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, March 20, 2018

I am autisticaplanet

 Caption: A burned out, miserable white autistic woman 

I'm not the kind of autistic person that has friends (plural).
I'm the autistic person, long out of high school who sits home all day with TV as company.
I'm not the autistic adult thriving on social media, a place where I have been bullied by both autistic and allistic (non autistic) people.
I am the autistic person without a tribe. There is no real place of personal acceptance for me.
I'm the autistic person who has high support needs without having an IQ below 70.
I'm the autistic person who rocks or performs some kind of stim constantly to alleviate high anxiety.
I'm not that thriving autistic adult who has some kind of community support while attending college and/or interviewing for or working a job.
I'm not that autistic Millennial you read so much about. I'm rounding the corner to 40.
I don't get invited over to a neighbor's house or outside family member for dinner.
I'm the autistic person who has violent meltdowns.
I'm the autistic person who has attempted suicide multiple times.
I'm the autistic person who literally screams for help.
I'm the autistic person who has fallen through the cracks of both Neurodiverse and Neurotypical society.
I'm the autistic person who wears large, pink earmuffs out in public to block out noise.
I'm the autistic person who needs there to be a high-support, low sensory kind of living option NOW, so that I won't end up in some kind of hell hole later.
I'm the autistic person who believes, due to nearly 4 decades of life experience, that autism is a disability.
I'm the autistic person who has typed the skin off her fingers e-mailing whatever service agency she could find, only to be redirected or dismissed all together.
I'm the autistic person who lost her Medicaid.
I'm the autistic person who can't drive or take public transportation.
I'm the autistic person who also has mental illness, otherwise referred to as co-morbidity.
I'm the autistic person who has been given a voice by certain bloggers, CNN and The Mighty, but nobody wants to or can help.
I'm the autistic person who should be grateful I'm not like your child and damn me if I try to explain to you any or all of the above.
I'm the autistic person who jumps at almost every sound.
I'm the autistic person who can't be around small children or dogs.
I'm the autistic person who is creative, but very limited in opportunities to share my work in an IRL experience.
I'm the autistic person who depends 100% on a single family member for everything other than activities of daily living.
I'm the autistic person who lies awake at night wondering why people can care so much about helping sick and abused animals, but her, not so much.
I am autisticaplanet. I'm that autistic person who is isolated by her challenges, unsupported, not included, alone in her autism, seemingly stuck on her own planet.

Friday, March 16, 2018

I Was Born Autisitc (and most likely with OCD and anxiety, too)

Picture: Lundholm organ-Pixabay

At six months of fetal development, my mom noticed that I would violently kick in the womb when she played certain songs on the organ. My dad watched me leaping around in her stomach. 
It was a disturbing and confusing moment for both of them. They hadn't seen anything like this before.
Autism is a neurodevelopmental disorder whose traits show up often before 2 years of age.
I was diagnosed with Asperger's Syndrome for the first time in 1998. I was diagnosed with AS, mainly because I spoke early and scored 110 on my IQ test.
It is interesting to note that I didn't walk unassisted until 18 months old, was only interested in the shadows the low, incandescent chandiler lights made on the living room ceiling at 3 weeks of age instead of my parents or screamed, sometimes for up to a half an hour after the wind blew a door shut on the opposite end of the house.
I had intrusive, upsetting thoughts of harming myself or others going back to as early as five years of age. I recently learned this is part of OCD. I was not raised in an abusive home environment. I wasn't abused until I turned 11 and entered junior high.
I clenched my fists and tightened my muscles, rocked and cried each time my fingernails were cut. 
My parents didn't have a support group back in the 1980's. They had each other. They were my earliest advocates, my only ones, really.
Though I am verbal and my IQ is average, I still have high support needs. I need someone to drive me, pick up my medications, grocery shop, speak for me on the phone and keep me (physically, if necessary) from having a meltdown, which happens when trigger sounds overwhelm my brain's capacity to function.
I have PMDD, which is extreme PMS. I am currently going through the symptoms of paranoia and hypersensitive emotions. I am even worse at communicating and handling stressful situations.
I live with my sister in the Midwestern US. Now that forty is on my horizon, I pray, cry and wonder about what my fate will be should I outlive my sister, who is twelve years older than I.
Autism is a neurological disorder. There is no way around this. I think autistic people are so afraid of using the "d" word because of how allistic (non-autistic) people treat them.
I see their behavior as a reflection on them, not the autistic individual.
As a recipient of some allistic people's wrath, I am trying to be one of hopefully many voices of the spectrum who are able to compassionately educate both allistic and autistic (it is a broad spectrum after all) alike.

