About autisticaplanet

My photo
Welcome to a blog written by 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 disorder and resulting social and behavioral challenges.Thank you for visiting.

Thursday, April 20, 2017

The Onion in the Petunia Patch: Photo Gallery

Photo Gallery

Photography, more than writing alone, helps me to share what my mind is seeing. I see beauty in brokenness. Like an “onion in a petunia patch,” as my mother used to say, any dilapidated, odd or misplaced object has value to me. Dilapidated old barns and blown out windows convey to me that, though they weathered greatly, they are still here and will live on after their demise in my photos.

I have had the privilege of sharing my photography with MAAP Services, an Indiana based autism 501(c) 3. Donating my pictures and essays to MAAP  helped both MAAP and me.
I have also had my photos published in the Daily Herald Newspaper and online @ Broken Light Photography Collective.

"The broken window of opportunity" 2011

"Reaching Toward Heaven" 2012

"Water droplets on leaf" 2014
Next Steps 2016

"The key" 2016
"Sensory overload" 2014

"A family affair" 2014
Depression head 2015

All photos: Allison M. Kramer © 2016 all rights reserved
Blog: through1filter https://through1filter.blogspot.com/

Thank you for taking the time to read my "book". May it help you to better understand yourself, a friend or family member with autism spectrum disorder who isn't like the autistic people portrayed by actors in movies or soundbites on the news and the internet. That is the mission of The Onion in the Petunia Patch and this blog.

Sunday, April 16, 2017

The Onion in the Petunia Patch Chapters Four and Five

Chapter 4: Future Vision: My sensory friendly housing wish list
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, for me, 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). 

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. 

Chapter 5: Abuse of power

In May 2009, I had a violent meltdown that lead to law-enforcement and an ambulance ride to the E.R.
Upon arrival I was greeted by a screaming baby, one of the very things my ears just CANNOT tolerate. I covered my ears and begin screaming in distress and immediately I witnessed the ignorance, prejudice and abuse of my junior high and high school past was crashing down on me in adulthood. 
Several people were in the room barking questions like "What's your name?" "What meds are you on?" "Stop screaming, you're scaring the lady in the bed next to you!" On top of this, the baby is still screaming, which I am reminded "isn't its fault!" in a derogatory yell. I remind her through tears that I have autism and sensory processing disorder and cannot help my response, either. That brought a threat, "If you can't be quiet then we'll have to give you Haldol. You can't take Haldol? (I am allergic) I thought you didn't want to talk to me. Why are you talking to me now?" She continues to threaten that if I won't take it (which I don't) then she will go get security, so she does. 
I picked up the phone and called my mom, remembering to dial 9 first; as I am so familiar with hellspitals...I mean hospitals. When my mom talked to Nurse Ratchet, all of a sudden, the security guards leave along with the dripping syringe of Haldol. I reminded her that it is her duty to know the basics of autism and not my responsibility to educate her. 
After 4 hours, with my mom holding my ears each time the baby cried and closed the sliding glass door the staff frequently left open, the case-worker came and spoke with me, made out a customary wellness plan and then I was discharged. 
How could this have been different? Simple. If you are a nurse or any other member of the medical community, you know the first rule of medicine-do no harm where there is no harm.De-escalate the situation! Don't make a bad situation worse by being sarcastic or yelling.
Find out why your patient is in distress. Do what you can to make them as comfortable as possible (even if that means simply not being a jerk). Take your patient seriously. If they tell you that they are allergic, LISTEN and don't force potentially deadly medication on them. It's better to be safe than possibly kill someone and be sued and/or jailed later.
You kind folks of the medical community know who you are. You abusive, stupid ones who will defend the broken system and down put people like me, because in your heart and mind you want to see me and those like me fail. Nurse Ratchet was reported to her supervisor. 

I can't stress enough the importance of having an advocate to speak for you if you are unable. This goes for everyone. Someone in your family should have a list of your meds, doctor phone-numbers and a copy of your living will-if you have one. They should be a primary contact like a parent, child or spouse and live near you. Lastly, report abuse of anyone on the spectrum. Don't settle for just an apology. I've been thrown out of another hospital because they couldn't keep me from using the chain of command. I simply chose to report the abuse I witnessed and personally experienced as a patient on their psych unit. This involved a patient's death because he was given the wrong meds.

I want to think my generation would be the last to suffer an ignorant and hostile majority that naturally thinks less of someone who is, for one reason, not like them. I am reminded that we live in a fallen world, but that is not an excuse to remain passive.

I would like to see communities invest in autistic people, and not just in the tech world.

I have written this as a way to enlighten society to the needless struggles, discrimination and abuse autistic people like me face.

Tuesday, April 11, 2017

Blessed Easter-things can only get better

Ewe and her lamb

Mary had a little Lamb
Soon to the world, He would go.
He would be sacrificed,
Washing away the scarlet stain of our sin

Making us as white as snow.

"Behold, the Lamb of God who takes away the sin of the world." 

