If Things Were Different

Imagine your life without Autism (I know, imagining things that aren’t true are really difficult for us folks on the Spectrum, but give it a try).  Explain how life for you would be different. 

This is a prompt I gave my students a few weeks back to get them to think about who they were as their character related to Autism.   So, as with anything, I will never ask my students to answer any question which I am not willing to answer myself!

Autism doesn’t make me who I am.   Yet the experiences I have had coping with Autism have woven the very fabric from which I am tailored.   Despite my struggles, I wouldn’t trade my being Autistic for the world.  I am blessed, and I am proud of who and what I am.  I am not disappointed that I am not certain things.  

Failures have more power to teach us about ourselves than do successes.   The pitfalls and misadventures of my life have coached me, and I have learned from each of them.   Every day we make the choice whether to be defined by our challenges or to grow from them.   It wasn’t until I embraced my individuality and uniqueness that I was able to truly become myself.  

Growing up, if I had known that everything I was going through, socially and emotionally, as a person on the Autism Spectrum, would lead me to be the person I am today, I would not have taken the risks that I took.  I wouldn’t have attempted all of the social interactions that most often resulted in failure.  I wouldn’t have LEARNED from those failures, and in return, I never would have become ME.  

And every day as I struggle and fail and (occasionally) succeed, I am still BECOMING ME.   I am a process, a journey.  It may be tough and unfair at times, but it is MY journey. 

So those failed attempts at social interactions, the ones you walk away from feeling embarrassed, ashamed, empty, weird, strange, hurt, awkward…don’t let them define you.  Analyze the situations, and use your experiences as a tool for growth.   Be careful not to OVERANALYZE.  But look at the closely and gather from them what you could do differently in the future.  Create the picture in your mind, but make it as broad as possible.  Chances are you won’t find yourself in the EXACT same scenario again, but if you are able to generalize what you have learned from one situation you can apply your newfound skills to another. 

Sure, maybe things would be different.  Maybe I would have been better at expressing my thoughts and ideas, have had fewer meltdown moments, and been able to relate to others.  But one thing is for certain…if I were Neurotypical I would not be ME.  

The KDAWG Show

One of my AMAZING students has a YouTube channel in which she hosts her own show, and today I was lucky enough to be a guest on the KDAWG show and discuss Autism!  

I don't typically enjoy being caught on camera, but I will do anything (almost) for my students!   Enjoy!  

Friendship/Relationship

We are intended to live in relationship with one another.  But forming successful and rewarding relationships is no easy feat.   Having Autism casts another layer of complexity to the tumultuous trials of friendship.   We on the Spectrum thirst for relationship as much as the next guy.  Yet we are begrudged these friendships by our own social pitfalls.   Our incapacity to relate to others, our inability to infer and observe “unwritten” social rules, and our uncanny knack for committing social communication blunders, all contribute to the struggles we endure in developing and maintaining supportive and favorable human relationships. 

Unwritten rules are everywhere we go.  They govern our interactions in places such as schools, restaurants, and shopping malls.  They are evident in grocery stores, parks, and parking lots.   And they are especially apparent in our daily interactions with others. 

Should I shake hands with this person or high five them?  I see many people hug as they say goodbye, is this the right time and is the right person to hug goodbye?   Is it appropriate to use swear words with this person?  

Nowhere are the answers to these inquiries inscribed in stone.  Yet they are protocols in which our society deems appropriate to abide by.  Most people just “get it.”  They know to hug a personal friend goodbye and to shake the hand of a person they just met.  Those with Autism may not fully embrace this notion.  We might hug someone we just met after a job interview, which could be really awkward and off-putting.   These indiscretions can dampen opportunities for continued relationships.  When just getting acquainted with someone, we may inadvertently provide too much information about ourselves.   We may contact them too often, seeming obsessive or creepy.  In other instances we may not initiate enough contacting, leaving the impression that we are disinterested in pursuing the friendship.   There is a lot of fine print in the book of unwritten social rules, and those with Autism seem to be mind-blind to much of it. 

Many relationships are established and strengthened on the abilities to relate and connect with one another.  Being on the spectrum, I have a hard enough time trying to realize and comprehend my OWN feelings.   Yet I am expected to identify and relate to the feelings of other human beings.  And even when I am able to unearth my emotions, I may not be able to appropriately and meaningfully EXPRESS them,   I am somewhat inept at seeing things from the point of view of my relationship partner. I am improving on applying empathy, or understanding the feelings of others.   But this is only true for situations in which I have experienced a very similar circumstance.  If it requires me to “put myself in another’s shoes”, forget it.  I am bettering my competencies within this skill set, but it has taken many trials and errors, and even more experience in this area will be essential as I continue to grow. 

