Posts Tagged ‘Autism Spectrum Disorder’

Lately, I’ve had a lot of parents ask me what exactly is it like to have a Sensory Processing Disorder (SPD), and why it causes tantrums/meltdowns. So I’ve decided to write a post directed at trying to explain what my SPD is like, what it was like when I was a child, and how I reacted when I became overstimulated by the senses.

First, I have to say that SPD occurs in people with ADHD and others as well, who don’t have an autism spectrum disorder. So it’s not something that’s a definite part of autism, from what I understand, but more often than not, at least a few senses are affected.

I happen to be one of those lucky people to whom it affects every sense. What do I mean by SPD? Well, it’s when a person’s senses are either hyper (over) sensitive or hypo (under) sensitive. In some people it’s just one thing, like hearing, in others, it’s everything. I can tell you that as a kid, it wasn’t easy living with SPD, I didn’t know I had it, or that I was any different than anyone else either. But I was a fearful and skittish child as a result of it.

So SPD affects all my senses. To sum it up, I have hypersensitivities regarding hearing, touch, light, smell, and cold. On the other side, I’m overly tolerant to heat & burns, pain, and I have poor vision.

This means that 1) In a room filled with inconsistent noises I hear everything at the same volume, which distorts my ability to understand what’s being said to me. That’s where the Auditory Processing Disorder comes in. But that’s a whole different thing entirely. 2) I have sensitivities to touch and texture, for example, I can’t wear jewelry, as it scratches up against my skin. Clothing irritates me, I cannot sleep unless I’m au naturel because all the twisting and bunching of the clothes drives me insane. Even certain foods I cannot even stomach, because the texture of the food will make me sick immediately as I try to eat it politely. 3) I’m very sensitive to light, especially flourescent light, and I can easily be blinded by the sun at the beach or over the snow. With light bulbs, they literally hurt my eyes. They also irritate me to no end with their flickering and humming. 4) Smell. Highly sensitive to smell, good or bad. Either way it can affect me negatively. 5) Tolerance to heat is something that is good in hot weather. Actually if it isn’t 80F, I’m not warm enough. You will see me shiver and turn blue in weather below 80F, this goes for water temperature as well. This is where the oversensitivity to cold comes in. It’s 71F in my home right now, which is damn chilly for me. 6) Pain. Being hyposensitive to pain is a pain in the ass actually, since I have chronic pain conditions. When the doctor asks me to rate my scale of pain, I have to estimate going by what I think other people would say, cause I have a tendency to ignore pain. This ignorance of pain has landed me in the hospital dying before. Not a great thing overall. It’s something I tell Aspie/Autie moms to look out for in case there is a health problem that a child seems to not notice, especially as they hit their teen years. 7) Poor vision – self-explanatory. I had laser vision done to correct it a few years ago.

So where do I start? Say I’m sitting in my home alone, typing my blog. There is a distracting slew of noises surrounding me, the cars buzzing down the nearest highway, the industrial building nearby sawing or whatever all that chaos is, trash trucks up and down the streets, a ticking clock, several snoring cats and a squirrel on the roof. The TV is off, but I can still hear (and feel on my skin) the current of electricity powering all that equipment. Most people wouldn’t notice these things and they would be able to concentrate on their writing. Not me – each little noise hits me at the same volume, intermittently and unpredictably. This is distracting by itself, but when you factor in the unpredictability of the sounds, you then get anxiety, which automatically turns on the fight or flight mode. As a kid, this would have been a sensory overload, and a meltdown. I didn’t tantrum, I was too quiet of a kid to be loud. Instead, I would begin to cry uncontrollably, unable to speak, voice chords frozen in fear of what I didn’t understand. Now let’s add a little touch sensitivity. I put on, or say mom put on me, a thick turtleneck sweater. Imagine the terror of feeling like you’re being strangled to death. Not good. That’s enough to cause a meltdown by itself. Let’s add light sensitivity. A classroom, with row after row of tubular fluorescent lighting, the room lit like a fantastic Christmas display. Bright and blinding, but not only that, the humming and flickering of the light is just one more thing to distract me. One more thing to pile on the overload. Let’s say the room was just recently cleaned, using bleach. While no one else notices it, I’m literally choking and gagging trying to breath and then wham! asthma attack. Ok, what else can I overload myself with? The cold. School was always a nightmare for me, as the temps in the winter were barely enough to sustain my body warmth. Without a coat, there would be a blue, shivering girl in class who can’t pay attention to the instructor because I would slowly be freezing to death. I think this is a good representation of what a child might encounter in the classroom, and demonstrates how easily our fragile sensory systems can be overloaded.

So what are the solutions? Well, everyone is different, but I’ll share some of the things that I have found work for me. When it comes to noisy, inconsistent distractions, my savior is music, loud enough to drown out all of the other noises. In fact, that is the only way I write, with loud music or listening to my ipod. The ipod comes in handy at other times as well. You’ve got to find something that will give your child some comfort and a break from that onslaught on the hearing and everything else. Imagine being in constant fight or flight mode, as if at any moment you’re going to be attacked by something. It really isn’t fun, and a child doesn’t understand why it’s happening, so it becomes even more frightening. 

For sensitivities to light, sunglasses are the answer. I wear them anywhere I need them, at night when the headlights are blinding me, in giant overlit retail stores. I also made it a point to get rid of all the CFLs in my house and use bulbs that are more Aspie friendly.

The cold sensitivity? I always wore my coat to school, and when I was sent to the principal’s office and told to remove it, I declined. And when my dad found out, he drove up to the school and gave that principal a piece of his mind. No one ever asked me to remove my coat ever again. I love my dad! I’m told that most people on the spectrum are insensitive to cold, so they’re the opposite of me, and may be bothered by heat instead. 

