About autisticaplanet

My photo
Welcome to a blog about an autistic adult woman in her late 30's using words and images to advocate acceptance as well as awareness of those with life-limiting sensory processing issues and resulting social and behavioral challenges. I write about inclusion ideas for those who remain in isolation due to their neuromakeup and share how my Christian faith keeps me going. Thank you for visiting.

Tuesday, November 29, 2016

Through 1 Filter or autisticaplanet's autism blog? Let me explain!

Camera filters overlapping 4 pattern
Update 3/4/17: I have a confession to make. I am autisticaplanet from Wordpress. I moved back to the place my blogging journey began back in 2008 last September, after realizing that the power of words is, at times, too much for me to bear sanely and respectfully. Wordpress allows comments to be disabled on the blog's page, but there is still that sidebar on the upper right that cannot be blocked. 
Some of you may remember me from Wordpress. 
Using "Through 1 Filter" my first 3 months back allowed me to recover for a while and keep any outraged followers/commenters from rejecting my posts due to seeing who their author was.
I have decided the time was right to take my old name back. The current URL will remain.
"I'm not that good with people."- John Malkovich in the movie "Making Mr. Right"



Some FAQ you may have about this blog:


What does the title of your blog Through 1 Filter mean, anyway? I am one person who is sharing my experiences using my own, unique filter. A camera with a filter on the lens is a good metaphor.


Why "autisticaplanet"? 
I'm autistic, and the a in the middle is the initial of my first name, Allison. Occasionally, I will use it in my posts, but prefer to use my screen name primarily online. The planet part comes from the fact I am isolated from communication and services due to my seemingly unique severity of sensory symptoms for someone with Asperger's Syndrome autism spectrum disorder.
What's with the changing wallpaper? I like to *change* the wallpaper up now and then to showcase my photography periodically. Yes, a person can be autistic and want change once in awhile. It's not an oxymoron😉


Why do you use such big font?
Because, I'm getting older and I can't read 12'' or under very well.

I am a visual learner. Reading isn't the main way I learn. Pictures, lots of bold colors and large, bold font help me to retain what I learn better.

Why don't you allow comments? Because I don't need to be called names or called out for being me.
I don't do well relating to others when I can't hear their voice. I am deeply emotional and take things to heart. It is best I keep this blog's communication one sided.

Why do you use an avatar?  Because I don't feel like using my real face right now. I may do so next year.

Can I share your posts? As long as you give me name credit (ex: by autisticaplanet/from autisticaplanet's autism blog) it is fine.

Are you on social media? Only with family.

I hope something you read on this blog will encourage you in your faith, educate you about life with autism and captivate you with nature photos.



One of my hobbies: Making stretch bracelets


In 2015, I began making stretch bracelets. It is simple enough given my fine motor skill impairment. I infrequently make a little cash in the process. I love to make a product that anyone can afford. I enjoy giving them away as well. 
I can contribute to a world that is very difficult for me to participate in. I give thanks to the woman who sells them in her store for me. She is one of many blessings in my life.

If you want to get into stretch jewelry, I recommend Michael's craft stores. They have the most variety and cost range.
I use Stretch Magic 1mm cord. They also have 1.5mm. Nice and big to hold onto and knot. If you are gross motor skill impaired, this hobby will most likely not be a good fit for you. Michael's has many hobbies, including adult coloring books, scrapbooking and kids crafts. Hobby Lobby has a lot of pretty stuff, but they are a bit more costly and not as varied in their selection, at least when it comes to bead selection.

If you have a disability and are homebound most of the time, I highly recommend a hobby. Blogging is a hobby. It is a good grounding technique and a distraction from depression and anxiety if only for a little while.

Sunday, November 20, 2016

On the fringe: autism and family gatherings

Child covering ears
Family gatherings are noisey. There are a myriad of voices that range in pitch and volume. There is that one person who laughs so loud that tears well in my eyes. Boys yell and bang on the piano. Someone is taking a photo with flash. Greeting people is part of being polite, even when you are already in sensory overload. Perfumes and colognes combine and foods from the kitchen circulate. Men yell at the football game and women laugh at something funny. 

