"You can’t sit with us!"

An unexpected confrontation with the great divide among the autism community & what it taught me.

I believe that there is still a lot of confusion around autism (ASD) in general and that many still suffer from a great misunderstanding as to what an actual autism diagnosis means. To an extent, this confusion is rightly founded.

How can that be? Simple!

Autism is a vast chameleon. Sometimes it chooses to boldly announce itself in the way of noticeable body mannerisms or physical characteristics for instance. Yet other times, it quietly cloaks itself inside of quirks, abilities, and struggles of its chosen.

Eons of space rest in between the extreme ends of the spectrum.

What do you do when you are so far to one side, that it almost feels like an inadvertent slight at those with more noticeable difficulties to claim you rightly diagnosed quirks? Too quirky to successfully learn in a typical school setting and to thrive in those environments, yet to “normal” ( I hate that term in regards to humans) to obtain the support you need from designated extra-needs classrooms or foundations because they would only set you back.

It’s an odd space to be in… I can say that much for certain. Having a child on the spectrum, yet so far off to one particular side that they can still melt into the crowd while they struggle quietly.

It just so happens that my son falls under that “cloaked” end of the spectrum. His struggles and abilities don’t loudly announce themself upon his arrival into a space. Conversely, they wait quietly, revealing themselves in quirky spurts that increase in length and notability over time.

With years of various therapies at his benefit, it is with grateful hearts that we are able to watch him, work to find this own in the world.

*If you’re new here, let me stress that not once did we pursue therapy in any capacity to “fix” anything about my son (or ourselves- I’m a huge advocate of therapy in all of it’s glorious arsenal of benefits). He isn’t a broken. He is an individual who struggles, as you do, in the unique challenges that are sprinkled into his life in eccentric ways.

My thought on therapy, opposed to many who see it as a last resort to ‘fix the broken,’ has always been this:

If you can do something to make your own life easier, to aid it in flowing more smoothy, to increase your level of daily joy while decreasing stress, and simply make your quality more enjoyable, then why in the world wouldn’t you?!

So for us, therapy is a gift.

Wyatt worked for years to strengthen his personal tool belt by equipping it with an arsenal of tactics, and an ever growing self-understanding, to provide himself with the foundation of knowledge that he both needs - and deserves - as he embarks on his very own unique journey in this world.

But I didn’t come here today to talk about therapy.

At least, not today.

I came to share an experience that I had that opened my eyes to the startling disconnect within the extra-needs realm. There is a huge divergence among the autism community. Maybe you already know that, but for me, it was quite the surprise.

Finding ourselves outside the “norm,” we have always struggled to find a close knit group of friends who were also... understanding. We have loads of wonderful friends that I adore but although we love and support each other in many ways, none of them quite understand our unique walk.

It was for that reason, for a season, I was absolutely desperate to find someone who understood.

Someone who could commiserate, more or less, and just be that understanding “Oh yes, us too!” That I desperately longed to hear. That I felt would be so supportive to have another mom friend who understood the difficult dance we were swaying to.

There was a point (pre-COVID) where we were regularly attending church.

During that time, I also began to follow the church on its social platforms to further connection. Somehow because of this, I was reached out to by a fellow church member who had seen my profile and who also had a child on the spectrum. She virtually introduced herself to me and we discovered that our kids were even about the same age. I couldn’t believe it! I can’t even begin to express how giddy I was to feel like I was finally about to make a connection in that big church in general, but mainly with someone who understood first hand our different path.

It took a few tries after meeting virtually for us to finally connect in person at church (someone is always sick when there are kids involved!), but when we finally did, well, that is a meeting that I’ll never forget.

*A couple of fun old pictures- two of us actually at that church- to enjoy along with the story.

Picture it:

She ran over. We exchanged smiles and warm hellos while I was happily introduced to her in real life. I met her daughter: she was quirky, precious, and wonderful. I was so excited to meet them and for them to meet Wyatt too. He’d run off somewhere with his sister so it took me a few minutes to get him called back over to me. Eventually, he joined us and as I finally introduced them, I simultaneously saw and felt the shift.

