Wednesday, January 2, 2013

Speech and Language Evaluation; Speech and Developmental Delays


speech and developmental delays

About a month ago, Tantrum Tot, my 23 month old, had his initial autism screening during a well-baby appointment at the pediatricians office.  The result conveyed was extremely high risk.

The pediatrician made an appointment for us to have a speech and language evaluation while we wait for an appointment with the developmental pediatrician, who by the way, we will have to wait several months to get in to see, AND drive three hours in each direction for a visit!

We are still waiting for our initial information packet, which needs to be filled out and returned to them to arrive in the mail.  No appointments will be made until they receive the packet (it would be nice if they actually send the damn thing to me though). To date, I am still waiting.

Today we went for T's Speech and Language Evaluation.  He played quietly lining up toy school buses in the waiting room while me and hubby filled out the intake paperwork.  Unfortunately that quiet was followed by a head-banging temper tantrum two seconds into his evaluation.

The speech pathologist took him into the therapy room leaving hubby and I in an observation room behind two-way glass.  I felt like my poor baby was being interrogated while we lurked on the outside.  She attempted to sit him in a hair with a "tray" of sorts.  It was like a highchair tray--big mistake! He freaks out if you attempt to restrain him to a high chair or anything where he cannot move around freely.

He screamed, cried, threw things, and tried to hit the poor woman with his head. I had to go into the room to hold and rock him because the poor kid was hyperventilating he was so upset.  The pathologist said that most of the autistic children she works with love to be in that chair, and have their own play space.  Well, not mine!

When finally calmed, he wanted the animals from the Noah's Ark toy on a shelf. Mom and the little guy sat on the floor lining up animals together. He was fairly cooperative from that point on.

The results: Receptive Expressive Language Delay; Developmental age was determined to be right around one year.  He is only using three words at the moment: Mom, No, and Go. Little guy does not respond to his name, or make eye contact--but we knew all this already.

We are still awaiting a visit with the Developmental Pediatrician to confirm his doctors ASD suspicions, and will (hopefully) be starting therapy two days per week--if our insurance will pay for it.  If they do not, I am not sure exactly how much therapy we will be able to afford.

I was not able to get anyone from Blue Cross / Blue Shield on the phone today, so I will be hounding them first thing in the morning armed with my diagnosis and treatment ICD-9 codes.  If anyone has experience with BC/BS and speech therapy, please let me know what your experience was.

This is the first of my three boys who has had any kind of speech therapy/intervention this early so I am not sure what to expect fully at this point.  The older boys were both at least four when they began speech therapy through the school system.

If your little ones had early intervention speech therapy, what was the outcome?  Do you think it is really effective at such a young age? I'd love to hear your experiences.

Tuesday, January 1, 2013

I bought a juicer! Happy New Year's Day to Me!

Autism Adderall and Juicing

A long time ago (years), I used to exercise, and juice—a lot.  I can recall feeling very good in general, and good about myself and my health.  I’ve gotten so far away from those days in recent years, and after reading a few health blogs I’ve decided to give juicing another go. 

Today, I bought myself a juicer (Happy New Year’s Day to Me) and I am sitting here typing and drinking my first juice from my “gift” to myself—apple, orange, grapefruit, lemon, carrot juice. It is tart, kind of sweet and sour, but not bad for my first time dropping fruits and veggies  indiscriminately into a juicer in—oh, about ten years.

I have had an issue recently, which I wrote about here: The Adderal Experiment, about how I am increasingly cranky on Adderall.  I was unable to ascertain if it was the Adderall itself making me irritable and giving me headaches, or if it is that that I simply do not eat while taking the medication.  A combination of laziness and stubbornness lead me to forego my Adderall intake for the past few weeks because I was running out and dreaded picking up the phone to make a doctor’s appointment for a refill.

I have not really been less irritable, but I have definitely been less productive and focused.  Another downside—I’ve put on fifteen pounds in the past month and a half, not good. Fifteen pounds represents about 12 % of my total body weight so it is a huge amount of weight for me to gain so quickly.  I can feel it in my legs, knees, and my incredibly painful back.

Unfortunately, I have a pretty bad case of degenerative disk disease and osteoarthritis throughout my spine—not fun, and it begins to hurt if I carry around any extra weight (which is most of the time). Out of sheer vainness, I decided I would start taking my Adderall again, lose the pounds, and be able to focus better.  The problem is I will likely not eat well, or at all most days except for maybe my morning coffee (ya, I know real healthy!).

