The Endless Winter of Autism: Finally Finding A Diagnosis

The Endless Winter of Autism finally resulted in finding a diagnosis. Please celebrate with us! We couldn’t have made this journey without God, and you, our friends and supporters.

This post has been simmering on the back burner of this blog for awhile.

I still don’t really know where to take it,

but some of the thoughts could be helpful. Cathartic for us as a family, perhaps.

2022 bombarded us with a lot of mind/action changes

then blind reaching for direction

hitting crushing overwhelming days of complete discouragement.

Words hardly convey what actually happened

because we don’t know the medical speak to describe it.

And maybe there is no explaining autism ups and downs

the roller coaster of unnamed emotions and loose triggers.

In retrospect, Kim felt unheard, ignored and confused.

It was

The Endless Winter of Autism

Turning to support groups brings some relief.

Hearing people on the spectrum share their frustrations, and reveal the wide range of reactions between individuals.

Perhaps it’s the place they are in life or the level of neuro-diversity.

It is a spectrum, after all, and just as NTs (neuro-typicals) react in vastly different ways to circumstances, so, too, do NDs (neuro-diverse).

This is a typical ASD (Autism Spectrum Disorder) forum conversation:

“If you are talking to a person with Autism and they mention how it affects their life, can you please NOT say “I do that” or “We are all a bit like that aren’t we?” or “That can be anybody”. They might mean well but for me it is wrong, it’s patronizing, it’s false and it is offensive. They don’t really know what it is like to have it unless they live with it.“

“IT IS USELESS to take offence at a comment that is intended to convey empathy and compassion. Actually, it’s WORSE than useless. It undermines your relationships and interferes with your own emotional state and cognitive abilities. We’re all free to respond how we please, but personally, I’ve decided that taking offence at an intended expression of empathy is an absolute waste of my time and emotional energy.”

“A [NT] person I know is on an extreme end of understanding social cues, challenge is they are fully opposite most ASD people. Point here is everyone has a range of experiences and empathizing with someone with ASD isn’t negative, minimizing or disrespectful, rather it is just sharing their own experience.“

“Every single person in this world is different and unique. Maybe that is what we should be concentrating on!“

“So, what i am hearing, or reading, and understanding, is that you’re telling “NT’s” to not do to you, what you are literally doing to them? Huh…..ok. Makes sense. Seems to me like this is a double-edged sword. But just my IMO. A large portion of this group is ranting and raving about not being heard, receiving apathy and now there’s [complaining] about “NT’s” being empathetic? You can’t beg for inclusion and decide to demand to throw everything away that’s being offered.“

“Many of NT conversation are « small talk ». I don’t enjoy small talk… I don’t think the person who says that is doing that to diminish your experience or emotions/struggles. You could also ask in an open mind « why are you saying this really? », « really? You do that? How often you would say? » or could also say « I so much appreciate when people say these kind of things but sometimes I just simply need an ear toward my own struggle ». You could be surprised pleasantly by their reaction and answers who knows?!”

“What is small talk and what is big talk then? Every conversation starts with small talk but glides over to more important stuff. I mean no one say ” hey it’s raining today, goodbye” But it can start with it is raining today and then if you give them the chance it will glide into something else or just change the subject if you like.“

And then someone sums it up:

“You’re best, safest answer is to simply say, “Thank you. I didn’t know that.” Anything beyond that and you’ve got a 50/50 chance of offending SOMEONE. That said, you might put the conversational ball back in their court with something like: – Would you like to tell me more? – Is there anything I can do to help you feel more comfortable?“

Back to Kim:

In our journey to a firm, take-it-to-the-bank diagnosis, we all had mixed emotions.

But no one more so than Kim herself.

She reached a point where she couldn’t even have a conversation with any coherent description of how she really felt. The neurons were firing at machine gun speed, with no rest or relief. And how hard she tried to find rest and relief!

I’ve told her all her life she’s the strongest person I know, the way she keeps on fighting for mental health and social success.

Yet this winter she almost gave up. This winter the hurricane force of anxiety almost did her in.

The constant barrage of doctors / social services / lawyers / therapists / supporters / family / diagnostic testers became a nemesis.

Until the Day of Diagnosis

On Thursday, September 22, we had a video call with the final doctor in the chain. The ultimate, most qualified person with the right letters behind her name spoke with us, and somehow, in the course of an hour’s conversation, gave us renewed hope.

The diagnosis we’ve suspected was finally, undeniably verified.

Some of the other troubling mental health diagnoses were questioned.

Please join us in our time of Thanksgiving.

I asked Kim how she felt about finally having a diagnosis.

She didn’t know how to answer in words.

Her actions say a mighty load swept away, she has renewed confidence and enthusiasm and even some relief from anxiety.

It’s truly a time for celebration.

Yesterday she and I went to “her” Spencer’s Place and bought Pumpkin Spice lattes, then stopped at our local family bakery, Boyers, for cinnamon rolls.

Then she left her old mom at home to recover from all the celebrating while she went to her favorite shopping stops.

Yayyyyy!!!! for all of us!!!!

And lest I forget,