All of these things point to finding out just what your child’s sensitivities are, and then working to find solutions that will minimize that fight or flight anxiety mode. Typically, someone sensitive to touch prefers soft fabrics, tags removed, seams that aren’t irritating to skin. No turtlenecks or scratchy wool please!

What is a Sensory Processing Disorder and what causes it? I don’t know what causes it, and I’m sure there are a ton of theories about how it develops. My understanding is that it’s a difference in how our brains are wired, compared to the non-SPD population. I like to say I’m “creatively wired.” I hope this post has helped some of the parents out there to understand their children better, and how they can work to find solutions that will decrease the overload, and hopefully, the meltdowns. I’m always here to answer questions for anyone. For more information on SPD, please refer to http://www.sinetwork.org/about-sensory-processing-disorder.html

~ Namaste






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November 1, 2011, was Autistics Speaking Day, and I had planned to write this then, but it didn’t work out that day. So here it is, my late contribution to Autistics Speaking Day, a piece on the lack of knowledge in the behavioral health field when it comes to autism, ASD,and chronic pain patients. Lately, I have been wondering if I should change the name of my blog to Autism, Angels, and IC. For newcomers, IC is Interstitial Cystitis, a severely debilitating and painful bladder disease that is considered a disability due to the huge impact it has on a person’s life. It seems like the three have begun to meld together into an inseparable story. But then I would have to change the name of the book as well, and I’m not sure I want to do that. I’ll have to think about that one. I think it would make for a much longer book, maybe even drag it into a second book.
Aside from that, I decided to share this part of my story because I think it’s important for people to know exactly how messed up our “behavioral health system” is. During my last rant, describing the overreaction of my IC specialist/surgeon, I’m sure I mentioned that she had decided that I could not get the surgery I needed, or even come into the office for bladder treatments, until I was under the care of a psychiatrist.
At the time, I had to call Magellan (the behavioral health division of my health insurance) for a listing of doctors who were accepting patients. Over the past 3 months, I had made numerous phone calls, only to be told that no one was accepting patients. I was even hung up on by one office receptionist, after disclosing my chronic pain and AS issues, with a curt, “I’m sorry, you would not make a good fit for this office.” Not even so much as a reference to doctors she thought might be able to help me. Finally, as I worked my way through the useless list, I came to a name I couldn’t even pronounce. I called the number. “Yes, we’re accepting patients,” the receptionist said. There were appointments open the following week. That alone should have been my warning. No waiting period to get in usually indicates a doctor who isn’t very popular, im my opinion. She set me up with an appointment with Dr. Manny. “Dr. Manny,” I thought. That sounded harmless. Like a compassionate, friendly guy. “Dr. Manny has to be nice,” I convinced myself, kicking my thoughts of doubt aside.
The day of the appointment, it rained of course, in my mind, a bad omen. Yeah, I’m funny that way, I perceive signs everywhere I go. I sat in the car nervously before going into the building for my appointment, deep breathing, as my physical therapist had taught me, to calm myself. Finally, I stepped out into the rain and hustled to the door.
I checked in, gave them my cards, and was surprised that there was no paperwork for me to fill out. Nothing questioning my background and experiences, or current drug therapies, nothing to provide the doctor with information about me. “Odd,” I thought. I sat down in the waiting room, thinking about how unfriendly it was to someone on the autism spectrum. There were huge, killer blinding fluorescents above me, flickering, I might add, a nice sized TV blaring some teenage soap opera, in the background a music station playing oldies, and then the receptionist answering and yakking on the phone. A child came out with one doctor, obviously on the spectrum, to get picked up by his parents. I listened as the doctor chatted about the boys progress in recognizing and expressing feelings. I smiled at the boy’s progress, but again looked around me and saw how unfriendly this environment was to people with sensory problems. My anxiety upped as I sat there, which triggered the old bladder to start to spasm. I ran to the restroom several times, trying to get it together, doing the deep breathing again. I heard my name called while I was in the restroom, so I hurried to get myself together. When I came out, the receptionist pointed to a door. “You may see Dr. Manny now,” she said.
I headed into the room, and sat in the chair closest to the doctor’s desk. I’m not even sure if there were any introductions. I began to tell him why I was there. The whole deal – specialist wants me under the care of a psychiatrist to manage my drugs, wants me to be cleared by doctor before resuming treatments or surgery. A week before, I had called my specialist, and asked her to fax over something stating exactly what she needed and expected. To my surprise, he looked at me blankly.
“Did you not receive anything from my doctor?” I asked.
“No,” he said,”nor can I clear you for surgery. The most I can do is show them a treatment plan.”
I explained that I would not be able to receive needed treatment for my diseased bladder and pelvic floor until I had something from a psychiatrist. He asked me for her number, and dialed the phone. Once he got my nurse practitioner on the phone, after a testy, “No, I cannot wait on hold,” to the office reception, he asked if he could put her on speakerphone. She declined of course. They were talking about what was needed. And, just as I suspected, the subject led to autism, since my surgeon and NP are scared to death of me and my FRIGHTENING AUTISM. Interestingly, after 10 minutes of having met this man, while on the phone, he looked at me. “No, she’s not Autistic, I can tell by looking at her eyes,” he said to her. What??? I was dumbfounded!! Yeah, I know my NT mask makes it really difficult to pick up on my autistic tendencies, and you really have to be around me a lot to even pick up on those tendencies. And as for eyes, I had taught myself the art of eye contact starting when I was 27 years old. Before that, I rarely had made eye contact.