My solutions: juice!! I will definitely drink when I take my meds because they make me insanely thirsty. My new experiment is to drink vegetable (green) juices, and fruit juices to ensure that I get the nourishment my body needs.  Let’s see then if I am super cranky and flying around the house on my broom stick…I hope not, but only time will tell.

Today is Day 1 of my juicing madness.  I didn’t take my Adderall, but I will begin to take it again tomorrow (I have a small supply leftover in the back of the cabinet) and make an appointment for a check-up and refill.  Alright, I’ll have hubby make the appointment.  I hate picking up that telephone and talking to anyone including the receptionist who makes appointments. So stay tuned, and we will see what happens...if I don't give you all an update someone, please, remind me!

Have a Happy and HEALTHY New Year!

~Aspie Writer

Oh by the way, my kids bought me Wii Fit for Christmas (think they were trying to tell Mom something), so I’ve been playing with my new “toy” too—and everything hurts! 

Executive Dysfunction and Goal Planning 101: Why Aspies Must Goal and Plan Differently.



Have goals, write them down, and then make a plan/roadmap to follow in order to accomplish them.
Executive Dysfunction Autism Goals

If I had a nickel for each time I have been given this advice I would be retired in my dream place on the Amalfi coast in Italia. 

Now I am going to tell you why making goals, resolutions, and promises to yourself only serve to make you feel bad in the end.  Having goals, dreams, ambitions, aspirations are important to all people, but goal setting for those on the autism spectrum is a two-edged sword. 

For those Aspie’s who apparently struggle with executive functioning issues, making it to our goals can be grueling, discouraging, and at times down right impossible.

Executive Functioning

Executive Functioning is the higher-order brain process that is responsible for being able to work towards our goals. It is the process that is responsible for planning, sequencings, prioritizing, shifting attention, and completing.

Many people on the autism spectrum, (like me) experience executive dysfunction. This important self-regulatory system when in deficit, makes it difficult to take steps towards a goal while incorporating information and making adjustments along the way.

I liken the goal reaching issues to my sensory processing issues (and wonder if on some level in the frontal cortex of the brain they are related). My auditory system seems to be unable to filter out background noise, or hone in on a particular sound when required. 

There is no filter; everything is coming at me at the same time, fawning for my attention—now. There is no hierarchy of importance in these sounds, meaning the sound of a voice speaking to me is of the same importance to my auditory system as the sounds of the traffic in the background, and, therefore, seemingly as loud and distracting. 

The person’s voice blends into the backgrounds sounds, often disorienting me, and making all the sounds and words blend together.  This is particularly problematic if I am stressed, distracted, or overloaded in any way. 

Making progress towards goals is very similar to this experience when you live with executive dysfunction. All the steps required to make progress towards a specific goal gets jumbled together. 

I often have trouble deciding what to do next (sequencing) in order to move myself closer to the goal because all the tasks needed to be completed, are of equal importance (prioritizing), and need my attention—now (no filter). This inability to sequence, and prioritize effectively often results in not being able to complete a project/goal.

“I am a sprinter, not a marathon runner.” ~ Jeannie Davide-Rivera, Twirling Naked in the Streets—and No-One Noticed

Long term goals (marathons), that have steps which need to be completed on a consistent basis (daily, weekly, monthly, etc.) such as maintaining a balanced budget, saving for the future, or paying things in a timely fashion are infinitely more difficult than short-term goals (sprints). I need to sprint to that finish line, getting there as fast as I possibly can before I lose sight of the line.  The longer it takes me to get to the finish line, the blurrier that line becomes until it has vanished from my sight altogether.

Simply telling me I have to work on these things and try harder is not the answer.  It can’t be because it really has little to do with how hard we try.  In fact, I try ridiculously hard, and have for years only to the same result—colossal failure.

One thing that happens to me often is that when I am working on a project/task/goal I have a difficult to time being able to start and/or stop.  This self-regulation process is also a product of executive functioning. The ability to begin a task and know when you have done enough work on that particular part, and move on to the next step necessary for completing.  However, autistic individuals, whether because we get lost in the details, or because we lose track of the time that has slipped away from us have a difficult time with starting and stopping.

I can often work on a piece of writing, focusing intently for hours on end, and still not feel like it is done.  I do not realize when it is time to take a break, eat something, use the bathroom, or go to bed.  While hyper-focusing on things that I enjoy or things in my special areas of interest, the ability to self-regulate, starting and stopping, becomes non-existent. 

I can often forget about everything and everyone around me and get lost in my own private world.  In these times, I have the capability to far out perform most any NT I know.  My special talent is the ability to focus intently, but that does not serve me well in the everyday things of life where I am expected to perform as everyone else.