Communication is crucial in friendships.  Spoken words, body language, facial expressions, and additional non-verbal cues are reverberated throughout partnerships.  The inadequacy to perform such social communication skills at the same levels as our relational peers tends to encumber our friendships.  Our aversion to eye contact may yield the inaccurate impressions that we are uninterested or detached.  We have a tendency to dominate conversations with one-sided affairs that our partner is indifferent to or has no knowledge of.   We are often oblivious as we execute this breach in social etiquette.  We don’t notice that the person has become bored or disengaged, and we seem narcissistic and selfish.  We fail to observe that a person’s body language is suggesting they have exciting news or that they have just experienced something terrible.   We engage in quibbles with peers, not for the sake of argument or being right, but for the fact that we perceive our logic as the ONLY logic.   Instead we are seen as argumentative and opinionated know-it-alls.  Because of these improprieties, our relationships begin to unravel, as we are once again perceived as aloof, uncaring, and unconcerned with the relationship. 

Often we are beheld as annoying, immature, or obnoxious because of our Autistic behaviors.  Our obsessions and compulsions to do strange things are off-putting.   Our meltdowns are disheartening and intolerable, and as a result, we will be avoided.   We have many awkward interactions and say inappropriate things at inappropriate times and in inappropriate places.  

Relationships often leave us drowning, yearning for a sense of belonging.  Failed attempts leave behind feelings of guilt.  We SHOULD be able to relate.  We feel defective.   We feel isolated and rejected from the social world of the Neurotypical.

When we form meaningful and lasting relationships, we are admirable and wonderful friends.  Those on the Spectrum are loyal.  We are honest and trustworthy, qualities that anyone would care for in relationship.  We are kind, caring, and friendly.  Our passion leads us to deeper relationship.  And perhaps most importantly, we are patient and forgiving. 

When we seek partners in relationship, we require support, patience, and guidance.  This is a commendable and often unrecognized role, yet it is one of the most important and appreciated roles one can play in relationship with the Autistic.   We need friends who are honest and loyal.  We desire those who will kindly point out our social mishaps and safely assist us mending them.   We need friends who seek to understand us.  Friends who have our backs.  Partners.  Sidekicks. 

Autistics:

We should pursue friendships through clubs, organizations, schools, social networking, and support groups.  The internet has made the social scene more accessible than ever to those on the Spectrum, allowing us to think through our thoughts prior to expressing them, curtailing the probability of committing social faults in the beginning stages of relationship.   But no matter how we pursue friendships, we should always do so honestly and with full disclosure of our character and values.  We should not over-try, not try to emulate others, but we should whole-heartedly be ourselves.  Our uniqueness is what makes us amazing and fascinating.   Remember, friendship is a journey.  We should enjoy the ride.  

Transitions

Scenario A:

It’s Monday morning.  You wake up, shower, get dressed, and eat breakfast.  Equipped to face the day and a new week, you hop into your car, snag a cup of coffee in the nearby drive through, and embark on the commute to work.  This is the same adequate and reliable routine you have been practicing for years.   Upon arrival to the office, you settle in and commence working on a project you left unfinished on Friday.  Your boss interrupts your current activity and assigns you a new project.  You casually comply, temporarily putting your current project on hold while you contend with the newer and more urgent task.  It’s not a big deal.   You have no problem transitioning from one task to another one.  You are Neurotypical. 

Scenario B:

It’s Monday morning.  You wake up, shower, get dressed, and eat breakfast.  Equipped to face the day and a new week, you hop into your car, snag a cup of coffee in the nearby drive through, and embark on the commute to work.  This is the same adequate and reliable routine you have been practicing for years.   Upon arrival to the office, you settle in and commence working on a project you left unfinished on Friday.  Your boss interrupts your current activity and assigns you a new project….you flip out.   A thousand things are going through your head right now.  You were knee-deep in another project.   You are unsure how to complete the newer project.  Don’t they know you were already busy and you already have a million things to do?!   How can they expect me to just change projects like that?! Unbelievable!  You snap at your boss, who now asks to see you in his office.   Embarrassed and disoriented, you reluctantly comply.  What just happened?   That one slight speed bump in your daily routine, that one little detour, that one tiny request to shift your attention from your current project to a new one, created a disastrous response within you.  You are Autistic. 