I couldn’t help myself. I stated loudly, “I have a diagnosis of Asperger’s Syndrome.”
He looked at me, irritated at my interruption, “By who?,” he snapped.
“Dr. Mary Cohen,” I replied. Mary Cohen – top researcher at the University of Pennsylvania, specialty is diagnosing adult women on the spectrum, and an author of two books on the subject. A woman I really admire. She had put me through 4 hours of diagnostic testing and interviewing. In addition, she had interviewed my mother, and collected all of my developmental history.
“What is she?,” he snapped again.
“A neuropsychologist,” I said, imagining that just HAD to shut him up.
He scoffed, kind of snickered, and rolled his eyes mumbling,”They can’t diagnose autism.”
I sat there in disbelief, wondering what in hell I had gotten myself into. This man was so arrogant and rude, I couldn’t even understand why.
When he got off the phone, he went into some tirade, about being, “Board certified in Autism.” My pissed off side wanted to stand up and say, “Tough shit – I’m not impressed, my specialty is being someone who has Asperger’s Syndrome!” But I didn’t, thinking I was trapped in this situation. Afraid that I wouldn’t get treatments without this creep of a man treating me for depression.
Next he started on the interview, visibly determined to disprove my AS diagnosis. The first questions were predictably related to bi-polar disorder, which I don’t fit at all. When he asked me if I had ever had any “energetic periods,” I laughed and joked, “I wish, then I might get something done.” He didn’t even blink at my attempt to joke around. Next he wandered into severely autistic questions. Duh. I’m obviously high-functioning if I’m sitting in front of you trying to get the help I need. None of the questions were relative to someone with Asperger’s. Then, he moved into darker territory. The questions were aimed at personality disorder, most likely borderline. The same thing I was misdiagnosed with when I was 15 years old. But to his disappointment, my relationships with my family and friends did not point to borderline personality disorder. I sensed his irritation.
At this point, I was pissed. It was time for his interview. After all, the psychiatrist-patient relationship, should be one based on respect and knowledge.
“Do you know what IC is?” I asked him.
“Kidney problems,” he said.
Ehhhhhhhhh! Wrong! Bad doctor! I informed him that it was a painful bladder disease, with no cure. He had nothing to say, except, “Well, it’s in the kidney area.” What a dumbass – the pelvic area is the main problem, not the kidneys.
Next,”How much experience do you have treating someone with chronic pain?” This is important, considering that most people with chronic pain have depression issues.
He then went into a rant, over how he didn’t have any prior experience with chronic pain patients. It was a strange, unusual response. I was thinking, “No way can Dr. Arrogant treat me. He doesn’t even know what IC is, he denied my AS diagnosis without any testing, and he has no experience with people in chronic pain.” Did I mention that this man’s specialty in Autism was in children?
But I was in a hard place. I had to have a psychiatrist in order to get my treatments and surgery. To find another would take more time.
“Well what do you want to do?” he mumbled.
“I don’t have a choice right now,” I said, “I have to be treated.” I was silently crying at this point, tears streaming slowly down my face.
He mumbled that he would need to speak to 3 of my treating doctors to develop a treatment plan. After he had contacted all of them, he said he would call me.
When I left, I let the tears flow. Within one hour, I had been stripped of the tiny, fragile bit of dignity that I still had, my identity had been questioned and reassessed, and none of my real issues had been addressed. You know – that whole chronic pain and depression thing.
My previous post, about the medical community’s treatment of people with AS, had left me with quite a few messages in my inbox. All of them encouraging me to get out of the situation, and find a new doctor. I started thinking about this. “I’m better than this.” I thought. “Screw Dr. Know It All and Dr. Arrogant. They can make me wait as long as they want – I’m finding a GOOD psychiatrist!”
In the meantime, I gave Dr. Arrogant a week to contact my other doctors. To no surprise, he did not follow through on his promise. Luckily for me, I had gotten an appointment with a psychiatrist who had experience treating IC patients. Wow! A psych who knew what IC and chronic pain was! Amazing thought.
By writing this, I just wanted to show people how unreliable and how bad our behavioral health system can be. For someone who claimed to be Board certified in autism, and yet not know how an adult with Asperger’s would present, especially someone high functioning, doesn’t leave me with much faith in the behavioral health system. The number of phone calls I had to make in order to find someone accepting patients, the lack of understanding of chronic pain, depression, and autism spectrum disorders. I find this sad, and a bad example of the FAILURE of our behavioral health system to help those in need, when they need help. I also find it insane that a psychiatrist would act in such a rude, arrogant, and holier than thou manner. If this is an example of the majority of those working in the behavioral health field, it’s no wonder that so many people have difficulties obtaining the correct diagnosis for their children, and seniors, let’s not forget seniors. It’s no wonder families have so many difficulties developing IEPs for their kids, and getting the right kinds of treatment.
So I will continue to spread awareness of autism, ASDs, interstitial cystitis, chronic pain, and depression. Maybe someday, the behavioral health community will get it right. I can only hope.