All this is taken in at the door. There is a long way to wade through before I can put my coat in a quiet bedroom. I have to remember to smile and say "hello" as well as accept hugs.

There are a few cousins who cannot stand my presence, though, at age 5, I don't know what I could have possibly done to upset them.

I am asked, "Why do you plug your ears?" I am told repeatedly that nobody wants me here. I am the only one who isn't part of a group. Sometimes, I get bullied. A parent will stand up for me only to clash with the parent of the cousin who pushed and threatened me.

I escape into walk-in closets, barring the door. I stand on the fringe in doorways and hallways. I occupy the empty rooms, sometimes in the dark in tears. I wonder what is so bad and inconvenient about me.

I have a cousin with ADHD and he does quirky things. Everyone laughs and encourages his behavior.

I tell on my cousins as they throw towels at my grandma's cat as she is trapped on an island counter in the laundry room. Both the cat and I still get whatever they can throw at us.

Now I'm a teen-ager. I get older and my meltdowns are violent. I'm still undiagnosed. I am screamed at and told I will "get my ass kicked" if I don't stop screaming.

I am told to "get a life" or judged a "retard". Somehow I find myself giving thanks in my head that I come from a 'normal' (extended) family and at least I don't get bullied by my (extended) family.

Except I do get bullied and excluded.

I reexamine my eleven year old brain that gave thanks alone in the hallway and find that I only relate bullying to school. I am 37 and now know that bullying extends outside of school.

My parents get judged and the sentence is pronounced: they have a spoiled brat for a daughter. If only they would use a little discipline. 

I will clarify that each gathering wasn't a medieval torture event. What I am describing is a mosh-up of many family gatherings over many years. I was shown love by my grandparents and one aunt. 

Even the bully cousins were nice once and awhile-especially when nobody was looking.

I am convinced that there is a double standard when it comes to the erratic behavior of girls and boys.

I finally did retire from going to family events in 1998 with Christmas being my last show. The disrespect and isolation were too much along with the worsening of my autism symptoms in my mid teens.

I know I am someone on the fringe. I don't find my voice with either the neurotypical or autistic crowd.

I'm too much this way and not enough that.

God allowed me to be born the way I am, and if it is fine with Him, that pretty much vetoes the discontent of the dissenters.




Some advice for autistic people and parents of autistic kids attending family events: 
Bring earplugs or earmuffs to family events. Bring something to do such as coloring books or an iPad with games and videos. This shouldn't replace visiting with family, but serve as sensory retreats during the visit. If you are a parent, introduce your child and talk to family about why they are different. Tell them this doesn't make them bad. Stick up for them when they are little so that they will have the self esteem to do so for themselves when they are older. Stress strengths. Don't force someone to stay for hours on end if they can't handle it, have an exit plan.

Here is a source to buy sensory friendly toys and stim stuff: https://www.nationalautismresources.com/family-members-featured-products/

Here is a link to a Facebook page from 2011. Though it's old, the tips are timely. https://www.facebook.com/notes/childrens-national-medical-center/holiday-survival-guide-from-our-center-for-autism-spectrum-disorders/10150539604688792

How to create a sensory friendly dinner: http://www.carolinapeds.com/2013/11/how-to-have-a-sensory-friendly-holiday-dinner/

As I've mentioned, I was loved. Those who cared about me did the best they could in a time when a diagnosis of Asperger's either didn't exist or was not on anyone's radar outside of neurological health circles. I hold no grudges.


Me with my grandpa, 1998


Me with my parents 1989










Friday, November 18, 2016

Year of the "travelling" earmuffs 2016

At the state park

By the water

At the supermarket

I chronicled 2016 by taking one picture of me per month with my pink Pro Ears 33 Ultra passive sound blocking earmuffs. They take the edge off of crying babies, barking dogs and heavy traffic. Most of the time, I don't get stared at. I never go out into public without a safe person so I won't be bullied. 
I have earplugs (I prefer silicon), but they either won't stay in for long periods of time or block too much sound when I need to hear someone speak. Pulling them out and back in is uncomfortable, so I wear the earmuffs. Pro Ears has a cushioned headband, which is a must for me. 
Here is a link where you can buy ear "gear" as I like to call it: www.earplugstore.com
Earplug Superstore is legitimate and friendly. Earplugs, earmuffs, white noise and more. They have friendly staff who will help you find the right product.



