Being a parent is a joyful and rewarding journey, filled with love, laughter, and the occasional sleepless night. But when you discover that your child has autism, it can introduce new challenges and emotions that may leave you feeling overwhelmed. You’re not alone in this journey, and support and guidance are available to help you navigate the path ahead.
In this article, I will address some of the common experiences of parents trying to raise a child with autism. Much of this information comes from a recent study that interviewed parents of children with autism to try to identify their shared experiences and found 3 key themes: emotional burden, family burden, and social burden [1].
Understanding Autism
Autism, or Autism Spectrum Disorder (ASD), is a neurodevelopmental condition that affects the way a person communicates, interacts with others, and experiences the world around them. Recent research has estimated that nearly 1% of the global population (roughly 80 million people) will fall somewhere along the Autism spectrum [2]. Despite its prevalence, many people still know very little about this condition and especially what to expect if their child receives an ASD diagnosis. In the following sections, I will highlight some parent’s experiences of this journey and provide some tips for parents of newly diagnosed children.
The Emotional Burden
The initial revelation of your child’s autism diagnosis can trigger a whirlwind of emotions. Parents often oscillate between shock, denial, sadness, and anxiety. It’s crucial to acknowledge and embrace these emotions as part of the journey [1].
For instance, Sarah, a mother of a five-year-old with autism, recalls her emotional journey vividly. “When the doctor told me about my child’s diagnosis, I felt like my world was turned upside down. I experienced deep sadness, worry, and confusion.” Feelings like these are common. For many parents, an ASD diagnosis can feel devastating when it first happens, but over time they develop a deeper knowledge and understanding of the condition and grow to love their child’s unique personalities and idiosyncrasies, just like they would any other child [3].
Parenting a child with autism involves grappling with daily challenges that may be unfamiliar to others. These challenges encompass communication hurdles, sensory sensitivities, and repetitive behaviours [1].
David, a father of a child with autism, offers insight into these daily struggles. “Every day with my son is different. Some days, sensory issues are overwhelming for him, making ordinary sounds unbearable. Other days, he becomes fixated on a single topic, making it challenging to redirect his attention.” David’s experience is shared by many, who gradually learn to manage these challenges as part of their daily lives [3].
The Family Burden
Parenting a child with autism often leads to concerns about the future. Questions regarding education, independence, and long-term care can loom large [1].
Maria, a mother of a nine-year-old with autism, grapples with these ongoing worries. “I wonder if my daughter will ever achieve independence or hold down a job. The uncertainty keeps me awake at night.” These concerns are perfectly normal for parents of a child with ASD [3]. It is important to remember that many people with autism go on to live happy and fulfilled lives where they have friends, relationships, and careers [4].
Autism doesn’t solely affect the child; it impacts the entire family. Siblings, in particular, may require extra attention and understanding [1].
John, a father of three, shares how family dynamics shifted after their child’s autism diagnosis. “Our family routines needed adjustments. Ensuring that our other children felt supported became paramount. It’s a constant balancing act.” Many families with ASD children often find it difficult to balance the amount of care and attention given to their non-autistic siblings. One way to address this challenge is to engage and educate the non-autistic child, explaining that sometimes their sibling may require additional time or support, but that it does not mean that you love or care for them any less [5].
The Social Burden
Stigma and misconceptions about autism persist in society, leading parents to face judgment and negative attitudes from others [1].
Emily, a mother of a child with autism, recounts a challenging encounter that reflects the stigma parents often encounter. “During a visit to the park, my son had a meltdown. I felt the judgmental stares from other parents. Dealing with this kind of stigma is incredibly tough.” The stigma experienced by parents of ASD children is one of the most difficult aspects of this journey to deal with, as they have no control over how others treat or perceive their children or themselves [6]. It is important that parents try to ignore any judgemental looks or negative comments from others and provide a safe and comforting environment for their children. Parents can manage stigma and judgment by seeking support, educating others about autism, and fostering a supportive network of understanding friends and family.
Tips for Parents of Newly Diagnosed Children with Autism:
Connect with Support: Reach out to autism support groups and connect with other parents who have walked a similar path. They can offer valuable advice and emotional support.
Educate Yourself and Others: Learn about autism and its unique challenges. Speak to people about the realities of autism, and challenge stigma or stereotypes. Understanding the condition is the first step towards effective support.
- Advocate for Your Child: Be your child’s strongest advocate. Work with teachers, therapists, and healthcare professionals to ensure your child receives the support they need.
- Celebrate Progress: Celebrate every small achievement your child makes. Progress may be gradual, but it’s a testament to their growth.
- Take Care of Yourself: Don’t forget self-care. Caring for your own physical and emotional well-being is essential to providing the best support for your child.
- Embrace Uniqueness: Remember that your child is unique and has their own strengths and talents. Embrace their individuality and nurture their interests.
- Plan for the Future: Start early when it comes to future planning, including educational options and long-term financial security.
- Believe in Possibilities: Believe in your child’s potential. With the right support and love, they can achieve great things.
Parenting a child with autism is a unique journey filled with both challenges and moments of profound joy. Remember that you are not alone, and there is a vast network of support available to help you and your child thrive. Every child with autism has their own strengths and talents, waiting to be discovered and nurtured. With love, patience, and a strong support system, you can help your child reach their full potential and create a bright future together. While the road ahead may seem uncertain, remember that every small step forward is a victory worth celebrating. You and your child are on a remarkable journey, and together, you can overcome any obstacle that comes your way.
Author, Adam,
Smart TMS St Albans Practitioner
References
- Papadopoulos, D. (2021). Mothers’ Experiences and Challenges Raising a Child with Autism Spectrum Disorder: A Qualitative Study. Brain Sciences, [online] 11(3), p.309. doi:https://doi.org/10.3390/brainsci11030309.
- Zeidan, J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M.S., Saxena, S., Yusuf, A., Shih, A. and Elsabbagh, M. (2022). Global prevalence of autism: A systematic review update. Autism Research, [online] 15(5), pp.778–790. doi:https://doi.org/10.1002/aur.2696.
- Anon, (n.d.). Family Services – Transforming Autism. [online] Available at: https://transformingautism.org/family-services/?gclid=CjwKCAjw3oqoBhAjEiwA_UaLtma2gnTrIULTtijaIsx4C9QdzXyCf-irF7wpIAWUYG2km4shGMRxIhoCJ3IQAvD_BwE.
- Verywell Health. (n.d.). How to Prepare Your Autistic Child to Live Independently. [online] Available at: https://www.verywellhealth.com/parenting-an-adult-child-with-asperger-syndrome-259948.
- www.autism.org.uk. (n.d.). Family relationships – a guide for siblings of autistic people. [online] Available at: https://www.autism.org.uk/advice-and-guidance/topics/family-life-and-relationships/family-life/siblings.
- Turnock, A., Langley, K. and Jones, C.R.G. (2022). Understanding Stigma in Autism: A Narrative Review and Theoretical Model. Autism in Adulthood, [online] 4(1), pp.76–91. doi:https://doi.org/10.1089/aut.2021.0005.