The ASD Family: Feeling Our Differences

              I read somewhere that the first thing a parent with children on the autism spectrum realizes is that other families do not go through the same struggles with their children as we do.  We see other families in the supermarkets, the parks, and at school, and they do not seem to struggle the way we do. The relief of the diagnosis is that we now at last know why, we have a reason; it is not just bad parenting.

That realization goes double for the parent of the ASD child, who is on the spectrum herself. I naturally assume that other people go through the same things that I do. I never considered they were experiencing their lives differently. I just assumed the problem was me. I was a terrible mother—my children were undisciplined because of my parenting.

I could not keep up, and it was MY FAULT.

I was peripherally aware that others seemed to be doing better than me, that other children were calmer and more behaved.  Because I do not socialize with other parents, and my friends and family live 600 miles away I live fairly isolated. The isolation has sheltered me somewhat from really feeling the difference between my family and other’s.

My brother stayed at our house with my two year old niece over the Thanksgiving weekend. She is a beautiful, calm little princess that I love dearly. We spent the days playing and giggling, and on Friday we drove down to the beach and put our little ones on amusement park rides.

Over this past weekend I really felt our differences. My niece napped, she didn’t bang her head and flail around for hours. She sat and ate her meals, while my son (6 months younger) screamed, threw things, and tried to run away.

My eight year old had multiple meltdowns due to the overstimulation of the holidays and extra people in the house.  Aspie Teen become Hyper-Aspie Teen because he was excited about having family over for the holidays, and had difficulty being appropriate in adult conversations.

My niece was happy and smiling riding the amusement park rides, while my little one screamed, climbed out and ran away. Then of course, he wanted Mom, who was riding and began screaming and shaking the gates around the rides to get to me.

Although I had a great weekend, it was incredibly exhausting, and at times very lonely even amidst a group of people. For the first time, I felt very acutely our family’s differences. Feeling the differences made me aware of the people around us, their scolding looks, and the comments like, “we would nip that right in the bud,” when our children had an eye-raising reaction to the stimuli around them.

             No—they would not, they could not, not if they lived in our family.

            When was the first time you FELT the differences? Do outings with friends or holiday gatherings with family make you feel it more?

The Beauty of Diagnosis; Surviving the Holidays

In addition, to all I have to be thankful for, I am thankful for my autism diagnosis.

Thanksgiving has come and gone. I am usually a panicked mess.  I love the holidays but hate the madness. I obsess about everything being perfect, every bite of food, every part of the house, everything. The amount of stress I put on myself is immeasurable, and yet, I do it every year. 

This year, however, was different. Why? I practiced the art of imperfection.

When my therapist first suggested that I "practice the art of imperfection,” I thought that it was terrible advice.  Who the heck wants to be imperfect, to do things imperfectly, not give it your all, or do it to the best of your ability.  Bad, bad, bad advice.  Maybe not—

Instead of stressing about every little thing that went wrong with my planned meal, I decided I was not going to drive myself crazy.  Company would come and go, and not know that I didn’t put chopped meat in my stuffing like I wanted to because I was too tired to run out to the store to get more when I ran out.

Normally, for me, this would have been a disaster. I would have had a meltdown. The meat was missing and the whole dinner ruined—the meat no one knew I put in there in the first place.

Some of my family drove down from NYC for Thanksgiving dinner. I was so excited they were coming, and although, I wanted everything to be perfect, I couldn’t manage it. There was too much to do, too much work to get done, too many sick children to tend to, and too little time for myself to decompress.

Before diagnosis, I blamed myself.  I didn’t try to slow down, or let things go. I didn’t let myself take care of ME. I would not take breaks from company—that was rude.  I would have never locked myself up in my bedroom for a little while just to take a rest and recharge.  I didn’t know that I NEEDED to do that.

Knowing made all the difference this year. I took small breaks, went to bed when I needed to, and didn’t stress over the little things (too much).  I was able to tell myself that I needed to be away from people, needed the quiet, and needed to sometimes let my hair down to hide the earplugs I slipped in.

I have survived Thanksgiving, but am still admittedly exhausted. I believe the exhaustion and need to wind down will last for the next few days, but now I know WHY I need that time.  Now, knowing that I truly NEED the time, and I am not just simply being crazy and selfish, I will take the time to recover. After all, I have to get ready for the Christmas madness, which I am already beginning to obsess over.