Why change is so hard for me and what I do to prepare ahead of this challenge

New things present as an uphill battle. Change is scary to me unless it comes on my terms. Maybe this is why I did poorly understanding Algebra. There's always a variable. 
I don't intend to be difficult or selfish. Having a battle plan is how I make sense of life. Adaptation is a skill that comes naturally for some people, but not for me. 
I find having a plan B is a good idea. For example, if you plan on going to an outdoor event and it rains, scheduling a rain date ahead of time. The rain date can substitute for an unexpected illness as well.
There are some changes that are inevitable like losing a loved one, and that is something that takes prayer and time alone with God. Having family and friends who can help by listening is also key. 
Ultimately, trusting in God, not circumstances, to be secure in this life is both necessary and difficult to do, but it is worth the effort.
"And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them." ~Romans 8:28 NIV

Wish for companionship, acknowledgement of emptiness

Taken during a visit to Anderson Japanese Gardens in Rockford, Illinois, USA. To me, the empty chairs are the symbol of human connection I wish I could have and the emptiness that is.

I can't handle much, but I would like more than I have in my life now.

Here is a link to a really awesome and simple free photo editing software site:https://pixlr.com/express/

Monday, November 14, 2016

The Onion in the Petunia Patch



The Onion in the Petunia Patch PDF

This is my memoir compiled over the last 2 years. It is one woman's story about growing up with undiagnosed autism. Click on the link to view the PDF file. Thanks for reading!

https://docs.google.com/viewer?url=https://www.freepdfconvert.com/result/downloadfile/fbe6b521-dd97-48b0-8086-388847c77bef


Contribution



Recently, I have had the privilege of becoming a contributor to The Mighty, a blog of many voices on all kinds of illnesses, diseases and disabilities. Check out the link here: https://themighty.com/2016/11/understanding-my-responses-to-sensory-triggers-related-to-spd/

I hope to get the word out about accepting and accommodating autistic people rather than judging and excluding them. The irony is that I do wind up feeling isolated due to the components that make up my autism.

1. My I.Q. is 110, but I struggle with sensory processing disorder in a very life limiting way.
2. Due mainly to the sensory processing, I don't get to do things like go over to people's houses (I also can't drive for the same reason) or go to restaurants. If there is a baby or a dog making noise, I must have a plan of absolute escape.
3. My meltdowns are horrors. They present more like a nonverbal, intellectually disabled autistic person's. Guttural screaming and hitting myself and others are two characteristics.

Most of the judgement that I receive can be summed up the way a judge once put it, "How can someone so smart be so stupid?"

She had been reading some of my poetry while on the bench. I was in court for throwing a canvas I had painted at a Borders bookstore manager for yelling at me and being sarcastic at the same time.

Autistic people deal in absolutes. I was told that the poetry reading was on over the phone, and arrived to be told it was cancelled. My mind could not reconcile the conflict. I was also stressed out due to being in public. The man yelled and used a sarcastic tone. I lost it. He threatened to call the police and did.

This is why I don't go into public place alone anymore. I have a safe person or I stay home.

Intelligence or lack of it doesn't determine how the chips fall when the abnormal brain is forming.

This is why I argue that autism is a disability, not only a way of thinking differently.

I hope to contribute more to The Mighty and a few other blogs.
One thing I refuse to do, however, is compromise my beliefs for gain.

I am an autistic woman who hates books!


I hate books.
I cringe just looking at them.
I won't read one unless it is a serious matter like reading the Bible, and I only do so for short bursts.
I opt for the audio version any time I can. This means there are tons of books I can't read, as there is no audio book or the audio book is very expensive as is the case on iTunes (usually $40.00 and up for 300 pages).
Reading for any length of time makes for a migraine.
I am a visual and aural learner. Words bore me silly. Black on white mush.
I won't even read a blog post past the 500th word.
I skim read after that.
I try to keep my own blog posts short and provide visual "breaks".

How did I survive school?

