Living with an Autism Spectrum Disorder (Asperger's Disorder) as an adult female.

Travelling Earmuffs May 2016

After an extremely stressful week, I was so very grateful to God to get out of the house with a family member and visit the Anderson Japanese Gardens in Rockford, IL. Please visit if you get the chance. It was busy for a Monday, but definitely do-able.

I feel less autistic in nature and behind a camera lens & that is a GOOD THING -for me.

http---www.pixteller.com-pdata-t-l-396008 (1) I know the dog appears to be an irony. I hadn’t planned it, but now that I’ve discovered it, I like it:)

As I have said, I am not your typical autistic person. I have several experiences that I find do not correlate or even exist compared to others across the spectrum. I have formed my opinions based on several blogs I follow along with articles I read on the web. Due to the isolation I face largely due to hypersensitive hearing, I don’t have any contact with autistic people or many NT people for that matter.

2 years ago, my mother died. This left a gaping void in terms of daily communication and company. While I live with my sister, she is working most of the time and by the time she gets home from an exhausting workday, there is little time for visiting.

She is an animal lover. We thought it would be a good idea for me to interact with something that didn’t bark or need walking, so, we adopted a 4 month kitten last August. My sister owned cats that were unusual in that they never tried to bite-ever. They provided me invaluable companionship, but the situation also led me to believe all seemingly sweet felines were exactly like them.

Autistic people tend to think in absolutes. I struggle with my neuro-makeup, which is, in part, engineered to extremes and insistent on formulas with very little variation in pattern.

I also thought all kids lived in houses like mine (with very little variation) with 2 loving parents. In short, I thought every other kid led a life very similar to mine. I used to wonder why I was so targeted and horribly bullied throughout my junior high and high school years. I believe that one of the reasons was my gentle, trusting and unassuming nature.

I had prayed about the decision to get a cat. At the shelter, no kitten acted overly impressed with us until the last one-a kitten 2 months past the average adoption age, came running over to me and jumped into my lap. I continued to pray and felt peace about adopting her.

Once home, she ran behind a dresser and refused to come out for about 20 hours. My animal loving aunt came over and we moved the dresser out and got the kitten out. She didn’t put up a fight, which I took as another good sign of a frightened, but sweet kitten.

She then went on to acclimate to the house, gradually gaining more privilege as she learned to follow the household rules. There was no harsh discipline. I tapped her on her nose when she tried to play bite. I did lots of research online regarding kitten behavior before adoption, so I knew that she wasn’t being mean. I was sure it was a phase she would outgrow. She got sent to her room when naughty for a time out. That worked well for jumping on the coffee table or climbing the lampshade for the 5th time in a row.

As she entered the kitten version of puberty-about 6 months, another facet to her personality presented itself-independence. Some of these changes, while anticipated, were extremely hard, as processing change is very painful and draining on me physically and emotionally.

I was sitting, petting the cat one night. She had voluntarily hopped into my lap. After a few minutes, she turned around and bit me (not playing). I shook inside and my heart raced. Beyond feeling betrayed, my anticipatory anxiety kicked in and my trust was gone. Still, as the longing for affection and acceptance supersedes the limits I set, I kept on reaching out to her, quite literally.

Talking to family didn’t help. I find that when people don’t understand a matter, because they, themselves, don’t have to live it, that judgement and apathy follow. My sister and 1 extended family member care about me and aren’t mean, but they don’t really understand my neuro make up.

I heard the all familiar (for me) sayings like “It’s all in your head”, “You worry too much”, “This is normal behavior for a cat”.  I learned not to voice the innermost concerns of my heart.

While the last quoted statement may be true, it did nothing to help my fragile self-esteem and deep need for a stable and predictable environment. It is essential for me to keep my violent outbursts to a minimum. As I said, I need a quiet and predictable living space to ensure safety for others as well as myself.

The cat never witnessed a physical or verbal meltdown in all her time living with us.

I pressed on, reading up more on cats. Trying to decipher body language (like a metronome moving tail) was a challenge as reading non-verbal body language is something my brain doesn’t hold in high priority. Unless a person is screaming, waving their arms like a madman, chances are I won’t know whatever mood a person is in. I’ve even walked in on people sleeping (of the non-snoring variety), talking to them until I kept getting no response. It was out of concern for their safety that I looked at their face and saw closed eyes.

I learned to watch for body language out of personal protection. I watched for the “metronome tail”. I didn’t hold the cat if she struggled to get down or rise up on her back legs and swat at me with her front paws.

