Apr 02

Being a parents of Autistic child has a unique set of challenges. In this article, I will share my personal journey as one of these parents. 

World Autism Day is celebrated on the 2nd of April every year. It is a day to create awareness and understanding of Autism, a developmental disorder that affects communication, social interaction, and behaviour. Being a parents of Autistic child has a unique set of challenges. In this article, I will share my personal journey as one of these parents.

I was not well-informed about Autism until my son, Ciarán, was diagnosed with it. Initially, we assumed that he was speech delayed, but during the Covid-19 lockdowns, his sensory overloads became more apparent. My wife and I were desperate for answers and started researching Autism traits. Finally, we sought a private assessment as the public health care route through the Health Service Executive (HSE) in Ireland was ineffective. The HSE’s failure led to long waiting times for parents seeking private assessments and early intervention services. Our son’s private assessment was only possible due to a cancellation, and we had to travel to a different county to avail of it. However, many other parents have waited for over 18 months for an assessment with private consultants.

Receiving a diagnosis of Autism can be a shock and feel unreal for parents. Although, it did not surprise us at the time, and we were relieved. However, we never thought of it as a label. We never felt denial, but we did feel guilty and blamed ourselves for our son being autistic. We had to learn to enter his magical world and appreciate the amazing people in his circle. As a parent with an autistic child, anxiety is a massive burden. The thought of Ciarán’s future is stressful, given the current state of neglect and non-existent services that he should have received years prior. Therefore, I try to live each day as it comes, embracing every small milestone.

Anger often accompanies anxiety, and parents feel the onus of responsibility thrown at them to navigate this journey without a map or a compass until they find help with other parents plotting their path. The journey of discovery begins once a child is diagnosed with Autism. Parents must navigate a new world of therapies, interventions, and support services to help their child reach their full potential.

As a father to an autistic son, it has been a challenging journey. I have had to learn new ways to communicate to understand Ciarán’s needs and desires. Children with Autism engage in repetitive or self-stimulatory behaviours that can be disruptive or challenging to manage. Every parent has breaking points with their children, but it is even more challenging when dealing with an autistic child. Ciarán has sensory issues and can be sensitive to certain tastes, smells, sights, and sounds. Therefore, I must predict sensory overloads before they occur. Socially, getting Ciarán involved in autism support groups and into his autism class has shown slow improvements with social interactions with others and participating in group activities and making friends.

As a parent, it can be overwhelming and emotional. We looked for support everywhere, including AsIAm, Snowflakes Autism Support Group, and other social networks for families who have begun the journey and are literally building and flying the plane without a manual. I quickly learned that it was other family members with autistic children who provided the most support. The government and HSE just placed our son on waiting lists and used delay tactics for health services, financial aids, and even withholding information on the rights of a carer or the rights of our child for supports. Sadly, this still happens, and I am now teaching other parents who have just started on the journey with their son or daughter.

The neurotypical world often fails to appreciate and accommodate the needs of autistic individuals, leading to exclusion, discrimination, and misunderstandings. Even worse, some people make ignorant comments that can be hurtful and dismissive, adding to the difficulties faced by those with autism and their loved ones.

As a parent of an autistic child, I have experienced first hand the challenges and misunderstandings that come with raising a neurodiverse child. I often compare notes with other parents of autistic children to see what comments they have received in public. Some of the most confusing and hurtful comments I have received include, "Oh so sorry to hear about your son's autism, was he in hospital long?" and "I pray he recovers soon!" These comments show a lack of understanding and empathy towards autism, and the belief that it is a condition that needs to be cured rather than accepted and accommodated.

Other comments that I have received from friends and even family members include suggestions that paying money privately can improve my son's condition, or that he does not look autistic. Some have even described him as a brat or constantly misbehaving, suggesting that I need to discipline him better. These comments are not only hurtful but also show a lack of awareness and education about what autism is and how it affects individuals.

It is no wonder that many autistic individuals feel the need to mask their habits and identity to fit into a world that is not designed for them. This is an unfair burden that they should not have to bear. Instead, it should be neurotypical people who take the responsibility to identify and appreciate the strengths and differences of neurodiverse individuals. By doing so, we can create a more inclusive and empathetic society where everyone can thrive.

It is important for people to be respectful and compassionate towards parents of autistic children and their children. It is also crucial for them to educate themselves on the realities of autism so that they can be more supportive and understanding. We need to work towards creating a world where neurodiverse individuals can feel accepted and valued for who they are, rather than being judged for their differences.

Despite the challenges, raising an autistic child can also be incredibly rewarding. While my son, Ciarán, communicates with us in a different way, my wife and I have learned to understand him. His teachers and therapists have also learned to understand him, and they are amazing at what they do. They are part of his world, even if it is only for short periods throughout the day. We appreciate their efforts and the difference they make in his life.

If I were to ever get a tattoo, I would have the word "Takiwatanga" tattooed on my arm. This is the Maori word for autism, which translates to "In his own space and time". It would be a constant reminder for me to slow down, take a breath, and see the world from my young son's eyes. His mind is magic, and it is beautiful to see the world through his perspective.

As a parent, I will continue to stand up for my child, even if it means standing up against the world. Autism Awareness Day is important, but it is time for the world to celebrate and appreciate autism every day. We need to work together to create a more inclusive and accepting world for everyone, regardless of their differences.