I believe that our ability to intently focus is another manifestation of executive dysfunction, but one that can be harnessed and used as strength if only we would make plans and life goals that we are intensely passionate about. If only we would make goals that are suited to our special abilities. The problem I fear is that we very likely may only be able to work towards one goal at a time.

I, for one, cannot work on balancing a budget, keeping a house, working for a company, and working towards completing my writing projects.  I have to choose ONE, and only one at a time because it will be to the exclusion of everything else. 

Tasks like budgeting and housekeeping are particularly problematic because there is no clear beginning or end.  They continue on endlessly with no finish line in sight (the ultimate marathon). There is no conclusion, I cannot sequence, prioritize, organize with enough competency to make these tasks a normal second-nature part of my life.  I would then have to focus intently on them to the exclusion of everything else—indefinitely, which in reality is not possible.

The world around me seems to do these tasks with seeming ease, naturally, without having to think about every single little task, and then figure out in what order they should be accomplished. 

There are times I wish that I had that ability, to move through certain areas of life with ease, especially when they are domestically related because I am “expected” to be able to perform at a certain domestic level. But the simple true is that I do not possess the ability, I never have, and working toward unattainable goals just makes me miserable.

On a brighter note, I can focus longer and harder accomplishing more in areas that others struggle.  I learn quickly, and with ease subjects of my interest, which is something that does NOT come easily to most of the world.  So my solution to goal setting/ New Year’s Resolutions etc., is not to  make ANY that anyone else things I “should”.  No goals, lists, or promises to myself that I cannot keep! 

This is not to say in any way, shape, or form that I do not have goals, or that I am not ambitious—I am. Only that I will resolve to do more things that I enjoy, and less of what I do not.

I am resolving to make goals that I am intensely passionate about, and leave the things I can’t accomplish to others who can. Maybe the simple truth is that I am not “meant” for those tasks, maybe I am meant to do and accomplish so much more—so much more than I could have ever imagined if only I could shed the idea that I must work towards goals that are acceptable to everyone around me.

My advice to all this year’s goal makers and New Year’s resolutionists:


1.       Don’t make any resolutions!  If you need one, resolve to do more of what you like and less of what you do not.

2.       Only make goals to accomplish things you are INTENSELY passionate about, and try to complete them in short spurts in a series of short goals. For instance, make a goal to do something you enjoy today, whatever that activity may be—do it and feel good about yourself.

3.       Stop beating yourself up (as I have done every single New Year’s Day in the past) about the goals, resolutions, and promises you made to yourself last year that did not become realized.

4.       Make two lists—one of things you enjoy doing, and one of things you absolute hate.  Then work on doing more from list number one.

5.       Get to know yourself—really know yourself.  Think about your strengths (I suspect they may be tied very closely to your list of things you really enjoy doing) and then celebrate them. Make this year a celebration to you, your uniqueness, and your autistic-ly awesome self.


Now—Bring on 2013!!




Sunday, December 30, 2012

Blogging my book about growing up with undiagnosed Autism

In an effort to stick to something, to stay on track, to actually make it to a goal, I began blogging, Twirling Naked in the Streets—and No-one Noticed, which is a memoire of sort about my growing up with undiagnosed autism. In the spirit of my top ten blog post lists, I decided to take a look at the top ten book excerpts for Twirling.

When the book is completed (hopefully soon, if I get my tooshie in gear) it will be available edited, and in extended format in both print and e-book format.  Until that time, it will be available to everyone (thank you to all my book/blog readers so far!) to read on my blog. I am posting as I go so you are quite literally seeing it as I am writing it. (No pressure, right?) Please feel free to comment as I go along, your input is very valuable to me!

Here is a list of the top ten Twirling Naked in the Streets (chapter excerpts) posts












 

Thanks so much for reading; stick with me in 2013!

A happy and healthy New Year to you all!
~Aspie Writer

Aspie Writer’s Quick Reading List: My Ten Most Popular Blog Posts for 2012


This is just a quick list of my top ten blog posts this year.  Thank you all for reading! Have a happy and healthy New Year!



3. Aspies do not lack empathy; we crave it.

 









 

Bring on 2013!

 

Saturday, December 29, 2012

Aspie Teen Grieving the Loss of His Pet


Asperger's Teenager and Grief
Aspie Teen and "Buddy" soon after we took him home.
We will miss Buddy very much.

