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.

Wednesday, January 25, 2017

My Meltdown-a poem

A woman on fire-Pixabay


My meltdown is
Echoed in my screaming
Adrenaline is racing like napalm through my veins
Moro reflex punching my gut over and over
Reliving the sensory overload on a loop

I'm drowning without being in water
and I have to go to bed for 2 days

Sometimes it brings red and blue flashing lights on a squad car 
Handcuffs chewing into my wrists
Lots of shouting and grabbing
Strapped to a backboard while my skin turns purple and black

Locked up, drugged up
Being punished for something I cannot control
It isn't a conscience choice I've made
To disrupt my life or yours

It so happened that
A dog was barking-
A child was screaming-
Someone set off a firecracker-
And I couldn't process the information fast enough
To remain in control of my executive functioning


The threat of sensory overload
hangs pregnant, like a cumulonimbus cloud

I need a safe place and safe people- now and until I die
To successfully process what life heaps upon me

-autisticaplanet


Will you help me to make this a reality? I cannot do it alone, behind a computer detached from any notion of community. I don't want my life story to end in a jail cell, nursing home or alley. 


Thursday, January 19, 2017

The Onion in the Petunia Patch Part Four

I have had medical therapy for my hyper-acute hearing. I also wear passive headphones and/or earplugs as the therapy could not help me 100%. It is called Tinnitus Retraining Therapy. TRT primarily helps those suffering from Tinnitus, but also benefits those with hyperacusis (I was diagnosed at age 10, but no therapies existed to treat it).
To find God, I think He had to work all the distractions and perversions out of me. I have found the comfort and encouragement in Him that an autism support group never could have hoped to hold a candle to. All they did was cyber-bully me, parents of kids with autism because I politely disagreed with a speaker they wanted at a future meeting.
There is much more I would like to touch on, and I have on my blog, “autisticaplanet blogs”. I began blogging on Blogger back in 2009 before moving to Wordpress and back to Blogger again last fall. It has grown to include my growing interest in nature photography. I hope you will visit. I am not a “long distance” writer. I would never write a novel, I prefer the short blog post That’s why blogging works for me. Reading blogs can be challenging as I am a poor reader and retainer. I suffer migraines easily. Through audio, I have discovered the enjoyment of written works, some fiction, and non-fiction.
I hope to be able to use my love of photography and to some degree, writing to have a purpose in life. I hope to help others including the autistic community (which is fraught with tension) and be as independent as possible.
The difference between existing and living is knowing that I can survive by God’s grace and strength whatever comes along; I can do it with Christ.

Thank you for reading. If you haven't read parts 1-3, you can do so by clicking here:
https://through1filter.blogspot.com/2017/01/the-onion-in-petunia-patch-part-3.html
https://through1filter.blogspot.com/2017/01/the-onion-in-petunia-patch-part-2.html
https://through1filter.blogspot.com/2017/01/the-onion-in-petunia-patch-part-one.html

Coming soon: The chapters of The Onion in the Petunia Patch. Thank you very much for reading. God bless you.

Feel free to share. If you want to publish all or part of this, please give me name credit. Autisticaplanet on Blogger is fine.