Wednesday, March 14, 2018

Lord, Grant Us Mercy!

Two wooden people figurines shaking hands

A friend recently told me that she "hates" the word deserve. She maintains that we are all sinners for whom God allows suffering, sometimes with no way out.
When someone I thought I knew sounds off in 180 degree curve opposite their usual perspective, it sends a shock wave through my body. I literally shake. This can mean having to terminate the conversation or trying my best to make sense of their radical and sometimes flawed mindset.
I am a Christian. I believe every word of the Bible to be inerrant. I also know by fact that people have misquoted and taken Bible verses totally out of context. I'm sure this has lead to skeptics and Christians alike doubting the Christian faith or walking away.
This isn't a blog post primarily about faith. It is about the aftermath of witnessing a abrupt change in someone or a revelation of something previously undetected on my radar.
I agree that we all are sinners. We all have broken one of the Ten Commandments and "deserve" the penalty, eternal separation from God the Father, God the Son (Jesus) and God the Holy Spirit.
We don't deserve God's forgiveness and yet God in his mercy has given us just that. Jesus freely died a Roman execution-crucifixion, which was a brutal death reserved mainly for murderers and even thieves.
Jesus didn't "deserve" to die. Out of His mercy, we who repent and receive His forgiveness are saved from eternal separation from Him and our believing loved ones who have preceded us in death.
Mercy, as defined at Dictionary.com means "kindly forbearance". It is to be shown to everyone, but especially toward those who it is in our power to penalize.
Will we still suffer, of course. Sometimes by the hands of others. We are to still show compassion and mercy toward others as we show Christ's nature when we do so. Fortunately, God is there to help us if we ask Him.
"It is by grace through faith you have been saved--and this is not from yourselves, it is the gift of God." Ephesians 2:8 NIV.
I know that when someone acts mercifully toward me, I sure as heck want to show mercy in return. The Golden Rule Jesus speaks of in  Matthew Chapter 7 says that we are to "treat others the way we would want to be treated". We aren't to have a spirit of heaping judgment on others.
Being autistic, I have a tendency to make snap judgments. I struggle with impatience (not having to do with an entitlement nature, but out of anxiety), sensory issues and anxiety that can make me judge positively or negatively.
Here is an example. Please remember not to judge me. Several times a mom has had a toddler having a tantrum in a store I reacted out of sensory overload and blurted out "Worst behaved kid ever!" before having a meltdown or fleeing for the door.
The first time a child from elementary school actually came over and rang my doorbell, I was so excited at the prospect of having a friend that I tripped on my way to the door and (unknowingly) got so animated that the little boy soon left. My parents had to calm me down and explain that he got overwhelmed and left, not knowing what to do.
I make snap judgments. He likes me. We are going to be best friends forever. She hurt me. We will never, ever be friends!
Add in sensory sensitivity, persist ant intrusive thoughts (part of OCD) constant anxiety and depression and perhaps you can understand me needing to keep my social interaction to the barest of minimums.
What still surprises me is the person's lack of mercy since their pattern has been merciful. I'm not sure if something bad is happening in their life or if we have hit on topics previously unspoken.
We have always been able to agree to disagree on politics and Christian doctrine (we are both Christians), but I was particularly unable to do so when this "deserving" business came about.
My sister is my only caregiver and advocate. She had been driving 35 miles both ways to work in my late mother's 28 year old car. She has been working hard saving for a newer used car while having to maintain the old one. I was excited to tell my friend the good news. She had found a car within her budget. One with airbags and ABS-something the old car didn't have. Living in the Midwest, I was very concerned for her safety driving on icy roads-sometimes not having heat!
Entitlement is what's really at issue here. The idea behind entitlement is that one "deserves" something without putting any effort into obtaining it. This term has WRONGLY been applied to those in the disability community who CANNOT work instead of not wanting to.
I lost Medicaid in 2016. My friend used to work for DHS, so she is familiar with the disability community and, as she has told me on numerous occasions, scams people pull. What is particularly hurtful was having this scam business thrown in my face as a stock response when I expressed my fear and concern. I asked her point blank if she thought I was scamming the system and the line fell silent. She then went on to tell me about a neighbor in her apartment building who got caught scamming Social Security.
It was a disappointing yet not surprising (given my track record with people) to be indirectly stereotyped. Writing a letter to let her better know my situation and how her comments made me feel yielded no effort on her part to discuss it later.
Another thing that bothered me was the issue of teenagers getting involved in the political process in the wake of the Parkland, Florida shootings. We can agree to disagree about gun control, but when someone tells me it is wrong for kids to be involved in making their country a safer place to live in by engaging in political activism, it gives me great pause in considering how much of a friendship I can withstand with this person.
I sent a card telling this person that in light of our recent conversation, I need to take a break from communicating with her. I think breaks are a good thing. I didn't leave her hanging and let her know it was fine to write back.
Perhaps in the time I take to reaffirm who I am and assert my beliefs, without interference from others, I will regain some stamina and perspective while growing in mercy and compassion.