This is what Aspie Teen wrote on his Facebook page:


Dear Buddy,

I held on to you today and cried while you were leaving for last time I wish I could done something to save you I curse myself for not being able to save you. if only I caught you when I had the chance then you still be alive this very second. I miss you so so much that I cant bear it please have a nice life... in heaven with uncle angel. "

What Happened--

On Thursday evening my 13 and 8 year old sons was outside riding the dirt bikes they got for Christmas. Aspie Teen’s dog, Buddy, was securely on his lead outside. He slipped his collar and went running past my son.

Aspie Teen charged after him to try to catch him, but before he could catch up the dog darted into rush hour traffic and was struck by a car. Aspie Teen ran out after him almost getting hit himself. The cars did not and would not stop even for my son to get to his dog who now lied in the road.

A neighbor heard my son’s screams and ran out there to help him stop the traffic so he could get to the dog.  The wrapped the dog in a comforter while my 8 year old ran to get me and my husband. We scooped him up, hopped in the van and rushed off to the animal hospital.

We were told that the dog was in a lot of pain, he was hurt too badly and would likely not even survive the night. They gave my son time alone with the dog to say good-bye. The entire place could hear the wails. We nearly had to drag my poor baby out of that place; he didn’t want to leave his dog.

The past two nights have been sleepless—filled with waking and his crying for his best friend. (As well as many comforting and stimming behaviors) We considered yesterday getting him another fur friend to help him through this time. He even wanted to go to the pound and look at the dogs, but it was too much for him so we came home. We will be waiting until he is ready for another friend.

A new pet for the younger ones:

My 8 year old ASD child on the other hand was asking for a pup yesterday morning!  Instead, we allowed him to get a bunny rabbit. That has helped him. 
Tantrum Tot got in the case with the bunny
Little Man (8) and Tantrum Tot (23 mo.) have spent the morning running after the rabbit while Aspie Teen is finally getting some sleep.

I feel terrible not being able to take my son's pain away from him. Hearing him cry in his sleep is tearing my heart out.
Thank you all who visited my Facebook page, and sent him prayers and warm wishes.  He has read them all and although sad, he was happy to see that others cared about his pain as well. Please feel free to write him a little note in the comments section here; I know how much he will appreciate it.

Friday, December 28, 2012

Does Asperger’s Make It Harder to Know Yourself?


Asperger's Questions

A few months ago, I made the startling discovery that I don’t really know myself all that well.  In fact, I didn’t even know what I liked to eat—not without considering everyone else around me. That even sounds weird to me. As I write this, I am thinking that I have always known what I liked, and what I didn’t—remember, The Flying Christmas Fork, or I’m Not Wearing That.

When did all that change? When did I completely lose myself?

I was unable to concentrate at home, or get anything at all done. A research project was due for a New Media Writing and Publishing class I was taking, and I could not get two minutes of peace.  So, I grabbed my Ipad and left for the mall (I couldn’t think of anywhere else to go). I figured I would go get a bite to eat, and then head over to Barnes and Nobles, and work on my research.

I strolled into the food court alone, something I never do, and began walking down the line of restaurants all beckoning me to order from their places. I strolled past Primo Pizza and thought, Matty loves the pizza, maybe I should get pizza. A & D Wings, I could split a wings platter with Adam, or get some fries to share with the baby…

The trouble was that none of them were with me. I was lost. I stood there confused, and realized I had no idea what I WANTED TO EAT or WHAT I LIKED TO EAT from the food court. I hadn’t considered what I might really want for a very long time. Not wanting to waste anymore of my precious research time on my decision, I grabbed a philly cheese steak, some fries, and a coke, and then made my way to a table by the window. 

Yes—it was noisy in the food court, but at least I was armed with my ear plugs this time. I popped those babies in, and then went to work researching and nibbling on my food.  I noticed that I didn’t care much for the sandwich, why did I buy that anyway?

A further evaluation revealed my problem was larger than not knowing what I like to eat at the mall.  I no longer really knew what I liked—period.

“What do you like to do?” Someone asked. “Do you have any hobbies?”

No, and I don’t know, was all I could answer, and it was the truth.  I really didn’t know.

Do you know yourself? Do you know your likes and dislikes? I didn’t so—I’ve resolved to figure it out.

I think it is easier to list the things that we like, but harder to admit what we do not. At least, for me, it is. It is easy to say, I like to curl up by myself and read. I like to wrap myself in the softest, furriest, fuzziest blankets I can find. I like to sit here on the computer and blog surf. I like to write, and write, and write. But—what I do not like is probably less acceptable, and brings on the guilt.

