Verified by 
Key points
- Parents of children on the spectrum draw on their creativity when planning support for their children.
- Parents of autistic children experience a contrast between disability legislation and day-to-day practices.
- Hearing out mothers of children with special needs adds value to the conversation about inclusivity.
When I reflect on my journey as a parent of two boys on the spectrum, I appreciate that learning about how they relate to the world has enriched my life. What also comes to mind is an image of a rollercoaster, a metaphor for the redefining of expectations that has been the heart of this journey, and for the myriad of contrasting experiences and encounters within communities, services, and education providers.
The characteristics of neurodiverse children are many and varied. Many relate to a preference for detail-focused perception, others relate to a passion for a special interest that is a point of reference in their world. Others might have unique interpersonal mannerisms and social understanding, or atypical sensory processing. Mothers of children who process information in unique ways—research suggests that mothers are, for the most part, primary advocates and negotiators for their children (Lilley, 2015)— can contribute the resource of creativity to the design of support interventions for their loved ones.
There are countless outside-the-box tweaks that my family puts in place daily, whether it be dressing my 4-year-old in his prep uniform instead of pajamas on school nights (as this reduces his experience of being overwhelmed during his morning transition to school, as well as helping him to distinguish school days from non-school days) or allowing the boys to have their dinner in the bathtub (where they are able to sit still for more than five minutes without iPads!).
Field and Hoffman (1999) suggested that parents of children on the spectrum draw on their creativity when planning supports for their children, to “develop new and effective strategies to overcome the barriers their children encounter” and are themselves models of advocacy, communication, and negotiation skills, perseverance, as well as positive functioning in multiple roles. Most parents of children with special needs also report experiencing personal growth alongside their parenting experience, including increased compassion for others and tolerance (Field and Hoffman, 1999).
The Disability Standards for Education 2005 legislation advocates for children with special needs and their families to be at the front and center when it comes to designing their support needs. This makes perfect sense. Parents invest much of their energy and resources trying to apprehend the special needs of their children; parents understand the future visions, goals, and interests of their children; parents are experts in setting up the environment around them to make learning and life work, and are particularly gifted in differentiating supports and instructions around children of various ages and needs; families know what they need to reduce stress; families know what strategies and supports are most effective for their circumstances; families can discern what their priorities are.
Unfortunately, at some point along their journey, many parents experience disillusionment over the stark contrast between the idealism of disability legislation and the day-to-day practices they encounter. The 2020 Australian Government review of the Disability Standards for Education 2005 confirmed what the research already told us, that learners with disability and their families often experience a power imbalance between themselves and education providers. Families feel that it is up to them to familiarize themselves with the intricate policies and laws governing the education system so they can advocate for reasonable adjustments for their loved ones.
There are consistent reports of challenges autistic young people experience when adjusting to school settings. Lilley (2015) suggested that there may be a particularly high rate of movement between schools for children on the autism spectrum. In her sample of 22 mothers of children on the spectrum, 40 percent reported changing schools (a taxing and stressful experience for many neurodiverse families). Lilley (2015) also suggested that assimilation is frequently misinterpreted as inclusion, highlighting the difference between a physical presence in a mainstream classroom and the transformation of attitudes, practices, and policies.
Similarly, Graham and colleagues (2016) suggested that disability standards are often disregarded by many schools, through practices such as suggesting that another school could offer better support, limiting school time (for example, through suspensions), responding to challenging behaviors with negative behavior control (as opposed to exploring and adjusting to a child’s underlying needs), failing to follow through on the recommendations of specialists, or excluding parents from decision-making meetings, to name a few. Anecdotally, within my counseling experience, I find that many parents of children with special needs related to at least some of the above practices.
Initiating Change
Lilley (2015) described examples of how mothers of children on the spectrum initiate change and advocate for adjustments for their children, usually in response to their children’s experiences of difficulties.
They support themselves primarily by this seeking professional validation. Liaising with external allied health and other therapists assists them in clarifying the needs of their children, helping educators to interpret underlying reasons for their children’s challenging behaviors, as well as supporting them in advocating for support strategies and adjustments. Often this is done at a considerable expense, given that mothers of children with special needs usually have restricted access to full-time employment (Lilley, 2016).
Lilley (2016) suggested that, frequently, mothers of autistic children face the possibility of being branded as difficult, which carries emotional challenges including alleviated experience of stress. Counseling and social support can be sources of validation and encouragement.
I hope this post adds to the awareness of the work of mothers of children with special needs as well as the educators who support young learners (fostering community awareness and understanding of autism is an ongoing research priority for parents of autistic school-aged children (Clark et al., 2020)).
Inclusion is an attitude that begins with open-mindedness. Hearing the creative, strong, and experienced voices of mothers of children with special needs adds much value to the conversation about how services are designed and delivered for all young persons, helping all families develop their potential.
References
Clark, M & Adams, D 2020, ‘Listening to parents to understand their priorities for autism research’, PloS one, vol. 15, no. 8, pp. e0237376–e0237376.
Disability standards for education 2005. (2005). Attorney-General’s Dep.
Field, S & Hoffman, A 1999, ‘The Importance of Family Involvement for Promoting Self-Determination in Adolescents with Autism and Other Developmental Disabilities’, Focus on autism and other developmental disabilities, vol. 14, no. 1, pp. 36–41.
Final report of the 2020 Review of the Disability Standards for Education 2005. (2021). Australia. Dept of Education, Skills and Employment.
Graham, L. J., Proctor, H., & Dixon, R. (2016, January 28). How schools avoid enrolling children with disabilities. [web log]. Retrieved June 24, 2023, from https://theconversation.com/how-schools-avoid-enrolling-children-with-d….
Lilley, R 2015, ‘Trading places: Autism Inclusion Disorder and school change’, International journal of inclusive education, vol. 19, no. 4, pp. 379–396.
Renzaglia, A, Karvonen, M, Drasgow, E & Stoxen, CC 2003, ‘Promoting a Lifetime of Inclusion’, Focus on autism and other developmental disabilities, vol. 18, no. 3, pp. 140–149.
Stoner, JB & Angell, ME 2006, ‘Parent Perspectives on Role Engagement: An Investigation of Parents of Children With ASD and Their Self-Reported Roles With Education Professionals’, Focus on autism and other developmental disabilities, vol. 21, no. 3, pp. 177–189.