The Onion in the Petunia Patch Part Three

Young adulthood-present
I attempted suicide when I was 17, six months before graduation. I was hospitalized for the first of what would be over 20 spanning from 1997-2006.
More bullying and much more blame came from what was supposed to be a place of healing. I was told how spoiled I was, what a con-artist I was; manipulative (as if plugging my ears and screaming
at the loud toddler visiting was my way of wanting to “get” something from someone-other than quiet).
There were more suicide attempts. In 1998, I saw the next in a series of psychiatrists/psychologists. This man diagnosed me, wearily, with “autistic tendencies”. I was 19.
I went on to getting into trouble with the law and almost being imprisoned. I firmly believe if it hadn't been for my mom’s nursing sense and persevering spirit, I would have gone to jail and would not be here today.
I questioned God. I began to wonder if He really did exist. I decided that He did, but that He hated me, even was bullying me. How sad that seems now. I was so messed up on anti-psychotics for those on the schizophrenic spectrum, covered with boils that bled (and left scars) on my face, neck and back. I went to a few churches that told me mental illness was a fable and that all I had to do was babble my cares aloud. So much of my teen and early adult years were mired in perversion-that of undiagnosed alienation, persecution (amplifying the alienation) and encountering the most bizarre people. I also found out I had PMDD (Premenstrual Dysmorphic Disorder) which makes women who have it violent during their period. We still have to fight to get coverage for the birth control pill I take. It keeps me mentally stable during my annual 4 periods.
The light in all this darkness came when by 2006, I had exhausted every resource in the county which I live (Kane). My aunt had a friend whose son had been diagnosed with Asperger’s. She thought I should go. She is the reason I have my therapist. It is well worth the 50 minute car-ride and gas.
By God’s grace, the dedication of my late mother and the treatment team I worked with for 9 years, I have come out of the hell I descended into in my teens. It has been a long and intensely painful journey. Sometimes I feel like I am a sacrificial offering of autism and sensory processing disorder.
The whole reason why I am telling my story is so that someone in a future generation doesn’t have to endure so much of what I and my parents did. Perhaps this will also serve as a reference point to see how far the diagnosis and treatment as well as overall well-being of the higher-functioning autistic individual has progressed.

