Sunday, January 21, 2018

"Are you really....?" Referral Links and My Perceptions of my Church's Opinion on Aspergers

I'm going to do a bit of referring today. This means you might have to do a bit more reading to fully understand what I'm saying. But I hope that you find it worth the extra reading.

My Response to "You're Not Really Autistic, Are You?" 

I'm Ever So Sorry. I Really DON'T Look Autistic.

I find these to be extremely true for me. I have had plenty of people who think they are being kind by saying that I dont "seem" autistic. Listen, just because you seem rude right now doesn't make you a rude person by nature. That's the nice way of saying it. But seriously, none of us "seem" like our struggles are that bad to the normal person we know.

It also feels like a rejection of who I truly am. Yes, I "look" just like you! I pump my own gas! I go grocery shopping! Just like in that celebrity magazine where they say the celebs are just like us. Autistic people are just like you! Except our heads work differently. The stuff you can't see. Unless its "Silence of the Lambs" or something. (No, I've not watched it, I've only heard about it.) But even then there's nothing to see.

Which leads me to my church. I don't know about yours (if you have one), but I have noticed something a little disturbing within the medical/mental health professionals that are connected to my church or its publications. One even went so far as to straight up say that the people who would be considered "high functioning" (another label that I HATE to use) aren't really autistic at all, according to him. So basically, the idea is that people who are able to "look normal" have some quirks and differences, but they're just like everyone else with their own quirks and differences. Completely discounting the fact that we are still distinctly different than people in ways that have perfectly been explained under the umbrella of Aspergers. Until recently, it was a "professionally valid" diagnosis. But even at the time when I was diagnosed, it was beginning to change. They said it was going to just now be labeled under the autism spectrum. What I'm actually seeing is that now the people who would have been Aspies are being treated as if they weren't at all.

What of that? I tend to run on the "higher end" of diagnosis spectrum. What would it have looked like if my diagnosis had come back no? Honestly, I wouldn't have even believed them and chalked it up to one more thing that I know more than my medical professional.

This wouldn't be the first time or subject that I knew better of, and it probably won't be the last. I often still flirt with the 5 year obsession with tongue ties and the other oral issues they cause and are related to, something that almost every doctor won't recognize, won't diagnose, and won't treat. The ones that do don't take insurance, IF you can get insurance to cover the procedure anyway because, as with doctors, they won't recognize the issue as a medical issue that needs treating. Private insurance, it seems, isn't as picky, so some people still get lucky and get it covered. Beyond the procedure is the therapies that are pretty much required to help change the muscle memories, especially the older a person treated is - and this is something many adults have as well and can greatly benefit from having treated. It's just a huge subject and I've done a great deal of reading from both other people who have had theirs or their children's treated, to medical professionals who actually treat and try to train others to treat, and even a few therapists who deal with oral issues and retraining. Anyway, you can tell, I get rather obsessed.

So what happens to those people who, like me, are Aspies, but get told no to Autism Spectrum? There are so many undiagnosed adults out there. I'm sure many of them are doing just fine and won't seek or need a diagnosis. Still many of them are out there having so many struggles and being misdiagnosed as other things. In some cases, the effects of these misdiagnosis, horrible things happen - I know one friend who was not allowed full custody of her children because of her past history with multiple diagnosis of mental health issues (and a lying, abusive, narcissistic ex). All things that were actually Aspergers, but was misdiagnosed by uninformed doctors.

But back to my personal thing...

Do I expect too much from them because they are Christian? Or because they are the same church as me? I think maybe that's what I've done. Maybe I expect more in general. Maybe I shouldn't do that.

But really, where do they get these ideas? Ignoring the true to life experience of so many of us, and even ignoring the actual diagnosis by other professionals? I don't know.

So then why do my differences and quirks line up identically with so many other people, so many other women in particular? If "we are all different and quirky yet still normal", would you really find such a large group of people who finally found an "explanation" for their unique identity being so alike in so many ways? And what about those people who now "don't fit" the full ASD diagnosis, but are still Aspies? Argh. 

Why High Functioning Autism Is So Challenging

Why is it so challenging? In addition to the list of things at that link, I would say that the most difficult thing about having "high functioning" autism is that it isn't high functioning at all. You can have non verbal, physically disabled/unabled people who have vibrant and intellegent minds with little to know problems with executive functioning or whatnot. Yet too you can have verbal, brilliant people who cannot handle a simple change in routine or schedule. To say that those experiences are invalid, or don't exist, or don't allow for a person to be diagnosed Aspie is simply wrong.

The person who ran my Autism testing didn't necessarily believe me either. She said I was "too verbal" and "made eye contact" and I've had other professionals tell me I was "too emotionally accessible".  Until she got to the specific autism parts of the test, and she was like "oh, there it is!". Even she couldn't deny what she saw once she got into the right parts of the test.

The thing is, especially as a female, we study, and we learn what the rules are. Just because we can perform the rules during an appointment doesn't mean that the struggle to do those things isn't there. They also don't see the exhaustion from "being normal" that comes after the appointment.
I mean, isn't the "rule" about talking to a counselor that you share your feelings? So, when I talk to a medical professional, whether a specifically mental health or just general about my feelings, the rule is you talk about them. It doesn't come organically, I have to plan for it, think about it in advance, almost "script" myself as to what I'm going to say. Often times my inner "script" doesn't include the variety of responses the other person gives either, and I suddenly become deaf because I don't know what to expect them to say, so when they say something, it takes me longer to process it.

Does any of that make any sense?

All I'm saying, in the end, is that I think we know ourselves. Many people self diagnose, and I don't think its necessary to tell those people they are wrong. They already know themselves, they've finally found an answer to their ENTIRE LIVES. To tell them that they are wrong is probably harmful. And to those people who aren't really looking, the other issues they struggle with would be easier managed through the correct lens.

Maybe it isn't right to have a label for every different kind of person. Maybe it makes us too much "us" vs "them".
But at the same time, having an identity and community of people who are like you makes you feel much less alone. It helps you make sense of the struggle in your life. It helps you to find a community where you're particular kind of crazy is welcomed and understood, sometimes for the first time in your life.
And that, as I've said often in the past, is 90% of the cure.

And I really need to write a post about how I feel about the label "high functioning". I did touch on that here, but I think that deserves it's own post. :P

Thanks for reading!

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