I’m a new arrival to Planet ASD. I use this analogy deliberately as it does feel as though I have stepped through, or fallen into, a wormhole opening to another universe. I wonder where all these research papers, all these treatment models, all these parents and children, and their courageous stories have been. Where have they been hiding? How was I so blind to this ever-expanding ASD community apparently living right under my nose? Sure, I’d heard of autism. Though I hadn’t given it a lot of thought. And when it had crossed my mind in years past I considered the possibility of an autistic child with ignorant terror.
Now I am a new, life member of the autism community. Prior to Harri’s ASD diagnosis two weeks before his second birthday my mummy mantra was ‘This too shall pass.’ This idea was a lifeline during his incredibly difficult baby years. Now that saying no longer applies. Autism is a journey of a life time.
So while I am still in the process of coming to terms with my little boys diagnosis I thought it may be timely to reflect on grief and the process of recovery. And just as importantly, offer a challenge to those who may find themselves stuck in their grief cycle, unable to move forward into a more productive head space.
There are as many journeys to the diagnosis of Autism as there are ASD people. Consequently there are as many responses. Though one theme seems to recur in autobiographies and ASD chat forums, magazine articles and the like: that is a grief reaction. For many it is the despair that comes with recognising your child has a life-long disability, and what that means for both child, and those responsible for their day to day care. There is fear your beloved offspring may never be able to make and maintain meaningful friendships, live independently, be able to stand up to inevitable bullying in the playground. There is so much to feed anxiety and worry after receiving the ASD news. It is understandable then that so many parents pass through a stage of inconsolable pain, a terrible sense of loss, and even denial. For some there may even be shame. It is not unusual for these feelings to be compounded by thoughtless comments from friends and family.
It is little wonder that some parents will be unable to overcome this mourning phase. Caught up in a negative spiral of sorrow and anxiety which is often coupled with social isolation due to difficult public behaviours by the child, parents can become ‘stuck.’ One cannot deny an element of self pity is difficult to avoid, and for many there is the question of ‘why me’? Why my child?
In response to the question of why me, my thought is, why not? Why would I presume to be entitled to escape the challenges life throws up. When thousands of children are diagnosed with serious illness and disability each week worldwide, how could I insist on immunity?
I don’t want to judge others and how they respond to their child’s diagnosis. What I do want to share is what I have found helpful so far. And perhaps as a consequence offer an alternative to parents who are struggling to move beyond despair. And perhaps also help parents avoid some of the pitfalls that can come with the inability to find acceptance.
My first instinct was to read, read, read. I have an insatiable need to understand the Autist’s perspective, to know what research shows about responses and outcomes to differing treatment models, to avail myself of a realistic short and long term perspective of what my sons life may look like into the future. I know for many others reading is time consuming, or difficult. For those people I would suggest going to the best known sources on line. They have done all the hard work already by casting a critical eye over claims, theories and crackpots, and you can get a short cut to good information. If you are unsure about theories and therapies being offered there are sites such as quackwatch.com you can check. They have a particular section for Autism.
I have found of particular value books by parents who are currently living with one or more ASD children. Try George and Sam by Charlotte Moore. She has two sons with Autism, is a single mother and manages to write. She is a real inspiration as there is not a skerrick of self pity in her story.
I read autobiographies, websites, and articles written by those on the ASD spectrum. You will often be enlightened and inspired by their stories. Start with Don’t Mourn For Us by Jim Sinclair. It’s a short essay that may change your perspective as it did mine.
Get involved in your childs therapy. It will give you an opportunity to take ownership over your childs progress and learn enough to ask the right questions as you go along. Consider intentional exclusion of parents in participation of therapy by a service provider as a red flag.
I found support groups online. There are also local community services. There are many blogs, chat forums and support groups all over the world for parents of ASD children. Be wary though. There are also groups out there that may try to take advantage of people who are desperate for help. Always be wary of anyone offering a ‘cure.’ As a parent of an ASD child and a Doctor, Michael Fitzpatrick writes in his book Defeating Autism: A Damaging Delusion parents that are struggling to come to terms with their child’s diagnosis may be vulnerable to the ‘snake oil’ being peddled by those promising a cure. He argues that denial of a child's disability can lead to parents chasing miracles, and spending enormous amounts of money unecessarily in the process.
Finally, I don’t want to appear harsh or critical of those who are struggling to remove the grip of grief from their lives. I understand the hurt, as this is still raw for me also. Tears have fallen while writing this. But if my child's best interests is truly my primary focus I will refuse to wallow. I will grant myself permission to have sad days. But I will not allow my sadness to compromise my ability to ensure my son's future happiness.
This article was written at the very start of my ASD journey. Before I had been introduced to the controversy surrounding the term "disabled" in relation to those on the spectrum. My position has changed over time and is addressed on my blog at the post When Is a Disorder Not a Disorder.