The Onion in the Petunia Patch Part Two

Early Years
Back in 1979, there was no DSM IV. There was no Asperger’s diagnosis. There were no support groups for parents. No early intervention. After all, how can anyone intervene into something that does not yet “exist”?
My mother used to tell the story of playing “Music Box Dancer”, a loud & lively tune, on the organ. She was 6 months along with me. As
she played, she began to feel and see violent kicking in her womb. She called my dad into the room. When she asked him what he thought, he abruptly answered, “Stop playing!”
My mom, very concerned, read an article in a magazine that mentioned the “difficult child”. This was a child who was hyper-intense to their environment from day one. It was hypothesized that the problem would solve it self by the time the child was about 5 years old. This obviously was not the case, and my mom thought so after reading the article. The rest of my story more than proves the point.
I was born to older parents. My dad was 52 and my mom was 40 when I came into the world on Saturday, August 11, 1979. My mother had been diagnosed a year or so before with a thyroid disorder called Hashimoto’s. She also had an autoimmune disorder. There is a prevailing theory that both thyroid and autoimmune disorders in the mother may lead to having a child with autism. My dad also underwent a fertility test before I was conceived. He was told that having children was “improbable” but not impossible.
Three months later, I entered the world screaming mad. My mother was able to hold me briefly before I was taken from her to be cleaned up and weighed. I was only silent when she wrapped me up tightly in the blanket. As soon as the nurse carried me away, the blanket falling away, I resumed screaming again.
At 3 weeks old, I was obsessed with shadows. The chandelier in the living room was on a rheostat switch on low. My parents kept trying to get me to look at them, but I would only look at the shadows.
Turing the rheostat up solved the shadow obsession.
I said my first word, “pretty” when I was 6 months old. I sat up with assistance. I did not smile much. I was shy around men. I am told it was because their voices were generally louder than a woman’s.
I seemed like a typical infant and toddler…until the doorbell rang or a door slammed shut. I would scream for up to half an hour in the wake of a sudden, loud sound.
My symptoms weren't limited to noise. I screamed and buried my head at the flash of the camera (ironic today being an avid hobby photographer). I walked off the stairs, not down them. I could not “see” the dimensional aspect of stairs. I could sit up but not support my own weight unassisted. I did not walk until I was 18 months old.
My mother was admonished by her own family. I was being “spoiled” was the usual consensus.
Kindergarten and Grammar School
I began kindergarten when I was 4 in 1983. The other kids played with me until a lesson where a scratchy record was played. I screamed very hard and ran out into the hallway, refusing to remove my hands from my ears. My mom was called and asked to remove me. Instead, she used logic. She told them to place a desk in the hall across from the door. Each time they played the recording, they would forewarn me to go and sit at the desk. I would stay put, waiting until the lesson was over. They weren't easily persuaded, but did agree to keep me. The arrangement worked, but the kids cleared out each time I went where they gathered.
When my parents took me for my kindergarten assessment, the teacher sarcastically asked my mom if she would be attending class with me, given all the social interaction my mom had to do on my behalf.
In 1st grade, our class had to “draw the music”. Another scratchy record was played. It was Classical music. (To this day which I cannot stand classical music due to the sharp rise and fall of the arrangement, where as rock music is even and steady. I managed better this time. Holding my ears with both my one hand and the shoulder of the other arm where my writing hand was, I drew sharp peaks and valleys in red and purple. There were holes in the paper from holding the crayon too hard. This teacher was kinder. She called my mother and the consensus was that I didn't enjoy classical music, but that I was a very sensitive child.
I was hyperactive in school. I could barely stay in my seat. There weren't rocking chairs attached to the desks. To this day I cannot be without the rocking motion. I found I could both calm and focus myself by doodling. I doodled so much I covered my notes and work with shapes of dogs and swirls. This same teacher told my parents to purchase a separate notebook for me to doodle in. She didn't panic or clamor to have me removed as my 2nd grade teacher would go on to do. One in thousands of problems solved.
I saw my first psychiatrist in 2nd grade. I was called via the PA system to the principal’s office where I met my parents. They took me to the school psychiatrist. Parents absent, the psychiatrist made me do a
finger exercise, touching each finger to my thumb as fast as I could. “Outrageous,” she remarked. I am not sure to this day if she was pleased or not. She asked me how my bowel movements were. Even at age 7 I thought that sounded freaky.
She concluded that I was fine, and that the matter never should have been called to her attention. I still could not sit still. There was an exhibit of rice and sprouts growing in water. I think it was themed around people from other countries, what they ate. I would sneak back and eat the rice and splash in the water when everyone was supposed to be working, quietly. I caught a typo in one of the textbooks one day, and instead of her praising me for being diligent, she screamed at me to sit down. She had horrible halitosis to boot.
There was a redistricting when I was 9, so I had to change schools. It was for the better, although that is when the bullying first began. The teachers I had for both 4th & 5th grade were kind, but the kids were realizing that it was fun to cause harm to those who were unlike they were as a whole.
Middle & High school years
I will not go into great detail about being bullied, as it brings up PTSD- like symptoms (racing pulse, shallow breath). All I will say of Middle School is that it was a war-zone. I was assaulted on multiple fronts of my being, 180 days out of the year. Psychologically and physically I was perused relentlessly for 3 long years. My dad went to the principal’s office so often; they pulled the shade down when they saw his truck coming up the drive.
Summer vacation was the only time I was continuously happy. I could retreat into the safe haven of home. Swimming was nourishment for my soul as well as my body, but I was bullied at the pool as well.
I had a few friends that were more opportunists than anything else. I only had one in my grade, and not in any of my classes. I was alone. I only spoke if the teacher called on me. I could sit silent all day.
By high-school, I was glad to be out of middle-school, but then my dad suddenly died of complications following surgery to repair a ruptured aneurysm at the end of my freshman year. My grades were always good, though math was an area of struggle. My grades were good enough that the school allowed me to miss the last week of school and be excused from finals.
In the years following my dad’s death, my autistic behaviors really began to deteriorate. I didn’t have any prior experience with death. I processed his passing as being surreal; like a movie. A year later we went on a vacation to the Wisconsin Dells. It was so loud and so crowded there, that was where my adolescent melt downs first started. Meltdowns included screaming and self-injury as well as branching out to the offending source. Children, dogs and fireworks still present a challenge for me, but not to the degree of agony in my teen-age years. I believe that going through the physical changes of being a teen-ager with hormones contributed.
I had to leave school in beginning of senior year, following a knife threat by a group of freshman girls in the cafeteria.
I walked out and called my mother to come and pick me up. I vowed I’d take the GED before I’d be a drop out.
As it turned out, my mother talked to the high-school. They quickly arranged for me to have a tutor free of charge for the rest of the year. I graduated in 1997 with my class. I went to the ceremony for my family and for my own self. Several kids asked me why I came and told me I should have stayed home.
I had no friends now. I had seen them for the opportunists they were. I am blessed to say I came from a healthy home environment. My so called friends came from abusive homes. One girl’s dad even threatened to fight me while drunk. We had a clean and inviting home. Their homes were cluttered and even dirty. I feel badly for them now, but then all I felt was my own grief and anger.