It is hard to admit when we do not like things that we are supposed to like, or want to do happily. I do not intend to, or want to work a regular 9-5 job! It is out of my range of possibilities, AND I do not even have the desire. But—I do not entirely like being at home all day long either. I despise housekeeping. I hate cleaning dishes, doing laundry, vacuuming, and cooking three meals per day. These are some things that many women would love to be able to do, but I am lonely. I am frustrated, and constantly feel useless, unaccomplished, and depressed. I want OUT!

I want to get out of the house (not every day) but sometimes, or I want to be able to get some part-time daycare for the little guy so I can have some uninterrupted time to myself, to write, and accomplish something I WANT TO ACCOMPLISH. And, of course, I feel guilty for wanting that little bit of time for me. If I spent my time at a job making money (benefitting the family) then I would feel less guilty, but just so I can enjoy something I want to do—well, that is a whole other story.

Ok—I did it.

I said, one of the top things on my list of dislikes—staying home all day long, and housekeeping. I hate it, and I wish I didn’t have to do it. Are there things that you completely hate, despise, dislike, that you have not admitted even to yourself?

I have another—I do not like to talk on the phone. No, not for one single second, and so I avoid it.  I avoid calling people, I avoid answering the phone, I even avoid making necessary appointments with doctors because I can’t stand picking up that receiver!

I have even stopped calling my family on the holidays, or my dad for his birthday (shame on me). When I do call, I stress, and avoid it and put the phone call off until the last possible second. I have a load of theories as to why I hate being on the phone so intensely, but that could be a short novel in and of itself.

I’ve given two—your turn.

What do you REALLY REALLY dislike? Or like? (Even the weird stuff, I want to know—seriously.)

Do you think having difficulty knowing yourself is related to your ASD? Or is it just the actual likes and dislikes that are related? (i.e. not liking talking on the phone, or unending tasks)


Not sure what you like/dislike? I wasn’t either, but this blog post was very helpful: Getting to Know Yourself: The Greatest Discovery of All

Thursday, December 27, 2012

Aspie Writer on Loving Yourself

Autism and Loving Yourself



Thanks to a wonderful commenter on my wordpress blog where I am blogging my book, Twirling Naked in the Streets—and No-One Noticed, a book about growing up with undiagnosed autism, I have found the Prolific Living website/blog.

I have become engrossed in the writing and ideas that the author shares about life, goals, and being true to yourself—something I seriously struggle with, and suspect many others on the autism spectrum do as well.

I came upon this at a timely part of the year, the time of year that I always re-evaluate and say that I want things to be differnet—to change.  Mostly, I want me to change.

I’ve never had much in the way of self-image, and self-confidence seems fairly foreign as well (although I am working on it). A lifetime of guilt and blame will do that to a person—kill any budding of self-confidence that tries to sprout. That was the biggest downside about growing up undiagnosed.

Last year, I decided to try the 27 day Journal Challenge—journaling my way to better health. I hate to admit that I didn’t even make it through half of the journaling exercises before I quit, or the insights into myself sent me into a deep depressive state.

I want to try it again…but frankly I still fear failure.  Maybe I will try it publically, like I am doing with writing my book—maybe I will blog the journaling, and in that way have you all keep me motivated.  Maybe I will do it if I know someone is watching….isn’t that terrible? Not being able to accomplish even a simple goal without some outside help. 

It actually drives me bonkers! Now at least, I am armed with the knowledge that it is not a horrid character flaw of mine, but that I struggle with executive functioning, the process that regulates our ability to work towards and complete goals.  It’s same process that makes sequencing tasks to accomplish goals extremely difficult.

This year, after clinking around on the Prolific Living site, I decided to sign up for the free email course on self-confidence. Yesterday, I received my first installment, and what do you suppose it was about?  Loving yourself—of all things.

Loving myself?  I have spent the majority of my adult life absolutely hating myself!

I hate the way I can’t complete anything I set out to do, how I lose interest in things easily, and how I cannot focus on something I hate no matter how hard I try or how important it is. I hate that I can’t manage to keep the house clean enough, or organized, and that we are late for absolutely everything. I hate that I always feel like a failure as a parent because everyone else’s kids seem to be able to sit still and quiet in restaurants and I can’t take mine out in public!

I feel like a constant failure—constantly striving for things that are out of my reach, and being embarrassed and scorned by the world. How then, can I begin to love myself? I must want to, since every year around the New Year I try something.

Being undiagnosed for the majority of my life has taken its toll—don’t get me wrong, it hasn’t been all bad. I have tried more things, and failed at more things, and then most people ever think about. I didn’t always fear failure; that came with time.