-John 1:29

As a follower of Jesus Christ, I rest in the knowledge that this life is not as good as things get. In Eternity there won't be anxiety, sensory issues, depression or migraine headaches.

Perhaps learning about the message of the Cross, that Jesus was crucified for my sins as well as all of mankind, is more real for me given the violent things said and done in my teens and early 20's. I'm not going into them in this post because the main point I'm making is this; I need saving from my own self. 

If Jesus wanted me dead, He would have allowed me to die during several suicide attempts.
I don't know what Christian persecution is. I am blessed in that. I have, however, suffered persecution for being autistic. Being a Christian doesn't mean I am exempt from the wrath of man. They cannot touch my soul or spirit.
Jesus rose from the tomb. It is important to remember that He is the living God, part of the Holy Triune Godhead.
God's silence doesn't mean His absence.
The psalms remind me, His timing, not mine.
Happy and blessed Easter.

Monday, April 10, 2017

The Onion in the Petunia Patch Chapter Three

Chapter 3: Does autism get easier as you age?
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 other 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 to 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. I still struggle to maintain relationships. I don’t have access to transportation unless someone is off work 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

Friday, April 7, 2017

One autistic adult speaking for herself

A white woman from the nose down to the neck with caption in white font.
If this helps you, please share it on the internet. Print it out. If you hurt like I do, languishing in silence inside four walls Netflixing your day away due to lack of supportive services, please share this.
If you are creative and cannot create due to being isolated and unable to go out in public without a safe person, please share.
Link this or any other of my posts to another blog.
Things will only change if there are numbers. I am a party of one. I cannot do this alone.
I live on autisticaplanet, population: 1. It lies inside a gray warp within the multicolored spectrum.
Color wheel: concept: the autism spectrum

This blog post explains it best.

Tuesday, April 4, 2017

There is a person

Pink clouds with words.
I'm not trying to offend anyone, though inevitably, I will. I think using politically correct terminology has its setbacks. Today, everybody gets offended at everything. It is pathetic.
People heatedly debate each other over issues such as using person first language.
As long as you don't forget that there is a person, unique and created by God, then I am fine with being called autistic or a person with autism. Both are true. Both are not all there is to me, though.
I spend a lot of time blogging about my autism experience, but that isn't all of me.
I am also creative, empathetic, young at heart and enjoy nature. I have thoughts, feelings, and ideas like everyone else, yet I am myself, one of a kind.

Monday, April 3, 2017

To the dad who removed his crying toddler from the waiting room

Young female child crying

First of all, thank you VERY MUCH for your thoughtfulness in choosing to remove your crying toddler from the OB/GYN waiting room.
I am sure it was boring for your daughter to wait on top of being sick. I could hear the mucus rattle when she coughed. Being patient for a toddler is hard on a good day, but far harder when you are sick. My autistic brain can remember back to when I was a toddler.
I was about to go in for my yearly exam. I had a meltdown earlier in the week and was dreading the pain and pressure that always comes from having a metal speculum inserted into my vagina. I have a very good doctor who is both practical and patient, but it is still a very uncomfortable experience.
Not having to figure out how to run out of the office, possibly punch myself in the head or knock something over was a HUGE relief.
I was able to remain seated and chew my stim pendant, filling out my paperwork (I wish they could just e-mail it-very stressful as I am slow and time is short) and finally get the exam over with.
I am premenstrual and have PMDD, so this was especially a vulnerable time for me.
My safe person thanks you as well.
Hopefully, everything went well for your wife/partner, and your daughter went on to feel better.

I notice that kids (at least well ones) who have a toy to play with keeps them occupied while stuck in a waiting room with no toys, videos or anything remotely child friendly, as the waiting rooms I frequent are for adults. A tablet or supervised smartphone use might also help a bored child who is fueling up for a tantrum. 