The Onion in the Petunia Patch Part One


I am releasing the PDF book I wrote in sections. It is a brief memoir about growing up undiagnosed with autism back in the 1980's and 1990's. I hope in disclosing this people my age will know they aren't alone. I hope there will be lessons learned for bullies and judges and pitfalls to avoid for parents raising autistic kids today. 

Introduction:
There is an old song by Arthur Godfrey called “I’m a Lonely Little Petunia”. In it, the little petunia bemoans its smelly fate living among the onions.
My mother used to call me the onion in the petunia patch, and not just because I was a little stinker. I amused and angered the “perfect” people in my life due to the glaringly obvious fact that I didn’t fit in or belong anywhere outside my home. I rocked, walked “like a duck” as one classmate put it, and screamed, plugging my ears, when a teacher put on an old, scratchy record.
More than mere quirks, my autism affected relationships with others, sensory input and eventually grew more problematic in my teens. It also helped me to be highly organized, creative and to know myself; something I am told is hard for neurotypicals.
My late Mother, Ruth, always said we should have written a book about our journeys together. That didn’t happen, so I am writing this PDF file in hopes of encouraging moms (and dads) of autistic children not to give up and perhaps, at times, even laugh in the process.
It is my prayer that not one more child with autism spectrum disorder or their parents would have to go through the shame, rejection and isolation of “being different”. Perhaps grown adults on the autism spectrum who went undiagnosed as children will find comfort in knowing they are not alone.
I dedicate this book to The Lord, my Dad, Frank and my Ma, Ruth for being my number one supporters.

Wednesday, January 18, 2017

Masking- Why I can't do it

Woman peeling away layers to show true self

I follow a few blogs written by autistic women in their 30's on up. They frequently speak of masking, which is a coping tool to get through their day without anyone else knowing there is anything wrong. They often say it is a characteristic developed in childhood or adolescence.
Due to my extreme auditory sensitivity, I have never been able to hide behind a mask. I also came to be told in my teens that I had an anxious and angry look on my face. This came about when I asked my mother why store clerks stared angrily at me. She confirmed that they indeed were staring at me and told me about my face.
Shopping centers are loud and chaotic places. By age 16, my autistic regression made shopping malls and restaurants unbearable. I firmly believe this is the result of brain growth. Brain growth continues until one's early 20's.
I wish I could hide behind a mask and alter my often monotone voice (especially under stress). It would be a good coping tool in an apathetic and judgemental culture dominated by people with a pseudo perfectionist psyche.
I don't have any more coping tools left in my war chest for fighting auditory sensitivity. TRT and AIT have done all the good they can do. Medications will improve my coping skills some, but I will never achieve a perfect balance due to my neuro makeup. A former psychiatrist explained this to me. Passive sound blocking earmuffs help me when I do go out in public (always with a help/safe person).
High anxiety is a constant. Dealing with others when they are are acting negatively is dangerous for me. I immediately panic inwardly and take on their emotion (fear, anger) like a chameleon without a choice. If the negative emotion is aimed at me, I feel violence toward them and fantasize about hurting them. I have to remove myself and breathe. This is a perfect reason why I need to work from home and have limited contact with the outside world. I will always need a place free of traffic, kids and dogs to keep me calm and them safe.
My mother used to register my facial expressions and tone of voice so well that I needed to hide in order to go undetected. I usually took a nap and feigned sleep. My mom was a nurse who scored highest on psych boards in nursing school. I told her the psychiatric community really missed out when she decided to go into orthopedic care, but I respected her choice. 
If I tell the few people who are around me that I'm okay when I'm not, they usually buy it. I don't mean to be a pathological liar, I just don't know how to deal with people who don't have the insight both a professional and compassionate mother had. 
I tell God my problems. I know he hears me, but this doesn't erase the difficulty. I know God doesn't remove all our problems. They are supposed to make us stronger people. 
I feel like anxiety is the albatross around my neck pulling me into the deep water and anger gets tacked onto anxiety. It is a good thing I know how to swim, but I do need to rest from battling the choppy waves.
I spent most of 2016 in bed. I had been feeling in need of a rest since summer, 2015. I still need that rest. 
There has been a huge change in my life in the past (almost) 3 years. I am having to learn whom I can trust, how much I can trust and when not to speak. I have learned that giving away information to the wrong sources leads to judgment and punishment.
Therapy has been of benefit to me over the years, but now I can't afford it-the result of trusting the government for help.
I firmly believe in Big Brother. I don't think they will punish me for saying that here. The conspiracy theorists and terrorists keep them busy enough.
I trust in God, who will avenge my enemies and see me through to the end of this age.