 **Sigh—small victories, and baby steps.

Be Careful of What You Say to ASD Children; the literal-Minded 8 year old

Our Words and our ASD Children

Being mindful of the words we use when we speak to our ASD children can be exhausting, but so can the meltdown that follows misinterpretations. Understanding how their highly literal minds process the words is crucial. 

It’s Sunday again and I am reminded of what my 8 year old boy said to me last Sunday.

I didn’t watch him get dressed and leave the house to go outside to play. Only a few minutes after he left the door burst open again.

“Ma-a-a-, I’m fr-r-re-e-ez-ing,” he said putting his ice cold hands inside the sleeves of my shirt. “It’s cold outside!”

He sounded truly perturbed, which puzzled me.

“Of course it’s cold, Matthew, it is November.  And you’re wearing shorts and a t-shirt! Go get changed.”

“No, Mom it’s freezing outside.” He said completely ignoring my instructions to change his clothes.

“If you put some warm clothes on, you won’t be cold”

“But it’s not supposed to be cold!”

“It’s November, put warm clothes on,” I insisted.

He still didn’t budge. “It’s Sunday, it’s not supposed to be cold.”

“Why not?”

The little man dropped his shoulders, and sighed, “Mom, SUN-day.”

He walked away from me shaking his head like there was something seriously wrong with Mom. How could I not get it?

To little man it was Sunday, which meant the sun was supposed to be out, and he was not supposed to be cold. He left me sitting here at my keyboard completely dumbfounded.  How long has he believed that Sunday meant the Sun would be shining?

I told a friend of mine (who I suspect is an undiagnosed Aspie) this story. She told me that when she was young she always insisted on eating French fries on Friday, because that was what she was supposed to have—her fries on FRY-day.

I often get glimpses into his literal world, fortunately, I can relate to his literalness but I often forget what it was like to be that young and take the world even more literally than I do now.  I wrote last week about his irritation with the “Slow Children” sign at school here.

My youngest (22 month old) has begun a screaming head banging stage! It’s awful.  And—he has had an ear infection, and has not been sleeping well at all.  My husband has taken to driving him in the van at night to get him to fall asleep. 

Finally after a long day of screaming, I got him down for a nap. It was just in time for my 8 yr. old to get home from school. He came running in the house with his friends from next door.  Since the baby was sleeping upstairs, I let them play the Wii down in the living room (big mistake).

After several times of telling them to quiet down that went ignored, I finally shut off the game and made everyone go outside to play. When they burst through the door again, waking the baby, I yelled that everyone needs to go outside to play.

“And don’t come back in the house!”

About a half an hour later I was sitting in my bedroom, which has two windows facing the front of the house, when I heard my eight year old crying—hysterically. I ran outside to find him bent over the front of our mini-van, with his head in his arms, tears flowing down his cheeks as he sobbed. 

“What’s wrong? What happened?”

He could barely get the words out between sobs. “I-I c-c-c-an’t come back in my house. I’m kicked out.”

The girls next door had to go inside, and my little man thought that he could not come back inside—ever!

LESSON LEARNED: I must be extremely careful of the words that I use when I speak to him. He will take every single word literally, and infinitely. Don’t come back in the house—for him, meant don’t ever come back into the house—EVER. This little mistake caused a complete meltdown which could have been avoided.

The word “NO” is another pitfall to avoid.  If he asks me a question, for instance, “can we go buy ice-cream?” I cannot simply say, no. I must qualify my answer.  No, we cannot go today, or right now, or it’s too cold outside today, or something. If I do not and simply answer, No, meltdown can quickly follow.  It is not because I told him No, but because he took that NO to mean no, not ever.  We can NEVER go and buy ice-cream-EVER.  

To the non-ASD person, this can seem like a child just being a brat, just wanting to get their own way (sometimes, yes—this can be true), but more likely it can be a misunderstanding, a literal misinterpretation of the words that you speak.

Growing up I had many of these misinterpretations, which were looked upon as my being difficult (intentionally), or throwing a tantrum when I didn’t hear the answer I wanted. Many times, that simply was not the case.

For an example of my literal-mind growing, where just one word made all the difference, or rather caused all the problem read: School was a Minefield.

He thought they were calling him slow; the literal-minded 8 year old

This is the sign displayed in front of my eight year old’s school

I guess he hadn’t really noticed it before, but when we pulled in front of the school to head to go the book fair he jumped out of the van and stamped his foot.

“Arghh!” he yelled.

“What’s wrong?” I asked.

“That sign!”

“What’s wrong with the sign?”

“The sign is saying we are slow children,” he said, “I’m not slow, look.”

