Aspie Writer on 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?

To A Less Lonely Christmas This Year—a Holiday Note



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

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

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?

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

“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.

Navigating the Holidays with Autism: Part II: Is your Aspie a Christmas Control Freak?

Let’s talk about control. 

Autistics have a deep seated need for control. A need for routine, and to control our environments is paramount. In fact, it is very difficult for us not to do things the way we have always done them; the way we know they should be done.  Unfortunately, my rigid, often completely inflexible thinking does not allow me to be flexible (I am working on it). The problem is when things don’t go as planned, as expected, as they should go, I come unglued. 

Children can have complete meltdowns with small changes in their routines, heck I can have a complete meltdown with small changes.  I even need to make a list of all the stores I need to shop in and in which order I will visit them.  Believe me these lists are well thought out, planned, and I have a reason for the order (although you may not see it).

If my shopping trip, which is already a sensory nightmare, goes askew, I am done. I might as well go home, and you may be able to find me in the parking lot of a large shopping center in tears. I can’t get away from my plan; I need to follow it precisely. 

The same goes double for holiday preparations.  I am a complete Christmas control freak. I take way too long to pick out the perfect Christmas tree, and then figure out how many strings of lights it needs.  When it comes to decorating the tree, there is an order I must follow.  First all the white balls go on the tree, and then the red ones.  The red ones must be spread out evenly so they are not too bunched up and the dots of red are sprinkled through the spruce. Then and only then, do I begin to distribute the nicer ornaments, the heirlooms, and other decorations.  After that, garland, Father Christmas, ribbons, and the snow—in that order, no changes.

MUST FOLLOW THE PLAN

Needless to say, I am not very fun to trim the tree with. I don’t mean to be completely neurotic, I cannot help it. We MUST FOLLOW THE PLAN! Again, there is a reason for my plan, and a reason for the order we must trim the tree in, but if I begin to tell you what it is we will be here all day.  Why don’t they just trust me? 

In my last post, I discussed our problems with gift giving and receiving. We hate surprises! To be honest, surprises are stressful, and I can wind up a teary mess, as can my Aspie Teen.  Therefore, all gift giving is thoroughly planned out. I have lists of people, lists of gifts, prices, coupons, store locations—it’s very comprehensive.

Before diagnosis I just believed as I was told, I was a neurotic lunatic!  There still may be some truth to that statement. But, now understanding my need for routine and order coupled with my need to plan and know what to expect, my family can now adjust.  I in turn can learn to let go a little bit knowing that many times it is just my autism jumping in and interfering with my flexibility.

This year was better (so far), we all trimmed the tree, and I tried not to touch it too much.  I tend to re-place all the ornaments that everyone places because they are not in the right spots. This time I just handed the ornaments out—in order of course.  Then I saved the last few things that I couldn’t be flexible about to do myself. I spent much less time being annoyed, yelling, and making everyone re-do the tree.

No Surprises!

Now let’s go back to gift giving for a moment. I told you that we all make our Christmas lists.  This year, and he has done this every year, Aspie Teen is trying to micro-manage my Christmas shopping.  He always makes me a list (his Santa List) complete with prices and pictures (I wonder where he gets that from??), and then he starts to obsess about it. Adjusting his list, removing things, replacing things, finding better deals, and in general driving Mom crazy!

He has asked me for the Assassin’s Creed Gauntlet. It is a replica of a weapon from one of his video games. The thing has been on backorder since October. Would you believe that he has been monitoring the backorder situation and has found that it is now available in limited quantities online.  Last night, I caught him researching what materials the thing is made of, some kind of polymer plastic, and something else (I wasn’t really listening too intently since he’s been driving me crazy about this thing since October).

I tell him every year to make me a list of all his most wanted gifts, and we will see what he gets. (It was easier when he still believed in Santa!) It goes in one ear, and right out the other.  Every day so far since giving me his list, he checks on my progress.

“Mom, did you buy…yet? Because …has it on sale right now.” He says.

He is driving me absolutely bonkers, and making me wonder if I am this bad! 

The answer: Yes.

In fact, I buy my own Christmas gifts!  Then I tell my husband, “Here, this is from you.  These are from the kids…etc.” So unfortunately I must report that not only am I as bad as Aspie Teen, I am probably worse!

Don’t be too dismayed, I drag my husband into the stores now and make him pick out his own gifts too.  There really is no reason to spend time and money on getting him something he doesn’t really want.  If I do pick up a gift without him, I always show it to him to make sure he will like it before I wrap it up and put it under the tree.  Poor guy, no surprises for him either—ever.

Navigating the Holiday with Autism; Part I: Not sure what to get your Aspie for Christmas? Ask them!