This year, armed with my new life (with the knowledge of my neurology) I am going to be working on letting go of the things that make me feel terrible about myself and work on doing things for me!  My goodness—this may be the hardest thing for me to do because I consistently feel guilty about trying to do anything for me.

I know that I am not alone in this. From the short conversations I have had with others on the autism spectrum, I realized that many do not love themselves. In fact, I don’t think they like themselves all that much most of the time. I know I didn’t.

So how am I going to love myself? Where can I possible begin?

Farnoosh Brock, the author of prolific living, in her 21-Step Confidence Building Series offers these Five Steps to get started:

 “1. Smile at yourself often - either in the mirror or just to yourself and really feel the happy feeling that comes from that. It has great power. This also releases tension and ease you into whatever you are doing.

2. Put yourself first more often - If you are used to putting everyone else's desires and needs before yours, it's time to switch things up. Be gentle and firm about it and go for it. You matter just as much as everyone else.

3. Look at your body with acceptance, not criticism - This doesn't mean that you are in the best shape of your life and should never seek to change. It just means that self-criticism won't get you to change and it actually makes things worse, so accept where things are first with love.
 

4. Fill yourself with kind words and thoughts - You become your thoughts, and we talk about this more in the program. For now, love yourself by replacing the self-critical chatter in your head with the opposite - with kindness, and gentleness, and with a big proud "oh yeah" praise for who you are.

5. Do something just for yourself - And do this without feeling an ounce of guilt or shame. This can be ordering something, enjoying a luxury alone, or indulging in solitude with your favorite cuppa tea and a book. Do it feeling worthy of it because, well, you just are! “


Wow! I have a lot of work to do.

I struggle with everyone one of these steps, as I suspect many of us do. The hardest thing by far, is doing something just for me—followed closely by putting myself first.  These two things bring on a tremendous about of personal guilt that I NEED to shed!

I think I want to go lay in a tanning bed for a little while (I know—not the healthiest choice). I have not done that in at least eight years. I love the way the top pulls down when I hop in the bed surrounding me in a capsule of light, and how the bulbs warm my whole body at once. It feels like I am warming my bones…15 minutes of warmth, and quiet.  It is soothing for me. Tanning session, that is what I think I am going to do this week for me.

What would you like to do that would be just for yourself? Do you find it difficult, or struggle with guilt when considering doing something for yourself? Of, is it just me?

Monday, December 24, 2012

To A Less Lonely Christmas This Year—a Holiday Note


Asperger's Holidays Lonliness

My little Santa Baby
To all my friends old and new'

Before I embark on wrapping the rest of the gifts and baking the Christmas cookies, I wanted to say Merry Christmas, Happy Holidays, and a very Blessed New Year to every single one of my new friends.

I will be baking Grandma’s Christmas Cookies probably for the rest of the day, after I take my final exam for an IT class I am taking this semester (who puts finals the day before Christmas Eve??). The whole family, kids included, will be helping to mix batter, place chocolate chips, and sprinkle powdered sugar. This is something we do every year on Thanksgiving and Christmas because these cookies are ONLY made on two occasions—Grandma only made them for those two holidays, and my Aspie-self ONLY makes them two times a year. They are our holiday cookies and no-one can have any for the rest of the year so making cookies (and eating them) is a big holiday tradition in our house.

I wish I could share them with all of you because you have all made the holidays this year a little less lonely. You have all, with your love and understanding; made my world so much larger than I ever thought it could be.  I am less lonely because I have people whom I can talk with and share my crazy thoughts with who truly understand me.

Yesterday while finishing up my Christmas shopping madness, in Wally World (Wal-Mart), I glanced down at my phone to find messages from quite literally all over the globe. My new friends were sailing in South Africa, playing in the snow in England, writing short stories down in Australia, and fighting the Christmas traffic in NYC—and sharing a small part of their lives with me. It was a unique and awesome feeling to finally feel connected to other people in the world—THANK YOU.

I will be thinking about all of you this holiday season, hoping for the best, happiest and safest days to come for you all.  My heart and prayers will also be with those in Connecticut who lost their precious little ones, each day they are one of the first things on my mind. I undoubtedly will have those families in my heart and on my mind while I hold my little guys and watch them enjoy Christmas morning.

Reach out to those you can help, hold on to those who are close, and pray for those who you cannot reach out and touch.

With Love and Blessings this Holiday Season,

Jeannie

~Aspie Writer

Sunday, December 23, 2012

Rituals and Routines; I finished my book, now I can’t sleep!


