Into the rabbit hole... [Part 1]

So, I have spent a significant amount of time on this post and finally decided just to break it up into multiple parts.  "Into the rabbit hole" will be a series on sensory perception from the inside out and comparatively between overstimulated and understimulated.

ENJOY:

If someone had asked me what it was like to have sensory perception issues a few years ago I would not have been able to put it into words that would have made sense.  Even after reading Temple Grandin's book all I was able to say was that EVERYTHING was TOO MUCH.  That is not quantifiable and mostly the response was 'just ignore it.'

Could you ignore it when:
- your clothing feels like sandpaper tearing off your skin,
- the fluorescent lighting is flickering right in the middle of your brain like fireworks,
- the sounds of the people around you just moving about resonates like the crash of the surf constantly smacking your eardrums,
- the texture of the fabric on the chair of the person next to you is catching their  clothing and making a sound that causes your teeth to itch and your skin to crawl,
- the person's gentle tap to your shoulder hurts like they shoved a red-hot poker into you,
- the uneven edge of the nail you just broke [or chewed off] catches on everything which hurts your ears but you're not sure why,

and all of these things [and more] you have to deal with happen at the same time, constantly, every second of every day but you still have to smile and shake the hand of the person greeting you [though it feels as they just placed a deadWETfish into your palm] and keep thoughts and conversations going like a "normal" person while not flinching or making a rude face, or screaming at them to back away and STOP TOUCHING ME!!! 

I think it has probably been proven that if someone is placed in a soundproof room [where all they can hear are the sounds of their own breath and blood] they will quickly lose their shit. So live in that box while carrying on all the activities of a usual day for 3 months. Then I'll visit you at the nut house and where you can tell me just to ignore it... Provided you can muster any response besides rocking and drooling on yourself.

For Alice the struggle is different yet similar.  There are times when sounds [like our own voices or the media we are enjoying - music, TV, etc.] sound louder or softer than others perceive the same sound, or the light is brighter/dimmer, the smell is a pleasant whiff/horrible smog...  but for Alice it is a constant struggle for enough sensory input: She sits at the buffet and starves [while I try to not vomit the excess onto the person next to me... enjoy your next crowded buffet.]

As a toddler, she would stuff her mouth; past the point of full and to the point of gagging; just so she could feel something on her tounge and between her cheeks.  We used special oral sticks with differently-textured ends to rub inside her mouth to give her that sensory nourishment she craved and desperately needed.

Sometimes I have to intentionally overload one of my senses [usually hearing by playing my music and singing along] just so I can focus on whatever needs my attention.  I loved driving my car and turning the sound up to the point that it filled the small two-seater with the vibrations of the bass and the beat and the mellow resonance of the singing voice.  That was my squeeze machine and everything was okay once I made it to the car.  Once I could no longer drive I had to find other ways to push the release button.  On more than one occasion this involved JD picking me up and driving me around with the music loud in his car.  Alice also needs extra stimuli to function but for her it isn't an overload of one sense to blot out the others but instead she has to meet one need [usually touch] so she can concentrate on anything other than the incessant need for sensory input.

Like Alice in Wonderland, but without her guide rabbit...

or psychedelic drugs.  As she rounded out her third-grade year, my niece [is she still my niece if her uncle and I are divorced?] began having marked problems at school.  She was suffering meltdowns, anxiety, stress, and a decline in her academics. 

JD mentioned it in passing so I got involved.

Background: Alice had been diagnosed with sensory processing issues as a toddler but where I am always overstimulated [and shut down] she is understimulated [and explodes].  When JD and I were married, we had Alice twice a week.  I knew I had sensory processing issues and was helping with Alice but I had no idea about autism at that point.

It was interesting to see the differences between Alice and me because it also allowed me to see more about how the sensory issues affected me.  An autistic in a sea of NT's may not always realize they are different, but start pointing out some differences in specific areas and I started to catch on quick.  Plus with Alice being 3/4 [the "Learning to express yourself" age] I was able to help her communicate her sensory needs while I learned more about how both of us experienced the world.  [More about this in a later post.]

