About autisticaplanet

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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, December 7, 2016

Autism Plus

Color spectrum with a sphere in the middle 

I once read a comment left on an autism article. The mother of an autistic child wrote "My child has autism plus." She didn't explain what she meant. Others asked what she meant by "autism plus", but I never did see a follow up answer.
That phrase has stuck in my head for the last several years. In light of having to once again explain why I cannot fully advocate for myself to yet another person not well versed in autism, I have decided to compose this post.
The following explains why I cannot hold down long-term employment (in part or in full), operate machinery (such as driving a car), talk over the phone to people and their sensory environments in which I do not know, or go into a welfare agency (I am not on welfare, but the Department of Human Services building is basically the same thing).
The stability of my sensory functioning is constantly in flux. One day I am slightly above average, coping euphorically with lots of sensory input. Another day (usually the following day), I am barely able to get out of bed and deal with the sounds around my house. It takes me 24 hours to decompress from a day out.
Sometimes, the television is too loud, even if at its usual volume and certain shows are too painful to hear.
Even incandescent and CFL light, while usually not a sensory issue with me, can become one when under stress.
I have chronic migraines. I experience poor coping skills before I ever feel pain. Sometimes I smell smells that aren't there like the smell of my Micro Machines frying in the microwave-I killed them back in the 1990's.
Low pressure fronts that precede thunderstorms also compound my coping ability and trigger migraines.
I use Rx strength medication to deal with the horrific pain, but still often have to lie down in my darkened bedroom.
I have PMDD (Premenstrual Dysphoria). While I am on Rx medication for this as well, I still experience migraines and fatigue before and during menstruation. My coping ability is diminished during this time.
I also have SAD (seasonal depression). Though I use light therapy and take vitamin D, I still experience extreme fatigue and irritability during the fall and winter months.
I sleep more than the 8 hour average. I am on psychotropic drugs for mood as well as an antidepressant and anti anxiety medication. These meds work for me, but that does NOT mean anywhere close to autonomy.
Each day I wake up is left up to chance. I have no guarantee that tomorrow will be as good or as bad as yesterday was.
What I do know is that I NEED supports just as bad as the nonverbal person with an I.Q. of below 70 (the gold standard for getting services in my state for autism). Those supports include:
Case management
Financial assistance (SSDI and Medicaid)
Behavioral health
Representation (someone to speak and go to a place in my place when I cannot)
Sensory accommodating housing (down the road)
SNAP (down the road)
Someone to carry out my final wishes
Someone to visit me and act like a friend or neighbor (now and down the road)
Acceptance and these supports will go a long way in making sure I reach my God given potential and lead a life that is both safe for me and for others.
This is what "autism plus" means for me. A daily juggling act for someone who cannot juggle.

I was blessed to have this post accepted to Confessions, a Christian mental health blog on WordPress. Check out the blog along with the edited version of this post.

Merry Christmas, Hanukkah, Kwanzaa and New Year!