Tuesday, January 17, 2017

The migraine, one of my co-morbids and how it affects me.

I didn't know that the vile migraine had an awareness ribbon and month (June). They are not simply headaches. They alter mood, create nausea and vomiting, make darkness and silence a must, cancel plans and are chronic. 
My migraines were few and further between as a child (I got about 2-3 a year and had to go to bed, vomiting periodically), but increased in my teens along with autistic regression.
I inherited mine from my mother. It is always the same eye. I don't get the the visual aura but I do have the olfactory (smell) phantosmia. Mine are blessedly fewer than 14 per month. My heart goes out to those of you who experience more than 14 a month.
Love and support are so very important. My parents were very understanding. My mom had to hold me while I cried sitting on the bathroom floor, head pounding and vomiting into the toilet to the point it had to be flushed at least twice.
I can expect them during right before and during my menstrual cycle. Sensory overload and beginning anything new also triggers them, so it is imperative that I have a quiet place to get away and rest. Having my own room is a medical necessity-I thank God that I do. 
My jaw, teeth and ear on my right side can also throb. Dizziness and disorientation are also common symptoms for me. 
I take RX grade Ibuprofen (Naprocin). Along with having autism, my health is unpredictable. Supporting myself  financially is not an option. With some ingenuity, people who are affected by their unstable health as much as me really could benefit from working from home and a flexible work schedule.

Saturday, January 14, 2017

Ignorant


In the 1990's and 2000's, I wrote poetry. Today, I would like to share one of my poems.

Ignorant

I take a hammer to the sky
And the shards of china blue
Rain down like daggers
There is a bullet hole
In the starless new night sky
That swallows the light

Pillars of stone and salt
Tumble to the ground
In thunderous collapse
This is my doing;
I shall not look back

Will you remain ignorant still
Now that these things are done?
Was it necessary for us
To bare these pangs

Because I am not as you are?

Violently exposing an other's deceit. That is what usually culminates into the end of any relationship I have ever had. I have no tolerance for targeted sarcasm, usually frustration on the part of the other person. It must be a neurotypical thing, because I haven't had autistic friends. I haven't had the chance to be included due to my neuromakeup and lack accommodating services.

I have tried, with some success, to address conflict in a healthier manner. One example of this would be writing the person a letter detailing how I interpreted the situation. If they try to blame me for everything, game over. Being played is worse than being lonely.

