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.

Thursday, March 30, 2017

For me, autism means...

Autistic woman 4 square sequence typed personal autism attributes.
April is 2 days away. I understand if you subscribers (thank you for reading) wish not to read all the notifications flooding into your inbox. Go to pixteller.com to create your own autism awareness infographic. It's free and easy enough for this quasi-Luddite to operate.
Compassion before judgment!

autism...not so black and white

Autistic woman's face in black & white with color text descriptions of how her autism affects her.
I will let this image I created using Pixteller speak for itself. Share if you find this helpful. Make your own for free@ Pixteller.com

I had a meltdown in my psychiatrist's office when she yelled at me (I have autism and spd)




Woman holding head in hands
Wednesday, I went for a routine psych assessment which lead to a meltdown which included me beating my head with my fists, and a walkout.
It was a good thing I was already chewing my chewable, silicone necklace.
Braided chewable pendant by Stimtastic

What precipitated the meltdown and walk out was being yelled at (a deciBel level below screaming range and above emphasizing speech) by the doctor, who claimed in a previous appointment to know something about autism and sensory issues.

I took myself off of an anti-depressant because it was making me suicidal. I was already dealing with a major depressive episode and still am. I kept and went back on the anti-depressant that I knew and trusted. I felt better in a couple of days. Better meaning non-suicidal.

I never thought once of calling to discuss my decision with my doctor. It honestly never crossed my mind. For that, I am sorry. I made an unintentional error.

After replaying the visit dozens of times over in my head, I could see where she would have been scared hearing this news and thus given over to raw emotion. Doctors do have some legal responsibility to their clients. I imagine manners could have evaded her for the moment.

My stomach churned when she exclaimed, "You COULD have TOLD ME!"
The bluntness with an abrupt rise in volume had my heart pounding, fists clenched, breath shallow and mind whirling.

"I never thought to...I did it on Thursday, you aren't there on Thursdays..."

"Well, they [the clinic] could have called me.

I told her not to yell at me, but, as with so many in the psych field, (it doesn't matter the degree of training), she defended herself by saying she wasn't yelling.

It's the defending and excusing and often blame-shifting that shuts me down. It used to make me go ballistic, until I got hospitalized and bullied on all major levels as well as my mom's death that has driven me progressively inward.


By now, I am madly chewing my stim pendant. My body is imploding and I can't think because I am feeling anxious and once again, invalidated. 

There is a split-second gap in my brain. Then, the punching begins.

Further humiliation.

Again, she yells at me, "Stop doing that RIGHT NOW!"
Is he being naughty or having a meltdown? Toddler crying, covering ears

As if I am a 2-year-old, small and invalidated by the grown-up in charge.

It is all I can do to get myself out the door before she does something else to make an already bad situation worse.

Thank God my SAFE PERSON was there! That is why I talk so much about "high functioning" autistic people like me needing to have support people to go with them into the public.

I run outside the building. I am done with her. 
I get the pepper-spray out of my purse in case she comes out and tries to catch me. I ran around the building and saw her, but she didn't see me.

I am 37 years old and my own legal guardian. Nobody can make me do anything without my consent.

I come back inside when I am ready. My sister is talking with the administrative assistant. The doctor is gone.

She had already talked to my sister, telling her, 
"She probably won't want to see me again," and went back into her office. Shortly thereafter, I came back in.
Her assumption was the correct one, though yet another assumption treated as a mutual decision.

I tried to have a positive attitude toward her, but the first time I saw her, she greeted me by bringing up my adult criminal record from 19 years ago. 

She knew about "damaged filters" right off. I focused on the positive. She knew I didn't do phones or go to places too stimulating for me.

She also assumed, instead of asking me, that I didn't do computers because of the screen brightness.

I HATE it when someone says to me, assuming, "You don't do that because...you won't like that, because...I am going to do x to you, because..."

Remember the saying about the word assume. It makes an ass out of u and me.

If you use sarcasm and/or yell at an autistic person, especially when you know they are already stressed out, you can expect they may hurt themselves, cry excessively and even hurt you should you try and physically harm them.

If you have no better sense or respect for an autistic individual, remove yourself from their presence and decrease the misery.

I wish nobody became a psychiatrist, therapist, case worker or caregiver without having as much street training with autistic individuals of all ages as they did book learning.

I spent the rest of the afternoon and evening in bed. I had to take extra anti-anxiety medication to calm my body down.

