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In our more secular world, particularly for middle class Americans, community gathers less around faith than around activities. For families, those activities include family gatherings - holiday events, barbeques, family vacations, visits to Grandma's. For mothers, those activities often include play groups, playground visits, PTAs and round-trips to afterschool activities. For fathers, those activities generally include sports or community activities. Dads coach their kids' teams, help out with Boy Scouting, or help build the backyard fort.
Parent with kids on the autism spectrum, however, are often exiled from the ordinary pursuits that make up our secular, middle class, American community. Big family events overwhelm little ones on the autism spectrum - and autistic meltdowns confuse and upset relatives, sometimes even sparking criticism and anger. Children with autism have a tough time with playdates, and often create friction between moms. And it's tough for dads to bond with their peers if their child with autism is the one kid who wanders off instead of kicking or catching the ball.
As if that weren't bad enough, parents of children with autism have no pre-existing community with similar issues to turn to - nor do their children's issues elicit the compassion or support of the general public. Unlike parents of children who are blind, deaf, or living with issues such as Down syndrome, there's no physical manifestation of a disorder. Nor is there any historic understanding of what it means to have an "autism spectrum disorder." There are no pre-existing supports - such as braille or books on tape for the blind - to help out kids with autism. There are no colleges - such as Gallaudet for the deaf - set up especially for children with autism.
To make matters even worse, children with autism are nothing like one another. That means that even newly-minted parent support groups are likely to be made up largely of people whose concerns are completely disparate. While one parent is worried about her child making friends, another is anxious because his child has yet to speak a single word. These differences can actually set off disagreements among support group members, who want to attend to their own needs or pursue their own projects.
If exile is among the worst punishments possible, parents of children with autism are living with that punishment - and all through no fault of their own. Perhaps that's one reason why parents group together with such intensity and passion around issues like vaccines, therapies, potential cures and "neurodiversity." Perhaps, by creating community around autism-related causes, and investing those causes with enormous significance, parents of children with autism are finding what they need: a home, and a reprieve from exile.
Exile and ostracism were special punishments in western cultures such as Greece and Rome reserved solely for those who could not conform to expected social behaviors. It was done to preserve social norms. I am comfortable with public institutions holding participants to a certain level of behavior.
I think that’s a depressing way to look at a life or family which is effected by autism. I don’t consider my life as a mom as an exile, but an adjustment and not always one forced upon us by community but adjustments needed for that child. It all depends on how one looks at exile- to me it means forced upon you by some one else. The adjustments we make within my own family is more due out of love than it is of being forced.
I find myself always looking on the brighter side. If I have to leave earlier from a family gathering due to my child, who cares? Some of those people I didn’t want to be around anyway and going home sooner means I can get more done there or have a nap. As for peer relationships of my child with other’s, that can always be difficult however some children are not ready to be a good friend to another, or even a half way good friend yet many expect our kids to be flooded with friendships. Not having friendships can have it’s brighter side too. I’m not dealing with arguments, trading toys and cards, learning habits and other things. I personally dread the friendships than I dread the lack of them. Either way, friendships cant be forced of anyone.
Speaking only for myself and my extended family, I find more friction within the autism community than I ever have with close relations. It could be that I tend not to want to argue, and had any family member presented themselves in that way, I’d just walk away and not waste my time which I did do with one sister. In families and the autism community, some just want to push buttons and be pushy. I have better things to do.
As for autism support groups, it’s no different than AA (Alcoholics Anonymous) the reasons for the drinking may all be different and the manner in how to stop drinking may work for one but not another however those people are all there for the same reason: to support each other. It shouldn’t matter the age of the child of autism, or their parents (be it new to autism or an old pro) and what they found to work for that child; all parents at one time or another generally will go through much of the same things and worries and for those that do not doesn’t mean that they couldn’t still relate to another. That’s the whole point, openly sharing, listening and helping if you can. One cant join any support group of any topic with a mind set to one single issue of it and be focused only on themselves.
But in the end, I’d never consider my life with my child who has autism any where near exile.
Our own parental attitude towards a difficult situation plays a huge factor in feeling exiled or not.
In public, if our son is having a meltdown and we sense that someone is about to approach us to offer “words of wisdom or criticism”, we start using a couple of signs (sign language). It doesn’t matter if our son understands the signs…it doesn’t matter if the stranger understands them…it just shows that something more is going on than what it may look like. I’ve had people stop in their tracks and walk away…perhaps still staring, but walking away which is what is wanted.
Similarily at family functions. Our son knows exactly the wrong socially acceptable time to blow up, so we watch for early signs and take turns taking him for breaks from the situation. If we notice family members having difficulty understanding our son, we’ll often invite them along so we can talk. Yes, we’ve had family in the early years request that we get a sitter for our one son, but our other 3 children could attend. We would agree and show up with all 4 kids anyway, then prove that a successful, fun event…even the ritziest wedding…could be had by all, as long as chances are given. We’ve had some massive family events where adults actually fought over who would take my son for a walk because so many people needed a break…but it all started because that is the approach my husband and I took to begin with.
It takes a village to raise a child, and our kids are no different. Tolerance in those villages has to be taught, and in our own villages it does too. Some may try to send a family to exile, but that doesn’t mean exile needs to be accepted. We’re all in this life together.
My 2 cents worth anyways.
Cheers
Caroline
You hit the nail in the head. Even though I have a decent social life and participate in many gatherings, I still have that feeling that I don’t belong or my family doesn’t fit in.
such truth in this piece!…as one who knows too well the lack of understanding and compassion afforded these children…i have often said, that if their problems were as visible as needing a wheelchair or asl interpreter no one would likely be judgemental nor would we be ostracized…
glad i’m not the only one who thinks that way.
This is just so painfully true for me. Groups of children overwhelm my daughter, so I had to quit Gymboree and our mother/child playgroup. I had another mother with a child near my little one’s age, but she dropped all contact after I told her about the PDD/NOS diagnosis. I guess she figures it might be catching. When we go to the park my daughter wants nothing to do with the other kids, and I often feel like the other mothers are watching me and thinking, “does she know something isn’t right with her little girl?”
The funny thing is that I googled “autism, exile” and this article showed up. The thought of ‘exile’ has occurred to me many, many times as we raise our 16 year old autistic son. I’ve learned to cope in some positive ways, however. I’ve become more conscious of nature and rely more on the passing seasons and the beauty of my surroundings wherever I am and have sort of turned away from society. It’s what works for me (us) in our particular situation. I’m sure other people will say they turn to religion or God to cope. I can’t necessarily say that but I can say they I’ve tried to use the exile as a way to grow spiritually. I’ve grown much. Whatever hardships come our way, we humans are very good at adapting.