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I had to write about this subject just to get it off my chest. This is an example of how the medical community reacts to and treats people with AS. To start off with, I have a medical condition called interstitial cystitis. It’s a very painful bladder disease and when it flares up badly, it can mean pain and it can mean getting up to go to the bathroom every 30-40 minutes to pee around the clock. When the flare lasts a few days, it mean NO SLEEP FOR ME. And what do you think happens to people when they get no sleep? Correct! You will become emotionally unstable.
So, in this condition, on 9/27, I arrived for my appointment with my IC specialist, a nurse practitioner. Of course, upon my arrival, I’m told that I owe $25 for a no show appointment. Which only upsets me more, because I had called the office the night that I missed to see if I could reschedule the appointment, and was greeted by a recorded message saying that the office was closed for the day. In my experience, this can mean only one thing, my Aspie brain screwed up the day. Perhaps, with the auditory processing disorder, I didn’t hear the date correctly when they called to confirm it.
Anyway, so that was that. No excuses for me, no understanding of my explanation, no matter that I had never missed an appointment in 3 years! Too bad – you owe us I was told.
By the time I got into the appointment I was in a meltdown state. My husband was with me, concerned that I hadn’t slept and was emotionally in a dark place. I say dark place, because, when you are in chronic pain, and chronically sleep deprived, the brain starts to shut down, it HAS too or I’ll become overwhelmed. It shut down in that I was tired, so tired of it all, to me, living is harder than death. For the last time, I wanted to try another anti-depressant. The NP was reluctant to try anti-depressants, whether it be due to inexperience or the past reactions I’d had to a few others, I don’t know.
I explained to her my whole situation, the lifeless feeling, the anxiety and depression, the sleep deprivation. Casually, she asks if I’d like to go to the ER at Hahnemann to be evaluated and get something to help me sleep.
We naively agree to do this, thinking that it will be quick, and sleep will be possible again. What I have learned from the experience that followed this decision is that YOU NEVER SHOULD ASK FOR HELP. Weather the storm myself, as I had always done before. And NEVER, EVER trust a doctor.
That night was horrid, like something out of a long nightmare where you just can’t wake up. After 7 hours, they finally let me go. I’m not going to go into the details, about the way I was treated there, because that could take up an additional note.
Leaving Hahnemann, with no help, was the straw that broke the camel’s back. I could not believe that I had been literally tortured for the last 7 hours with blinding fluorescent lights, excessive noise, freezing air conditioning (which I detest), and eldless conversations over the reason I was there. They had given me nothing. Just a note that said “Follow up with PCP.” No referrals to therapists, not even 1 little pill to help me sleep. Free to go. $50 lighter in the old pocket.
I had done everything I was supposed to after that. Went to PCP, went on the recommended medication, finally found rest in sleep. But none of this mattered.
All that mattered was that I had Aspergers and I was emotionally unstable. Dr No Name Surgeon undoubtedly made that decision upon reading it on my chart the next day. I received a phone call saying that my surgery (that I had waited months for, filled up tons of questionaires for the study I volunteered for, and paid to have a pre-op exam and bloodwork for) was canceled. Indefinitely. So whatever. I was pissed, but it was nothing to be upset over compared to what would come next.
I called to make my next appointment for bladder injections, since I wasn’t going into surgery, I was going to need them. To my surprise, the NP gets on the phone and explains that the office refuses to see me or treat me in any manner until I’m under the care of a psychiatrist. So I just have this to say, if I’m depressed and diabetic, does that mean a doctor could refuse my treatment? If I was pregnant and depressed, could the doctor refuse to do any pre-natal care until I fulfilled their vague requirements? What it came down to is this: because I was depressed and had Aspergers Syndrome, I must be under the treatment of a psychiatrist in order to receive my treatments.
And what does that mean, “under treatment?” It means that they can refuse to treat me for as long as they want, until I meet their requirement of what they consider to be “under treatment.”
In addition to this lovely situation, the new psychiatrist is going to take all my willpower not to tell the arrogant man off. Within 5 minutes of meeting me, he had dismissed my AS diagnosis and the professional who gave it to me. The further we went into discussion on the day we met, the easier I could see where this man was headed. Yup. He’s headed right for a Borderline Personality Disorder diagnosis. The same misdiagnosis I received at the age of 16. I have no doubt this man will try to relabel me with something that doesn’t fit me. But that’s ok. I’ll have my day to tell him what I really think eventually. Eventually I’ll find a good doctor and leave.
I don’t think any of the bs that occurred would have happened if I had been anyone else. If I had been someone without AS, I would’ve been fine. Treated well and fairly. But because I have AS, it scares the hell out of them. And they run and hide, and tell me that they refuse to treat me until I’m “cleared by the psychiatrist.” Whatever that means. Basically, my prediction is this: 1) I’m going to end up with a shiny, new label and 2) Dr No Name’s office will continue to refuse to treat me.
So we’ll see what happens…