You see, folks on the Spectrum have a difficult time transitioning between tasks, circumstances, and events.   This hardship spans across a variety of environments and situations.   We Autistics crave sameness and routine.  We actively pursue consistency and order.   And when our patterns of thoughts and behaviors are interrupted, we recoil from it.  A deviation from our routine can be a catalyst for undesirable behaviors, anywhere from negative thoughts and feelings, crying, and withdrawal, to verbal altercations and physical responses. 

Transition happens throughout our daily lives.   At school, students change assignments and subjects several times within a given class period.  Students morph from the classroom to the cafeteria to the playground to the gym and back to the classroom.   Frequently, teachers and school staff are able to set up daily routines and rituals that our Autistic students can fall into, some with guidance and others on their own.  However, transitioning from one task to another does not always go so effortlessly.  For instance, a student who is using a computer to complete a math assignment online may struggle to remove their attention from the current activity and lead into the next.    High school becomes tough, as there are few natural routines and even fewer teacher-made routines, resulting in chaos in the mind of the Autistic individual.   And substitute teachers… nightmarish for many on the Spectrum at any grade level!  

At home, we transition from sleep to wake, home to school, school to home, TV to dinner, dinner to bath time, story time to bed, and back to sleep to wake.   Within each activity there are smaller routines and transitions that transpire, such as a routine for brushing teeth during a routine for preparing for bedtime.   A child might visit the home of a friend or relative over night, and upon return have to readjust to make things steady once again.  We transition to and from the car, to and from the grocery store, to and from the park and restaurants and gyms and practices. 

And then there are the major transitions, moving from house to house, city to city, graduating from one school to another, and going from job to job.   These transitions occur over time, and so do the effects of the instabilities of them. 

Some of the behaviors that might be evident when a person is struggling with a transition are similar to (or might even include) those of a meltdown.  An Autistic individual may withdraw from others, seek sensory input, or seek a comforting person or item to help balance their wavering world.  They may show irritability, anxiety, or anger upon forced shift in attention or unexpected change.

What can be done to help our Autistic peers in times of transition?  There are a variety of strategies, and the ones you choose to select will depend on the individual and their response to the tactic.   One straightforward rule of thumb is this: the more advance notice of change given, the better.   Much of our anxiety and inability to shift attention comes from the new, the unexpected, and the unfamiliar.  The more notice and clarification provided, the more manageable and uncomplicated the transition will be.   Some tools that can help include visual timers and visual schedules.  Being aware how much time we have to complete the present activity, and knowing what activity will follow the present one, can help ease some of the apprehension and dread.   Using countdowns can help, as well as task completion lists.   Using the strategy of “first/then”, in which a person is told what they will do now and what will follow, can be powerful.    Having a dependable, steady routine in place and following it closely, with planned time for transitions, can help, too.   However, it is important that Autistics be given the opportunity to practice unexpected transitions in a controlled and safe manner.   Plan for “pop transitions”, and demonstrate to the person that the change in routine is safe, as well as teach strategies for regaining personal control. 

Growing up on the Spectrum, I really grappled with transitions.  One distinct transition I recall is a time when my family was on vacation, visiting some relatives who lived about a six hour drive away.   I was relishing in spending time with a cousin whom I was (and am) extremely close to.  He was like another brother to me, and we didn’t get to see one another nearly as often as we would have liked.   We played video games, talked and laughed, and teased our younger siblings.   Hoping to delay the inevitability of my leaving and returning home, my cousin and I concocted a shenanigan of a plan in which he could return home with us and stay over spring break.  It was a sure fire proposal.   Or so we thought.  We were denied our request and I was forced to leave without him.  The six hour journey home in the car was engulfed with my sobs, screams, wails, cursing, head-banging, thumb-biting, and withdrawal.   There was nothing that could satisfy me.  My meltdown wasn’t due to the fact that he couldn’t come home with us, nor was it caused by the idea that I was told “no”.  Rather, it was the feeling that my world was out of control.  First of all, my plan made absolute and undeniable logical sense TO ME.  I was blind to the points of view of the adults in charge.  In addition, I didn’t KNOW when I could see him again.  I didn’t KNOW how much time we would have next time.   It was all of this unknown that fueled my enduring, six hour Chernobyl moment.  I don’t know what age you might have pictured me to be when reading this personal account.  Maybe 8 ?  10?  12?  No.  I was sixteen years old.   Sixteen and unable to handle transitioning from one moment to the next.  Sixteen and Autistic. 