I used to think venting anger (choosing it as a character trait) made me stronger, masculine, not to be messed with. Instead, being angry wore any reserve I had down to the nubbins and lead to meltdowns, which lead to hospitalization and involvement in the criminal justice system. Choosing anger lead to self destruction and was weakness in strength's clothing.
I avoid much conflict now, sensory and social due to my meltdowns, which are 100% unpremeditated and the result of pent up sensory and emotional overload.
Medication does help. So does exercise. Therapy has given me some perspective. Currently I can't afford it.



The late writer Kurt Vonnegut, Jr. said that loneliness is a disease. He also said it could be cured. I could not agree more. I'd like to add stupidity (willful ignorance after the fact), bullying and apathy (being a root).

Jesus was a man well acquainted with sorrow and withdrew to lonely places to pray to His Father (Luke 5:16) Good advice from the Savior.

P.S. I am well aware of the fact I included a quote by an atheist. I can still use what Mr. Vonnegut said for God's glory.


A pressing need for housing autistic adults

Housing for autistic adults-within reach?


Illinois, my home state, doesn't have too many choices when it comes to housing autistic adults who cannot work on their own, but have little to no difficulty with brushing their teeth and doing laundry.
I live in the northern part of the state, in a county that has a huge discrepancy between the northern and southern parts due to the way it is set up. I live in the desolate far north.
I am continuing my quest to draw attention to the need for a variety of different living situations for autistic adults in Northern Kane County in Northern Illinois.
Below is a letter I wrote to my elected representatives (Christian name omitted for privacy)

Dear Representative,
My name is () and I am an autistic adult residing in your district. As you are probably aware, there are now a lot of adults with autism who either need or will need a safe, quiet and structured place to live after their parents are unable to care for them (mine are both gone).
The CDC states that 1-2% of the U.S. population is affected with autism. Please keep in mind that the US makes up 5% of the entire world population.
There is a development in the works in Arizona called First Place. A mom of a young man began the mission many years ago, while her son was still receiving supports in school. Through collaborating with the Southwest Autism Research & Resource Center (which she co- founded in 1997), real estate and others in the community, Denise ensured there would be a place for her adult son and others with autism and related disorders to live on their own, many for the first time.
While First Place is literally a "first place", 12 Acres in Texas is more of a "forever place". This is the type of living I would need. The couple of another adult son with autism put up 1 million dollars and received 12 million more in private donation to begin their project.
There are 12.89 million people in Illinois as of 2014-the year my mom died.
I would like to know what you and others in the Illinois state legislature are doing or can do to ensure places like First Place and 12 Acres can be built here in Illinois.
Institutionalization costs much more than keeping a disabled person home-but not in a noisy- crime ridden section 8 housing project. 
Now that the autism society of Illinois has wound down operations, how can representatives, remaining agencies, parents and individuals with autism spectrum disorder work together along with the communities we live in to assure that our parents and older siblings can die in peace and we can live safely, especially those of us who cannot work due to our disability and co-morbids?
I do not do phones due to my extreme sensory sensitivities. I can't work and I don't have any purpose in life. I think of death often. I am hoping there is something I can e-mail or Facebook that will bring me into a broader effort-more than what pittance I can do alone to ensure a safer and abundant future for adults with autism and related conditions (Fragile X, Rhett’s, and Lowe Syndrome) in Illinois.

Thank you.
Sincerely, 
()

Please feel free to share or adapt to write your own letter!
Click here to find your elected representative.
"Nobody can do everything, but everybody can do something." -Quote on the cinder block wall in high-school. 
Please check out my blog post on my housing needs:
Sources:
First Place: firstplaceaz.org