Textbooks were broken down into chapters, so there wasn't a whole lot to read for homework, which was accompanied by taking notes and/or a worksheet to fill out.

Novels and plays were read in class. Kids took turns, myself included, reading brief passages.
If there was more book than class time, again, a couple of chapters were assigned for homework.

There was an absolutely stressful time my sophomore year in which I had to read a very long story as a separate assignment. I obsessed about getting it finished every chance I got.

I feared failure as that could mean getting held back. I obsessed over getting the best grade I could get, which was about a B average.

The only time I enjoyed learning is if there was a filmstrip or video.

I did enjoy writing and took a creative writing class. There was not much to read. The teacher didn't use a textbook. She gave oral assignments and assigned projects based on topics like, "What is your favorite band and why?"

I tried to write a novel one summer. I couldn't manage different characters with different personalities. It was more than my brain could handle. I write best in short bursts and from my own point of view.

I hated essay writing.
Poems, prose and later blog posts would go on to serve as an outlet for my creative brain.
I have written a PDF 29-page book combining blog posts and some biographical writing.

I do better when I have a photo for inspiration. I write what I know and try to show rather than tell, two rules of writing I learned in creative writing class.

I would be absolutely lost without spell check as my motor clumsiness makes for erratic typing and lots of typos.

Some people like to write via speech using software like Dragon. I think best through my fingers. Speech isn't so easy.

I've read lots about autistics loving to read. It is a disorder of opposites. I hate to read, but I thank God I can read.
I thank Him that I get to live in a country where every child is assured a free education. Where I can own a Bible in my home and not fear for my life.

Crying in the car



I used to cry on long car trips as an infant up until age 5. It wasn’t due to boredom. It was due to sensory processing disorder than accompanied my (undiagnosed back in the 1980’s) autism spectrum disorder.
My mom rode in the back seat to comfort me rather than quitting taking me out in the car.
            I fortunately outgrew this around age four. I do remember telling my mother later that it was due to the sound of the tires against the road that set me off.
            While I am blessed to have outgrown some intolerable sounds like the doorbell, others intensified as my brain continued to develop. Some examples include babies crying and dog barking.
            Some experts have theorized that it was solely due to my dad’s sudden death in my teens, but if that were the case, how would one explain the extreme auditory sensitivity before he died? How would that theory stand up in the wake of the progress I have made in the 21 years since his death?
            I should explain that I have long adjusted to my dad’s passing and the pain is no longer acute. I am now processing my mother’s death, which occurred nearly 3 years ago. My brain has been finished growing for 15 years (I am 37). No new sound issues or intensification with problem sounds since. I think this disproves the psychological theory.
             I was 20 years older when my mom passed in 2014 and have had beneficial therapy that has helped me to cope better as an autistic person. I'm not the helpless, inconsolable fifteen year old victim from 1994. I am now a 37 year old woman (with severe limitations, yes) who has Biblical insight, and is no longer in a place where she can be harmed and has come to terms with her limitations while celebrating her strengths.
            That said, I think the psychological and emotional only theory can be further disproved. Clearly, they factor in any person’s loss of a close person, but in the case of an autistic person, it isn’t the defining factor for brain development.
            My autistic symptoms were evident when I was still a 6-month (valuable) fetus. I didn’t experience any psychological trauma in my life until I was 11 and entered middle school.  Even then, aside from acute anxiety, my symptoms didn’t change until about age 16, two years after my dad died.
I think the anticipatory anxiety I experience and PTSD do stem from bullying (stalking and harassment as well as physical attack), but that in NO WAY caused autism or sensory processing disorder as I have already pointed out.
            P.S. I enjoy car trips, especially long ones. I can even tolerate the rumble strips near toll booths. I love seeing nature look out the window rather than plugging in to some electronic device. I love the moving feeling and never have experienced carsickness.

P.S. this is one of the most grammatically challenging posts i've ever typed.😣
           

            

Sunday, November 13, 2016

Late turning autumn tree


Normally, this tree would be as bald as Mr. T by late October. An extended Indian summer (interrupted by random cold days) has allowed the trees to keep their leaves longer.
Sometimes technology lends to nature, as in the case of this photo. I found pixlr express for desktop. I can create different moods and, in some cases, make nature look better. An overcast sky dulled a lot of things such as the hues of the background treeline.
I am reminded of Psalm 24:1-2


 God also puts His creativity in the minds of men, such as those who created this free software. May He be praised,
Amen.