Kudos to my sister for her calmness in handling the situation with calm rationale and driving me home without adding words. 

April is days away. The awareness and acceptance campaign for 2017 is off and running. 

How do things look from my small corner of the world?

Bleak on both accounts from the Northeastern Land of Lincoln.

Update: My psychiatrist e-mailed me, apologizing for the way the appointment ended. In my experience, this is rare for a medical professional to do. I give credit where credit is due. I relayed my acceptance of stated apology. 













Sunday, March 26, 2017

Autism is and isn't-a poem by autisticaplanet

Autism 

It isn't over in 30 days
It doesn't only affect the male sex, children, teens or white people.
It isn't just a different way of thinking.

It is meltdowns and shutdowns from sensory overload.
It is often expressing oneself better through writing than words.
It is often too loud, bright, smelly, rough and itchy.
Eye contact creates panic.
It is needing safe places
In which to process and recover.
It is helped by people listening instead of judging.

Sleep can be fleeting
Bowels inflamed
Head banging, flapping or rocking

Chewing or spinning stim jewelry to alleviate anxiety
Noise canceling headphones, sunglasses and hats
Sometimes medication

It can mean marriage and kids
It can mean one, both or neither

It is a vast spectrum
In which women are being treated as the newcomers
There all along
Diagnosed in middle age

All too often it means 
poverty
isolation
persecution
unemployment
and saddest of all, much talent and creativity remaining stagnant.

It isn't always low IQ or absence of speech.
It is thinking in pictures, patterns or words

It brings out the worst in bad people and the best in good.
It predates 20th century diagnosis
There is no magic bullet cure
Some don't want one. Some do.

All too often, autism is a political and cultural war waged by ideologues.
 It is star-studded celebrities asking people to "Light it up blue" on April 2.

Autism is-- it isn't going anywhere.
--------------------------------------------------------------------------------------------------

Read blog posts and books by autistic authors.
Listen to and take seriously the autistic people in your life.

Don't bully an autistic person. Don't bully anyone. If you are autistic and bully, seek psychiatric help.Bullying is an ugly disease. Stand up for the marginalized. 

My PC is crashing as I'm trying to finish this post. I wanted to put in pictures, but it can no longer process images.

I feel like my voice is cutting in and out.

Help me in spreading awareness and promoting acceptance.

The Onion in the Petunia Patch-Chapter One

These are the chapters to the book I wrote. I posted the introduction a few months ago. I hope you gain something from reading.

Chapter 1: My Ball of Wool: Sensory Processing Disorder and how it affects me.

Imagine a sound that you absolutely cannot stand at even a low volume. Maybe it's a lawnmower, jackhammer, birds chirping, or sub woofers thumping from a passing car. Maybe it's a complex sound as in a song-THE ONE SONG YOU ABSOLUTELY CANNOT STAND TO HEAR because it brings up turbulent emotions each time you hear it or it makes you angry because it demeans women and/or minorities. 
If you are more visually oriented, imagine the worst nightmare you ever dreamed, watching someone you love die, blinding strobe lights. If you are tactility inclined, maybe it is the feel of wool or burlap being brushed against your skin. Now imagine what ever the dreaded thing is- that it is pervasive. There is no escape from it. If you turn on your TV, there will be a flashing strobe light on every single channel you watch. If you go outside, birds will chirp, not only in the spring and summer, but also in fall and winter-all day and all night.
 At your work/school you will brush up against wool walls, furniture, and electronics-everything you are exposed to including your clothes will be wool. Add this to your entertainment schedule, too. Whatever the dreaded thing is, it will be in restaurants, amusement parks, movie-theaters. Your only choice is to flee and remain in isolation.
 Don't expect much sympathy from most NT's or even some ASDs, either. Some common things you can expect to hear are "Birds are dear little creatures-how can you hate birds?" But you don't hate the bird, do you; you hate the noise the bird makes. "Strobe-lights are sweet, dude, wear sunglasses!" "Wool is durable fabric! Be glad you have clean, warm clothes!" 
Summary: If you are autistic and have a sensory integration disorder specifically centered around one thing (alive or inanimate), you will be seen as a hater of the thing than as a sufferer of the byproduct caused by the thing. 
It's not the thing's fault. Birds must sing in order to mate and secure their species. Wool and strobe lights are what they are. None of these things has waged a personal vendetta on you. It just happened that you were born autistic and had sensory integration disorder that wasn’t treated or is in the process of being treated.
At the moment, however, none of this can help you, because wherever you go and whatever you do, whatever it is that melts you down, keeps you home, unemployed, and depressed, because it exists everywhere and you have not learned to cope with it, making you feel like you are a brand of autistic uniquely apart. And that, folks is a place colder than hell frozen over. 
My ball of wool? CHILDREN. Babies and toddlers. They cry, squeal, scream, and squawk-which is what kids do. Unfortunately, something is not wired right in my brain-and hasn't ever been but worsened during my teen years. 
I've been down many mean streets and hard journeys throughout my 21 year sojourn in my never-ending treatment odyssey. My mom sojourned along with me until her death in 2014. 