Update: Grace is "unmerited favor". Mercy means "kindly forbearance". I apologize for the mix up.

Friday, February 16, 2018

Loneliness, Seeking, Trauma, Isolation: A Neverending Cycle

Beyond broken: photograph of a window with broken panes double exposured with barren trees against a gray sky. Credit: Allison M. Kramer

Content Warning: Abandonment, ableism and suicide, mental illness, trauma

On my last blog site, I wrote about having a friendship with my boss (which failed due to allistic behavior and my official ending of that friendship via a handwritten note).
I've written about how making and maintaining friendships is nearly impossible, because others don't enjoy spending time around someone who can't go most public places (resturants, movie theaters) due to sensory overload.
 I actually had a few friends for a few years in middle school and high school.
They were the initiators. One girl commented on how spicy the pizza in the cafeteria was. After commenting on the cafeteria food, I asked if we could be friends. She introduced me to another girl who in turn, introduced me to another friend.
Unfortunately, there were socio-economics at play. Abusive home lives with dads drenched in alcohol who ruined sleepovers by yelling and even hitting are traumatic images that haunt me today.
I never figured out until my thirties how it must have felt for those girls to come over into a loving home with a strong and kind dad (maintaining his sanity by sitting by the fire in the basement while giggling and music ensued upstairs).
As I've mentioned, my autism worsened during my late fifteenth and sixteenth year. I could no longer withstand shopping malls or be in a house where a dog was present.
By late junior year, one friend asked me if she could go sit with the other kids, as she was tired of getting teased by the other kids for being friends with me. I told her she was free to do whatever she wanted to. 
She did leave while I finished lunch with my Beanie Baby Whale on the table beside me.
Due to a knife threat, I wasn't in school past October of my senior year. I was surprised when my former friend showed up with my cap and gown that my mom had ordered. It had been sent to the high school and somehow, my friend wound up bringing it over. I still sought friendship, so I asked if she wanted to drive me to graduation rehearsal. I thought we had a good time, like things were back to normal, but at the end of the actual ceremony, she barely stuck around for photos. She isn't smiling in any of them.
A few weeks later, I was sitting near the door of the supermarket. My mom was checking us out. The line was too noisey.
I saw my (former?) friend approach my mom. I looked over and waved. She immediately turned her back to me.
I don't think she would qualify as autistic. Neurotypicals definitely don't play by the social rituals autistic people are sometimes forced to comply with.
I had made a boyfriend (really, enacted an obsession) over the winter. I met him in the juvenile psychiatric unit where I spent a week after my first suicide attempt.
I was still undiagnosed autistic, labeled schizo-affective and as a result, put on anti-psychotics.
We spent a little time at each other's houses and even talked on the phone a bit. Looking back now, I can say that I saw him as a social experiment. I liked him as a friend, but I wanted to experiment with the themes of domination and sensuality that raged in my adolescent, autistic brain.
There was a pool table in the basement. He came over one day and told me that he was now seeing the friend who turned her back on me. He gave me details regarding how they spent their time together.
I was so relieved that he wasn't any longer interested in me romantically that I never took offense and defended my former friend.
He must not have liked that, because he left soon thereafter. I got a message on the answering machine that he was completely done with me. I felt relief.