Monday, January 9, 2017

Life with autism, what it means FOR ME

autisticaplanet avatar

The following is a long list of what it is like FOR ME to live with autism

1. Having constant anxiety.
2. Constantly stimming to relieve anxiety, usually by rocking.
3. Hypersensitive hearing that makes living with most "everyday sounds" impossible.
4. As a result of #3, limited exposure to the outside world to keep me and others safe.
5. Unemployment.
6. Not being able to participate in what little programs there are available due to #3 and #4.
7. Knowing exactly what I want to say through writing often coupled with imagery with little need to revise.
8. Taking anti-anxiety and antidepressant medication to help me remain in my own skin.
9. Intrusive and unwanted thoughts. I have OCD.
10. Being a highly visual thinker who has to deal with #9 a lot.
11. Being poor at directions. I use landmarks to picture where I am going.
12. Not being able to drive. This also means I don't have a car payment or car insurance to worry about.
13. Needing a safe person with me when I go out to moderate and keep myself and others safe.
14. Autistic regression at age 16. Meltdowns more frequent and violent and problem sounds like child noises going from uncomfortable to unbearable.
15. Owning several pairs of headphones, earbuds, earplugs.
16. Asking for a sound machine as a birthday present.
17. I am happiest in my house or out in nature.
18. I need my own room to decompress, cry, stim, talk to myself, pray to God and create.
19. Having "resting bitch face", just like some neurotypicals.
20. Primarily using my phone to text, not talk.
21. Seeing a composition before I take the photo.
22. Seeing a bead pattern before I select the beads to make stretch jewelry.
23. Hearing people's conversation in another room in a lowered voice to avoid being heard by others.
24. Only learning about human expression and reasoning by seeing patterns in movies.
25. Prioritizing voice over facial expression.
26. Hypersensitive to tone of voice and usually dead on with knowing emotion that other person is experiencing due to their voice.
27. No restaurants, concerts or movie theaters or any other venue that draws lots of crowds and amplified sound.
28. I know myself well. Psychiatrists and therapists have confirmed this.
29. I see patterns in the carpet and create a story in my mind based on what I see.
30. Assigning gender and personality traits to inanimate objects.
31. I DO NOT have a sleep or GI disorder.
32. I didn't have early intervention or have an IEP. I am 37.
33. I have outlived both of my parents.
34. I have empathy.
35. I have a good long term memory, but my short term memory has ailed me since I got into my 30's.
36. Exercise is very important.
37. Being perpetually misunderstood and judged instead of being listened to and believed.
38. Needing living accommodations (for the future) that take into account my need for a low sensory environment and having little to no income.
39. The need for work from home for a person who isn't Silicon Valley smart.
40. Loathing eye contact. WTMI!
41. Having a sense of humor.
42. Understanding metaphor.
43. July 4th and New Year's Eve are so traumatic for me that I use sleeping medication in order to cope.
44. Having a special, obsessive interest that isn't a hobby.
45. Surviving physical and psychological abuse.
46. Hating reading books or anything longer than 500 words.
47. Chronic migraines that can be triggered by reading. (I am a visual and hands on learner).
48. Driven to help educate others about autism-particularly the way I experience it since I don't find much out there that represents enough of my experience.
49. My weaknesses help me to rely on God more, not less.
50. Knowing disability won't exist in Eternity.

If this list has helped you learn more about autism, please feel free to share with someone who does not. Thank you.

Friday, January 6, 2017

Being autistic and using the phone.

I don't talk on phones unless it is someone I know who will go into a quiet room. I also cannot use a smartphone. I have to have a real button to press. I do have a cell phone with a slide out keypad. I hope phone manufacturers will keep the slide out keypad model. Not everyone has refined motor skills. This includes seniors. Everyone who lives long enough will be elderly one day. I don't do well with voice recognition as my words often falter in real time. I can only think clearly when writing.
 I can also text. I keep in contact better with family now due to texting. It is the next best thing to seeing them. 
Phone manufacturers need to keep making the slide out keypad for those with mobility issues like compromised fine motor skills.

Thursday, January 5, 2017

A tip for coping with OCD

Matching earring and necklace set in pink. gold and gray.
I love to wear jewelry. My mother loved jewelry. I must have inherited this trait from her. I often do mix and match, but during a stressful event such as PMS. Something in my brain doesn't allow me to deal with mixing, only matching. Knowing this, I have a few matching necklace and earring sets. They are the "go to items" I wear when OCD has a grip on me.