Ever since I was a child I had an extreme need to know exactly what to expect. I hated surprises, and I still do!  My mother often complained how I was a “little bitch,” her words because when someone gave me something I didn’t like I was not polite and gracious about it, I said what I felt. There was no hiding that I was not going to wear that ugly itchy sweater, and even when I was a child I thought it silly to lie and say that I loved it when you’d wasted your money purchasing it for me.

Wouldn’t it be better to just buy me something I wanted?

I know Christmas gifts are supposed to be surprises (who made that up anyway?). Why do we need to be surprised?

My husband used to like to shop for clothing for me. He loves to shop; going to the mall is his favorite thing to do. He even loves to window shop—all of which I absolutely hate, especially if its clothes shopping.  I have too many sensitivities, there are too many things that I absolutely will not wear for other people to buy me clothes.  I don’t even like buying me clothes.  I usually find a pair of jeans and a shirt that I like and then buy that same shirt and jeans in all the colors they come in. When I find something that fits and is comfortable I must seize the opportunity.

Hubby used to constantly buy me clothing for gifts only to have to take them back, which he did not appreciate. I wasn’t sending things back to be mean or rude; I simply saw no reason to keep things in my closet that I knew I would never wear. Now, after 15 years, hubby is used to me—and I buy my own gifts.

Yes—I buy my own Christmas gifts.  (Stop laughing)

Hubby is still telling the story of our 10^th wedding anniversary when I came home wearing the new wedding band he had bought me.  What? I gave him the receipt. Unfortunately, I think hubby likes surprise and I am so completely incapable of even contemplating surprising him. So he now sends me a list (with pictures) of the things he may like for Christmas, he gives me a list with options (another bad idea).

I on the other hand usually pick out one or two things I really want and that is my entire list…it is all I really want and never expect any surprises under the tree.

So what does this all have to do with Asperger’s/Autism? It is an intense need to know what to expect, and the inability to hide feelings or catch the comments from jumping out of our mouths when the “surprises” are not what we expected. This is not meant to be unappreciative, or to be rude—not at all. In fact, I truly don’t want anyone to spend money on me, least of all waste their money on something I will never use.

My 13 year old Aspie Teen is the same way, many times even upsetting me. He doesn’t mean to be rude, but if the gift he opens is not exactly, and I mean exactly, what he expected, asked for or wanted, you will know about it.  He doesn’t let you know in a rude way, or I should say he doesn’t MEAN to be rude. He will say something like, “ya, it’s nice, but…”  That but, could be it would be nicer in black, or Game Stop had this game with special features, or something that makes you want to smack him!  But that is just him, he’s not being mean, he’s really not, just as I wasn’t when I was a child. He just gets very stressed if things are not exactly as expected.

Our Solution

The solution in our house, so Mom is not a teary mess on Christmas morning, is our Christmas lists. We all make lists, now similar to the ones that hubby does with the things we would like, complete with pictures, prices, and where to purchase them.  I know this sounds ridiculous to many people, or you may think it ruins the magic of Christmas and the surprises of gift-giving but it does not—not for us.

Another important thing that I need to note here are that Aspie Teen, as well as, myself becomes very anxious the closer to getting gifts of any kind we get. It doesn’t matter if it is Christmas, birthdays, whatever, for reasons that I don’t completely understand sometimes, getting gifts is stressful. That’s not to say we don’t like getting gifts, but I would truly rather give them than to receive. Maybe it is because I know that I am scared to open boxes that are a mystery. I worry about what is inside, if I will like it, and if I do not, if I will be able to control my facial expressions and tone of voice.

Of course this has gotten better with age and experience, but for the spectrum children this may take a very long time.  Just know that if your little one or loved one is like this about gifts that it is not being ungrateful, mean, or trying to hurt you in anyway.  It is just their wiring.  If you really want to make someone happy, or you are stumped for gift ideas, please just ask. It has saved us a lot of grief and needless hurt feelings.  

Up Next… Is your Aspie a Christmas Control Freak?

DSM-V - New Diagnostic Criteria for ASD – What will this mean for me, an Aspie?

Asperger’s Syndrome, PPD-NOS, and Autistic Disorder will be removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which will be published and in effect in May of 2013. Those disorders will now be included under one umbrella diagnosis of Autism Spectrum Disorder (ASD).

To be honest I am torn about the new DSM-V. On one hand I have finally found out what has been “wrong” with me my entire life. Being diagnosed with Asperger’s Syndrome came as quite a shock to me and many others, but in reality when the shock wore off, it was a tremendous relief.

I finally had a name for my difficulties. This will not change under the new DSM-V because I am clearly within the new diagnostic guidelines for Autism Spectrum Disorder.  In fact, I actually fit those criteria more accurately than the previous.