If you are a parent or teacher reading this, be mindful that those on the Spectrum struggle with transitional moments daily.   Implement routines that are safe and work well for all.   Have us be part of the creative process when designing routines.  What you think may work well may make no logical sense to us.   Strive to find out WHY we like to do things a certain way or in a certain order.  Give us as much forewarning as possible when there is a transition approaching.  Be patient.  If you are on the Spectrum, create routines for yourself.  Share those routines with the ones who care about you and work with you, so that they can do their best to help you.   Know that transitions are inevitable.  Seek healthy and attainable ways to keep your world in balance.    Just hold on tightly, be patient, and ride it out.   

Sensory Issues Part 4: What's that SMELL?

Today we will wrap up this blog series on Autism and Sensory issues, although we will still undoubtedly continue to cover these matters as they arise in future blog posts. 

The person on the Autism Spectrum may have an over or under-sensitivity to smell.   There may be some aromas the person cannot seem to get enough of; still other odors may provoke a response so volatile the culprit may lead them to an extreme physical or emotional reaction.  

As promised, I will give you a first-hand account from my own personal experiences as an Autistic.  Visiting a McDonald’s, Jack in the Box, Burger King, or nearly any other burger joint is a nightmare for me.   The instigating agent?  Ketchup.  Yep.  That sweet, putrid, sticky, blood-red, thick, disgusting substance that coats French fries, plasters children’s faces, and gummies up trashcans, tables, and floors at fast food restaurants everywhere.   As soon as I walk into a fast food chain I am immediately bulldozed by the noxious odor of this most popular condiment.   I cringe and attempt to power through.  I endeavor my focuses on other things; my burger and fries, the anticipation of a thick chocolate shake, the children two tables over who are pulling one another’s hair.  But the stench lingers densely in the air, asphyxiating a part of my brain that cannot seem to shake the scent.  I can almost smell it now (shudder), as I type this in my classroom, an area that is strictly a “Ketchup Free Zone”.

Other fragrances that are offending to my sensory system include the overbearing scents of musky colognes and vanilla perfumes.   When I was a child and a teen, living under my parents’ roof, I could “smell” my father coming to wake me up in the mornings.  (PS-Dad still wears too much cologne, but I still love you, Daddy!)  The aroma of vanilla creates a nauseating feeling deep in the pit of my stomach.    I enjoy roasting marshmallows and wieners over campfires just as much as the next outdoorsy individual, yet the essence of campfire smoke provokes a reaction in my gut that words cannot justify.  

There is one particularly distinct odor that I cannot seem to stomach.  This aroma makes my insides churn with emotion.  It makes my blood boil.   Just the thought of it stirs up within me the desire to escape, bringing stinging tears to my eyes.   This is the aroma of a tropical-scented air freshener.   Not just any tropical-scented air freshener, but this one in particular; manufactured by Glade in a scented oil delivery system.  I had this air freshener when I was living in my first apartment as a young adult.   During this period in my life I was going through some struggles and some emotionally trying times.  One of the air freshener refill units ruptured in a kitchen drawer, spilling its contents and coating everything inside of it with a pungent, oily film.  Upon occasion, I get just the slightest whiff of the essence of this fragrance, and all of the emotions and feelings of turmoil from that time in my life temporarily resurface. 

Here are some personal accounts of other’s on the Spectrum:

“Smells that bother me:
-types of food (chicken, onion), make my nose sting and smell like trash 
-body fluids that I don’t want to name, make me barf 
-air freshener smell horrible upsets my stomach 
-over cooked food makes a not in my stomach 
-turkey stinks I hate taste AND smell 
-body odor makes me gag 
-my brother's odor makes me want to be in a hazard suit 
-random smells makes me go /:( 
-over powered cheep perfume O_O”

-        Social Skills Student

“The smell of cigarette smoke makes me hold my breath until the smoker passes. The smell behind Nikis pizza makes me sick to my stomach: it just stinks.  The smell of mushrooms makes me want to puke. The smell of peanut butter and strawberry jelly together makes me feel like l will puke. I cannot stand the smell of mayonnaise…it just reminds me of the taste. I don’t know what it is about it I don't like but just that it makes me want to gag.” – Social Skills Student

“Garbage makes me want to bash someone’s head in. Cat food: yummy I've tasted it.  Mustard: I hate the smell of it because it makes me feel angry. Mayonnaise smells awful.  So does skin sometimes.” – Social Skills Student