Department stores such as Kohls (where I shop) has plenty of affordable costume jewelry, including surgical steel earring backs.

Cubic Zirconia or any clear crystal will go with anything.

If you have any go-tos for stressful times in your life, figure out what they are and use them. It is a great coping tool. 

Monday, January 2, 2017

False prophets, abuse and never ending mistrust of mankind



“You are going to wind up in jail, an institution or the morgue.” –Neuropsychiatrist at the University of Illinois at Chicago Campus, January 2006

“You are a fraud.”
“You are just spoiled.” –Behavioral health worker @ Alexian Brothers Behavioral Health Hospital, Hoffman Estates, IL 2005

“It isn’t my job to understand autism.” –GP, circa 2005

“How much did (X) cost?” Ongoing suspicion from AID (the association for individual development, headquartered in Aurora, IL) each time I have worked with them, despite full financial disclosure on my application form.

“Well, that’s because they get so much fraud.” My one and only friend (during a conversation on 1/1/17) who used to work at AID, despite my telling her a person is innocent until proven guilty in this country.

Add to this sexual assault (Lutheran General Hospital, Park Ridge, IL 1999-during a free gyno exam -included in hospital stay). Would not pull out speculum when I told the doctor and his assistant (both male). No nurse present. They laughed at me instead.

Also add the tearful begging and pleading to hospital staff not to expose me to small children or barking trainee therapy dogs in a small space I could not get away from being an inpatient-only once getting that accommodation made (at Alexian Brothers, nonetheless).

Being personally blamed for the shower in my room overflowing, despite repeatedly reporting it to staff. (Alexian Bros.)

Having a hospital worker-a male, stand over me, in my hospital room, tell me my drawing was “ugly”. (Alexian Bros. 2005)

A doctor forcing me to remain seated in front of the nurse’s station despite having a migraine, because I fired him, which a patient has a legal right to do. (Good Shepherd, Barrington IL, 2006)

There is no excuse to abuse someone, just because they don’t understand them. These acts would remain unforgiven if it weren’t for my Christian faith.

I won’t go into the first responder abuse lasting from 1997-2014. I will say it was just as devastating and included physical as well as emotional/psychological abuse.

I am left with the tormenting thought that no matter how much autism awareness there now is, I will always be mistreated by those I should be able to trust.

I have endured the nightmare of abuse so long, I don’t expect anything different. I expect disbelief, judgment and put-downs.

I have no more trust left. I only go to a psychiatrist to get the meds that physically sustain me. 

Having others push me and, subsequently pushing myself to act “normal” lead to so many violent meltdowns (which I also was judged for) that hurt both others and myself.

This ongoing judgment along with having very little connection to the outside world lead me to think both myself and my family would be better off without me.

I have attempted suicide at least 5 times (from 1997-2005).
I have managed to avoid psychiatric institutionalization since 2006 having 2 emergency visits, in 2009 & 2014. I was abused in 2009, yelled at and almost given Ativan, which I am allergic to and is in my medical information for screaming due to the physical pain of a nearby screaming baby. The only thing that stopped the nurse was calling one of my own while she went to get the poison-my (late) mother.

I have 110% reason to fear the medical community. I have read countless blog articles written by autistic adults who tell nightmare tales similar to mine encountering first responders, GPs and Psychiatrists.

The distrust is so strong, just walking into a doctor’s office elicits panic. I do not feel safe.  I feel like at any moment my freedom could be taken from me.

I think my own truths may incriminate me. They have before.

Add to this that I am constantly managing my sensory symptoms, so my anxiety is already at a 10. Any confrontation could send me into a violent meltdown (I don’t get the girly crying and withdrawing-I’m not that fortunate) and it shouldn’t be a surprise that I loathe coming.

I only trust God. The only reason I go into any doctor office  is because I have prayed ahead of time.
God is the only one I can trust. Only He can keep me safe. If I do get mistreated, it is for His glory.


 I don’t always have words when anxious and upset. My fingers are more my voice than my larynx. Blogging is my translator.