Chainfire Autism Routines
I need to buy two books at a time! A few months ago I began reading the Sword of Truth series, by Terry Goodkind.  Only recently have I begun to read so much fiction, and am glad that I have.  Reading and writing fiction has been like therapy, and good exercises in Theory of Mind, but that is a subject for a whole other discussion.

The Sword of Truth Series has a total of twelve books, and I have consumed nine of the twelve.  I began with the Wizard’s First Rule, and wrote about how that stupid wizard was continually nagging me here. Well, I am hooked and now my wizard and all the other characters in the saga are my close friends. I spend time with them daily.

Without realizing it I began a ritual. Each night I crawl into bed with my Kindle (I love my Kindle, and have my eye on the new Kindle Whitepaper for Christmas…hee hee), and go to D’Hara to check on Richard (the hero of the book) while crunching on several packs of Smarties.  I think I am now developing a Smarties habit and problem too.

Hubby has gone to Wal-Mart at midnight because I was out of Smarties, and I need to munch on them while I check on my friends (read my book), or I will not be able to relax enough to sleep. Several times, there weren’t anymore!  Really? Who is eating up all the Smarties in town?  Oh—that may be me.

A couple of weeks ago, I announced that I needed to start buying two books in the series at a time so when I finish one I would not have to wait in order to purchase the next book in the series.  Of course, I didn’t actually do it, and I am now paying the price.

On Wednesday, I finished reading, Chainfire, book nine of the series, and downloaded the sample of Phantom, book ten. I might add a small complaint here to Mr. Goodkind.  The samples of the books, (a portion you can download onto your kindle to read before purchase), have been getting shorter by the book!  I thought the sample would least last me a day—but alas it was too short.  Or, maybe I read it too quickly—but I finished the sample Wednesday night as well.

Its Christmas time (that is my excuse) and I have to wait until payday to purchase book ten. I will purchase, ten and eleven, Confessor, on payday so this does not happen again because I have been unable to relax and sleep well the past few days. 

Reading these books has become my source of relaxation, winding down, decompressing, and very much a bedtime ritual and routine.  I have been “off” the past few days because my routine is messed up. I must admit that when I finish a book, and in this case it will be worse because it’s a series, I wind up in a funk—depressed and missing my friends.

Hubby suggested that I read another book (I have plenty), but I cannot do it.  I cannot start another story in the middle of this one!  Grrrrr

Anyway, tomorrow at dawn’s first light you can be certain I will be on Amazon downloading Phantom! What am I going to do when the series is over? I think I need a plan.

It seemed like such a small thing, a tiny routine, a small bedtime ritual, but when it was messed up it affected my sleep—despite my taking my Melatonin, I had trouble drifting off.  My sleep in turn affected my mood. It hadn’t occurred to me how even the smallest upsets can turn the whole day inside-out, and I am an adult. Can you imagine how our ASD children feel when their routines, no matter how tiny, are interrupted?

Monday, December 10, 2012

I Wouldn’t Recognize You if You Stood on Your Head



Face Blindness Autism

“Everyone knows Jeannie; she just doesn’t know them.”

That was the common phrase I heard in high school.  A constant stream of hugs, smiles, and waves filled my days. I never understood how so many people that I didn’t know, knew me. 

Prosopagnosia, also known as “facial agnosia” or “face-blindness,” is a neurological disorder that makes facial recognition difficult or impossible. Two thirds of autistic children and adults have some degree of face-blindness. I live among those numbers.

Do I know you?  That is the question that runs through my head when someone I don’t recognize approaches me in public. They call me by name, ask about my children, my parents, and my work—I know I should know this person, but I do not.

When my husband and I were first married we attended a very large church in Brooklyn, NY where I often spoke to people having no idea who they were.  I didn’t think there was anything wrong with me.  I just figured that in such a large church I never ran into the same person twice.

Being greeted by hugs and kisses from strangers has always made me uncomfortable; I don’t like to be touched. To add to my discomfort the odd looks these strangers gave me when I introduced myself was unnerving.  When people approached us to talk, I assumed that my husband knew them. We talked for a while, they left, and my husband would say, “You know them, I introduced you last week.” You did? 

I met the same people at church, each Sunday, talked with them, and still did not recognize them the following week.  It’s no wonder they looked at me like I was a lunatic when I introduced myself, yet again.

When the same scene played itself out over and over again, I began to believe what I had been told my entire life.  I was a lazy, absent-minded, self-absorbed air-head, who didn’t care enough about people to remember them. Or—I was stuck up, obnoxious, too good for anyone, and just ignored people; nothing could have been further from the truth.