Upon meeting Wyatt, the other mother had something written all over her face that was as plain as day: JUDGEMENT.

She didn’t even have the courtesy to try to hide it (we were in church no less where she was actively involved in 'loving and serving' which makes this even more comical now looking back). I watched her, most obviously, look my son up and down and decide in that very moment that we weren’t worthy of their friendship (or in her view, a claim to his diagnosis either), and subsequently, she turned her back on us.

There are really so many pieces of this that I could eagerly pick apart after both years of time passing and deep therapy work. But the fact remains:

Because my son was on the opposite end of the spectrum, and our struggles were not the same, we were cast aside.

I can’t even type that without lightly shaking my head in disbelief even to this day. The very community that we are a part of, that I so strongly care(d) for, and advocate(d) for, shut us out.

Ready for the real kicker?

During that time, I still had quite a way to go on my own healing journey. So, although I knew exactly what she was thinking (you didn’t have to be an empath to read that woman’s face), I wasn’t going to walk away without trying to make her love us and be friends with us anyway.

God Bless.

I tried repeatedly after that meeting to schedule coffee meet ups and field trips to no avail. Her mind was made up and she wanted nothing to do with us. At the time, it hurt. It really did because I was so eager to find a community that understood us and accepted us *without judgement*. Yes, I can clearly see the glaring dramatic irony- now.

Thankfully, I now understand and am so grateful for how all of the “no’s” and closed doors throughout my life have always been for my greater good.

I look back and wonder why I continued to try so hard to make that woman accept us and am just flooded with.... gratitude. I'm filled with gratitude that God and the Universe protected me from things (and people) that were never intended for me.

I was so desperately lost on my path to perfection that I would have been friends with a person like that just to prove to myself that I was good enough to earn her approval…

What in the actual fuck.

Again, I can’t stress enough what a beautiful gift it was throwing myself into years of deep and messy inner-work to pull me out of that detrimental perfection-driven spiral and into the beautiful truth of: what is really is meant for me.

This or something better.

For years, I tried to fight for “this” thinking that I had to have the thing I wanted to be happy, never realizing what was truly intended for me was so, so, much better.

I hesitated to share this story because I wasn’t sure if I could accurately portray what I went through and how I felt during that season of my life without sounding like I was simultaneously casting my own judgement on that woman. I feel though that someone has something to gain by my sharing this experience, and what I learned, even if I fail to adequately portray the events in a non-judgmental way. So, I share this story anyway with that hope in mind…

If you’re looking for “your people” and feel so desperate to find them that you’d do what I did- continue to chase down a relationship with a person who is most clearly not in your best interest - stop right now. Sharing a diagnosis label may seem like the important piece of the puzzle that you need but it's not.

You’ll look, desperately seeking, yet always come up empty handed because what you are truly looking for isn’t out there- it never was and never will be.

What you're seeking isn't someone else's friendship or approval. It's something buried deep inside of you.

Tucked back into the darkest point of a shadow... so deeply buried that you’ve long forgotten it's there.

Grab that beast by the horns, and drag it into the light so that you can truly look at it, call it for what it is, and work through it- until you dare to do that dirty inner-work you’ll continue to accept less than you deserve in every aspect of your life and will never feel aligned or fulfilled.

That is what this profound experience with the autism community taught me.

I also think it might be good, or interesting at least, to open up a dialog on the divergence within the extra-needs/autism community.

Perhaps the vast umbrella they’ve cast us all under wasn’t helpful helpful after all. It is my understanding that it was restructured in this umbrella format to make it easier for those in the autism community to access all of the therapies and tools they would find beneficial. But, it appears that this board structure has in turn created (or amplified) a huge divergence within the autism community as a whole.

If you’ve suffered similar situations on your own journey take heart, you’re not alone.

Continue to rise. Become the light that you were once seeking and you’ll naturally attract those of similar vibration.

And always, always, remain grateful for those closed doors. I promise they redirect your path in the most beautiful ways.

xo

carrie