Adult Autism & ADHD
I was going to title this post as per usual, Homestead Diary February 28 2022, but today’s post is more than a daily diary post. Today’s post is not about the homestead.
I’ve shared many times about our middle child, Elsa, who has Aspergers/Autism.
The road that led us to finding out that Elsa has autism was a long windy road over the course of years full of side trips and rabbit trails and many bumps along the way. I won’t go any further into that, because this post isn’t about Elsa, it’s about another member of our family who has autism.
This post is about me.
I figured out years ago, some years after Elsa’s diagnosis, that I too likely had autism.
Unfortunately, like adhd, autism is typically diagnosed in young boys. Girls, who grow up to become women, often don’t get diagnosed until much later in life. If they get diagnosed at all.
This is my story.
Growing up, no one ever suspected autism. No one even really heard of autism. I was born in 1971, a long time ago, over 51 years! Times have changed, thankfully. We know much more now, but we still don’t know enough, and that is why I have chosen to finally share my story. Elsa has always been happy to allow me to share her story, and I’ve been grateful for that, but I’ve also felt guilty each time I shared her story without sharing mine. I always made excuses as to why I shouldn’t share about me. I have a business to run, what would people think? Would they automatically have misunderstandings about me because they would just see AUTISM and no longer the business woman? Would I lose customers? Would I lose income? Would they look at me differently? Would customers shy away from purchasing from me? Would people believe me? What would friends and family think? Would I lose friends, would family disown me?
I asked Elsa several years ago if she thought I should be as open about having autism as she is. Her response, “No, why bother, look how people treat me.”
I knew when she said this to me, that it was actually MORE of a reason that I needed to share my secret, BUT I also knew she was right. She has put up with a lot. A lot of misunderstandings. A lot of negativity. A lot of comments… oh the comments she’s received, and that I’ve received behind her back and even right in front of her, about her being autistic, through the ignorance of people in their spoken words.
It’s been hurtful. It’s been difficult to hear and watch and to have to constantly try to explain to others.
Try to explain to someone that they aren’t actually understanding, when they truly believe they understand all about autism perfectly well…
There’s been many times I’ve felt like whacking my head on a brick wall.
When people are so sure they know it all, there’s no telling them they don’t seem to really know anything, actually. They make their assumptions about autism, and the person who has autism, and to be quite blunt and honest, at that point they typically just walk away. If not physically, you can just about see them walking away mentally. They are no long there in the conversation to converse or to learn… because they already know it all. They’ve made up their mind about what autism is and what it looks like and to them it does NOT look like Elsa, and it most certainly does NOT look like me.
A 51 year old successful business women who has been married for over 30 years, raised five children and even homeschooled them all right through to graduation.
Nope, that’s not what autism looks like. So how could I be autistic?
But I am. I also have ADHD.
It was at the appointment where I was diagnosed with adhd that I told the dr that I had not been open about being autistic except with my husband and children. I told him I wasn’t sure how others would react and that I didn’t know if I was able to deal with it. He told me that I was probably right not to tell others because most people don’t understand autism.
Hearing him say that actually made me realize exactly why I DO need to tell others that I have autism.
I couldn’t stop thinking about how if I don’t share, this cycle of misunderstanding is never going to end. Not that misunderstanding autism will suddenly end with me sharing, but… maybe it could end some misunderstandings in one or two people who know me?
Maybe those one or two people will then help end the misunderstanding of autism for one or two more people? Maybe another adult with autism who’s been nervous to share will read my post and in turn decide they want to share too. Maybe then one or two people they know will better understand… and so on.
If I desire for autism to be better understood, doesn’t it need to start right here, with me?
And that is truly my desire.
To help put an end to misunderstandings and misconceptions of what autism ‘looks’ like.
Because Autism looks like me, it looks like Elsa, it most likely looks like someone else you know too. Maybe even a friend, a family member, a co-worker or a casual acquaintance.
If you’d like to know more about adults and autism or you have autism and you want to know better how to share about it, here’s an article about sharing an adult diagnosis:
I will likely share more soon, but for now, this post was a very big step that I have been putting off for a very very long time. It feels good to have finally written it. I have no idea how people will react, if people will change their minds about me, or my business, or about who I am as a person. I am finally at a place in my life where I’m ok with the not knowing. I guess I’m finally at a place where I am completely ok with me.
So many times in my life I have not shared my stories, I would always think, “This isn’t just MY story to share, there are other people involved here.”
I read a quote that said something like,
“If we never share our story, all we will ever be is a part of someone else’s.”
I have my own story to tell. I don’t want to just be a part of someone else’s story.
And with that, I’m adding one of my favourite winter photos from the homestead, hitting the “publish” button and letting go of worrying about what will be once people know this part of my story.