It isn't until more recently that I underwent therapies to force my brain to change some of the way it is structured. This is the best way I can describe my sensory sensitivities to you. 


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





Employment

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

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


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


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


The next day, the woman who was training me got mad when I couldn't unlock a file that was inside a built in safe box in a drawer. I didn't have the motor skills to twist the sticking combination lock right and left.

I was sent to one of the regular checkouts instead of the central desk and told to keep the candy supply stocked.

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


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


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


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


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


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


I wasn't fired. I quit on my own terms.

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

I would never work in retail again. I did work from home for a year via DHS, but the funding dried up for at home work.

I was also a cat sitter for one summer back in 2012. I enjoyed doing that as I like cats. I quit, however, when I was promised job security through Christmas and my boss changed her mind. I wouldn't be lied to and be fired unexpectedly.

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


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


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


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


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


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


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

            


Monday, March 20, 2017

First Day of Spring

Cherry blossom tree in Springtime with light blue sky

Today is the first day of Spring. 
As of late, I have presented a lot of dark, weighty subject material. I thought it was time for something positive and lighter.
While Winter serves as a cushion and break from the outside sensory world, it also renews me for the next season.
Spring helps me to appreciate the present a little more, as Summer can be tough with kids being off of school and setting off fireworks.
Here is to the present.
I also want to take the time to thank the Lord for always being with me, no matter how dark things get.

Saturday, March 18, 2017

Autism and independence: It's individual

Concept: What works for some doesn't work for all. Red square peg can't fit in round hole.



Maybe it's just me, but I am greatly concerned about the motivation(s) behind the NT movement to get autistic people employed and living independently.
 It is every parent's hope to see their kids grow to be safe and content long after they are deceased.
The government would love to see more disabled people paying taxes instead of relying on "handouts".
For those autistic people requiring minor support who can cope with the MANY aspects of living in the everyday world, with its noise and confusion, speed and growing cultural apathy who can do a job, it is important and it matters they receive and have access to those supports.
I am in no way against the personal betterment of each and every autistic individual to attain the best life possible- for them.
I am concerned that those who cannot ever support themselves given their autism, those like me, could lose supports and be expected to do things their autistic peers do. 
My fear is based on the gross misconceptions surrounding autism, some I have witnessed firsthand.
Sure I can work. I'm smart. I'm just being lazy and immature. I can work at Hobby Lobby because I'm creative. I'm just screaming when a sound is too loud or I'm overstimulated to get attention. I either do what is expected of me, or I get punished via needle or discharge (depending on if I'm in a hospital or working with a social service agency.
 I've had this crap hurled at me since my early twenties by psychiatric hospital staff and social service programs. I've decided not to get re-involved with state-run services for my own protection and well-being.
My former caseworker was candid with me about how the organization she worked for runs. It and others like it are designed to get clients working and living on their own.
I am an example of an autistic adult who can't do that. It has nothing to do with my IQ and mostly everything to do with my sensory processing and co-morbids.
Clients work in noisy, sheltered workshops or in retail. The motivation is to get people out on their own unless they have a medical reason they cannot do so, and Asperger Syndrome (the terminology is still used even though the DSM 5 editors omitted it) in itself isn't viewed that way.
Having a case manager work as a companion isn't how things work, but they did allow it until I lost Medicaid. 
Left on my own with an ongoing major depressive episode that began in January of 2016, I slept most of the time away. I found out that my TSH (Thyroid) level was dangerously low. My medication has been adjusted. 
Situationally, I remain in limbo. I think of the few things I enjoy doing, photography and making beaded stretch bracelets, and I wonder how, if I could work from my predictable, "autisticaplanet friendly" home, how I could earn money probably; not enough to live independently- doing so entails much more than money but to engage and utilize the skills I do have.
Some skills I have:
1. I have an eye for detail-I have been told I see what someone else might miss or the person says they never thought of something the way I made it.
2. I enjoy repetition. With stretch beading, once I have a pattern down, I work quickly. 
3. I am highly organized and always have been. 
4. I learn visually, so a training video on YouTube would work well for me. YouTube is free so it would cost an employer nothing to train me.
5. I communicate best via e-mail and/or text messaging. I put into detail what I cannot when distracted by another person in real time.
6. ICYMI, I can type 😃
7. I can work flexibly from home. I did it when I actually was employed for a year back in my early 20's. With a custom arrangement with the same service agency my case worker was employed with, I assembled small pieces like bike bottle lids and caps. I could be out one day with a migraine or in a shutdown for two and feel rested enough to finish my work. I generally had 5 boxes of 500 lids. The job ended when the work companies sent out to the sheltered workshop lessened. They told me they had to keep the work for the actual workshop employees, the ones that physically came there.
I felt satisfaction and a sense of contribution. I actually was delighted at the part of my paycheck that showed the deduction for social security.
I might not be able to live or work independently, or pay taxes. That really shouldn't be the point.
The salient points should be in my having responsibility and structure- on a level I can handle as well as being content.
A sense of community and continuity of care are also vitally important.
I do have disabilities, I am not just different.
I am an individual, what services I receive and what I can contribute should reflect me, not a majority or stereotype.