Friday, November 11, 2016

Working in retail as an undiagnosed autistic teenager



When I was 16, I got a notion in my head that I needed to get a job. I wasn't ready at 15, when most kids in the U.S. start getting "legitimate" jobs-mostly in the retail industry.
I wanted a job to prove myself.
Nobody made me go to Office Max for an interview. I picked Office Max, because I loved how office supplies smell. I love to organize things and figured that it would be quiet (I don't know why) in an office supply store.
My mom let me know that there was no pressure from her. I think she was trying to dissuade me without making me feel like I couldn't do anything. She was willing to let me try.
The interview went well. I knew to dress nice and be on time. The man asked me questions like if I was okay with wearing a uniform. Yes. Was I OK with taking direction (that seemed like an odd question to me. I always generally did what was asked of me). Yes. Did I have a set amount of salary? I said no. I didn't know a job candidate had any right to name their own salary in 1996. The man shook my hand and thanked me for coming. I thanked him for interviewing me. I was told I would be called back and was.
I never gave a thought to whether or not he saw me not making eye contact, because autism wasn't on my radar. I wouldn't be diagnosed until 1998.
My mom helped me pick out a few uniforms. I made sure all my chores were done and the VCR set to record shows I would miss while working.
I could not have been more wrong about an office supply store being quiet. And this was before smart phones' blaring ring tones. Few people had cell phones in 1996.
Babies wailed and toddlers tantrumed in the aisles. The acoustics amplified the noise.
I had to check people out, including people whose kids were now crying and tantruming in checkout.
I had to get faster at it.
I was constantly asked if I was counting the cash back to the customers. I was.
The phone rang. I had to answer a phone. I had to give an obnoxiously long, professional greeting giving my name, the store name and asking them how I could direct their call. I wasn't very familiar with using answering machines and wound up speaking to them as if I had caught the actual person. Phones amplify everything, at least that's how it sounds in my ears.

My break came. 10 minutes for a part-timer. I cried the entire time, glad nobody else was back in the small break room to ask me why I was crying.

I cleaned up in the evening and tried to begin memorizing where the inventory was. I cleaned and put stray stock back where it belonged.

I was beyond exhausted when my shift ended. The store closed at 9pm, but my shift was from 6pm-10pm. They wanted me to work 2 hours more and get onto a work schedule that changed constantly.

The next day, the woman who was training me got mad when I couldn't unlock a file that was inside a built in safe box in a drawer. I didn't have the motor skills to twist the sticking combination lock right and left.
I was sent to one of the regular checkouts instead of the central desk and told to keep the candy supply stocked.

Was I still counting the cash back to the customer? Yes.

I scanned the wrong part of several tags and lost the store tons of money in a short amount of time. Fortunately, someone caught it and I didn't get in trouble.

The next day, I felt physically ill. I wanted to hurt myself. I didn't know how to tell my mom that I didn't feel like working anymore. I felt like a class A failure. I didn't know I was autistic. I knew I was super sensitive to many noises, some intolerable (like infants and toddlers screaming and crying), but I didn't know why.

I tried to cut myself, superficially. I banged my head against the wall in the shower. I finally screamed and attacked myself in the car as my mom turned into the Office Max parking lot.

I remember telling her "I just CAN'T do it."

My mom remained the calm and steadfast person she always had been. She drove me home and put me to bed. Then, she called my supervisor as I was too sick (I'd thrown up and I had a pulsating migraine).

I wasn't fired. I quit on my own terms.
My salary was above the minimum wage by about 15 cents.
I made $52.00 in 2 days.
It didn't turn out to be worth it but at least I tried. I found out what didn't work for me.

I would never work in retail again. I did work from home for a year via DHS, but the funding dried up for at home work.
I was also a cat sitter for one summer back in 2012. I enjoyed doing that as I like cats. I quit, however, when I was promised job security through Christmas and my boss changed her mind. I wouldn't be lied to and be fired unexpectedly.

