'Of course you crash' Parenting a young child with neurodevelopmental difficulties.
Parents of undiagnosed preschoolers feel as overwhelmed as those with diagnoses—offer support today, not after the label.
01Research in Context
What this study did
Fäldt et al. (2024) talked to 20 UK parents of preschoolers who act like they have autism or other delays but have no diagnosis yet.
They used long interviews and small group chats to learn how these parents feel and what help they get.
Kids were 2-5 years old. Most families were still on waiting lists.
What they found
Parents said they feel like they are "crashing" from stress.
They chase sleep, meltdowns, and paperwork alone.
Odd fact: their stress level matched parents of kids who already have a diagnosis, but services gave them almost nothing.
How this fits with other research
Bromley et al. (2004) and Leung et al. (2011) showed mothers of diagnosed kids also report high distress and unmet needs. Anna’s work says the pain starts before the label, so don’t wait.
Sutton et al. (2022) in Ghana and Garwood et al. (2021) in Mongolia heard the same five help areas: emotional, money, information, friends, and formal services. The UK families echo this, proving the gap is global.
Yamaoka et al. (2022) found special-ed mothers have worse BMI and mental health than regular-school mums. That numbers paper backs Anna’s word picture of parents "crashing."
Smith et al. (2023) add that Somali mums face racism and low teacher expectations on top of basic stress. Anna shows the base stress; Jodie shows extra layers minority families face.
Why it matters
You can start parent coaching, sleep plans, and respite now—no diagnosis needed. Screen every family on your wait-list for stress and offer a group or a listening session next week. Early support may prevent the full burnout seen in diagnosed samples.
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02At a glance
03Original abstract
BACKGROUND: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of neurodevelopmental disorders without yet having a formal diagnosis. AIM: This study aims to deepen our understanding of the need for support among families with young children with neurodevelopmental difficulties. Specifically, it explores parents' perspectives concerning their children, life circumstances, and emotional experiences in parenting. METHODS AND PROCEDURES: Qualitative semi-structured interviews were conducted with ten parents of children aged 2.5-5 years, referred to a child psychologist due to reported neurodevelopmental difficulties. The interviews were transcribed and analysed using qualitative content analysis. OUTCOMES AND RESULTS: Two themes, each containing four and three categories, respectively, emerged in the analysis: Parenting our child with neurodevelopmental difficulties is tough in so many ways and Prevent, manage and make up like a Pro. CONCLUSION AND IMPLICATIONS: The parents express very similar challenges, difficulties and problems as parents of children with diagnosed neurodevelopmental disorders. The main difference lies in the lack of accessible support or help for these parents. WHAT THIS PAPER ADDS: This study provides insights into how parents of children with suspected neurodevelopmental difficulties perceive their child and their overall life circumstances. The narratives show the challenges these parents face due to their children's multifaceted difficulties, leading to a need for multi-disciplinary support from professionals. The narratives also illustrate the strong emotions that arise in parenting, which in itself indicates a need for support. The study also provides further support for the importance of parents connecting with others facing similar life circumstances. The families often feel isolated despite the need for increased informal support in terms of more adults being involved with the children.
Research in developmental disabilities, 2024 · doi:10.1016/j.ridd.2024.104825