Thursday, March 16, 2017

Obsessive Compulsive Personality Disorder-What it's like-for me

Photo negative of blog author lying on floor with OCD description
I write mainly about my autism on this blog. I have not got into my co-morbids much. 
When I was about five years old, I began to have unwelcome, unpremeditated thoughts. They were intrusive and did not reflect how I felt toward others.
I kept hearing a (non audible) voice like "Push your mother/father down the stairs" when I would be behind them on a staircase.
I "hear" an imaginary voice when I am reading. I don't know if others hear themselves read, but I do.
I was also blessed with loving parents. 
The thoughts I had were confusing and scary. The last thing I wanted to do was hurt or even kill my parents. 
There were other directives, such as take one way around to the back yard or bad things will happen to you (meaning me).
I thank God I didn't give into the inaudible voice, impulsion or compulsion. I could better function overall as a child.
Most of my intrusive thoughts are negative. They tell me what a bad person I am and how I should just die. They tell me how fat and ugly I am. They tell me to kill people or things-this former thought appears when I have suffered an injustice, perceived or not.
I've been in permanent therapy since I was sixteen. 
I was diagnosed with Schizoaffective disorder and put on anti-psychotic medication.
I gained weight and craved raw, uncooked meat. My face and back broke out in sores. 
During this time, I was bitten by my new pet guinea pig. I killed her. I am sad to say that it was premeditated. 
I also tried to jump out a window and end my life.
That was in 1997.
I don't want to repeat the horrors of my late teen-aged years.
Today, I know my true diagnoses. I am on medications to make living with impulse control issues, chronic high anxiety, obsessive interest, chronic migraine, depression and thyroid disorder manageable.
Manageable, for me, doesn't mean I work 40 hours a week, drive, own a home or have romantic relationships. 
Manageable, for me, means that I get to live with my sister in the suburbs, go out in nature or for a short shopping trip (assisted). I get to make my stretch bracelets and blog on my own computer, in my own bedroom.
Had I not had a loving mother with strong instincts back in 1997 (it was just her and me living together back then), I probably would have wound up dead or in jail.
My mom should have had so much more in the way of peer and medical support being a widow with an (undiagnosed) autistic teenager. There was no Facebook or physical places for parents to meet. 
We did go to an autism support group in 2007, but I was gossiped about and shown the e-mails by a group member, because I had an opinion that differed from the rest of the herd.
I was cyber bullied by parents of autistic kids that ran a meeting once a month for autistic adults-I was one of two.
I still struggle with impulsive behavior that can turn compulsory-especially when wronged or I become impassioned with someone/something.
I called the support group and left a filthy message on their answering machine. I hit a man at a bookstore when he yelled at me back in 1998. The startle and injustice yielded an unpremeditated hit to the head with a canvas I had brought as a prop for a poetry meeting I was told twice was on for the evening.
I was upset about the cancellation and wanted further information. I didn't wind up throwing my canvas at him because I didn't get what I wanted. It was him yelling, startling me.
When he called 911, I ran out into the running car and told my mom to drive.
I couldn't let go of my anger of that man. I saw every bully who had ever hit or had threatened me. I made the biggest mistake of my life and mailed a death threat to the bookstore.
By God's grace, I didn't go to jail. What I did do is get myself an adult criminal record. I got time spent in a psychiatric facility. I got banned from the store for 2 years (I never went back). I got a terrified mother. I cost my family legal fees.
I have strong passions to this day. When I am wronged, when I am in love, when I am interested in anything, I invest much emotion and time.
The difference now is that I am 37 and medicated. I know not to threaten people. I know not to profess my undying love for a certain celebrity on his Twitter feed. I know also to beg God for help in prayer.
I hope and pray He will always make sure I have supportive, non-judgmental people in my life to keep both me and others safe.
I know I will need psychiatric and medication monitoring for the rest of my life. I am fine with that and hope I will always have that help available.
The worst thing my mom could have done was to have done nothing at all. Don't ignore a person who you think may be depressed, angry, suicidal, etc. Better to ask and risk offending the person. If they are like me, they will secretly be glad inside that someone cares enough to help.
National Suicide Prevention Lifeline: 1-800-273-8255
NAMI (National Alliance on Mental Illness) Hotline-1-800-950-NAMI 
You can also text NAMI during an emergency: Text NAMI to 741741
e-mail: info@nami.org