As I don't have a mom to drive me (and rescue me as she did the time I couldn't turn the key to unlock the door at the place I cat sat) and can't cope with noisy public transportation, I won't be working part time anywhere.

I currently enjoy making stretch bracelets from the comfort of my own home. I can stim in my rocking chair and take things at my own pace. Sometimes, an acquaintance of my aunt sells some of them for me.

My sister (whom I live with) meets all of my major needs and I do get government benefits.

If you are autistic and looking for your 1st job, I would strongly recommend that you DO NOT apply in retail. It is too fast-paced and too loud. The fluorescent lighting in most stores is glaringly harsh.

Don't hate yourself if you don't succeed the first or fifth time. Know your strengths, but also accept your weaknesses. Some can be improved while others can't. I think that is true of all humans. It's obviously harder for autistic people to cope and be productive in a world that is too loud, too bright and too damn fast.

If you are diagnosed with autism, get a case-worker through HHS, someone who can help you find a job that matches your interests and strengths along with the most beneficial work environment.

I'm Generation X. I am glad there are more supports than what very little there was back twenty years ago. The Asperger's diagnosis was only 2 years old in the DSM-IV. Oh, and Bill Clinton was president.

If you are 18+ and have "aged out" of child services, check out these two links to HHS & DHS (Illinois residents).

 HHS http://www.hhs.gov/programs/social-services/programs-for-people-with-disabilities/index.html

If you are a resident of the state of Illinois -DHS  http://www.dhs.state.il.us/page.aspx?



Does autism get easier as one ages? A personal perspective



Based on my personal experience: somewhat yes and mostly no.
Yes, some of my sensory sensitivities become tolerable.
For me, this meant being able to go from screaming and covering my eyes every time a flash fired on a camera to being able to endure purple pupils following a photograph. 
By my preteen years, I was able to handle the doorbell ringing instead of freaking out by both the startle and the noise. What a relief it was that my mother could play the organ at mid-volume in the den next to my bedroom and I could handle it with my door closed. Being forewarned, I could even tolerate the vacuum being turned on and even being in the same room.
But by the time I turned 14, I began to notice increasing sensitivity to sounds already too loud, especially when accompanied by startle. I began to experience more meltdowns more frequently and much lower overall frustration tolerance.

Add to this intense bullying during middle school and high-school years and the sudden loss of a parent at age 14 as well as very little understanding and compassionate measures being attempted by professionals and first responders beginning in my late teens and extending into the present.

Cognitive behavioral therapy has helped me greatly. For example, I can understand the reasons behind why people in general act the way they do. I can cope (on a small scale) with the unpredictability of human emotions and resulting behavior. I can understand from an objective viewpoint some reasons why kids (and adults) bully (example: taking out on me the abuse they experienced at home).

The biggest thing CBT has taught me is that it isn’t all in my head or all about me. I am not only or always the main factor in why things go very wrong.

Tinnitus Retraining Therapy (TRT) though very expensive (my mom had to take out a loan), was very much worth it in terms of improving my loudness discomfort level (LDL) from mid 70’s to mid 80’s in each ear. I also wore white noise generators in both ears for a year following TRT.

Though I have made gains, I have also had to come to terms with the fact I will never be comfortable in the midst of small children (even when relatively quiet), dogs or the 4th of July.

What troubles me is that there are people who cannot come to terms with the fact I have come to terms with these issues.

I pray that in the very near future that there will be living and working solutions for severe sensory affected autistic people who are high-functioning (yes, the two actually do co-exist).

This means developing “sensory friendly housing” where people like myself can find refuge from the barking, screaming and honking world that is the reality (in varying degrees) of what I call “anything goes” living environments. I happen to have grown up and still am living in such an environment. I compensate via 3 white noise machines and sometimes wearing passive noise cancelling earmuffs. I am blessed to live on an empty-nester street and not have neighbors living next to the side of the house where my bedroom is located.

Both my parents are in heaven now, and time will tell when (not if) I will need to move. The main factor is finances as well as life choices on behalf of the sibling I live with.