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Memories and images. Like a movie reel that constantly flows through my mind, the images are as clear as a shining piece of crystal. Every life experience is there, every breathing moment, guiding me, influencing every decision I make each day. Thinking in pictures. Not everyone thinks in pictures. This is something I only found out recently, when I was diagnosed with AS. It is also something that I can’t possibly even begin to comprehend. How can there be any other way to think? The gliding flow of images in my mind, some all the way to back to my infancy, just seem so….natural. Real. The only way to think.
I do realize that there are many people who aren’t on the spectrum who are also visual thinkers. But this post is directed towards the fact that most people on the spectrum are specialized in thinking visually. We are the engineers, the oddball science professors, the inventors, strolling through life under the radar, undiagnosed.
So then, what is it like to think in pictures? What other ways are there to think? Apparently, most people think in words, some think in numbers. These are impossible ways of thought to me. I love thinking in pictures. Because I never forget. I never forget the way a place looks, the way I felt at the time, the smells, or the way others looked. Thinking in pictures is a gift to me. Without it, I wouldn’t have this incredible way of not taking anything for granted. Without it, the emotions that guide me through life wouldn’t be nearly as prominent.
My earliest memories are of my infancy. There are times when I hear flickers of what I think is my actual birth, but those memories are so faint, that I can’t be sure if they are real. The reel in my mind of this particular memory is not actually visual, but it is in audio and touch. I hear my own crying, and I feel many hands around me, touching me.
After that, the memories become more visual, but they aren’t consistent. I have a very profound memory of my mom, gazing down into my crib in the downstairs bedroom, late at night, whispering to me that I was such a beautiful baby. The memory is so clear, so present, that I have tears in my eyes as I write this. Another memory that makes me feel tearful, is that of my grandmother, my Babcia. I guess I was in some sort of baby carrier, babbling, when she leans forward and tells me that babies talk to the angels. I believe she was completely correct in her statement, since she was such an angel to all of us.
Toddlerhood is more consistent in my mind, and so full of innocence and joy. Running with nothing on but a diaper, in my aunt’s beautiful backyard. I loved that yard, with it’s great, stunningly beautiful weeping willow, loved the way the willow branches would brush against my face in the wind, whispering to me. The swing that hung from the willow, the action of swinging and how it felt so soothing, so natural and real. The gorgeous swimming pool…and the sign, “No P in the Pool”. Surrounded by my loving family…I feel so lucky to have these memories so clearly. Blessed would be a better word.
I get a little older and the pictures become even clearer. So clear, actually, that as a teenager I used to talk to my mom about them. Both of us pondered whether I was remembering images from another life at first. But then we figured it out…I was remembering my aunt, babysitting me. The setting is Levittown, Golden Ridge section, I think. I might have to double check on that. But I remember there was a cool cemetery nearby, and I remember my aunt caring for me. Another loving family member, another precious memory.
But thinking in pictures isn’t all fun and goodness. I remember the bad things as well, and when you have an autism spectrum disorder, there are many things to fear. For me, that was anything unknown, anything with bright light, crowds, loud noise, anything that felt like an assailant to my fragile sensory system. I had night terrors. Terrible, terrible nightmares about these things. What I feared the most as a toddler, was bright light, falling, and water. My night terrors consisted of blinding light, and as I mentioned before, one of the sources was the pendant light in my upstairs bedroom. The bright fluorescent light terrified me, and in those dreams it would blind me, burn me, take away all of my vision of everything else. Everything I knew. To me, in those dreams, I was being kidnapped by the light, taken away from my family, the ones who protected me from all that was unknown, and therefore extremely frightening.
When I dreamed of water, I would drown. I could never escape the pull of the water, and would wake up screaming just before my lungs would fill with the dark and sinister water. It was the same with falling. I would wake up just before I would fall into what I pictured as the black hole I guess, a place of infinity, a place of which there was no return.
And every time, my mom would be there, holding me, cradling me, soothing me with her sweet words. Sometimes, she would get out some little books, and read to me until I became calm. Once, one of my night terrors occured on a night that it was snowing. It transformed my terror into something magical, as I gazed out the window at the big fluffy flakes swirling down from the sky, my mom holding me, and reading to me a story about a mouse.
It’s difficult, I think, to really describe how I think and perceive things. But this is a start for me, and I hope it has enabled some of you to understand the mind of a child with AS. The film reel continues to roll, each day recorded and filed away in my mind for perfect recall later. Memories of early childhood are a theme for some children with AS, as are sensory processing disorders, anxiety, and fear. All of which I feel contributed to my night terrors. This is just the beginning. As the reel continues to roll, these words will continue to flow from my fingers, as natural as the silent flow of water over the rocks of my beloved creek in Juniper Hill.

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Face blindness, or prosopagnosia, is said to affect many with developmental disorders, such as autism spectrum disorder and non-verbal learning disability, as well as those who have suffered from some forms of brain damage. Again, in view of the fact that I have both a non-verbal learning disability and ASD, it would appear that I really am a textbook case for all things ASD related. So what is face blindness?
The simplest way for me to explain it is to blend a little of what the experts say with a little of how I perceive it to affect me. For me, face blindness means that I have extreme difficulty recognizing people. And it doesn’t matter if you are a co-worker, a friend, a family member, or even my husband Dale, I simply will not recognize you right away and certainly not from a distance, even a short one. I also will not recognize your voice over the phone, for what I believe carries the same explanation. This is one reason that I thank god for cell phones and caller ID, so I know who’s calling. That, however, doesn’t lend me a hand when I call others, which makes me anxious, and unfortunately prevents me from making many phone calls, unless I know for sure who’s going to answer the phone.
From what I understand, my differently wired brain remembers people through a combination of factors, such as mannerisms, voice, and the way they interact with their environment, instead of solely on the visual processing of a person’s face. So until these things are observable for me, I don’t recognize you. And I’m not kidding when I say I don’t recognize anyone, even family. It’s not until a person gets close enough for me to hear, see, and study that they begin to look familiar to me. This process can take several minutes of close up interaction.
For those of my friends who wonder why I often ask them to meet me outside of a restaurant, and for those who wonder why I prefer email and texting over actual phone calls, you now have an answer to that question. It’s because it makes it easier for me to find you, recognize you without wandering aimlessly through a crowded bar, peering into faces and disturbing people. And it makes it that much easier on my anxiety levels as well. If I do have to find you in a crowded place with my anxiety at a record high, it will then turn on the auditory processing disorder, which will have the undesirable effect of making it difficult for me to understand what you’re saying as well. And when it comes to phone calls, I have only a voice to go on. No mannerisms, no interaction with the environment, and no expressions. Although eventually, I will recognize your voice, it won’t be until long into the discussion, with laughter being the trigger for my recognition. My suspicion is that laughter is musical, which is like heaven to me, and has always served to calm and soothe all of my senses.
I find it interesting that face blindness is often seen concurrently with abnormalities in EEG measurements (what you might think of as a brain scan). I too have what are considered abnormal, unchanging EEG measurements, consistent it would seem, with face blindness and (I believe) 30% of those on the autism spectrum. What I also find fascinating is that I have no trouble recognizing people in photos. The research seems to support that there is indeed an emotional aspect to face blindness. In other words, your photo is just a picture of you, a simple object, it’s not a living, breathing being, interacting with anything.
Face blindness played a somewhat distinct part in the finding of the pieces to my personal autism puzzle. How many times, as a teenager, had I walked past someone I knew in the mall (for example, boyfriend mentioned in earlier post)? How many times had I been labeled a bitch, or stuck-up by those I wasn’t even aware of, when they were trying to catch my attention? I always wondered why I could never find anyone I was looking for, recognize my friends on the phone, or why I continuously piss people off by failing to acknowledge them in Home Depot when they were three feet away from me. I don’t know how many times I heard through a third party that so and so said I was a cold, unfeeling bitch. And for the longest time, I thought I must be. I know better now, and I’m not afraid to tell others about any of it. And that’s why I’m here, writing. So that maybe, the next time you meet someone you know (from work maybe) and they walk right past you in the grocery store without saying hi, just maybe you’ll remember my story. Just maybe, instead of thinking, “What a royal asshole!,” you’ll give that person the benefit of a doubt. Instead, hopefully, you’ll cut her a break and think, “Hmmm…maybe she’s on the autism spectrum.” At which point you’ll walk up to her, and say, “Hi. I don’t think you saw me back there.” It would mean so much to me, and all of us spectrumites, if you did that!