"SMELLS! I hate the smell of smoke, like that of cigarettes, fires, or burnt food. Smoke gives me discomfort, and feelings like I am going to get cancer every time I smell that smell. Ketchup... Just makes me feel nauseous when I smell it. Don't like condiments. Lastly, I dislike the smell of cat litter. It's very disgusting, since I have to change their litter every two months. Eww." – Social Skills Student

“Stinky bodies, bad breath, and smelly farts smell really bad. I can't stand those smells.” – Social Skills Student

“Things I Can’t Stand to Smell 
1. My daddy and brother’s cologne.  I can’t stand it. If they put too much on it makes me want to gag. 
2. Stinky boys.   I can’t stand them, it smells horrible (no offense, boys). 
3. Deviled eggs.  I can’t stand the smell, it makes me sick. 
4. My dog’s breath, it makes me nauseous.
5. Trash bin.  It stinks and it makes want to puke.”

-        Social Skills Student

Sensory Processing Part 3: That Sound

For the Autistic, auditory input is more often than not a catalyst for sensory overload.  Analogous to the overload initiated by touch, noises can effortlessly overwhelm our nervous system, spinning us into an oversensitive state, leading to frustration, distractibility, and even meltdowns.   Imagine if the most insignificant noise sounded like nails on a chalkboard, or if the crinkling sound of crumpling paper made you cringe.  Imagine if you could hear things such as the hum of the refrigerator or the buzzing of a light bulb on the same scale that you hear a typical conversation.  

Often those on the Spectrum have co-occurring conditions, such as Attention Deficit Disorder, Obsessive Compulsive Disorder, or Tourrette Syndrome.    In my case, as with many others, I am afflicted by Central Auditory Processing Disorder, or CAPD.   This only complicates the affliction of sound sensitivity.    However, not everyone with Autism who is sensitive to sound has CAPD. 

Multiple and competing sounds can be arduous for the Autistic.  It becomes laborious when there is more than one conversation or activity taking place that requires our auditory attention.   Another offender is echoing.  Gyms and auditoriums are particular places in which giving our auditory systems are extremely taxed by echoes.   Listening with intent may not be possible in these places.  However, some may enjoy the reverberation of voices and sounds from the walls, and may seek this pleasurable input. Certain frequencies may plague us, frequencies that customarily would not inconvenience a Neurotypical person.   Sirens, vacuums, fireworks, car alarms, fire alarms, buzzers, and jets flying overhead can all be alarmingly and piercingly painful to the Autistic. 

Sometimes we may not give consideration to the source of our hindrance, and we continue to remain in the environment which is causing our conflict.   Other times we may be in a position in which we recognize our struggle, but for one reason or another we are unable to remove ourselves from the circumstance.  One strategy to help is to use headphones or earplugs to muffle sounds when loud or unwanted noise is anticipated (some Autistics, especially when they are young children, will place their hands over their ears). Speech therapy can incorporate activities to help process sounds.  One of the best ways to help someone with Autism is to give as much advanced warning as possible to the threat of loud or unexpected noises.  

Here are some firsthand accounts from students with Autism on what it is like to be sensitive to sound: 

“Sound Sensitive: Sound can be sensitive to some autistic people like me. I hate it when someone scratches the chalk board or when I scratch paper. Some people hate or dislike certain sounds. But not all people who are autistic are sound sensitive.  Some like all sounds or none at all.” – Social Skills Student

“There are some noises that really bother me such as this one weird noise that was very high pitched.  I don't know where it came from but it was very annoying. I really don't like it when people are talking incredibly loud and distracting me during my work. The other noise I cannot stand is there was this other autistic girl and she would scream at random I know she couldn't help it but it was really annoying.” – Social Skills Student

“I also dislike loud sounds, like those blaring from cars or headphones. Sounds should be at a nice level. In all, lights, colors and sounds should be at good, acceptable levels for every person who is going to see or hear it.” – Social Skills Student

“I heard a fire drill last year. It was pretty loud so it hurt my ears.” – Social Skills Student

“I’m sensitive to sounds my ears hurt from loud noises it gives my headaches .my ears are sensitive .I don’t like loud noises like car honks ,my brother’s trumpet, alarm clocks and yelling.” – Social Skills Student 

Sensory Processing Part 2: Sensory Seeking

For all of the sensory input we Autistics cannot tolerate, there are just as many welcome sensations that we actively seek.   Some Autistics cannot "get enough" of certain smell, tastes, textures, or sounds, and we hunger for the input that we receive from such things.    Sometimes we may ignore personal space, craving closeness.  Or we may lick things or place things in our mouth that are not food items, because we want to interpret those items through a different means than what is typical.   We chew on things, bite things, get close to things, touch things over and over, make noises, spin, crash into things, sniff things, and flash lights, all in an effort to satisfy our sensory processing system.  

