"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!

We ALL Need Support And Understanding

Diagnosis is 90% of the Cure

Before I even start this post I want to be clear: I am among a large group of Autism Spectrum people who DO NOT BELIEVE Autism needs to be cured. Just want to make that clear (based on the title, it could appear otherwise).

When I say "cure", I simply mean "manageable" or "less stressful".

This weekend I went to women's retreat. This is an entire weekend, Friday night thru Sunday afternoon, where there are usually close to 400 of us women in one resort. We have a lot of seminar/meetings, meals together, more classes, more meetings. Usually it amounts to 4 large whole group meetings, and 2 smaller divided times for 4 different presentations, as well as 4 meal times as a group.

The only problem with this is that there is very little down time. Between the large groups, the small groups, there is almost literally no time at all to be by yourself, unless you skip a class. And for me, I go for the meetings, so I am very hesitant to skip one at all, and in addition, it is in the fall, in MINNESOTA (who scheduled this at this time of year!?) so its COLD, and not a whole lot of fun to be anywhere but inside anyway. This year it even snowed, which made it worse for me. 

This is only the second time I have gone to women's retreat. Last year I felt as if I wanted to smack people in the face. Not because they were doing anything wrong, specifically, but because I was internally so empty, I had nothing left. My bucket empties when I'm with people, and it only refills with time alone to do what I want, and again, no time to refill the bucket. 

This year was different. Now I KNOW what I'm dealing with. I KNOW why I feel that way. I KNOW my tendency to be overwhelmed and empty. I did manage to sneak away after a couple of the meetings. After the Friday night meeting, I went out behind a tree by the lake. It was my favorite kind of tree - a weeping willow. As I stood under there, I could breathe. I thought about sitting down on the ground (it had not snowed) and when I did, apparently I spooked a beaver about 5 feet out into the lake, who smacked his tail a few times, and scared ME! I took some pictures and just relaxed a while. 

By the end of the weekend, I think I was overreacting a little over text to my poor husband, (but really, asking 800 times this weekend if I was coming home yet IS kinda annoying), but I was at least able to say that this is normal for me. I will be just fine. It isn't that people are trying to be rude or mean, I'm just overwhelmed, exhausted, and my bucket is empty! All I had to do was be patient with myself, knowing that its just a few hours until I would leave and have the car to myself all the way home. AH! :)

And I had a quiet ride back. 

I did have some people I followed back at least part of the way (luckily, the part that it was snowing the most). So that was nice, at least I knew if I went in the ditch I would have someone right there. lol

I could have ridden with them, and saved the gas money. But I honestly NEED that time in the car alone. If I didn't have that, I wouldn't have anything when I got home to a husband and son who missed me very much! I also got lucky and got home while hubby was loading the truck (with son with him) so I got to unload the car, unpack and get "organized" after getting home, as well as sit and watch part of a movie, all before they got home. So that was nice, and helped my bucket to be extra full for my son and hubby. :) So it ended up being a good relaxing evening. We even went to bed SUPER early (I did not see the clock read 8 PM last night, which is UNHEARD of, even though I could have found a lot to read or play on my phone!)

So, as the title implies, KNOWING is 90% of my "cure". KNOWING that I have Aspergers, the social limitations that go along with that, and the needs I have being the person that I am, it makes life a lot more enjoyable and easy to deal with. I know MUCH more about who I am, and why I feel the way I do sometimes. I wished that every person could find out for sure, could know for sure. I wish that 100% of people knew more about Autism Spectrum (as well as many many other conditions/personalities/diseases/handicaps/etc) so that instead of being afraid of the different, we can understand each other better, and understand each other's needs, and be more able to provide for others the things they need in their life and their situation. KNOWLEDGE = "CURE"

Teachers & Aspergers

Not one of my teachers ever indicated, understood or tried to figure out why I was so different from other kids. I loved my teachers (with some, literally, I LOVED them, LIVED for them and some days I went to school ONLY because they were there.) But none of them had a freaking clue. I'm sure that they all felt I was different. I'm sure they all thought I was weird, unique, special, smart, talented, peculiar, strange, or even flat out insane. 

It really isn't their fault. Though Hans Asperger first noticed qualities of the disorder (or, I prefer to say REorder) in 1944, even in the 1990's it wasn't common knowledge. In 1992, it was known by psychologists, but I'm going to guess that most of the knowledge about it at that point was almost limited to those experts, and one may have only found out about their diagnosis by seeing a psychologist. For many children, like myself, they just viewed themselves as odd, different and their own person, and not necessarily someone needing to be evaluated. Again, it wasn't common knowledge that these disorders existed, so there was no real provocation to seek professional help or diagnosis. 

"Aspergers and Girls" says
"Any time there is the combination of social immaturity, perservative interests, lack of eye contact, poor handwriting, poor gross motor coordination, repetitive behaviors, isolation or teasing by peers, falling grades, and being viewed as "odd" by teachers and peers, Asperger's Syndrome should be investigated."

Unfortunately, this book was published in 2006, far too late for me, or anyone like me, in the 80s or 90s, and quite possibly the early 2000s. 

I appreciate all of the teachers who took time out of their lives to make me feel comfortable and special. I appreciate the time that they took to protect me under certain circumstances, and to give me literal hiding places when I was overwhelmed, abused or bullied. This happened A LOT. So, I am grateful.

Though this disorder was not well understood back then, there is almost no excuse today. If you are involved in the lives of children in any aspect, you should at least have a general idea of the signs or symptoms of Aspergers and other disorders (sensory or otherwise). It might not help you get the child diagnosed or into special therapies however. Some parents do not want to hear these things about their kids, or already had feelings their child was different and just aren't able to face it. However, it can give an educator a very important awareness of children's differences, and ways to manage, deal with and guide children who are different. 

If you are an educator, it doesn't take a semester in higher education to learn about the disorder. Pick up a couple books on the topic. Read materials online. It is really not rocket science. Just knowing can save a life. I know sometimes I felt as if my friendship with and for my teachers saved mine. It is CRITICAL that teachers, who are the ones interacting with their students for 6-8+ hours a day, become aware of the differences in personalities, thinking processes, and behaviors associated with a true Asperger or Autism Spectrum Disorder.

This isn't something that should start in the big city schools and eventually in 20 years be in the rural schools. We need it in ALL schools, NOW. We need all teachers and faculty to be able to notice these differences, and do something about it. I know teachers are capable of this, because they wouldn't be teaching if they didn't care about kids. (They sure aren't in it for the money!)

So, educators; get educated.

Two books I have read, and can be a simple, quick and easy introduction to Aspergers specifically:
The Complete Guide to Aspergers Syndrome - Tony Attwood

Aspergers & Girls - Various Authors