I am autistic and I have a friend

2  women of different ages hugging

There is (yet another) stereotype about autistic people that they have no friends. While socializing and finding someone (either NT or ND) who accepts you for who you are (not who their idea of you is) has been a struggle for me, I do have one friend and she is a great blessing in my life.
I didn't have any friends growing up. I did have a reoccurring summer playmate for a few years but come school time, I became invisible to her. She was popular and probably didn't want her friends knowing she knew me.
I did have a few casual friends in middle school the place I call day prison due to the bullying and generally hostile, tense and loud environment.
They succumbed to peer pressure in high school. People asked them why they hung out with me and one of them told me she was tired of getting mean stuff said to her for being my friend. She asked my permission to leave the friendship.
I forgave her and have forgiven a lot of other people for their inability or refusal to accept me due to being "different" compared to those around me.
The only genuine friendship I have had the pleasure to experience came after my school years.
I was attending a class at a local social service agency which was supposed to help people find and keep a job-ala retail. It. didn't help me at all as it was designed for intellectually disabled clients.
Anyway, to get into the building, I had to be buzzed in. This is where I met my friend. 
One of the first things I think about when I think about our friendship is the fact she pursued it over the years.
She would periodically call or send a card after I had left the agency years after. I wasn't sure why, because I thought "what do I have to offer her?" I had gone through many down times where I wasn't well enough to get out of bed or even leave the house.
Eventually, as I made a little progress with medication and therapy, I reached out to her, and she came to my house to meet me and my mom. 
We became close friends in 2012, even after I told her via a letter she would be better off without me due to all the stress my autism brings not only into my life but everyone else's. 
She responded by saying that I would always be special to her and that she would be there for me if I changed my mind.
She also said that her life is better for having known me.
Quality is better than quantity. 
We live about an hour from each other and I wish we could see one another more often. I don't drive, but my sister drives me to see her 1-2 times a year or she comes up to see me.
I have always done better with relating to people older than myself, particularly if they have a mentor personality.
We agree to disagree without animosity.
We talk to one another once a week. Regular readers will already know that I don't enjoy phones, but I make rare exceptions for people who make time to speak from a quiet environment.
Concept: Lack of emotional support online and offline. Shared with "friends" on Facebook during a major depressive episode.

During a major depressive episode, there were no "likes" to anything I shared on Facebook. I only share it with people I have met in person. No encouraging comments, nothing.
The encouragement came from my ringing phone each and every Sunday evening.
A lot of the time I wasn't well enough to answer. Encouragement came in the mail. Holding onto a thinking of you card requires no internet connection, just a little time and a stamp.
My friend has taught me the meaning of commitment, faith, love, patience, and acceptance of what is. She doesn't expect me to meet unrealistic expectations. She meets me where I am at and encourages me to press on, clinging to the faith we both share.
No matter how poorly I'm feeling, I always smile when I hear my friend's voice.
She is a treasure. I hope I will always know someone like her throughout my lifetime, but if not, I will always have many blessed memories, like the time she sat in my lap and put her feet under my nose as my sister took our picture.

Saturday, April 1, 2017

The Onion in the Petunia Patch Chapter Two

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

The skullcap has two 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.

My QEEG test results

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 imagery that is random 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.

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.

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 excessively 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.

Neurofeedback was prescribed, but after about 5 sessions, the co-pay proved too expensive. A girl has to eat.

 Going for Tinnitus Retraining Therapy Evaluation

On January 29, 2009, I had the privilege of going to Highland Park to meet Dr. Jill Meltzer, an audiologist who specializes in treating hyperacusis-simply defined as hearing many sounds at an uncomfortably loud level.
We met in Jill's office where she took down some personal history and explained the process to come.
I then went into a sound booth and put on headphones while Dr. Meltzer administered two hearing tests. The first test was a simple hearing test called a "pure tone audio gram". Some of you may have had this done at school. A tone is played either low or high in pitch and low or high in frequency. I was asked to push a button when I heard the sound. I heard even the lowest, quietest tone. I was also asked to repeat a list of words like "eat".
The second part of the test was to determine whether or not I did indeed have hyperacusis. I got to hear the tones again. This time, the tone was played starting at a quiet volume and becoming increasingly louder. When that tone became too loud, I pressed my button again to let them know.
We returned to Jill's office where I was shown the results of both my tests. My hearing was normal. There was no damage to my outer or inner ear. I do have hyperacusis. This is where my brain comes in. My brain is interpreting many of the messages my ear sends to it as too loud. The doctor was encouraged, however. My level of loudness discomfort from part two of this test (or my LDL's) showed in the 70 range. People with really bad hyperacusis can show LDL's in their 50's.
Next, purple goo was injected into my ears. This caused absolutely no discomfort for me. When the goo had molded to the shape of the inside of my ears, my custom wearable sound generators or WSGs could be ordered.
A few weeks later, I returned and was shown by Dr. Meltzer how to use my WSGs. They are flesh-tone and made of hard plastic on the outside. There is also a volume button to adjust the broadband sound generated by both units. A soft, clear plastic tube fits just inside the ear. There is no "static" sound. The sound is a soft "sss". Over the course of a year to 18 months depending on the patient, wearing these devices will retrain the brain to not interpret the message from the ear so loudly. I will gradually be able to tolerate sounds once a problem due to loudness because my LDLs will increase. Normal LDLs are in the 90 range. Testing at the 3 month, 6 month and 1 year levels determined my progress.
My loudness discomfort levels improved from the 70’s into the 80’s.

TRT currently isn't covered by insurance of any kind. This isn't exclusive to North Shore Audio Vestibular Lab. It is a universal law. Unless you can obtain a grant (perhaps through your county), you will need to pay out of pocket. All total, the cost is $3-4000 including consultation, testing, WSGs and check-up's. My (late) mom took out a home equity line of credit (HELOC) on our home before the banks and Wall St. went bust in fall, 2008 to cover the cost of treatment. I realize not too many people badly needing this therapy-autistic or otherwise-could afford this treatment.