Yesterday I went to an all-day charity event, which included a lively and comedic “celebrity” softball game and an outdoor concert put on by local musicians. Because of the multitude of variables and magnitude sensory input at such an event, I am always apprehensive of the possible meltdown manifesting.    

I swam through the crowd as people swarmed and bumped into me, changing directions last minute in front of me, walking too slowly or too closely to me (a philosophy I like to refer to as “the whole couch” theory).   The pleasant smells of sunscreen and hot dogs, woven with the ominous stench of ketchup, fill the spring air.   The beaming sun radiates upon my face, turning my skin pinkish.   Bees bumble and buzz around my head, searching for the sweetness of sodas and cotton candy.   The cool, refreshing grass of the field tickles my feet.  The commotion of the excited crowd encompasses me as fans cheer, applause, laugh, and chat.  

This myriad of sounds, sights, and smells would typically hurl me into sensory overload, culminating in flapping, rocking, “voicing”, biting my thumbs, and shutting down.  But today I was managing myself rather well.  Given the circumstances, I suppose one could say I was “with-it” or having an “on day”.   

Loud and unexpected noises rattle me.  Certain pitches and tones wrench my nerves.   But today the speakers were meticulous in their intonations.   The bass was so profound it was throbbing within my veins, pulsating within my spinal column.   I hungered for the acoustic and the fiddle, craved the steel guitar that was hitting my sensory sweet spot.  I lie down on a soft, familiar blanket and allowed the music to encompass me.  I positioned my ear on the ground and felt the vibrations through the dense earth below me.  As I lie on the ground, a friend applied slow and steady pressure to my back.  Deep pressure has a soothing effect on me.  Sometimes at home I will bury myself tightly in a blanket, securely sandwich myself under a mountainous pile of couch cushions, or have a friend hold me in a firm embrace.  As I enjoyed the music and the sun and the company of friends and family, I rocked back and forth to the melodies that filled the air, conceding to the rhythm, permitting it to take over me.  By some means this input helps to reconnect me with the world that circumferences me.  

There were occasions throughout the day when I had had enough.  Moments when I just wanted to tell my crew to pack up and let’s head home.   But I endured.  I took a walk, away from the crowd, into the shade, out to the car for a bottle of water and a grapple (that’s my favorite fruit by the way, an apple that tastes like a grape).  I did all I could to sustain and carry on, enjoying the day with the excitement of new friends, the comfort of old friends, and the craziness of my family.  

Sensory Processing Part 1: Touch and Texture

This is the first in a series of posts on Autism and sensory processing.  Although not an official component of the diagnosis of Autism Spectrum Disorders, sensory input issues plague those in the Autism community.    Sensory processing, sometimes called sensory integration, refers to the way our brains perceive the messages collected from our senses, including sights, smells, tastes, touch, movement, and sounds.   The disorganization of the messages of a person with Autism results in a person being over or under sensitive to stimuli.  A person can be both over AND under sensitive to a particular stimulus.  For instance, a person who is sensitive to touch may be over sensitive to harsh, scratchy textures (squirming in a shirt with a tag on the back of the neck) but not be able to get enough of soft, cottony textures (touching soft shirts on a display in the store over and over again).  

Today’s post is on touch.   As suggested by the above example, the feeling of a tag on the back of a shirt can be agonizing for some on the Spectrum.    Others may not be cognizant a tag at all.  But for those whom it does bother, the sensation can be excruciating.   Often times, the person experiencing sensory adversities associated with touch are unable to clearly identify the source of the offender, leading to anxiety, frustration, and meltdowns. 

When someone touches me from behind lightly, or unexpectedly touches me, I begin to wriggle and writhe out of my own skin.  I detest being touched, particularly abruptly, unexpectedly, or delicately.   I may turn around in a fit of defensive anger if I am bumped from behind (another reason I avoid crowds as much as possible), or I may cringe and begin to shut down into my own little world.   Hugs are okay, if I see them coming, and if they are firm and meaningful.  Nobody likes a limp hug. 