The first time I read about Face-blindness, I was stunned.  I had another one of those “ah ha” moments. The moments were I had to look back at my life with new eyes, evaluating it through the lens of Autism. 

It took 38 years for me to be diagnosed with Asperger’s Syndrome (AS), a form of high functioning Autism—38 years of confusing experiences.

When I was a child AS was not a known diagnosis in the United States. Although, well known in Europe for more than twenty years at the time, it only became a viable diagnosis in the U.S. in 1994; three years after I was out of high school, and two years after I’d dropped out of college the first time around.

What is wrong with me? Why do I have trouble recognizing faces?

We do not see with our eyes, we “see” with our brains.  All of us—with or without Autism see with our brains. Our eyes take in a snapshot but it is our brains that process all the information in the photo. It makes sense of all the patterns, categorizes them, and stores them for later use (recognition).

I fail to recognize familiar faces, but I never fail to recognize a tree, or a cat, or the shapes of clouds. Why?

A number of theories have arisen to answer this question.  Maybe because we tend to not look people in the eye, or focus on their faces, we have a hard time remembering them. It is said that autistics tend to be socially uninterested—that we don’t care enough to remember people.

Could it be an issue of weak central coherence? 


Those with weak central coherence tend to focus on details but lose track of, or don’t perceive the whole. A tendency to focus on minute details, a portion of the face or specific feature, without taking in the whole picture could be partially responsible for many autistics having have difficulty with facial recognition.  All of these theories seem viable; however, I believe there is more to it than that.

Facial recognition is isolated in the right temporal lobe in the “fusiform face area.” Non-facial recognition happens on the left side of the brain.  In other words, all other details, pieces, and patterns are processed on the left side of the brain.

Why does this matter? Autistics tend to do fairly well on pattern recognition tests—significantly better than their neuro-typical counterparts, but do poorly on facial recognition tests. The opposite is true for neuro-typical people who perform very well on facial recognition test, but do poorly in pattern recognition. In the autistic brain it seems that the “fusiform face area” does not function the way other people’s do.

 This could explain why I wouldn’t recognize you if you stood on your head—or would I? Tests showed that autistics were able to recognize faces that they viewed upside down. Researchers found that the circuitry that recognizes faces only works on faces that are right side up.  Upside down faces are routed to the left side of the brain to be processed like any other image. The upside down faces processed like patterns, and autistics recognized those facial patterns.

 “How did you know it was me?” a friend asked pulling her mask from her face.

Costume parties, for me, are like any other social gathering. If I knew you well, I recognized you. It did not matter what you used to cover your face. I recognized the contour of my friend’s hands, her ring, the shoes we bought at the mall that summer, the way she stood, and swished her head back and forth when she talked.  I spotted her from across the room, without hearing her say a word, or knowing what costume she was wearing.

Most people rely on facial features to recognize someone they know. I’ve always wondered why bank robbers wore ski masks, but did not disguise the rest of the body. And it was ridiculous that in superhero movies no one recognized their loved ones because they wore a mask over their face.  Don’t all people rely on other details to recognize people they know?

When I think of my brother, I can form a mental picture of his face in my mind. I have no problem recognizing people who I know well.  But I can also bring up just as sharp mental picture of his hands, or the way he has this one thick vein that rolls back and forth over his wrist bone.  My oldest brother has hands exactly like my mother’s, my father’s hands look exactly like his fathers, and my son’s feet are very similar to my youngest brother’s feet.  I would recognize the way the hair lies across my husband’s arms, and would recognize him even if he wore a mask. These details are as vivid as any face I can recall.

For several years I worked in prisons. My co-workers often wore uniforms, and were stationed at the same posts day after day.  On a daily basis, I recognized them, said hello, knew their names—but if I saw them outside work, I did not recognize them.  If their uniform was off, or they were not where they should be (at their post), then I did not recognize them.  I processed the whole situation—the person, in uniform, sitting behind that desk. I was not processing the person’s face.  Place this same person in the supermarket, at the post office, or in the school cafeteria eating with their children, and I do not recognize them at all.

Many people have had the experience of seeing someone, and not being able to “place” their face; they the person who stands before them from somewhere, but can’t remember where. Or, they know the face and cannot recall a name. I too, have had these types of experiences with those that I have had contact with often enough to recognize something about them. But—more often than not, I simple do not recognize them at all.  There is no inkling of familiarity, no spark of recognition; it is as if I am staring into the face of a complete and total stranger.

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