He did his best sonic the hedgehog impression and ran for the front door.

I tried to explain to him that the sign is meant for the cars. It tells the drivers that there are children here and they have to slow down.  He looked at me sideways, and said nothing. I figured that I had explained it well enough.

When we walked back to the van, which I happened to park directly in front of the sign, he jumped up and tried to smack the it.

“Stupid sign,” he said.  “That’s not right Mom, they are calling me slow.”

Every time I see the sign now I giggle.  He still doesn’t grasp the meaning of the sign, but takes the words completely literally. It is a perfect illustration of how our autistic brains make literal interpretations and sometimes despite an adequate explanation we at times still fail to grasp the meaning, or rather, have difficulty getting past our own literal interpretations.

I found it even more interesting that not only did my little guy take the sign literally, he took it personally. He didn’t really see the sign as saying that all the children were slow, but that HE was slow.  Of course, in his mind, he could run very fast—like sonic and was very upset of the injustice of it all.

Now, he has just determined that the sign is a liar.  

Your Other Left: Spatial problems in autism

 “You need to make a left at this corner. No—your other left” ~ Mr. Aspie Writer

It doesn’t happen every once in a while; it happens all the time.

Whenever I am asked for direction (I am great at giving directions because I remember street names) I stumble over which way to tell the person to turn. I will point to the left and say right, or point to the right and say left—without fail.

I literally have to pick up my hands, look at them, and remember which one I write with.  I write with my right hand.  When I get those inevitable odd stares, I just laugh and say, “38 years old and I still can’t tell my left from my right.”  Ha-ha. But it wasn’t funny, it was embarrassing.

When I am told, “it’s the first door on the right,” I automatically turn left when I get there.  It’s in the right drawer, the right cabinet… I open the left drawer and the left cabinet every time.  I always thought I just had some strange mental block or something. I mean with a 50/50 chance of accidentally turning the right way (left or right) I get it wrong 100% of the time!  What are the odds?

It never occurred to me that there might be a reason, other than my own stupidity, for my difficulty differentiating right from left.  It never occurred to me that autism could be the culprit; that I was having spatial perception problems.

When I was younger (early twenties) I taught ballroom dance at Arthur Murray Dance Studios. I needed to call out which foot my partner had to use, and in which direction he needed to move. If my partner was taking a step with his left foot, then I was doing the opposite with my right foot.  I never got tripped up.  My movements had to be a mirror image of his—always backwards, so I blamed that dance experience for my difficulty with right and left.

After all, since I taught that way for a few months, it must be the reason I still can’t tell right from left almost twenty years later.  Right?

I never did come up with a good excuse for why I had difficulty before I worked there.

Autistic children often have spatial problems; of which telling left from their right is only one of the aspects. I don’t know why this surprises me anymore, at this point nothing should.  It just seems like every day I am learning something new about myself; my autistic self.

Things that never made any sense, had no good explanation, made me feel silly, stupid, less-than or alone can now be explained. I have a new set of eyes with which to see myself.

Does anyone feel embarrassment over a seemingly simple task? Fumble over left vs. right? Are there any tricks you come up with to help you come to the correct answer more quickly so no-one notices? Unfortunately, my looking at and comparing my hands, often mimicking writing to remember is not exactly inconspicuous.

Focusing on Special Interests

Asperger’s Syndrome and Special Interests 

Special Interests, For When My Well Runs Dry.

I can focus for hours and hours on end on reading, writing, or playing poker. The rest of the world disappears; I can forget it exists. It calms me, and the stress melts away. When I'm focused on one of my interests, I lose track of time, forget to eat, and am annoyed at even the interruption of needing to use the bathroom. 

Interruptions invoke immediate anger. This is not a conscious response. It's my first knee-jerk reaction. I can't control it; anger is just the first response. I can, however, control my reaction to that anger. But make no mistake about it—that is not something that comes naturally or easily. Controlling my immediate reactions is one of those things that are easier said than done. 

To other people it is a mystery that I can focus so intently on special interests but have no sustainable focus for anything else. What they don’t understand is that being absorbed by my interests is how I decompress. 

Focusing on and sustaining life activities...jobs, budgets, housekeeping, etc. takes from me. It is an exhausting struggle; a desperate attempt to tread water while drowning. 

Life drains my well. Special interests fill it back up. I need that time, I need that filling, that relaxing, that decompressing, in order to accomplish the other tasks in my life. 

My special interests have changed throughout my life. I just wrote about my very first special interest in my blogged book, Twirling Naked in the Streets; I was four years old.  

