Parenting an autistic child comes with incredible joys, but it also presents unique challenges that can be difficult and, at times, frustrating. It’s important to acknowledge these feelings without guilt because frustration does not equate to a lack of love.
While there are many struggles that parents of autistic children may face, this article focuses on three key challenges that I find particularly difficult.
1. Communication Barriers
One of the most challenging aspects of raising an autistic child is navigating communication barriers, especially when verbal communication is limited.
Understanding their needs and emotions
It can be incredibly frustrating when I try everything I can to understand my son’s needs or what triggered a certain behaviour, yet nothing seems to work. I can only imagine how difficult it is for him to want to express something but struggle to do so.
For example, during reading and writing activities, my son may say, “No writing,” while holding the pen and crying. Even when I reassure him that he doesn’t have to write, he continues to cry and repeat the same phrase. It’s moments like these that highlight how difficult communication can be for both of us.
Repeating Instructions Without a Response
Most children require repeated instructions, but autistic children may struggle with comprehension as well. With my son, I have learned to phrase my instructions in a way that allows for simple yes-or-no responses; otherwise, I often find myself talking without getting any response at all.
Decoding Non-Verbal Cues and Unexpected Behaviours
Understanding sudden behavioural changes can be mentally exhausting. For example, while shopping, my son may suddenly start screaming and refusing to cooperate, even though he was previously fine. This could be due to sensory overload, but then he calms down again shortly after.
Other times, he handles the shopping experience without any issues. The unpredictability can be frustrating, especially when I have to leave the store without getting what I need.
2. Rigid Routines and Transitions
Many autistic children rely on routine and structure, and any disruption can cause distress.
Resistance to Routine Changes
My son’s need for consistency is evident, particularly in his school routine. He attends a mainstream school with a learning assistant, and one of his previous one-to-one support workers refused to allow him to engage in his morning routine, running up and down the school building before starting his day. While I understand safety concerns, this activity had become an essential part of his regulation process.
The forced routine change resulted in a meltdown in which the assistant was hurt. Despite my previous complaints about this staff member, the school had not replaced her. To make matters worse, the headteacher later sent me a letter threatening exclusion.
As you can imagine, I was furious and responded, explaining that the meltdown was a direct result of the change in his routine. Other staff members who accommodated his needs never had the same issue with him.
Struggles with Flexibility
A simple change, such as taking a different route home, can cause distress. My son once decided to take an alternate route home from school, and from that day forward, he refused to return to the original one. My attempts to go back to the old route failed, and I eventually gave in despite the new route being longer. This can be frustrating, especially when I have work commitments and need to get home quickly.
Difficult Transitions Between Activities
Many autistic children develop strong interests in specific activities. My son is particularly fascinated by letters, words, and digital design and editing. When he started school, separating him from the iPad to enter the classroom was nearly impossible, so his assistant let him take it in to ease the transition.
Moving from Reception to Year 1, with a new support worker and a different building, was especially difficult. His dysregulation became so severe that I started questioning whether mainstream education was the right fit for him. The lack of consistency and increased transitions overwhelmed him, leading me to request an emergency review of his Education, Health, and Care Plan (EHCP) to explore placement in a specialized school.
The process of getting into a special school, however, is a challenge in itself, something I could write an entirely separate article about!
Transitioning from preferred activities to less desirable ones is another common struggle. While tools such as visual schedules, Now and Next boards, and timers can help, their effectiveness varies. My son sometimes responds to these methods, but other times they have no impact at all.
3. Emotional and Mental Exhaustion
Parenting an autistic child requires constant advocacy, which can be emotionally and mentally draining, especially when balancing work, other children, and personal responsibilities.
Fighting for the Right Support
Navigating the education system has been one of the most exhausting aspects of this journey. From the beginning, even securing a place in a mainstream school was a battle. The school initially refused to admit my son twice, and I had to initiate mediation with the local authority to have the school named on his EHCP.
Once he was admitted, I faced ongoing struggles finding a properly trained one-to-one assistant, ensuring the school met his needs, and pushing back when they cut corners. Trying to get him into a special school presented yet another set of obstacles, including limited availability and selective admissions.
I have received multiple rejections from schools claiming they were full or, in one case, stating my son “wasn’t SEN enough” simply because he can read. The entire process is overwhelming.
Feeling Burnt Out But Still Carrying On
There are days when the exhaustion is overwhelming. Balancing work, managing my son’s school challenges, and tending to his three-year-old sister who has meltdowns of her own (not SEN-related) can feel like too much to handle. There have been moments where I’ve broken down in tears, yet I know I must keep going, always hoping for better days ahead.
A little Encouragement
Parenting a child with autism comes with numerous challenges, including sensory difficulties, eating issues, and the constant need for advocacy. See my other articles on these here:
While our frustrations are valid, they do not define our journey. Alongside the difficulties, there is deep joy, personal growth, and an unbreakable bond with our children. Seeking support, practicing self-care, and celebrating small victories can help make the journey more fulfilling.
And with that’ll leave you with this:
“Parenting a child with autism comes with challenges, but within those challenges lie incredible strength, resilience, and love. Every small victory is a testament to your dedication, and every tough moment is a step toward understanding and growth. You are not alone, and your efforts make a world of difference.”