Has autism got easier as I age? If I had to weigh my childhood against my adolescence and adulthood, moreover, I’d say no. I am not financially independent (in whole or in part). I still struggle to maintain friendships. I don’t have access to transportation unless someone is off and has a car.  I do not have the ease of being out in public places and handling auditory and social stress that I managed somewhat better with before my teen years.

Hopefully, these words I write will help to inspire those who want to and have the resources available to make these United States a palpable place for autistic people to live, work and recreate.

Calling all charitable people, realtors, land developers, social service workers, and politicians. 


“But the needy will not be ignored forever; the hopes of the poor will not always be crushed.” ~Psalm 9:18 NLT

Going for EEG Pt. 2- the test results

My QEEG test results


On May 8, 2009, I met with the doctor who did my QEEG (quantitative electroencephalogram) a few weeks ago to get the test results. He told me, in summary, that my brain is in a permanent state of hyper-arousal. 

They even have a name for this amount of extreme over-activity as it displays images of the affected brain in vivid yellow, orange and red-THE RING OF FIRE. It is also called this because the brain never calms down. I would like to state that I do not have a sleep disorder. The irony isn't lost on me, and I'm extremely grateful. 

In both the absolute and relative images, between 12 hertz and 25 hertz of power is where my brain takes on the all the attributes of a sun-storm.

I also show signs of stress disorder and a degree of attention deficit, though it is not ADD/ADHD. 
ADD/ADHD is caused by the brain working too slow to process new information. In contrast, my brain is working way too fast to take in much of anything. 

I had to take notes just to make sense of what the doctor was saying. This is a big part of how I learned in a typical classroom.

The rest of the test results confirmed what I have known all my life, despite being labeled a "brat", "retard", or "fraud" by peers or the medical community:

I have the inability to always self-regulate my emotional responses, especially when in sensory overload and/or experiencing acute anxiety. 

As I mentioned in part one https://through1filter.blogspot.com/2016/11/going-for-eeg.html, neurofeedback was prescribed, but after about 5 sessions, the co-pay proved too expensive. A girl has to eat.

Going for an EEG

Me getting an EEG in 2009


I am wearing a tight-fitting skull cap. The things on the skull cap are injected with gel and then wires called leads are connected to them. Before the skull cap can go on, though, I must have my forehead wiped with a gritty cleanser that will allow for the leads to get a "cleaner" picture of my brain activity. 

The skull cap has 2 straps that my mom fastens to my chest. It is now time for my EEG. Unlike EEG's that map out images of the brain, this one will be recording my brain waves. The objective is to find out if there is any disturbance in my brain waves, and if there is, enough to warrant intervention.

If you are touch sensitive, I do not see how you could have this test done. I am not touch sensitive, but I found when the gel was being injected into the little red things, it felt like my scalp was getting the injection. I even asked if they were giving me a shot in my scalp. They assured me I was not getting an injection in my scalp. I went to a neurofeedback specialist in Des Planes certified by the BCIA website. 

This was a blessing, since they were the only ones who accepted Medicare and Medicaid.
 It is not very often I hear the word "yes" when seeking help. 

The first test is hard as I have to concentrate on keeping my eyes closed for 10 minutes while the machine records my brainwaves. 

As a visual person millions of images pop into my head including the face of the doctor, the special place I have created as directed in my relaxation CD. I force myself to go there but my eyes flutter as I can hear laughter in the hall. I hear the doctor say "eye flutter". 

There are 2 students present. I assume he is teaching them. The images of their faces pop into my head. I worry that my mom cannot read her magazine article as she is in the same room with me and she must be bored. I find my way back to my healing place. More eye-flutter. Finally, part 1 is over. I am told I did great and the lights come on.

Test 2 consists of me keeping my eyes open with my head facing forward, but my eyes must stay focused on my feet

Since my focus is not very good, this takes real concentration. My mind is flooded with more random imagery and my eyes drift up to look at the computer. 

I can see my brain at work. I suddenly remember to re-position my head as it is now looking up past the computer as I am losing focus yet again and get back to my feet looking straight ahead. Fortunately this test only lasts 5 minutes.