I am very selective about the clothing I wear.  One of the most undesirable, insufferable things for me to do is find clothing that is tolerable for my senses, yet somewhat fashionable and that is appropriate for work.   At work we are permitted to wear polo shirts (amongst other and even less-desirable options) and I have been fortunate enough to find a brand of polo shirt that has a soft, cottony feel and a pliable collar.  In my workplace, women must wear khaki-styled pants or skirts.    My legs are very sensitive to the type of textures that touches them.  Searching for pants that do not feel burdensome on my legs is always an arduous task, but I have finally found some that are light and cool and breezy in the leg (they were designed for outdoorsmen for whom breathability and coolness are essential).  Growing up, I always dressed like a tom boy because it was what was comfortable for me.  Dresses and girls’ clothing often have frilly lace and other harsh, irritating fabrics, while boys’ clothing tends to be simple and soft.  On some days, when I am feeling exceptionally sensitive, I will put my socks on inside out to avoid letting the “bumpies” on the bottoms come in contact with my feet.    

I have an extreme aversion to the textures of certain foods.  Nearly any food item that can be considered mushy, slimy, slippery, or soggy is out of the question for me.  While often seen as “picky”, those of us on the Spectrum with sensitivities to textures truly cannot tolerate certain consistencies.    Some of the particular offenders for me include ketchup, mayonnaise, and mustard, all three very popular condiments that come loaded on burgers and sandwiches in just about any restaurant.   I double-check my sandwiches prior to taking a single bite, because if I were to bite into mayo just once… (shudder).  As a kid my disgust towards certain foods instigated numerous meltdowns.  No parent wants to take back a burger that was improperly prepared because their kid “can’t deal with it.”   The end result was usually yelling, anger, tears, and hunger. 

Just the other day my nieces (ages 2 ½ and 15 months) were over for dinner.   Temporarily forgetting my intolerance, my father made both girls plates with hot dogs and mashed potatoes and ketchup.  Tons of ketchup.   The younger one sat next to me, dipping her hot dog in and out of the ketchup and smearing it all over her face.  The sweet, sticky, blood-red substance covered her plate, the table, and her tiny little hands.  She then proceeded to look me in the eye and wipe her hands on my chair.   So grossed out and unable to tolerate the sight and smells any longer, I was forced to eat my dinner in another room.   Some may say “get over it”, but for those of us who are on the Spectrum, it is not that simple.  It is not a mental aversion that is responsible for these things, rather it is a physical problem that is related to the ways our nervous system processes these textures and smells and tastes. 

The next time someone is struggling with sensory input, keep in mind that we are not all wired the same.  A child who cries when we set their bare feet on the grass may not be able to tolerate the jagged, feathery grass below them.  Someone who gags at the sight of yogurt may not be able to handle the slippery substance.  A person who seems to dress inappropriately for a given situation may have a difficult time with the textures of certain clothing.   And the person who is ordering their burger or sandwich “plain and dry” may have an aversion to condiments. 

Here are some other accounts of what it is like to have sensory processing deficits related to Autism Spectrum Disorders:

Conversation with a Social Skills Student

Me – Tell me about how you are sensitive to certain textures.

Student - What like a weird type of fabric that sticks to your skin?

Me - Yeah, tell me about this fabric. What is it on? How does it make you feel?

Student - It’s on teddy bears, carpet, and toys and it makes me feel bad.

Student - Oh and socks.

Me - Is it rough or smooth? Fluffy? Describe it.

Student - Both rough and fluffy.

“One thing I cannot stand is the shirts with the button up collars. They feel like I’m being squeezed around the neck. I also cannot stand long sleeved shirts they make my arms feel itchy and also make my arms feel stiff. I cannot lie on the carpet because it makes my back feel itchy. If my shirt is off and I’m not under a blanket then it feels like a bunch of tiny insects are biting me on the back.”- Social Skills Student

“I don’t like to touch paper because it gives me goose bumps.  It has a texture that is too rough for me. Paper makes me want to run 3 miles away from it. I strongly dislike the feel of paper because I have autism. And my mom doesn’t like the feel of fish.” - Social Skills Student

"I don't like to be touched. My nerves would always go crazy when someone touches me when I am focused on something else. I remember last Tuesday my brother touched me on the armpits. I politely chewed him out, saying "Don't touch me!" "Stop doing that!” I dislike his tendency to touch me when I use my computer." - Social Skills Student

“I hate being touched it make me feel uncomfortable by it. I will only let my family touch me. I don’t like having my hair touched.  I twitch at the feeling. I don’t like my neck to be touched.  I hate having my feet touched because I’m very ticklish on my feet.” - Social Skills Student

Obsessions, Compulsions, Perseverations, OH MY!

