In this day and age, there are so many other things to focus and dwell on that it really made me shake my head hearing about a conversation several people I know have had recently in regards to the terms “autism family” or “autism mom/dad/sibling”. Some have mentioned it being one of the only times you will hear an individual’s diagnosis turned into a fiasco the whole family or parents claim. They went on to say it’s narcissistic and self centered. Those are some mighty big words and accusations coming from people who don’t walk in our shoes.
In all fairness, if autism wasn’t a factor in how I have to live our lives, I can see how to someone on the outside it may seem such. Yet, it’s very presumptuous to assume we claim our family member’s diagnosis. Let’s start with the big question ~ for what purpose? What will WE gain from it? It’s not cool. It’s not fun. And while I wouldn’t trade our lives for the world, there are some who would love to have a smidgen of normalcy instead of the far cry of appointments after appointments and long hours weighing EVERY single decision of every hour of every day. It goes so far as sometimes losing precious sleep wondering if we missed a trigger to a meltdown or if it could have been prevented. And tell me, who would want the scathing stares when your child can no longer function during an outing.
Let’s backtrack a second here. What is the definition of narcissist? Narcissist: noun 1. A person who is overly self-involved, and often vain and selfish. 2. Psychoanalysis. A person who suffers from narcissism, deriving erotic gratification from admiration of his or her own physical or mental attributes.
Wow. None of those attributes fit any person in most families I know dealing with an autistic individual, or us for that matter. Let me take those of you on the outside of our bubble into our world for a moment. Every little aspect of autism affects everyone in the household. Not as much as the individual diagnosed with it but takes every member living in the house and part of that family to learn how to cope, deal, interact, intercede, redirect, calm and socialize with that individual. Sometimes therapies involve every member.
Families are wholly committed to try and live life as calmly and “normally”. Everything is planned out. Every possible situation is thought through. Stories to prepare the autistic individual are used. And sometimes at the last minute you throw a hail Mary pass and pray that you are prepared for whatever comes your way.
Siblings give the most. They are often torn away from family functions of extended family situations because it is too much for the other individual. They give up things like sleepovers and birthday parties because it’s too hard for their sibling. Most of them don’t even complain because they find peace and solace in the comfort their sibling has.
Family vacations? What are they? Most of us aren’t lucky to get a family member or respite care to watch that individual so we can take some “me” or “us” time. Vacations as a whole are stressful. Not impossible. It’s just unrealistic in some cases.
There are the therapies and doctors appointments that we shuffle between. All the while, trying to play good soccer mom/dad to the siblings and feeling guilty like we are dropping the ball somewhere. We are usually the first one up and the last one to close our eyes at night. If we are lucky, getting a solid 2 hours uninterrupted sleep.
I haven’t even talked about the family discussions of autism that happen daily. We have conversations with our children daily. One will talk about her challenges and how she is struggling. We discuss perception versus reality. We discuss how social situations were viewed and handled and how they could have been different. We talk about living life with no limitations and pushing out of our comfort zone. Never giving up or giving in the negative speak.
The other child talks about concerns about a potential trigger situation. He goes on about asking permission to go to someone’s house for the weekend. He talks about the musical, the band trip, and forensics, how the sibling is doing in an activity, and work. We have serious conversations that cover a multitude of topics and I know he worries about his sister.
We make decisions based on so many criterions that I sometimes hate to call someone and say, “I’m just not sure. I think we are going to pass on this this time.” Yet, we do. Out of sanity.
You see autism may “run” our lives but we don’t let it stop us. Instead we OWN it. We are autism moms, autism dads, autism brothers and sisters and autism grandparents. Our way of living was told to me by someone I love that it’s a LIFESTYLE CHOICE. And you know at first I was upset but it’s true. In our house it’s either ALL IN or ALL OUT. In order for Emelie to feel safe and included, this is the lifestyle we choose. That’s the choice.
It’s not narcissistic. Let’s use an antonym for it instead when talking about these families: SACRIFICING.