Over the holidays, I have had a lot of conversations with fellow Autism parents, family and friends that prompted me to take up the topic of speaking of Autism.
It can be an awkward thing to approach a parent that has a child on the spectrum and engage them on any subject remotely related to kids, parenting, etc. Those that don’t have special needs as a part of their life can feel like they do not fully understand the other parent’s world. Their compassion will go unstated because they fear saying the wrong thing or offending the other parent somehow. Here’s the thing though: I do not expect anyone asking me about our family or Jim to know the ins and outs of his case, his progress, or his prognosis. I do not expect people to understand every term that is part of the Autism vocabulary – and there’s a lot! I welcome people asking about Jim because I need them to support him and us as a family. Kids on the spectrum, like most kids I suppose, are very perceptive and pick up on things like that. They may not read some social cues correctly, but they can get a sense for someone’s disposition toward them – both positive and negative. They may not know what to say in response when you politely smile and greet them, but they recognize you as a friendly person and are more likely to at least smile or say hello the next time around.
I reached a point a long time ago where I realized that Autism was a permanent part of our world – that can take some time to really sink in – and became determined to not only advocate as strongly as I could for Jim but for all the kids out there on the spectrum and those with other special needs. I hope that some of my conversations with family and friends and other parents (and this blog) have helped foster understanding and support. It can get tough some days, and it is really scary when they are babies and toddlers and there is so much unknown. As they get older, maturity and progress give way to new challenges – the brain, after all, is always evolving. I’ve had my share of sleepless nights, tears, and angst for future. I want to encourage any parent reading this that is at a difficult spot with their journey to reach out to folks to talk about it, let people support you, look for resources to help, and understand that with the setbacks there will also be progress along the way.
We are in a bit of new territory as we have grown from toddlerhood into 1st grade. All the kids have become more mature, more aware, and friends and family with kids around the same ages have in some cases been reluctant to address Autism with them. When the kids are very young, I would agree that a conversation is not purposeful because they are truly too young to understand, but at older ages I cannot stress enough how important it is to foster knowledge and understanding about this condition with young kids. I know there is reticence in some cases because no one wants to have a conversation that acknowledges differences, but we are all different. It does not make us less. That’s not just a tagline; it’s very true. If folks do not have any knowledge about some of the things that come along with Autism, then they will completely misread a kid in a given situation. It has damaging implications for all involved but especially the kid on the spectrum who may already be struggling with social interaction.
By not being armed with knowledge, the child learns that people who do things differently, react differently, or have difficulties are somehow less, deficient and weak. They miss the opportunity to demonstrate compassion and being able to offer help and engage the child on the spectrum in a way that is beneficial to both kids, and even worse, they may just miss out on meeting their next great friend. Those kids will someday grow into adults, and you don’t want them going out into the world with a fish bowl mentality. It won’t be well-received, and it won’t serve them well. Talking with your kids about Autism should not translate into a pity party for those affected. Autism could happen to anyone, and each and every person impacted has their own specific case. As the saying goes, “If you’ve met one person with Autism, you’ve met one person with Autism.” As you learn about Autism Spectrum Disorder, you may look really closely at some of your own tendencies, and you may recognize some symptoms that perhaps have not manifested as strongly as those formally diagnosed on the spectrum (not kidding).
Many children struggle with different areas like reading or fine motor skills or attention span, or athletic ability. Kids on the spectrum just have a list of things that inhibit them in certain areas of their own to the point that daily life is difficult for them. The various therapies are about breaking that list down one by one. Being a part of both the typical world and the autism world, I am quite comfortable blowing the lid off the idea that anyone’s child has zero issues of any sort. Your ‘secret’ is safe with me. So I implore parents in the typical realm to have a conversation about Autism with your child particularly if they routinely encounter children on the spectrum (i.e. school). In our case, I think many of the kids at our school have some level of understanding, but I think that is because they have grown up around it from pre-K. It’s just part of their world. Even so, a top-level conversation about Autism would be good for these kids to arm them with a better understanding.
Every child has their set of gifts and kids on the spectrum are no different. I’m not just looking for the silver lining. I am truly wowed – like a lot of parents, I know – by all our kids on a near daily basis. This parenting thing is hard work, but man, the steps and growth along the way with them are priceless. Some people say, “You’re going to miss this.” in regards to all the craziness, and they are right. I already look back a little wistfully at their younger years while embracing the excitement of the now. Autism puts a special spin on it in that you learn to appreciate the intricacies of development that much more. The understanding of feelings, the grasping of context, the addition of words and then the complexity of language, the expression of love and care like a simple hug, getting when something is really funny, the ability to relax in a chair for a few minutes, the ability to read, the understanding of how a math problem is calculated, and on and on and on. All of these things are gifts to parents of kids on the spectrum that represent progress, but for me, this heightened recognition helps me to see it in both of my sons who are not on the spectrum. In my oldest, I notice the more refined conversation style, the honing of the sense of humor, the absolutely exploding imagination (the stories y’all!), the effort to discover who he wants to be, and the deepening of his relationship with both me and his Dad. In my youngest, I see more clearly the flashes of independence, the addition of words and language (receptive and expressive), the greater interaction with other people, the more interest in certain toys, the desire to sit down and color (What? A boy who wants to sit and color? There’s my artist!), and little specks of personality that are all his own. If having Autism as a part of our lives has given me a gift, that’s it: a special prism through which to see their many colors. They are many, and they are bright!
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