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“And I raise my head and stare, into the eyes of a stranger…” ~ Queensryche.

“I’ve always known that the mirror never lies.” This is the next line to one of the most tortured of Queensryche’s lyrics, although for me, while I do see a complete stranger gaze back at me from the mirror, it is indeed the mirror that reflects nothing to me but lies. It is contradicting, and downright mind numbing, to exist as two separate people, to not know whether what I am seeing is a lie, or whether it is merely a layer to another, deeply buried personality. Which one of us is real? The frightened, deeply saddened little girl with autism, or the self-confident, seemingly fearless woman who blends so well now into the neurotypical world, that only very few can detect my differences? I promised, weeks back, to discuss the mask I wear each day in order to fly under the radar of the label of strange, or the discovery of my autism. I promised to write about how the only time I am comfortable enough to strip away the mask, and be my REAL self, is when I am in foreign countries.
So this is tonight’s topic, providing that I can finish it before the pumpkin turns into a coach for me, and whisks me away from the laptop. I’ll start by talking about the mask I honed perfectly, probably starting from the age of 5, which is when I first came to realize that I was different from other people. And yes, I do remember all the way back to my toddler and infancy years, which is common with many on the autism spectrum. But until I went to school, I perceived no differences between myself and others, I was not subjected to torment by my peers, was not given any reason at all to change my appearance to others, there was no incentive for it. My family accepted me the way I was without question. Did it matter to them that I was speaking in full sentences before I could even walk? Did they care that I never made eye contact, or changed facial expressions, or spoke in a monotone? No, as my father once said, “We always knew you were special, and that was it.” Special, different even, but not wrong.
It wasn’t until I began kindergarten that I realized, in my mind, there was something very wrong with me. I had no desire to interact with other children, in fact, I found them quite annoying. They were loud, their movements were quick and frightening, and I rarely understood them. Every sense of mine was made raw in the presence of other children, my ears hurt, my eyes hurt, and my mind hurt. And I had no way of ever knowing how to communicate any of this properly. To me, I was behind a thick, impenetrable wall of glass. I could watch the others play, but I could never participate, never understand the social intricacies of child society. I was alone, and so I preferred it that way.
But this is not something positive, not once it has been observed by the other children. The lone child is marked immediately, from day one, and with no understanding, my own behaviors only reinforced the abuse I received on a daily basis. But I digress.
From that day forward, slowly, and I do mean ever so slowly (as I am STILL learning to this day), I learned to protect myself, to try to crack the complex social code that mystified me, and continues to elude my understanding in many ways today. It wasn’t until junior high that I really figured out that I needed to watch others closely, watch their interactions, listen to the way they talked to each other. It was purely a driven instinct of survival, because I felt that I was fragile, porcelain in structure, and that anymore rejection would completely and utterly destroy me. I became, in effect, an anthropologist on the down low, unobtrusively trying to discover what was normal, and wrestling with my perceived demon of what made me so bad and undeserving of friends.
By junior high, I had a better grip on what was expected of me as a girl, and I tried as hard as I could to fit in. The anxiety was almost paralyzing, but I worked through it, devising various methods that seemed to work. For example, the lunch line was the most terrifying and dreaded part of the school day for me. My first experience with the lunchroom sent me into a full-blown panic attack, one that I was determined never to expose to my peers. I had come from a catholic elementary school with no cafeteria to prepare me for the onslaught of the senses that I was to be introduced to. Have you ever watched the HBO movie “Temple Grandin?” Remember the scene where she goes through the cafeteria line, only to be reduced into complete meltdown mode? That was me, although I hid mine better. The noisiness, the burning fluorescent lights, the kids pushing, the annoyed cafeteria women, no one to help me to pick something simple to eat. I left the line, and only rarely did I return, and that was when I was with a friend who could act as a calming inducer to me. Yes, I did manage to make a few friends in those dark years. I devised a system, which was as simple as not eating. The anxiety actually overrode my hunger, my need to eat. And when the stomach pains came, I yanked out a bottle of extra strength aspirin and downed a few. Did I understand that aspirin was not intended to quell pangs of hunger? Did I know it was harsh on the stomach and liver? No. Remember, many people on the higher end of the autism spectrum may be gifted IQ wise, but we are years behind our peers mentally and emotionally. Naive. Innocent. Whatever you want to call it, there it is.
While this wasn’t really a way to understand social norms, it hid my glaringly obvious anxiety from those I felt would try to hurt me. It hid my vulnerabilities. Or at least I felt that it did. And it was the very beginning of the complexity that is the mask.
By high school, I had learned that there were things you didn’t say, that you weren’t supposed to speak your mind, and it was accepted, even expected, to tell white lies. Friend: “Does my hair look nice today?” Me: “That rat’s nest? Hell no. You need to fix that!” Acceptable? NOT! Instead, “Why it looks gorgeous, of course!” Better, right?
So on and on, the glass wall still there, as thick as ever, but now, this time, no one but me is noticing it as often.
