Embracing autism

They say parents know their child best of all and I knew my son Nicholas was autistic at six months… nobody believed me! My motherly instincts were confirmed when he was formally diagnosed with Autism Spectrum Disorder at the tender age of two.

I vividly remember watching Nicholas closely, looking for signs of autism as other members of our extended family also share the disorder. He was a happy, placid and active toddler who just happened to constantly collect straight objects, such as toothbrushes and sticks while toe walking around our house not saying a thing. Life before the diagnosis was difficult as there were so many questions, no definitive answers and minimal support and direction on what to do next.

After numerous open and honest conversations with family and friends I found myself in a place where I was more discouraged rather than empowered to seek and pursue answers regarding Nicholas’ developmental issues. Just saying the word ‘autism’ struck fear in our hearts but I knew the only way we could move forward was by seeking the truth, which is exactly what we did.

Whatever path people take to be diagnosed, there is a sense of relief in knowing why and how a person lives and experiences the world as they do. This was the case for me, but coupled with this relief was also grief. My husband, Ivan and I both responded differently to our son’s diagnosis. I was grieving over the fact that my son would be suffering a life long disorder and that in turn my son would think and love himself less because of it. For Ivan, he experienced a loss of hope as he grappled to understand the impact Autism would have on Nicholas’ life and on the family, both now and in the future.

In an attempt to console me I recall the psychologist’s comments during my son’s diagnosis that it was not my fault, nor my husband’s or my child’s that Nicholas was born with autism, but that did not stop the tears from falling. I was more recently comforted by Pope Francis’ words at an autism-themed conference in Rome where he emphasised to 7000 participants that “it is a cross, (that) must be accepted without shame or withdrawal into solitude”. During his address, the Holy Father touched and embraced children with ASD and had an open and honest conversation about the need for everyone to be “committed to promoting acceptance, encounter and solidarity through concrete support and by encouraging renewed hope”.

Unfortunately in this day and age society’s response to autism has a spectrum of its own, ranging from people who do not believe that autism exists; to those who choose to label the child as “naughty” and the parents as “irresponsible” as they are not strict enough or are not parenting correctly. Then there are those on the other side of the spectrum who commit themselves wholeheartedly to discovering ways to understand, treat and support individuals and families dealing the complex feelings, needs and rights associated with caring for someone with autism.

What we do know about ASD is that it is a pervasive, neuro-biological disability that occurs before children have their third birthday. There is no known cause for autism and at present, no cure. All children who have an ASD have significant difficulties with communication and with social and emotional understanding. Their lack of flexibility in thinking and behaviour impacts on their understanding of the world. The effects of Autism on learning and daily functioning range from mild to severe. From being an extremely rare disability in the 1940s, when autism was first described, it is now the most commonly occurring childhood disability. It occurs in approximately one in every 100 children in Australia.

Autism in our family is a cross we embrace daily but faithfully, proactively and collaboratively starting in our home where Nicholas enjoys sharing his life with four other siblings. This provides him with an environment that is loving, accepting and challenging. But support must extend beyond the family as Pope Francis advocated during his address by appealing to governments, institutions and Christian communities to “create a regional network of support and services which are comprehensible and accessible”. Put simply by my parish priest, “Love costs” and it is a cost that cannot be endured alone. Thankfully for Nicholas he has been engaged in early intervention services since he was two, ranging from autism intervention units and respite services to speech and occupational therapy. All have had a tremendously positive impact in enabling Nicholas to engage and participate in the world around him.

Today at age six, Nicholas continues to be a happy, placid and active boy. He talks now but with ongoing speech articulation issues. He willingly participates in learning at school and at the School of Religion at our local parish, where he insists on sitting on the same chair and at the same table each day. He also now has friends outside the family. However, in his own words he “hates to share” even though he knows he must if he wants to be a good friend. He has also moved on from toothbrushes and sticks to his Lightening McQueen diecast car, which he faithfully eats, sleeps and plays with everyday and takes everywhere he goes.

I honestly do not know how much Nicholas is aware of his autism and how it impacts his life, and perhaps this is God’s saving grace. What I do know is that Nicholas does love himself, loves his family and loves the world around him. God never makes “junk” or a “mistake” and I am thankful for the gift of Nicholas in our lives. Just as his namesake states, I truly believe that God, through Nicholas’ weakness, teaches us that all can be “victorious” through Christ by embracing our crosses.

In summary…

If you have questions or concerns about your child’s development, please seek advice from any of the following resources:

  1. Speak to your GP, paediatrician or psychologist
  2. Visit a drop in clinic at your local child and family centre and speak to a registered health professional
  3. Join a PlayConnect Playgroup which specialises in supporting children with disabilities and autism like symptoms
  4. Become a member of the Autism Asperger’s ACT Association and download their information booklet for families titled “What Do We Do Now?”