘tuning out’ everything else. Shifting attention to internal physiological cues and external cues becomes a challenge when someone is in this mode of intense focus. Regular periods of hyperfocus tend to use up more energy and increase fatigue affecting one’s ability to take on subsequent tasks. 

Social stigma

Acceptance, understanding and inclusion are things that neurodivergent individuals have to constantly fight for. For many parents, the stigma of being neurodivergent and a caregiver gets in the way of reaching out for help from friends and family. Research on the parenting experience of Autistic people, shows that stigma also presents a major barrier to accessing services and resources. Neurodivergent parents worry that their neurology will be used against them, and that their capacity to be good caregivers is questioned.

Parenting ability is not predicated on neurotype

There is an undeniable connection and understanding that neurodivergent parents of neurodivergent children have with each other. Parenting is a complex task where one size does not fit all, and many neurodiverse families throw out the typical “parenting manual” and instead adapt their approach to the unique needs of their family.

The truth is, being neurodivergent comes with additional life challenges, there is no doubt, but with accommodations and support they are all manageable.

In part 3 of the series we will cover the signs of parental burnout, recovery and protective strategies.

References

  1. A systematic review of parental burnout and related factors among parents | BMC Public Health
  2. Parental Burnout in Neurodivergent Parents
  3. The Well-being and Support Needs of Australian Caregivers of Neurodiverse Children
  4. Parents’ Voice: Parents’ Emotional and Practical Coping with a Child with Special Needs
  5. Get it right, make it easy, see it all: Viewpoints of autistic individuals and parents of autistic individuals about the autism diagnostic process in Australia – ScienceDirect
  6. Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs – ScienceDirect
  7. Correlates of Impairment and Growth in Families of Young Autistic Children
  8. The Family Life Impairment Scale: Factor Structure and Clinical Utility with Young Children
  9. Implementation of Australia’s National Disability Insurance… : Infants & Young Children
  10. Exhausted Parents: Development and Preliminary Validation of the Parental Burnout Inventory – PMC
  11. Is Parental Burnout Distinct From Job Burnout and Depressive Symptoms? – Moïra Mikolajczak, James J. Gross, Florence Stinglhamber, Annika Lindahl Norberg, Isabelle Roskam, 2020
  12. Parental Burnout and Child Maltreatment During the COVID-19 Pandemic – PMC
  13. (PDF) Parental Burnout: What Is It, and Why Does It Matter?
  14. Parental Burnout Around the Globe: a 42-Country Study | Affective Science 
  15. A Theoretical and Clinical Framework for Parental Burnout: The Balance Between Risks and Resources (BR2)
  16. Heritability of autism spectrum disorders: a meta‐analysis of twin studies – PMC
  17. A twin study of genetic and environmental contributions to attention‐deficit/hyperactivity disorder over time – Taylor – 2023 – Journal of Child Psychology and Psychiatry – Wiley Online Library
  18. “Maybe No One Knows We Need Help”: Understanding the Experiences of Autistic Working Mothers in Australia | Autism in Adulthood
  19. Where are all the Autistic Parents? A Thematic Analysis of Autistic Parenting Discourse within the Narrative of Parenting and Autism in Online Media | Studies in Social Justice
  20. When Parent and Child Both Have ADHD
  21. Motherhood: Autistic Parenting and Supports That Make a Difference
  22. The truth about being autistic and a mother
  23. A comparative study of autistic and non-autistic women’s experience of motherhood | Molecular Autism
  24. Parents’ Voice: Parents’ Emotional and Practical Coping with a Child with Special Needs
  25. ‘‘In a State of Flow’’: A Qualitative Examination of Autistic Adults’ Phenomenological Experiences of Task Immersion 
  26. Autistic Adults’ Experiences of Camouflaging and Its Perceived Impact on Mental Health | Autism in Adulthood
  27. A comparative study of autistic and non-autistic women’s experience of motherhood | Molecular Autism
  28.  Autistic Parents’ Personal Experiences of Parenting and Support: Messages from an Online Focus Group | The British Journal of Social Work | Oxford Academic
  29. Autistic Motherhood: Honoring Our Personal Choices

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