He had his own battles with (again) unstable home life, ADHD and depression. All of that was too much for me to handle.
I didn't have any friends that lasted long enough as a child. There was one girl (the woman I mentioned bwas my boss for one summer in 2012) who played over at my house in the summer once or twice and I did the same. She basically ignored me in school, or if she did talk, it was with an air of superiority i.e. "How are WE feeling today, Allison?"
Not including my friend from The Association for Individual Development whom I met in 1998, also the initiator, I have never made any more friends.
I find making friends confusing and intense. I feel every emotion at it's peak. When I am slighted, I get enraged to the point of meltdown or shutdown.
I am caught in a Catch 22-l can't trust others due to past expriences and I am seriously lonely. There is too much evidence to suggest risking vulnerability.
Loneliness is now considered an "epidemic". I am told in various news articles about how much shorter my life will be and how much damage I'm doing to my body-not by smoking, drinking or consuming massive amounts of junk food, but by being isolated and lonely.
I can't access my community as there is nothing free of screams and barks. Everything outside my home is a glaring variable. I never was able to regain the sensory stamina I had before 1996, despite professional treatments like AIT and TRT.
I need to clarify that babies and dogs, along with fireworks were still traumatic, even to the point of meltdown, but my sensitivity level increased greatly.
I was almost a total home bound person from 1998-2010, only emerging for trips to my grandparents (both deceased now) with my mom (now also deceased and with my dad in heaven).
I do believe that God did intervene in my life in June, 2010. I have written about this in another post. That was how the idea to search the Internet for earmuffs came about. I honeslty wasn't thinking about how to get back to going out again. God lead me. Whatever your view of Christianity is, I am certain in mine.
I was blessed to have had mostly positive psychotherapy from 2006-2014. Sadly, my therapist left the practice without notice. It happened during the final months of my mom's life. Further trauma of abandonment and evidence of a never ending cycle.
I'm used to people either abusing me, dropping out of my life or dying.
It's mostly why I refuse to enter into a romantic relationship. The dynamics of a romantic relationship honestly freak me out. In a romantic relationship, there is the added pressure of dealing with the others' family and friends.
The trauma of engaging with people over the past 38.5 years has taken it's toll. The isolation, abandonment, bullying and gaslighting has left its mark alongside the sensory sensitivity.
I am fortunate to have 3 people in my life who care about me, but I can only claim actual friendship with one who is 82. 
 The other two are family members with whom I wasn't close with personally.  They have looked out for me out of familial piety and reverence for my mom, and for that I am grateful.
But those three people are anywhere between fifty something and eighty something. How will I withstand the relationships I will be forced to make in the future (most likely social service workers and medical staff).
It scares me to contemplate living in a world where I am not loved and there is no one to love.
It greives me that I, at times, became in action not unlike the allistics who took their abelist mindsets out on me. I admit still struggling against retaliation and maintaining forgiveness.
As an actually autistic woman who wants more than anything to hang onto the sanity and freedoms I do have, I will risk an early death by loneliness than reaching out to someone and having a bad reaction-as in harming them or myself.


