My Struggle With Autism

” What was I created to become?” That has been on my mind a great deal lately. At 60, I’m still trying to figure out who that is and how I fit into the world. Plowing through life following the crowd chasing children and grandchildren has caused me to fall down physically and mentally time after time leaving me unable to function for days. If I can’t navigate normal by now, I never will. At 60, I’m not resilient like I was. My body and mind have ground to a halt. I’ve assessed the damage. Recovery will take effort. I’m realizing I’ve wasted a great deal of time traveling down well worn paths. I need to find my own narrow, winding trail. I can’t afford mentally, physically, or financially the one I’m on.

I can’t be that grandma that sits in gymnasiums cheering on grandchildren night after night. I’m barely holding it together during one game and then I have to recover. Occasionally, the excessive stimulus requires renewing my adrenaline supply, sleep, and always followed by a long, quiet period. I will do well to attend 1, maybe 2, and rarely three events for each of the eight grandchildren. I refuse to feel guilty any longer. I can be that grandma that bakes cookies, teaches them about the world of nature, the playful, thoughtful one. The earthy grandma.


So I assess each thing I do and think, “Does it bring me peaceful joy?” Do I have to waste time in recovery. I’m not talking about rest where I can knit, read, or sew like I use to. Now I simply sit trying to hold it together or build myself up to endure the next event.

So who is this real me? Who is this grandma, mom, wife, and sister? I’ve hidden away my autism so deeply under layer after layer of camouflage until I’m drowning being something I’m not. Kirk and I have been married 40 years and I’m just now beginning to really let my husband in to see me. The me I was afraid he’d run from. He’s now watching videos about high functioning adults and asking, “Is this what it is really like?” The me I’m discovering under all the years of disguises. Though not the me that others remember as a child. I guess I was a fright. I’m finding anger buried in the time I’ve wasted. I want the peaceful joy of being myself. The real me, but a nice me.

At our granddaughter’s birthday, I quit pretending and found a few quiet moments with our three year old who was having a hard time of her own. I kept to the far outer reaches of the circle when she opened her presents and I slipped away often for quiet moments like when they hit the pinata or played pin the horn on the unicorn. As I walked across the entry laminate flooring, I burst into a few Charleston steps releasing my joy of simply being a grandma and watching these beautiful treasures grow. I was caught by our grandson’s teen-age friend. “Wow!, could you teach me that?”, which began an impromptu dance lesson from which I learned this 1920’s hit is now part of a new-age dance step. That was fun!


I’ve been told many, many times, that I am far different than anyone else mentally and physically. As our daughter fights for the autistic rights of our ten year old granddaughter in school as she degenerates rapidly, mentally and physically; she learned from an advocate that when you meet one autistic person, you’ve met one autistic person. We are each unique. With  autistic you see more, experience more, and feel FAR more than the average, overflowing our sensory capacities to the point we are sure we will explode. We do explode. But mostly, we hold on tight, really, really tight to keep it all in until we shut down because we just can’t take any more in. We aren’t allowed by society to let it out. To dance with abandon, sing or talk at the top of our voices, or throw things when we are sure we will burst into a million pieces. So we hide. We pretend normal.

But we aren’t!!!

We are different. Not wrong or right. Just different.

I’m tired of just surviving or watching my adrenals, thyroid, and other organs begin to fail under the stress. So I’m Marie Condo –ing and thinking, “Does this bring me joy?” I’m watching Skandish on You Tube and her simplifying to create a home that best fits her family’s budget and style. A touch of which is my own. Maybe it’s my Scandinavian heritage. Though my particular Swedish grandmother I was close to loved to crochet doll covers for spare toilet paper. Remember those creepy things? We have eliminated most of our foo, foo surfaces and that brings me joy and less cleaning.


I want less dependency than Skandish but I too want more simplicity.  The details of which I’m working out. I- like her, want to live within our means far better than now. It will have to be as our retirement is slim, being as we’ve chosen to help more and save less. I’m going to need your help. Herbal infusions bring me joy and make me feel better too. They need to start being mainly from what we grow. I need ideas.

I’m thinking about my clothes, my everything. Skandish and her kids look to have 9 good quality shirts each but really who needs more. Wear those out and replenish. But what is MY style? The one that empowers me, and comforts me, and suites me. Right now nearly all of my clothes are mismatched rags. Few bring me joy. With a small wardrobe, I will need aprons to save them. Two for the barnyard and two for the house. I often end up out in the barnyard with one on anyway. My grandmother’s of old did just that for a good reason – to save their clothes, so I will too. I have huge stacks of fabric. I love to sew and I need clothes. My style and body type are hard to match and my favorite sweater is ONE I made so why don’t I do what brings me joy and make a few more.

Skandish has made cloth gift bags to reuse, a good place for some of my fabric stash. I don’t like to wrap presents anyway and this would mean far fewer to do. Now for the shopping of presents. It is a budget buster and with 8 grandkids, four kids, and a few more presents needed here and there. It is overwhelming and over stimulating. Ideas?

As I’m de-clutter the kitchen and pantry; painting when the weather permits; and making a quilt out of old wool, suit coats, to cover the back of my grandpa’s rocking chair that I will be spending time in reading instead of hiding in the bathroom from the world; I’m contemplating about who am I?

  •  What did the Lord have in mind when he created me? He placed me here on earth for a purpose. It was no mistake making me autistic. He gave me a large measure of talents to use.
  • What did he have in mind for them?
  • What kind of mother, grandmother, sister can I be – should I be?
  • How can I contribute to the betterment of the world in my own special way?

Obviously, I can’t run with the pack. I don’t want to. Even though I don’t fit in, I like who I am. I like being autistic. It is truly enriching seeing so much more. I find God’s natural world entrancing. So as I pull together my crumpled life, I will be turning to you. I need you to help me reason through the haze. To see other images not common in the world. Maybe I need to be more like those that were – not those that are. I wonder if it has to do with balancing the world once more, this who I am? I, playing my own small part by example. Autistic people have a hard time seeing themselves. Help me! Help me find who I am by telling me who you see.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s