The doctor is very familiar with people of all ages with autism spectrum disorder and says my brainwave activity is hyperactive and irritable. He says it is typical of what they see in ASD individuals. 

There is more than one biofeedback technique to use. 

By the way, 12 hours prior to an EEG you must not have anything in your diet containing sugar or it will throw the test results off. Eat a breakfast rich in protein. I had eggs and drank Lipton Green Tea (hot). Beans also are rich in protein.
Lastly: If you are getting an EEG
-Go with a licensed BCIA specialist.

-For this type of test go with a neurofeedback specialist (as opposed to biofeedback).

I had neurofeedback for about 3 weeks, 2 days a week. While I felt some benefit, the full effects were not to be experienced, the copay was too high.

Be sure to read part two here: https://through1filter.blogspot.com/2016/11/going-for-eeg-pt-2-test-results.html

Flashback Friday: Kids with autism are different, not less


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My grown up SENSORY FRIENDLY HOUSING wishlist


I'm not waiting for Christmas.

I compiled a wish list regarding housing that takes into account the special need of the ASD individual with life-limiting sensory processing disorder (SPD).

First, I state why living in an "anything goes" neighborhood (where most people live) is unhealthy and unsafe.


   -Randomness; lack of routine and predictability as faced in most typical living environments.
-         Chance for harm: victimization due to natural gullibility (lack of “street smarts”).
-         Lack of adequate transportation due to not being able to drive a car or tolerate the sensory overload of public transportation.
-         Staying inside, isolated from the community due to auditory and visual sensory overload.
-         High blood pressure due to pervasive environmental stressors like traffic, dogs, and children playing. and underlying depression that paves the way for other health problems like heart disease, hypertension, depression and suicide (not to mention worsening of related diagnoses such as OCD).
-         More reliance on Rx medication to combat anxiety and depression arising from a random, “one size fits all” sensory environment.

What I envision:
An assisted-living model facility for those with ASD with SPD in medical need of a low-sensory environment.
        
-Subsidized (at least a majority of them) so that those who don’t have rich parents can have a clean and safe place to live, covered by disability (SSDI) and any supplemental money they earn from employment (for those who can be employed). Section 8 or Section 42.
       Individual apartments for 1 person ( without children). This would not be a place for those wanting to raise families.  
        Transportation: service at little or no cost to residents.
-         Community room for residents to visit with and recreate with one another. that is sensory friendly. Appropriate lighting and sensory accommodating electronics.
-         No olfactory distractions like cigarette smoke. 
-Auditory sensitive friendly: Not a facility for individual dog ownership as their barks carry painfully loud,causing auditory distress. This would also prevent biting and messes. 

Therapy dogs could visit in a community room. 
Anyone who didn't want to be in the room could remain in their apartment during these visits.

- Exercise: Simple and accessible exercise equipment (treadmill, exercise bike, hand-weights)

-      Nutrition:   Green space outside for residents to form a community project such as a fresh garden to eat healthy.

-         On site case management, crisis management and counseling.

-          Employment opportunities: (for those who can work). This would include working from home.

-A place for worship (clergy from any faith could visit and hold services)

Those with autism and accompanying sensory processing disorder that make everyday life unlivable if not for special accommodations and supports will struggle long after this recession has ended. They won’t be able to have a place to live apart from their parents, work, or connect with others-something most take for granted.

Taking what I have written into account, I can personally say that I could be an asset to my community if such a place as previously described actually existed. The economy would benefit from whatever education and job-placement I would receive via an occupational therapist. I would benefit from being able to meet, make, and maintain friends in a low sensory environment.

Finally, parents could meet their Maker knowing their adult children are safe. Both can enjoy, worry free, the time they have left together. I wish I could say that was the case for my mom and me during her final months.
I should also say that this environment would be inclusive to the community. Residents with visitors of all ages would be welcome (providing they did not create an unreasonable disturbance to residents).

 Check out this link to see how a place for transitional housing is taking shape. It is a start. http://firstplaceaz.org/

I have touched the "tip of the iceberg". There is much more adults with ASD facing similar challenges can add. I hope this will encourage someone to do just that in their own blog post. Please share this post if it interested you. I don't see this topic being addressed enough.