In reflection, I find I should mention that I live with my sister in a midwestern home on a street blessedly removed from small children as the subdivision is 50 years old. Finances do dictate that we will have to move in the next few years.

I only see another human (my sister) and actually talk to them for a total of 10-15 minutes a day. She does take a day here and there and watch a movie with me or take me to a forest preserve. A ray of light in the coalmine of isolation and resulting depression.

I talk to my friend via phone who lives an hour away from me, once a week. I have written another post regarding telephone policy.

I have an aunt I see or text on occasion.

I rarely leave home as there is noplace (other than where I have already mentioned) accessable.

I've lost Medicaid, so affording another therapist is not an option.
I fear telling my psychiatrist the truth out of past experience with horrible drug side effects and bodily/psychological harm by mental health staff in various locations.

Social media: Facebook was a nightmare. I find online communication even more frustrating as I can't interpret vocal inflection, which is something my brain prioritizes over body language or eye-contact.
I keep on praying through the pain, knowing that God is with me and this is not as good as life gets.

Saturday, February 10, 2018

The Day the Classical Music Played

Purple and red were the colors I chose the day the classical music played through an old, slightly warped and scratchy sounding record player.
Peaks and valleys gave way to holes in the paper made by too much pressure from my hands. Us six-year-olds were asked to draw how we "saw" the music.
Sight wasn't the first sense that came to mind. It was my hearing. I used the crayons to illustrate the stabbing pain I felt physically in my ears that wound up in my shutting down, hands over my ears and face down on the desk, near tears.
I had a kind first grade teacher who had something many other teachers lacked: common sense. She genuinely cared for her students. Noting my condition, she asked to see my paper.
"Oh my!" she said, asking for the paper.
She later called my parents, not to complain, but to tell them that something was wrong and that she was concerned.
The matter wasn't discussed further. I wasn't blamed or shamed by my teacher or parents. If my classmates noticed me, they never said anything to me about it.
Classical music, Opera and heavy metal are sensory nightmares for me, even played at a low volume. Classical and Opera are very "uneven" and "pitchy". There are unexpected peaks and valleys that trigger my moro (startle) reflex. Rock music doesn't have that. It is even and level to my ears. Country, R&B and Smooth Jazz are also tolerable.
The only rock band I cannot listen to, due to their choice in sound effects, is Pink Floyd.
Classic jazz ala the Miles Davis variety is also excruciating. Peaks and valleys abound.
I also hate live albums. All that hand clapping and whistling is torture. There is one exception, and I think it is due to the fact that it was an outdoor concert: Peter Frampton's "Frampton Comes Alive". I don't own the entire album, but do have "Baby, I Love Your Way" and "Do You Feel Like I Do?" I even like the part where he puts his mouth in the tube. This is in stark contrast to hearing Pink Floyd's "The Wall", borrowed from my sister out of curiosity.
Sensory processing disorder is a very real and life limiting part of my autism. I choose to say "my autism", because each person will experience their autism differently.
My hyper sensitive hearing affects my relationships with others, as well as accessing the world.
My hyper sensitive hearing worsened when I turned 16. I want anyone associated with neurology to take note. It is interesting that 16 is around the time that Schizophrenia and Bi-Polar begin. I wonder if there is a link that comes along with a growing brain and hormones? If you wish to share your insight, please friend-request me on Facebook.
My hyper sensitive hearing will affect where I live, when and if  I can work, the ability to communicate and form relationships as well as develop greater autonomy.
Intelligence alone does not make an autistic person "high functioning". It doesn't mean they struggle less or are less deserving of services. It doesn't mean one should receive segregated services like "Behavioral Health" vs. "Developmentally Disabled", a method AID (social service provider, Medicaid based in my state) of which I am labeled the former.
I loathe the broad use of functioning labels. That is another topic which I have covered in another post.