Present: After discussing the situation with JD's sister I made some recommendations for adjustments at school.  When those helped I was welcomed to become more involved.  Armed with my new knowledge of autism I realized Alice qualified as autistic under DSM5 [but not DSM-IV].  At this point, JD's sister was not very happy with me but after she had some time to process [and talk with a JD who has much more understanding and care for who I am] she came to accept my opinion as a starting point.  It helps that the school counselor saw several of the same things I noticed.

So all my studying and research work served a purpose, JD and I have mended several bridges, and Alice now comes to my home once a week.  Her transition back to school this year was a pleasant one.  As much as I do not want kids, I enjoy having Alice back in my life.  Rocky still is not sure about her but it is funny to watch him sneak up on her then run off once she acknowledges him.

View from inside the medication...

Relatively recently, due to my anxiety and distress, I was placed on medication.  That sounds more terrible than it really is but I can admit to it.  I am also putting this forward mostly because I do not believe that people who suggest medication really understand that there is not magic in that bottle nor do I believe that children placed on medication possess the opportunity [and/or vocabulary/range of expression] to provide input regarding how they respond/perceive their prescription.

One of the medications I was placed on was for attention deficit [ADD, ADHD] and as I am an adult, I had some say in the matter and thus was able to pick a variety [ie: Ritalin, Adderall, non-stimulant] and have some voice as to effective dosing.  As it has been quite some time since I was last medicated it was interesting to note the differences between this time and last. [Also, the fact that I exhibit a pronounced sensitivity to medications, an ASD perk; I got to watch my medical doctor near-wet herself while the psychiatrist gradually ramped up my dose.] 

I have come to the conclusion that medication really is not a 'cure-all' as I still have days/times where I'm scattered, distractible, or hyper-focused except now IT IS HARDER TO SELF-MANAGE!  Biggeldy-puck, how frustrating! lol!  I have times when it is difficult to concentrate on a flow of related ideas but because the medication helps to concentrate focus, I get too focused on the distractions.  Then there are days where I focus so intently on one small faucet of a larger project that I spend all day completing nothing [literally Saturday I spent 8 hours on a spreadsheet for a worthless detail of a larger whole].  The medication makes it harder for me to self-manage on days like those because I am being chemically stimulated to focus.

Not that it is all bad.  The medication mostly helps me to concentrate on what I need to be doing so I do not perseverate on one thing, have anxiety because I am not focusing, then shut down and accomplish nothing. Plus it kept me from testing out classic anxiety medications which I was not looking forward to.

When I was initially placed on medication it was done in lieu of testing/diagnosis. I was placed on a dosage which "appeared to do the trick" so nothing further was done.  What actually happened was I was placed on a variety which I did not respond appropriately to and instead the medication just made me feel so nauseous and sick that I was incapable of anything beyond sitting miserably at my desk.  I was then prescribed a second [and unfortunately worse] medication intended to counter-act the nausea but instead tasted so awful that it boosted the nausea to vomiting.  After 4 years, my body finally adjusted so that I only felt ill instead of nauseous.  I can now attest [from the vantage point of a variety/dose that works] that the problem was that particular variety not working as it was intended.

Also, medication is not a replacement for knowing how to self-manage.

I am returning... and I intend to stay this time :)

However, I have learned that no matter how long I am gone from Twitter/the Internet/etc. there will always be something to write about when I return. lol

As my readers should know, I cringe anytime I hear the word "Autism" paired with anything ridiculously grandiose with a negative connotation [i.e. "Crisis"].

@BarackObama Address the current Autism Crisis! In light of the autism hearings, the time has come for answers! http://t.co/rN4MaXwv
— TannersDad Tim (@TannersDad) December 11, 2012

I do not wish to pick on @TannersDad as I both appreciate the other side of a debate and enjoy reading a different view.  I will admit that these words often frustrate me [as do many many more unrelated and mundane things - this is the nature of autism; low frustration tolerance] but I feel it is important to remember that there are different opinions expressed by people who are just as human as I am.  Also, if one assumes that their position is 100% right and everyone else is 100% wrong they show no grasp on the reality that truth is colored by perception, experience, and state of mind.*

Brace yourself; this is going to be a bumpy ride.

I digress, a little too late, but I do.  Actually, I am placing this part after the jump and continuing above, so unless you a psychic or you read after the jump, you have no idea I strayed so far off topic.  For you, thorough reader, I insert the following:

COMMUNICATION