On the fringe: autism and family gatherings

Child covering ears

Family gatherings are noisey. There are a myriad of voices that range in pitch and volume. There is that one person who laughs so loud that tears well in my eyes. Boys yell and bang on the piano. Someone is taking a photo with flash. Greeting people is part of being polite, even when you are already in sensory overload. Perfumes and colognes combine and foods from the kitchen circulate. Men yell at the football game and women laugh at something funny. 

All this is taken in at the door. There is a long way to wade through before I can put my coat in a quiet bedroom. I have to remember to smile and say "hello" as well as accept hugs.

There are a few cousins who cannot stand my presence, though, at age 5, I don't know what I could have possibly done to upset them.

I am asked, "Why do you plug your ears?" I am told repeatedly that nobody wants me here. I am the only one who isn't part of a group. Sometimes, I get bullied. A parent will stand up for me only to clash with the parent of the cousin who pushed and threatened me.

I escape into walk-in closets, barring the door. I stand on the fringe in doorways and hallways. I occupy the empty rooms, sometimes in the dark in tears. I wonder what is so bad and inconvenient about me.

I have a cousin with ADHD and he does quirky things. Everyone laughs and encourages his behavior.

I tell on my cousins as they throw towels at my grandma's cat as she is trapped on an island counter in the laundry room. Both the cat and I still get whatever they can throw at us.

Now I'm a teen-ager. I get older and my meltdowns are violent. I'm still undiagnosed. I am screamed at and told I will "get my ass kicked" if I don't stop screaming.

I am told to "get a life" or judged a "retard". Somehow I find myself giving thanks in my head that I come from a 'normal' (extended) family and at least I don't get bullied by my (extended) family.

Except I do get bullied and excluded.

I reexamine my eleven year old brain that gave thanks alone in the hallway and find that I only relate bullying to school. I am 37 and now know that bullying extends outside of school.

My parents get judged and the sentence is pronounced: they have a spoiled brat for a daughter. If only they would use a little discipline. 

I will clarify that each gathering wasn't a medieval torture event. What I am describing is a mosh-up of many family gatherings over many years. I was shown love by my grandparents and one aunt. 

Even the bully cousins were nice once and awhile-especially when nobody was looking.

I am convinced that there is a double standard when it comes to the erratic behavior of girls and boys.

I finally did retire from going to family events in 1998 with Christmas being my last show. The disrespect and isolation were too much along with the worsening of my autism symptoms in my mid teens.

I know I am someone on the fringe. I don't find my voice with either the neurotypical or autistic crowd.

I'm too much this way and not enough that.

God allowed me to be born the way I am, and if it is fine with Him, that pretty much vetoes the discontent of the dissenters.

Some advice for autistic people and parents of autistic kids attending family events: 
Bring earplugs or earmuffs to family events. Bring something to do such as coloring books or an iPad with games and videos. This shouldn't replace visiting with family, but serve as sensory retreats during the visit. If you are a parent, introduce your child and talk to family about why they are different. Tell them this doesn't make them bad. Stick up for them when they are little so that they will have the self esteem to do so for themselves when they are older. Stress strengths. Don't force someone to stay for hours on end if they can't handle it, have an exit plan.

Here is a source to buy sensory friendly toys and stim stuff: https://www.nationalautismresources.com/family-members-featured-products/

Here is a link to a Facebook page from 2011. Though it's old, the tips are timely. https://www.facebook.com/notes/childrens-national-medical-center/holiday-survival-guide-from-our-center-for-autism-spectrum-disorders/10150539604688792

How to create a sensory friendly dinner: http://www.carolinapeds.com/2013/11/how-to-have-a-sensory-friendly-holiday-dinner/

As I've mentioned, I was loved. Those who cared about me did the best they could in a time when a diagnosis of Asperger's either didn't exist or was not on anyone's radar outside of neurological health circles. I hold no grudges.

Me with my grandpa, 1998

Me with my parents 1989