Today, my interests look different; they include reading, writing, and autism. When I decided I wanted to be a writer, I read every book I could get my hands on, consumed as much information as I could, and enrolled in writing classes. Beware: I tend to do more learning about doing than the actual doing, but I’m working on it. (See, I’m actually writing.) 

Several years ago, when I decided I wanted to learn how to play poker, I went about it much the same way. I joined a training site, spent uncountable hours playing, and recording sessions, studying hands that I won, and lost, and of course, reading everything I could find.  I have a pretty extensive poker book library now.  I still love playing poker, but I don’t do it as much as I used to.  It is another interest that has come and gone so to speak. 

For a long time I was frustrated by this. It fed the idea that I can never stick with, or complete anything (OK—maybe I can’t). But, now I know that it is normal for these intense interests to change, and I will try to not feel so bad about myself for putting so much energy into something only to have it lose its awe.  

I began writing this post from the dentist chair yesterday. Actually I began writing many things from that chair yesterday, which an example of how this interest (writing) calms me. When I returned home I found that a wonderfully insightful woman on the spectrum wrote an article on her blog, Musings of an Aspie, about special interests. She writes, "What's So Special About Special Interests?" 

Considering my contemplations for the day, her post was timely and I needed to share it with you. Read it, it's a great article. I hope you find her answer as insightful as I did.

What are some of your special interests?

Have they changed throughout the years?

Do you have any that remained the same?

(For me, reading and obsessive learning has stayed the same--can I consider that an interest? Hmmmm??)

Aspies Find a Way



A few weeks ago my husband emailed me this picture. He said, "This is an Aspie Mouse!" There is nothing that is impossible, you will just figure out a way to get what you want.  

           I like Aspie Mouse. I thought that was very insightful and observant on hubby's part, and hopefully meant to be a compliment.  

I heard someone say that some people have trouble thinking outside the box, but Aspies don't even know that a box even existed!  

I never could understand why others could not seem to solve problems, when to me the solutions seemed simple. But, when I offer my solutions people usually scoff at them. Apparently, my ways are not the way things are done, or more commonly I'm told that it is impossible and can't be done.  

Ever since I was very young telling me I could not do something was a sure fire way to get me to do it. I refused the whole idea of cannot. 

I believe that my Asperger’s Syndrome is at least partly responsible for my stubborn unrelenting determination. The rigidity in my thinking does not allow for the answer to be NO, not when the answer needs to be yes.  

If it was something that I wanted to do, or accomplish, there is nothing in the world that could convince me I was incapable of doing it. Unfortunately, life has beaten that optimistic perspective out of me, and I've become resigned, complacent, unlike myself, and very unhappy about it. 

The battle with my IT class's sound byte instructions this weekend made me want to quit. I wanted to drop the class. I wanted to drop the whole idea of school altogether (all or nothing as always). I was about to give up, then I thought about Aspie Mouse.

Now I know what I must do; I must be Aspie Mouse, become one with the little mouse trying desperately to find a way to that cheese.  

I need to print out the picture of this little mouse, pin it to my bulletin board above my desk, and look at it every time I think I can't, it's impossible, or I want to give up.

Auditory Learning: I cannot learn by listening

Asperger's Syndrome and Auditory Learning Difficulties

I am NOT an auditory learner! I cannot learn by listening; I do not process the information that way. Yesterday when I attempted to complete week one's module in my Information Technology (IT) class I was met with panic, overload, and the beginning of a complete meltdown that lasted most of the day. 

First, I thought I would take an IT class this semester, not because I am interested in the course, but because it is required. I wanted to take a non-writing intensive course this semester. I have many articles to finish editing and query letters to send, and I want to spend this month working on getting my book finished and published on my blog for all of you to read.  

With the busy holiday season approaching, and several writing projects being neglected, I thought my writing time would be better spent finishing these projects. Taking a non-writing class should be a cinch! Not so. 

The problem I found yesterday was that for module one a huge part of the course work required me to listen to sound bytes! There is an option to keep a transcript running along with the sound, which I thought would help me. I would be able to read while listening. It made it worse. About a minute into the first sound byte my head began throbbing. 

Auditory Processing Issues Causing Overload While Learning

I cannot learn by listening; my auditory processing issues won't allow it. I get completely overwhelmed in a very short period of time. The children were running around, the TV was blaring in the other room, and Mom (me) was screaming for everyone and everything to be quiet. Maybe if I can get some quiet I can absorb this information. That didn't work either.

