The Importance of Autism Support Teams: A Plea From an Autistic Child's Mother
The parents of children with autism know that it can be a lonely road to travel sometimes. We know it can feel hopeless. This hopelessness and loneliness can lead to depression. All parents probably have these feelings to some extent, but the parents of autistic individuals feel these emotions multiplied exponentially. We special need’s parents define these emotions. As the mother of a teenager with autism, I have experienced about every emotion on the spectrum. I have screamed to myself, cried, smiled, and felt hopeless.
A few years ago, I wrote a well-received article called “Parental Social Isolation and Autism” for emaxhealth.com. This article spoke of how we parents’ isolate ourselves after our children's diagnosis. For those of you that have not read the article, I encourage you to follow the link and read it. It is a very informative article on a very real problem we face.
Autism Isolation Syndrome:
I suffered from this syndrome for years, still do. Some days I am floating around stage 1, some days’ stage 2 and some stage 3. It seems that no matter what I always lose myself on the days that my child is isolating himself. I am terrified to go out into public on some days [not because of the strangers so much as because of us. It's a new environment no matter how hard I try to make him ready for it.] There are few things that gets me through these times. These aren’t always my husband or my family--no, it's often the fellow parents of autistic children I have met along my journey with autism. The ones I have never and probably will never meet.
See, I lived many years without a single support system to turn too, I thought no one understood. One day I met two women named Kat and Nunu online; from that day on everything changed. Kat introduced me to what it felt like to have a friend that "got it," and Nunu introduced me to one of the most important things in this complicated, misunderstood life: support groups! Listening to one another without judgment and being there for one another was refreshing for me when I needed it the most. These women changed my life. I have since met and helped hundreds of families affected by autism through my journey in writing. I am there for each and every one whether I know them or not. That should be our job’s as parents of autistic individuals- be there for each other. Through the years I have learned that having a support system is key.
The ladies and gentlemen I have met over the years have all impacted my life; each left their own footprint on my soul [some continue to do so]. A few I can laugh with; a few I cry too, and a few I joke around with. All of them I know I can talk to, complain and be open with about autism. In other words: they get it because they live it too.
The couple of individuals that I keep close to my heart:
- My solace from Colorado
- My runner from Massachusetts
- My Australian beauty
- My lady bug sister from Indiana
- My gigantic eared brother from everywhere
- My amazing lady from Ohio
- My Washington beauty
- My eccentric beauty in California
- My strength from Wisconsin
This is a hard life to live, yet definitely the most rewarding life one could be lucky enough to have been chosen to have- none the less a hard one to live. This group of people mentioned above are my "Autism Support Team." I know I can go to any one of them at any time and receive support. I take the frustrating things to them as well as the encouraging. [To my luck my support team happens to have international links, so I literally have someone I can turn to at almost any time of the day]
Having a group of people like this surrounding you is crucial in the special needs world, especially when dealing with Autism Isolation Syndrome. Even if your "Autism Support Team" is reached by turning on a computer and searching “autism” on Facebook or dialing a phone number, these people are irreplaceable members in each of our communities. You must have some kind of support system when living with autism. Just like our children need support.
We need support too!
My plea to you:
If you feel overwhelmed; tired; depressed; even happy- reach out to the people that understand better than anyone. Ask the parents that have already been through what you are going through. Get advice from like-minded individuals. Gove advice when you have it to give. Develop bonds that will last a lifetime. Online support groups are a popular and effective method of personal support- they are also easy to get too, and you don't have to mold your life around meeting times. They are always open.
Many communities also offer in-person support groups that help you connect with local families that are also affected by autism, as well as local resources. To find such a group in your community go The National Autism Associations website. These groups often meet once or twice a week in a group setting, at the same time of day. It is done much like group therapy in some instances.
No matter how you do it, find your "Autism Support Team" as soon as you can- it'll change your world. Just be careful which support groups you join and what advice you listen too. Always research information you obtain from individuals online and be discrete about information you share. You are also encouraged to read the aforementioned article to learn more about Autism Isolation Syndrome and how it affects us as special needs parents.