Tuesday, March 7, 2017

Lack of support...

Box/Gumby type person comforting another in big square. They are alone in the small box. The concept is that the small square is reality and the big one is a wish.

Monday, March 6, 2017

Vital to have a quiet living environment for this autistic woman

I am like an almost empty glass (there's always a little anxiety stored) when I leave home. That glass quickly fills up with sensory stimuli. I become overloaded and need to return soon or I will go into sensory overload, have a meltdown and wind up hurting myself and possibly others.
At home, there isn't a constant barrage of noise. Thankfully, nobody directly around my house has kids. There are dogs next door, and I do use three different white-noise machines throughout my home to keep me as calm and functional as possible.
Having autism, I feel everything around me to the extreme. I feel extremely angry with someone if they hurt my feelings (intentional or not). I have to get away to a quiet place so I won't harm them or myself.
I have to get away to a place devoid of sensory stimuli to calm down and mentally unpack the stressful events to get to a place where I am rational enough to engage with the world again. That can mean hours or days.
I will always need as quiet an environment as possible in which to live. I hope more housing opportunities for autistic people with sensory issues and impulse control will spread throughout the country and world. Especially for those who cannot financially support themselves and rely on SSI or SSDI.

Questioning the current autism spectrum model

Color wheel. Concept: autism spectrum redefined.


Can an autistic person be both high and low functioning?
Is this even the right question to ask?
I've heard the term "high-functioning" and "low-functioning" used for autism for nearly two decades, when I was first diagnosed.
I am not offended by the terms, but confused by them.
What is in question? IQ? EQ? verbal and social skills? How about coping with co-morbids and sensory processing disorder?
The autism spectrum is often seen as linear, with low on one end and high on the other.
This is one dimensional and I think, misleading.
I read Rebecca Burgess' insightful article on The Mighty , illustrating the autism spectrum as a color wheel using a sweet and insightful character named Artie. I highly recommend clicking on the link and reading the link as it will better help you understand what I am about to say.
My IQ has been tested in adulthood twice. Each time, I scored 110, considered a B+ grade. Intellectually, I could say I'm high-functioning.
I can speak, though I sometimes have to stop and think about what I have to say or wind up repeating words while I try and think about what ones I want to use. I do well with writing/typing. It is premeditated. No one is waiting on my response. I can communicate on a deeper, philosophical and emotional level. I could say that I am high functioning verbally and moderately functioning with communication.
When it comes to sensory processing disorder, I don't know. I don't have many issues with sight, smell, or taste. I have a little trouble with spatial ability, especially in tight spaces or 90 degree angles. That means I bump into a lot of stuff.
Most of what I call "severe" comes from my auditory processing. I am hearing sounds louder than most. 
In early grade school, the people that gave the hearing tests to kids remarked at how I could hear both high and low pitch sounds at very low volume. I screamed when the scratchy records were played. I have hated classical music all of my life due to the sudden changes in pitch and volume. I cannot be around small kids crying. I often played on the edges of the playground as a girl. I couldn't handle the doorbell until I was in my tween years. Dogs barking, neighborhood fireworks, car horns all caused extreme startle (moro reflex) and automatic meltdowns.
My auditory processing worsened in my teens along with my body's ability to regulate hot and cold. The only sound that became manageable was the doorbell.
 Sensory speaking, the auditory part excludes me from so much of what life entails: socialization, employment, community service, that I would not be exaggerating to call myself severe.
I do not drive a car due to the fact my mind cannot process too much stimuli at one time. 
I have always been a slow learner. Repetition was and is the only key to retaining information. Yet, I wouldn't qualify as "intellectually disabled", because I do eventually get the concept-unless it's math! 😉
I think the answer isn't the labels. It is a problem in how we perceive the one-dimensional model. It is outdated.