To make matters worse, the scrolling words on the screen (the ones I thought would help) made my head spin. I cannot read and listen to the TV, music, people talking, or any kind of background noise. What made me think that I would be able to read the words scrolling across the screen with a voice speaking in the background? 

Then after each sound byte (and there were quite a few of them to get through) was a quiz. It didn't take me long to figure out that I had not retained ANYTHING from those lessons. I did not pass the quizzes, and my panic set in. 

Panic and the Perfectionist

The perfectionist in me has not allowed myself to get anything but A's. Period. Nothing but an A will do, and if I can't get one I have to drop the class.  

In fact, more than 20 years ago when I first attended college I actually dropped out partly because I could not maintain A's in every single subject all the time. As an adult I thought that compulsion would be lessened. It has not. 

I locked myself in my bedroom with the textbook (earplugs in) and tried to drown out the world. Part of the week's module included reading three chapters in the textbook and taking a module test on that information. Surely this part will not be a problem. I can learn anything by reading.  

I can learn anything, anything I am interested in! And the keyword here is... INTERESTED. I have come to the conclusion that I do not give a rat's ass about IT. It is boring, my eyes are glazing over, and I am not retaining much of anything at all. I officially hate it!  

Despite my hate for the material, I did manage to score a 92 on the module one quiz (based on the book reading).  

I intended to drop that class yesterday, which was the last day to drop it without penalty, but did not. My guilt stopped me, mostly because I already paid $220.00 for the books, which are not returnable because they are opened and contained an IT lab code. I didn't want to waste our family's money so I kept the course--seven more weeks to go. I am not happy. 

My concern is the complete panic and overload this course has put me in. My auditory sensitivities are being assaulted, and the material is so dry and boring that I want to vomit. The sound bytes are slow and monotone and I want to bang my head on the keyboard.  

Terrible Short-Term Memory / Excellent Long-Term Memory

The quizzes immediately following the dictated material also highlight my deficits—difficulty with short-term memory. I need time to process material to learn it. I am not learning anything this way.  

I have an incredible long-term memory, and a capacity to learn anything, or memorize an enormous amount of useless information. But, I have to process that information to retain it. Playing a sound file, and then asking me technical computer questions about the material I just heard is a nightmare.  

Difficulties Do Not Disappear Because We Are Grown

I naively thought that because I am a full-grown adult now, that these learning issues would be different. I thought that because I am an adult I can will myself to learn things that I am not interested in. I thought that I could listen to instruction and retain information--all because I am not a child. 

I was wrong--again. Apparently, these issues really are a part of my neurology, and now I need to find a way to work around them.  

More importantly though, I need to realize that my Aspie teen is going through the same things, and I need to find better ways for him to learn as well. If I, as an adult cannot learn things I am not interested in, or in a way that someone else says I must learn it, then how can I reasonably expect an adolescent to do it. 

I know that we all have to learn things we don’t care about, and we all have to do things that we don’t like doing.  So the question here is: how do we (Aspie’s) learn these things that are required of us? And how can we help our children do the same?

November's project: Blogging My Book; What are your thoughts on blog post length

Word Count and Blog Post Length

I am long winded; always have been. I've been thinking about word count lately in regards to blog posts. All of the articles and advice say that I should keep posts short (250 to 500 words) approximately one screen full.

Looking back I am averaging 3 to 5 times that length. Most of my posts are in the 1200-1500 word range.  

Blogging My Book 

After coming across, Nina Amir’s website, How to Blog a Book, I have been considering blogging my book, Twirling Naked in the Streets—and no-one noticed, beginning at point this month. Twirling Naked...will be a memoir of sorts about growing up with undiagnosed autism.

It was originally my goal to have the book finished by the end of this year, and of course I let the end of the year get this close without making the progress I was aiming for. In fact, since the project remains mostly inside my head and not on paper, I decided to participate in this year’s WNFIN (Write Non-Fiction in November). 

If I were to blog the book, meaning blog my writing as I write it allowing you all to read it as I go along, I need to figure out who much to post at a time. As some of you may have already figured out, I really can rambling on, and on, and on… 

I Need Your Help 

So back to your thoughts...do blog readers really enjoy reading shorter snippets? Am I long winded in my posts? Would you enjoy shorter more compact posts where I can explore subjects in smaller parts?  

If you are reading this—would you return to read a blogged book?

I need some reader input, so what do you all think?  

(This post runs approximately 300 words—see I can do short—er.)