My most progress did not come, sadly, until the age of 28, when two acquaintances told me that they didn’t trust a word I said. “What the hell does that mean? I never lie, it doesn’t even cross my mind to lie to anyone about anything!” After all, I had to train myself to tell white lies for god’s sake. “Well, you never make eye contact,” they said, “That’s what liars do.” Again, I was blown away. Next came, “Why do you clench your fists all the time? Are you gonna go crazy on us?” So I realized then, that I was doing something seriously wrong with my body language, bordering on that of the criminally insane. And making no eye contact appeared to be an insult of some sort. I knew then, that I would never, in a million years, be able to get a good job and support myself, something I badly wanted to do. To prove them ALL wrong, to show them that I was not as worthless as I allowed them to make me feel. That may have been the most influential two instances in my life.
I fervently began to immerse myself in the “Anthropology Project,” as I call it, determined to out best their snide remarks. I read about body language, what was expected, and how hopelessly unnatural it was going to be for me. I began to force myself to make eye contact (yes, at age 28), it scared the hell out of me, overwhelmed me with the other person, made me sick to my stomach, made it hard for me to hear and understand what the other person was saying, but I knew it was the only way. Now, if only I could determine the right sequence of eye contact. How much was too much, how long was too long? Where do I look when I’m not looking at the other person? I read somewhere that it was 50/50, so I estimated and began experimenting. Normal body posture for me? Stiff, fists clenched with anxiety. All wrong, right? So I learned to consciously relax my body. (I’m still not great at this because just a few weeks ago I needed a vaccination and the nurse told me that my arm was not relaxed enough. I laughed quietly to myself, knowing that if she had seen me years ago, my arm would have had the stiffness of a Victoria’s Secret lingerie mannequin.)
I learned never to clench my fists, especially since, if TSA decides to utilize body language analysis through security, I’m pretty much screwed. I’m already an anxious and sensory overstimulated mess going through security as it is, I don’t need them whisking me away into the interrogation room on top of that. I found other ways to cover up my missing social cues. The monotone of my voice? If I force myself to smile when I talk, it lessens the non-expressiveness of my voice considerably. I still sound like a robot when I create my own voicemail, but at least no one accuses me of sounding angry and irritated when speaking to me over the phone anymore.
Conversational skills were tougher. Small talk? I still don’t get it. So again, I listened to others. What does someone say to the question, “How are you?” It rarely is ever the truth, right? A simple “Good, thanks,” will do, maybe even, “Good, how about you?” I thought people really wanted to know, but of course not, it seems closely woven into that “white lie” thing to me.
So each day that I leave the house, I pull on the “I’m NORMAL” mask, maybe a better description would be a costume. Yeah, a far-fetched, outlandish and goofy looking costume. I like that. Or maybe I’m Catwoman. I have enough cats to qualify for that. So as I drive in the car, I remain the autistic me, blank expression, probably more relaxed than before, and usually singing to the music I play, which calms me and prepares me for the superman move. You know where this is going…that’s when I pull on my superhero non-autistic personality costume in the car before I get out of it. The smile comes on, the voice takes on a lighter note, maybe an expression to go with the smile, the relaxed body posture, and the eye contact. It certainly feels superhuman to me, and after all, I’ve got all the super senses to go with it. So there, I’ve taken myself from scarily weird to superhuman within one discussion. Something only a person on the autism spectrum could do, I assure you.
What I’ve noticed about myself, that has completely changed the way I regard the mask these days is the way I feel when I’m traveling. Specifically, foreign countries. That mask dissolves completely, and I feel no need to drag it out of my huge bag of “normal people tricks.” I feel free, free to be myself, and for whatever reason, when that happens, the autistic side of me vanishes into thin air, like a ghostly apparition. I am happy, free from anxiety, free from the concern of what others will think of me. I am, for once in my life, really and truly that person who gazes at me from the mirror. I am whole, healed, one person, the great wall of glass naught but a distant and disturbing nightmare of the past.
I have my theories as to why this occurs. For one, I have no day-to-day drudgery to turn on my anxiety button. And two, which I think is the most influential, is the perception that I am accepted. If I do anything that does happen to be unaccepted, it will be written off as “Well, she’s a foreigner, she doesn’t know any better.” If my auditory processing disorder kicks in and I can’t understand someone, I don’t get the “she must be retarded” vibe. I get a slower, more carefully repeated wording. An explanation I understand the second time around, without feeling as if the other person believes that I’m merely not listening. A forgiveness, again, maybe because I’m foreign.
The key here is that I feel acceptance, and where I find unquestioned acceptance is where I will be freed forever from the stigma of my past, and you can only imagine how delightful that is for me. I have come to realize that the life of a permanent wanderer will yield me the greatest fulfillment in my life, the most healthiest I could ever hope for. So with this analysis, I have begun to research the Peace Corps, the completion of which, I might add, I have dreamed of since the age of 9. Never before would I have had the courage to make that leap.
And it is to those out there, who were the most cruel to me, that I can now thank. Thank you, however you made me feel about myself then, you have shaped me into a undefeatable, unfathomably strong person who is no longer afraid to attain my dreams. Because of your cruelty, I will never, ever, be that lost, scared and crying little autistic girl in the corner of the playground ever again.
Namaste to you all, each and every one.