The part that concerns me most is the removing of the name, Asperger’s Syndrome. I understand that we as people are not a name, but it almost feels like invalidation. For 38 years I did not exist, no one saw my autism/Asperger’s, and now on some level I feel like it has happened again. I finally had a group of people to which I belonged, to identify with (Aspies), and then someone comes along and decides…well that doesn’t exist any longer.

Are we also invalidating all of Hans Asperger’s work with these autistic individuals? What about all the scientific research that has included Aspies as a group, will it still be valid? I think there are many questions rolling around in my mind that no-one can answer just yet.

On the other hand, I have noticed that with the label Asperger’s, opposed to Autism, sometimes our difficulties are minimalized.  After all, Asperger’s is a mild form of high-function autism, isn’t it?

In my short time online writing and blogging, I have had more than one comment to that “Asperger’s does not equal autism, it just doesn’t.”  Yes—we all have differing degrees of difficulties, and there is no doubt that I function differently than a person profoundly affect by autism. But, that does not mean my difficulties are not real.

One thing the new diagnostic criteria will do is label all of us autistic. No more minimalizing of those with Asperger’s or PPD-NOS, we will all be recognized for the difficulties that we do indeed have. This alone may be a good thing. 

I visited with one psychiatrist, who insisted that she’d worked with Aspergerian children and has never seen an adult with Asperger’s.  Then categorically denied that my diagnosis could be correct based on those terms without talking to me, looking at my records, or discussing my history.

Yet another doctor (a neurologist) questioned the validity of such a syndrome even existing, and this was not long ago. He went as far as to say that if they say it’s that (Asperger’s), “that means it’s all in your head.” What? My Sensory Processing Disorder is in my head? Really?

These are some of the things that MAY be corrected with the new umbrella diagnosis.  Now, let’s look at what that criterion is:

DSM-V Criteria for Diagnosis Autism Spectrum Disorder

I have borrowed the following criteria from John Elder Robinson’s blog post, How Will the DSM VChanges in Autism Affect People? I’ve added made my own highlights.

“This is the proposed definition of ASD. For a person to be diagnosed, they must meet criteria A, B, C, and D.

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated-verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

1. Stereotyped or repetitive speech, motor movements, or use of objects (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases);

2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes);

3. Highly restricted, fixated interests that are abnormal in intensity or focus (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests);

4. ** Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects); (emphasis mine)

**This is new

C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D. Symptoms together limit and impair everyday functioning.”

My Thoughts

I have highlighted above some the most important things about this criterion, and what I consider to be the most concerning. 

To begin with, the first section, A, highlights social interactions and to receive/maintain a diagnosis of autism spectrum disorder, you must meet ALL THREE OF THE DEFICITS highlighted. It bothers me that autism is still being categorized so strongly as a mainly communication disorder because socializing is only the tip of the iceberg when we look at autism as a whole.

For the most part I believe that if you have a diagnosis anywhere on the spectrum you will likely retain that diagnosis given even the three socialization based criteria use such a broad non-specific language. It does give doctors much latitude in diagnosis. Who is to say what abnormal social approach is? What exactly is normal?

I think that we have an improvement of sorts in section B, where patients are required to exhibit two of the four symptoms listed. This is the first time that Hyper-or-hypo reactivity to sensory input has been included in autism diagnostic criteria.

I am extremely happy to see this added with the hope that the medical profession may be beginning to see this part of our difficulties.  If I had to pick just one aspect of my autism that gives me the most trouble, is the most disabling, and the most concerning to me, it would be my sensory issues—no contest.

I suspect the same is true for many spectrum children. From my experience, I can tell you that many meltdowns, “temper tantrums”, and outburst and complete shutdowns where I’ve closed myself off from the world were directly connected to the amount of sensory overload I experienced.

It bothers me a bit that it has taken so long for someone to recognize sensory reactivity as part of autism. Then again, it bothers me that it is effectively labeled a mental disorder and included in this manual at all, but that is a discussion for another time.

Section C: Symptoms present in early childhood; checck. Read about my childhood here.
Section D: It is subjective, but standard--impairs everyday functioning: check.
After reviewing the new criteria, I am assured that I will retain my autism diagnosis; it will just be called Autism Spectrum Disorder. I can simply say that I am autistic without explaining what Asperger's Syndrome is because most people have at least heard of autism. I am NOT worried about losing a diagnosis.; I am only losing a label that I have come to identify with and for me that is sad. I am after all, Aspie Writer.  Should I change my name?
So now that you know what the new criterion is, what are you thoughts? Do you welcome a change in diagnosis? Horrified by the invalidation of Asperger's? What will this mean for your/our children?