“Happy families are all alike; every unhappy family is unhappy in its own way.” ~Leo Tolstoy
Want to tick off a Spectrum Parent? Tell them the hated phrase, “but he doesn’t look autistic!”
What does autism look like? For our family it is: sleepless nights, tantrums without warning, high pitched talking and giggling, the need to line up toys throughout the house, inability to understand correct social interactions, repeating words and phrases, walking on tip toes, wanting to be near other children and play with them but then playing alone, lack of empathy, no fear of danger to self or others, inability to sit still and concentrate, sounds, sights, smells, touches, and some places are over stimulating to him and can set off meltdowns, behind his peers academically, emotionally, socially, and physically, his level of comprehension is that of a preschooler, aversion to certain foods, obsessively plays with only certain types of toys, does not play with toys correctly, refuses to potty train, aggressive behaviors toward others when things are not the way he feels they should be, seems to be “deaf” when called by name or told/asked to do something, takes long periods of time to calm once upset, multiple tantrums on a bad day, meltdowns that can last an hour or longer, routines have to be followed and if routine is off it can set him off for days or weeks. This is just some of the things that are a part of our world with autism with our son, Cameron.
Autism parents are told on multiple occasions “I don’t know how you do it!” Yeah, well we don’t either; we just do what we have to do because there is no other option. Our children cannot change who they are and that is part of autism. We can make sure they get the therapies they need to teach them coping skills, we can take them to doctors to make sure everything medically that can be done is being done, we can daily accommodate their needs to lessen the stresses that the world places on them. We cannot however cure them from their diagnosis. We can help them learn to manage their autism as they get older so that it does not manage them, but we cannot cure our children of this medical diagnosis.
When a child is diagnosed as autistic, I think all parents go through a grieving process. We grieve for the life we imagined for them, we grieve for the hardships they will endure being different in a world that has really truly not learned to accept everyone who is unique, we grieve for the loss of a normal childhood for them and for us as parents who hoped to enjoy all those momentous milestones with them. Once we get over our grieving process though most parents do one of two things. They either try to hide their children so no one knows they are different, pretending that the autism does not exist and will eventually go away. These parents act as though autism is something they should be afraid of, that it is a condition they caused their child, that maybe their child is being punished for something they did, or maybe even some (I hope not) resent their child and wish they did not have to deal with them. Then there are the other parents. The proud (again I hope) majority! We ban together to spread awareness, guard our children like lions and lionesses, seek out therapies and specialists to help us help our children, incorporate therapies into our home life, and pretty much turn ourselves inside out daily for the benefit of our children only to proceed to do so again the next day and every day after that.
Autism looks different in every child I have met. No two cases of autism are the same. There is no set way for autistic children to act. Each child has their own place on the spectrum. Think of it like a fingerprint, even twins have their own prints to differentiate them. Autistic children do not look a certain way; there are no defining physical characteristics. Happy families may all be alike, but autistic families are all unique in their own way.