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What is it like to have an auditory processing disorder? What exactly is an auditory processing disorder? I’ll tell you, it’s pure madness. Plain and simple – it’s as weird as weird can be. But it’s also quite amazing, as is sensory integration dysfunction, in the way that it illustrates the intricacies in the way our brains work and process information.
You would think that having super sensitive hearing and an auditory processing disorder might sound like an oxymoron, but it isn’t, because they are two extremely different functions. Auditory processing refers to the way our brains process what we hear, and organize all that sensory stimuli into something that makes sense. See here for a better description: http://en.wikipedia.org/wiki/Auditory_processing_disorder
Not always the case for me, as you will see. A lot of the time, I have to work hard in order to “figure out” what I’m hearing. It has always been this way for me, although I never understood how or why, until my diagnosis.
Auditory processing disorder is similar to sensory integration dysfunction in the way that the wiring of the brain is quite different from most. It’s like over stimulation (maybe hearing and other senses) causes something to become lost in translation. Too much coming at me at one time will cause a major malfunction, and I don’t know if it’s due to the over stimulation itself or the anxiety that the over stimulation causes.
I can tell you that it has often resulted in a number of unintended social mistakes that have taught me to either quickly cover up the mistake or risk exposing my idiosyncrasies.
For instance, in anxiety causing situations (like a party or a noisy meeting, or even out shopping), I seem to lose my ability to understand people. This manifests itself in numerous ways. Sometimes, someone will say something to me, and all I hear is mumbo jumbo. A completely disorganized, alien language, with no recognizable content presents itself to me. Other times, I’ll hear some words, little bits and pieces, while the rest of the words seem to vanish from existence, leaving nothing discernible for me to even attempt to comprehend. “What the hell did you just say?” immediately pops into my head, but experience has taught me it isn’t really socially acceptable to say that. 🙂
Before, I would often panic, and have no idea what to do. In other words, I looked like a freak. These days, I’ve learned that it’s okay if I must ask someone to repeat themselves. Sometimes, I’ll look to my ASD aware companion for a coherent translation.
There are other aspects of the condition that are strikingly fascinating to me. And I’m not completely positive if they all are a result of the auditory processing disorder, but they seem to fit in here, so this is where I’ll squeeze them.
Oddly enough, I don’t seem to hear people unless they’re in my field of vision. So if you’re shouting my name at me across the mall, chances are pretty good that I won’t hear you. And if you aren’t close enough, I won’t even recognize you, but I’ll talk about that later. Obviously, I’ve been in many social circumstances where I didn’t hear or recognize someone, only to be labeled as a snob, a bitch, I don’t know what else. Big social faux pas, let me tell you.
My earliest memory of this social catastrophe occurred with a boyfriend. We were at the mall with a few friends, but had separated for a little while. Wouldn’t you know, I glided cluelessly by him, chatting to my best friend, while he was calling to me and waving? Only to realize that I had done so as a result of my friend bringing it to my attention? Teenage social disaster!!! How do you explain that one, when you don’t even know why in hell it happened? Is it believable to say that I’m that much of an airhead? Some would agree with that statement, and I know who you are too!
Needless to say, he was upset. Here he thought I was playing head games, when the joke was actually on me. Okay, I know you’re dying to know, or maybe you aren’t, what happened after that? Well, he wouldn’t talk to me, he left the mall, I left with my friend, and a few hours later we made up. But to me it’s just an example of the many social challenges ASD can present to a person, especially when you have it unknowingly.
Apparently, one of the signs of an auditory processing disorder is the need for language and speech therapy, which was necessary for me in third grade. So again, I fit neatly into the ASD textbook. Advanced speech prior to learning to walk, late walker, but a need for speech therapy. My pic should be posted as part of the description LOL.
I think one of the funnier, but more startling aspects of the auditory processing disorder occurs under extremely loud situations, like a concert or a convention. Sometimes, out of the blue, through that huge cacophony of merging voices, I’ll hear what someone far away has said, as if they were right next to me, whispering into my ear. Kinda creepy actually. I’ll turn to the person next to me to inquire or answer, and I’m met by the strangest looks sometimes. “I didn’t say anything,” is the alarmed response. Again, the joke is completely on me.
So what I’m saying here again is, if you see me in a crowded place, staring right at you, walking past you as you’re jumping up and down in your attempt to get my attention and I still fail to respond, please don’t take it personal. You might have to actually tap my shoulder or grab my hand, and then you’ll see the dawning recognition as it flows across my pleasantly surprised face. Either the auditory processing disorder kicked in, and your signals to me weren’t processed in this creatively wired brain of mine, or the fact that I’m face blind prevented me from recognizing you. Maybe both. Anyway, I’ll talk about face blindness another time. My electricity just came back on and it’s Saturday night. 🙂
Until next time, Namaste!

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