Four years ago, in August 2008, our daughter Amy was given a diagnosis that would change our lives. She was three years old and had just started Kindergarten.
Although I was in the know and saw the autism traits loud and clear before our visit with the paedaetrician; it certainly made all the difference once an actual diagnosis was given.
Amy's diagnosis of ASD (autism spectrum disorder) opened up a whole new world that I wasn't completely prepared for. Despite my BA (Hons) in Psychology and Education and a decent number of years working with special needs children (including ones with autism); I naturally had no grasp of what it actually meant to live with a child with autism in the long-term. In many ways the last four years have been a whirlwind.
In the beginning I was exposed to a brand new world of autism - one with specialists, autism-lingo and a way of living that was considerably different to families of "neurotypicals." As the years have gone by, teachers and specialists have come and gone. With every new teacher and specialist, our story is revisited and retold. I continue to learn as much as I can about autism by attending talks by experts in the field. I've seen Celeste Littek (four times), Tony Attwood, Sue Larkey and most recently, Tim Powell. I attend these talks and workshops mainly as an opportunity to meet up with others who live with autism. It is the same reason why I've been attending coffee support groups with Autism New Zealand locally for the last four years - so I don't feel isolated.
It is easy for parents of neurotypicals to claim they have the same or similar issues - which they probably do. But not to the same extent. It is only other parents of other children with autism who understand the true magnitude of what it is like living with - and managing a child on the autistic spectrum. The truimphs are just as important to be shared as are the battles or current issues that have us either wanting to tear our hair out or feeling perplexed - or both!
I've never had any issues with changing our lives or developing routines to accommodate Amy's autism. Amy has always been Amy - so our lives have become simply that - our lives.
The frustrations and difficulties have come with mainstream education and specialists. It would seem you quite simply win some, and lose some! There have been teachers and specialists on board that have "got it" and have been amazing supports to both myself and Amy. Then there have been those that haven't. It is exhausting when as a parent you are put into a position of having to "prove" your child is as autistic as you claim them to be or that you are labelled as the over anxious and over protective parent. I have left in tears after meetings with those who were meant to help. But I've learnt, it is all part of the ride. There are certainly highs and lows along the way.
Interestingly enough, I didn't grieve the diagnosis to begin with. I kind of just went with the flow. Amy had an early intervention teacher on board close to her diagnosis and shortly afterwards, a teacher aide in Kindergarten. I made the mistake, looking back, as describing Amy as "mildly" autistic and "high functioning" (there are examples of this wording even in this blog). She is quite the talker these days (despite being pretty much non-verbal until she was four) and from first glance, appears to be doing okay socially. These first impressions cause many to claim "Her autism isn't that bad!" and to downplay her autism. However her high anxiety and delicate sensory issues need to be carefully managed, each single day. If we don't give Amy the space and "sensory diet" she needs; then the wheels will come off. It's guaranteed. We try to avoid meltdowns with a strong 34kg child.
I, like some specialists on board in the early days, was under the impression that autism could somehow be fixed - that if we got in early, some behaviours could even disappear. It wasn't that I didn't accept Amy for who she was - I just thought, like many, that autism could be perhaps cured.
Four years post-diagnosis and I'm telling you this: autism cannot be cured. It is for life. It can be managed, it can be controlled. It can be preempted, monitored - whatever you want to call it. Bottomline: it is only through understanding and careful consideration of an individual's needs, that autism can seem to (from the outside) be improved. But it is always there.
I would say in many ways the last year or so have been the harder years with Amy. Now she is seven, her differences are more obvious. When she was a preschooler a lot of preschoolers were doing similar behaviours - just not to the extreme like Amy would. But we would shuffle her along - remove her from situations - and all would (mainly!) be forgotten.
It's a little harder to hide autistic traits with a seven year old. Her black and white thinking either confuses other children or goes over their heads. Her high anxiety and sensory needs are hard for both children and adults to understand. It is only after spending longer periods of time with Amy, that the penny drops. Sometimes.
We've always been open around Amy's autism. Her self-awareness is great to see though of course she is still understanding her autism and what that means. Earlier this year Amy chose to do volleyball after school for a term. The children introduced themselves and Amy started with "I'm Amy and I have autism." There was a good few seconds silence as the parent running the after school sporting event contained herself. Then a couple of other peers piped up from Amy's class and talked about how Amy didn't like loud noises and how they tried to be good friends.
The older Amy gets, the more different our home life appears from those with neurotypical families. Amelia is rarely fulltime at school and is exhausted after school. There are no after-school playdates. There aren't many playdates in the weekends either as usually Amy needs this time to refuel after her week at school. However over the last six months, we've been able to have friends over some weekends. But that wasn't the case for her first two years at school.
And friends. What a heartbreaking topic that is. Oh Amy has them. Two mainstayers that come with two very supportive and understanding families. The mothers are also very good friends of mine. Friendships are emerging from within the classroom. But it is such a delicate dance. Sometimes playdates initiated our end aren't reciprocated. Some kids just aren't a good fit for Amy.
We live a pretty quiet life. Routine is paramount to sanity! Occasionally we may stray from the status-quo just to spice things up. But there are always repercussions for doing so. It is hard for visitors to understand why our lives are as rigid as they are. Travel isn't easy. But each year, as Amy grows, we push the boat out a little further. She has a thirst for exploring the big wide world. There are some adventures on the horizon. They may not seem a big deal to the average family; but they are opportunities for us to grow as a family and to break free from our routine from time to time.