Obsessions.  Compulsions.  Obsessions.  Obsessions.  Obsessions.  Compulsions.

Obsessive Compulsive Disorder (OCD) or characteristics thereof often accompany a diagnosis of Autism.   Obsessions refer to thoughts, and Compulsions refer to actions or behaviors that usually occur because of those thoughts. 

Obsessive thoughts in OCD are not like the typical worries and anxieties one experiences on a regular, healthy level.  Instead, they cause the person excessive anxiety and stress, are illogical or unrealistic, and are unwanted.   The thoughts will not go away and intrude upon the person’s life.   One example of an obsession that people might commonly think of is a fear of germs.     

Some other examples of topics of Obsessions are:

Fear of losing people

Fear of contamination

Fear of losing security

Fear of losing things

Fear of hurting self

Fear of hurting others

Fear of losing control

Perfectionism

Intrusive words or sounds

Religious thoughts

Superstitious ideas (lucky numbers, certain colors)

To compensate for these thoughts, people with OCD or related conditions feel compelled to do certain things.   For example, a person who has a fear of germs may feel compelled to wash their hands over and over again.   This wouldn’t be a person who has just gotten something sticky on their hands or who has just handled raw chicken.   Washing one’s hands under those circumstances would be logical.   But the person with OCD would feel that they HAVE to wash their hands constantly, sometimes hundreds of times a day, to the point that their life is disrupted by the activities they feel they have to perform.   Although not always a healthy practice, the acts of completing the tasks provide security and understanding and help the person experiencing obsessive thoughts cope with their anxiety. 

Some other examples of Compulsions are:

Arranging things

Ordering things

Following routines

Counting (out loud or silently)

Checking (checking locks, checking on people)

Picking skin or pulling hair

Hoarding things

Tapping

Mental tasks, such as praying or repeating words or phrases to oneself

Here is an account from one of my students on what it is like to be compelled to pick at one’s skin:

“In high school I started a new bad habit of picking at pimples. The most common place i would do this was on my arms. My excuse for why there were so many bumps on my arms was they were bug bites. If they were still skeptical i would say have you ever been to my house you have no idea how many mosquitoes there are there. But only I and a few others knew the truth.”- Social Skills Student

Another term used in the world of Autism is “perseveration.”  Perseverations are thoughts and behaviors that are repetitive in nature, and are thought to occur because of the brain’s inability to switch tasks. 

Perseveration, perseveration, perseveration.  Perseverations are related to obsessions, but unlike true obsessions they are somewhat desirable.  This includes topics of restrictive interests.  For example, a person with Autism might appear to be obsessed with trains.  Unlike a true obsession, in which the thought is undesirable, this is a perseveration.  The person enjoys thinking about trains and there is no fear involved associated with about this topic.   Only when the perseveration begins to interfere with the person’s daily activities and functioning does the perseveration become harmful.  The following is an excerpt from one of my students about a perseveration:

“I had a computer game called Darkspore. I had been played it for a long time. It has a ton of heroes, enemies, adventures and bosses. It was the coolest game ever. I was the great game master of Darkspore. Sometimes I became fixated and obsessed with the game.”- Social Skills Student

Part of my Autistic experience includes a lot of compulsions.  My compulsions include skin picking, following routines, ordering and arranging, repeating words in my head, counting in my head, and checking.  The obsessions that cause my compulsions are related to the need for order and stability, and the fear of my world being out of control.   I also experience perseverations.  I perseverate on things until I either obtain the desired item or experience, or until the situation resolves itself.   Some things I might perseverate on include going on an anticipated vacation, getting a new backpack for school, or playing a new video game.   I enjoy the experience of thinking and talking about those things (but I am also aware that when I perseverate on something for too long I can begin to annoy others). 

 Here are some examples of how I seek order in my world at work.  I feel compelled to complete and color code my calendar, and to keep my bookshelf tidy and in order.  

If you know someone who exhibits characteristics of OCD, please recognize the importance of their behaviors.   Show them understanding and patience, and try to help them through their rough times.   While it may be annoying to you in the moment, it can be terrifying and painful for the person who is experiencing obsessions and compulsions.