Being the parent of a child with Autism and receiving that first diagnosis can be a rather daunting experience.
Reality starts to sink in and the questions start being asked, “What do I do now?”
But before I dwell on that, we must first realize a very important component to parenting a child on the spectrum. We have to realize that we are not alone. There are thousands of families dealing with similar circumstances around the world, and we’re all in this together.
Speaking from personal experience, this is a step that has helped me the most. There is no greater knowledge then understanding and connecting with someone who’s ‘been there’ and ‘done that’. Someone who’s been there can tell you, ‘trust me, I know’ and ‘it’s going to be ok’. This level of encouragement can speak volumes to the family just starting out…or is having a difficult moment in their journey.
But beyond that, connecting with a community of people who can support and encourage you in your Autism journey can be a huge benefit.
Many times families with a child with Autism can often be ‘shut ins’ in order to protect the child, and to control the child’s surroundings so they – or you – don’t get hurt. Hurt in this measure addresses not only the physical signs (handflapping, screaming, head banging, meltdowns) but also the emotional stress that going to a public place may present.
Public places with a child with Autism present itself it’s own set of challenges, as each child is different and can handle situations to a different degree. Some children can handle going to the grocery store without any problem, while others it is a place that primes the child for a quick meltdown at a moments notice. Having someone to talk with or to connect with to get tips on dealing with going to the grocery store helps greatly.
Many churches, for example, just don’t have the facilities and/or people to assist families dealing with ASD. So, what can a family do when even Churches have a challenge in this area? Answer: get connected where you can. We all need support groups to provide encouragement, to also be a place to vent and release those frustrations and a place to ask those odd questions as new things arise. Connecting with someone in this fashion could not only help individual families, but also education the local churches on what is needed ot help families of Autism and Special Needs.
The biggest encouragement I can provide is getting connected at a local level. Find an organization locally that meets your needs for you and your family. These organizations, such as the Autism Society, can provide resources at a local level to get connected. Some of these resources include family events to get families connected together, and also books to help us in those quiet moments to help us learn more about the topic at hand.
It’s good to have extended families as well, like grandparents, aunts, cousins, etc… But connecting with those who are there in the daily grind can often help provide a balanced approach to dealing with your child and family situation.
Creating a sense of community in the Autism world is a daunting task in and of itself. Unlike Cancer there is no specific known cause of Autism and since it’s a lifelong disorder – there really isn’t a cure. There are, however, treatments to help children address the disorder. If done early enough, these treatments can and often do allow the child to lead a ‘normal’ life. And due to the controversy surrounding cause/cure/treatments…the next question that is often asked then is, “where are we in this process…and what would work well for us in our situation?”
As they say, when you meet one child with Autism – you just met one Child with Autism.
The best thing to do, then, is to discuss the issues surrounding Autism. If enough questions are asked by both parents and organizations, we’ll start answering the bigger questions – what happened to begin with to cause all these increased reports of Autism?
One of the sites that help connect families and organizations to discuss Autism is Autisable.com. This site is an online blogging community. A portion of it’s profits from people just using the site is donated to non-profit organizations that assist families dealing with the disorder. As more people and organizations get involved with Autisable, the more it is able to donate. This is the goal of the site I manage, to develop community – and help one another.
We must remember that having a disorder is not something to be ashamed of, but rather to be understood and addressed accordingly.
Being connected to the Autism Community online can also benefit.
From personal experience I’ve had my own challenges in sharing with my family what life with like with Autism. The challenges dealing with IEP’s, the education process, what insurance companies cover and don’t cover….
In short, my family had some incorrect conceptions of what we were dealing with.
By being connected online, my family started to not only see my journey, but more importantly became educated at the nuances of what life with Autism is like. They became more understanding and aware. And now they are very supportive.
Again, we’re all in this journey of life together. By connecting and understanding what each other are going through – we truly realize that no one is an island.
Joel Manzer is the lead editor for Autisable.com, a blogging community site where people connect to tackle the puzzle of autism.
Autisable was born following a difficult two year process when Joel's son was diagnosed with autism. It was at that moment that his life-long mission became clear. He began helping not only his own family but the millions of others who deal with autism's triumphs and challenges in everyday life.