Friday, March 3, 2017

My autistic brain

Profile of a face with a rainbow colored brain. Personal autism attributes in various colors font.
Since I am a visually oriented thinker, pictures come before words. Words flow easier if I can create an image or images first. Here is one case in point. I am very grateful for PixTeller.com for providing the royalty free images and designing capability.

Accept and include or [further] isolate and divest in adults with ASD

I do view my autism symptoms as disabling. To not be able to socialize (though I need very small amounts as compared to NT people) or contribute save from behind a PC keyboard is tremendously depressing.
There is much said about accommodating autistic kids. From schools to movie theaters, action has been taken to better include autistic kids. 
Those same kids will NOT outgrow their autism. They may better learn how to cope with their anxiety and frustration, but there will always be barriers, through no fault of their own, they cannot overcome.
As adults, what will happen for the once accommodated kids who now need inclusion and accommodation in NT oriented institutions of learning, living spaces, recreation spaces, shopping and social services.
Autism is a very broad spectrum. Not all autistic people who are verbal and have a higher IQ function as independently as Temple Grandin. 
Mean spirited people, actually parents of autistic kids, have referred to adults on the spectrum as "Dorito eaters" who sit in front of their computers all day and eat Doritos. This actually was a common term on Autism Speaks forums back in the mid 2000's when I was naive enough to be a member.
Though I don't eat Doritos, the mean spirited term does painfully touch a bit on a stereotype for me.
To some degree, I am the stereotypical autistic adult who sits behind a PC or TV most of the day. My parents are both deceased and I am 100% dependent on a single family member. I am slightly overweight and when I have meltdowns, they are violent. I don't drive due to the stimulation of the world around me. Any change outside of my decision making is hard to process, sometimes to the point of tears.
However, My emotions are felt intensely- I am not devoid of them. I do have a friend. I am not tech savvy. I don't own a smart phone and don't want one. I am creative and have a vivid imagination.
With all attributes and deficits included, where do and how will I assimilate into my community?
Perhaps providing support for people with an IQ of 71 or above and who can feed and dress themselves is a good place for services like Day One Network to start, unless you live in corrupt state that has suffered a pension crisis and whose solution is to begin with cutting as many social service programs as possible. 
Moving is not an option, because my sibling's job is not one they can duplicate elsewhere. 
It is beyond depressing to keep on hearing "no", "sorry" or "best wishes" when reaching out to various organizations that help find services for those with autism.
I am 37. I could live another 30 years. Perhaps 40. Imagine if this is you or your child and 3-4 decades of chips and PC/TV are all that awaits them.
I would write my Governor yet another letter, but I am tired of the same form letter I keep receiving with the same tired cliches: He is aware of autism. There are tough choices to be made given the budget crisis. He thanks me for writing and tells me not to hesitate contacting him in the future.
God designed each of us with a purpose. Not all are able of nurturing and giving of that purpose without help.
Yet taxpayer dollars keep going to Planned Parenthood to fund abortions, some of those being babies with special needs (Down's Syndrome, Spina Bifida). It is haunting to read comments like "Well, better to abort the fetus as not everyone can afford to care for a child with special needs." I read that comment on Facebook. Fetal testing for autism is already taking place. 
I listened to a Ted Talk. A geneticist was giving his case against "designer babies". 
If you saw the dystopian "Gattiga" in the late 1990's, you know about how the genetically modified (GM's) could dominate and rid the world of "naturals"-non-GM people.
Here is a TED talk by Paul Knoepfler that further explains how creating GM people would be a bad idea.
Has the love of money totally eclipsed human compassion? Kill autistic people before they even enter the world or invest in them-those like me who aren't going to Silicon Valley or living independently while coding the next big thing. 
God declares all lives are valuable, even if they can't lead what secular society calls "meaningful live$".

For you created my inmost being;
you knit me together in my mother’s womb.
14I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
Psalm 139:14-16 NIV