To "Have Autism" or to "Be Autistic"; that is my question.

My son, Evan, was two years old when he received his diagnosis of Autism Spectrum Disorder. Since then, I have struggled with who to tell and how to say it. It always seems to stumble out of my mouth ungracefully. "My son has autism." "My son is autistic." "My son has…sensory issues." Or even "My son has autism but he's high functioning." What do these all mean? What do they mean to me? What do they mean to the person I am talking to?

Identifying and labeling things has brought me enjoyment and a sense of satisfaction in my adult life. I have been collecting rocks and crystals since 1998 and have a fairly extensive collection. It has brought me joy to learn their features, identify them and keep lists of their names and properties. I also am a bird lover and devour wildlife guides, always on the lookout for a new bird I haven't encountered before. I can tell you proudly that I am an INFJ personality type by Meyers-Briggs, and also an HSP (Highly Sensitive Person). Labels help me put life into order and into perspective. When we know what we're dealing with, we know how to approach it better, how to understand and appreciate its unique qualities. 

"They" say "we" are in a rush to slap labels on "our" kids. We are pigeon-holing them. We are limiting them. We are on a march to medicate them, to normalize them. I guess, on the one hand, I agree with "them". I agree especially that a label does not define the very complex and intricate beings that we are. 

On the other hand, a diagnosis gives understanding, a framework, a toolkit, a trail map. Knowing that Evan is on the autism spectrum gives me a community to learn from. Our kids are all so different, and yet many of our experiences are variations on a common theme. 

So, do I say, my son is autistic? Or my son has autism?

From my understanding, if one were to divide the autism community into two groups (which I don't even like the sound of to begin with) you would have those who feel autism can be treated and cured, verses those who take a neuro-diversity view: autistic people are the way they are and there is no need to try to "change" them, per se. Thus, to "have autism" sounds changeable, like having a cold. To be autistic sounds like a trait, like being extroverted. 

Which group do I fall into? I'm really not sure yet. To believe he can be cured is a bit like setting out on a quest to find the Holy Grail. But what would "cured" look like? We would be thankfully rid of most of the storms and left mostly with sunshine, I presume. But what what about our precious rainbows? Evan's "superpowers" of observation, humor, spirit, musicality, and the insights that seem to make him wise beyond his years? I want Evan to be fully himself and to be happy. I wouldn't want him to feel muted. I want him to reach his full potential but I don't want him to lose his bright colors in the process. 

For now, I think I will simply say that Evan is on the Autism Spectrum. I have my suspicions that more labels will come along to join this one, but only time will tell. We'll just take this journey one step at a time. 

Hello, World!

Evan was diagnosed with autism last fall. 

Since the diagnosis, I've questioned its accuracy. Service providers who were working with Evan also questioned the autism diagnosis. An independent observation-based evaluation questioned it. He has sensory processing difficulties, for sure, but for awhile we all thought that those issues were in isolation as Sensory Processing Disorder, not a part of autism, in his case. 

Maybe, if you've met Evan, you question this diagnosis, too. At times he seems like any other three-year old, and at other times, he seems a little quirky. But autistic, you might wonder?

Well, now I don't doubt it anymore. I know it's true. He doesn't meet all the criteria for classic autism, nor does he have Asperger's. But, he is on the spectrum. I was wrong. We were wrong.

Accepting that the diagnosis is correct doesn't mean being at peace with the diagnosis, however. I still cringe at his behavior in public. I get frustrated by how sleeping, eating, dressing, potty, car rides, getting ANYWHERE on time, are challenging. Not just sometimes. Like, every time. All of it. Resistance to everything. Melt downs at the slightest provocation, during which I have to get him to a safe area so he doesn't bang his head and injure himself. Automatic flush toilets and hand dryers terrify him. He will hardly ever look at a camera for pictures. He ignores directions most of the time. He either clings to me or runs away with mischevious laughter.  He suffers from night terror confusional arousals when sleep deprived, which is often because his ability to sense when his body and mind are tired is so dysregulated. He has fixations and compulsions. Some are long-standing. Some come and go, lasting a few weeks or maybe a few months. 

It's not all bad. Really, it isn't. I try to remind myself of that on the really hard days. His perceptions, his perspectives, his sweetness, his sense of humor, his musicality… all the funny things he says and does. With his intense storms also come the most beautiful rainbows. 

Mothering this little boy is exhausting. It also seems to require more patience than I possess by the end of the day. At the end of the day, I wonder how I can possibly handle another day of looking down every water drainage grate, touching every flag pole, him unraveling the toilet paper every time we're in the bathroom, having to pin him down to dress him or put him in his car seat, singing every soothing or entertaining song I know to try to stop his crying, of having to grip his wrist to keep him from running into traffic because he saw a stick he likes in the road… sure, you may be thinking that this is just kid stuff. But it is every day. It permeates our life together. The intensity and frequency take the usual young child challenges and magnify them, pushing everything else to the edges of our awareness. It's a fight for survival. One foot in front of the other, I go. 

Do you know a parent of a child with special needs? Please don't judge, or jump to conclusions. Please hold them, their child(ren) and extended family in your heart. Maybe offer a hug. Maybe ask if you can help. They say it takes a whole village to raise our children. It couldn't be more true for Evan. Ever since he was a baby, my mother quipped that most children need a caregiver; Evan needs a staff. Not much has changed in that respect. Raising Evan has made me much more sensitive to the challenges most parents face. I don't jump to conclusions any more. Not about a child I see waiting in line for an amusement park ride, nor about my own son. Disabilties can be invisible. Compassion, patience and a willingness to let go of preconceived notions are my companions now.