I would clap my hands and say “No!” as I didn’t want her to try and establish dominance over me. I hoped and I prayed that she would learn not to bite or swat anymore.

I think animals sense when a person has a difference. I have talked with my sister, and she says that the cat tries these behaviors far less with her. I wonder if she senses my anxiety and it puts her off.

I trusted several times in the past 9 months we’ve had her and had that trust broken over and over again. I feel like every social attempt I make is thwarted because of my autism.

The sense of isolation and mistrust I feel is deep and far removed from the realm of others on the spectrum-or not.

I have given the care of the cat over to my sister, but I am still left alone all day with a cat I can’t trust. I don’t want my sister to suffer the loss.

I long for the same things most others long for-and may never get-acceptance, engagement and sympathy(not merely empathy). I don’t have a”tribe”.

Apart from God’s unconditional love and the love some parents feel towards their children, I don’t believe universally in unconditional love. I’ve heard the phrase “Animals love unconditionally” but have not experienced, with enough consistency, that phrase to be true.

I’ve learned to disengage and withdraw. This ensures the safety of myself and others.

I hope robot pets will make a come-back. I think I would benefit with something programmed a certain way (complacent and obedient) as well as not having teeth. I also wouldn’t need to spend money on food or vet bills. While I do have a normal concern about robots taking over the world and making me their slave, I also hope that there will be software to circumvent that.

As I’ve said in other posts, my autism blog is NOT generally a blog about success and independence. I strongly feel that autism is a disorder with very disabling effects. This is based on my lifelong experience with it (as well as the pain and confusion in being undiagnosed until age 19).

My hope in disclosing much of my personal pain and some of my few successes is that the medical community may discover it and advocates might think about fighting for things like housing and employment that protects myself and the public from the violent consequences that can and do occur from some autistic individuals when overloaded by mainstream culture.

Please pass along to anyone you think may be able to help me (and others who share my experience-if those people do, in fact, exist.

I don’t take comments, because the mean ones cause me physical as well as emotional pain. If you post this to social media, you are the one who assumes responsibility for the comments, so I hope you are a brave person with a thick skin.

That said, I give thanks to God for cable TV, Netflix, DVDs and some of the internet. They are my predictable companions.

Update: The cat was re-homed 9 days after the writing of this post. She is living with a friend of my sister’s who loves cats and has a very calm, laid back personality.

I trust in God to see me through this heartbreaking time. Christian prayers always welcome.

 

 

Next Steps

Broken Light: A Photography Collective

Photo taken by contributor autisticaplanet, a woman in her thirties who has Asperger’s Syndrome and accompanying anxiety related to social and sensory issues. She also has OCD. She writes a blog to pass along lifelong lessons to help those, adults in particular, dealing with Asperger’s. She hopes to help neurotypical people better understand the “complexities within the complexities” of autism spectrum disorders. She has had a passion for capturing images since childhood, when her father bought her a Kodak 110 on vacation. She’s been told that she sees and captures what others overlook or miss. Her work has been featured in the Daily Herald as well as the MAAP Newsletter, a publication for those with ASD and those who love them.

About this photo: “​​​​There are some changes going on in my life right now, but I am trusting in God and keeping a good attitude. Though the steps…

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Don’t feel bad if you can’t read the book @ this time. I’m not a big reader myself. It can be downloaded for later.

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I am blessed to announce that my work is now being sold! Mom & Me Unique Boutique in Elgin, IL, is selling my bracelets. This purple, red and black themed set was completed last week.

What makes my stretch jewelry unique is that I double knot and glue when I am done, and put a large spacer bead over the knot for a finished look.

It is fun and a good way to pass time as I’m mostly at home by myself.

Below is a link to my first memoir, The Onion in the Petunia Patch. It is about one autistic girl’s life from Childhood to adulthood. First as undiagnosed, later misdiagnosed and finally diagnosed. It is about 30 pages long. I hope you will like reading it.

Allison Kindergarten

I was 5 when this was taken. I was so afraid of the camera back then. The flash is what did it. It was torture. An aid was sitting below, holding my hand. When it was over, I collapsed in tears and the aid comforted me. Unusual for my school days. I am not a writer of length, but felt God was calling me to write a book.

The Onion in the Petunia Patch_observations of life with an autism spectrum disorder-better cover

If you are an adult on the autism spectrum who has a kind and forgiving spirit, can agree to disagree in a constructive mannerand want to friend me on Facebook, send me a friend request. Know that I generally don’t participate in groups, however.

Allison Pioneer Center

Dear Governor Rauner and Illinois General Assembly,

In 2014, my mother died. The loss of a mother is hard enough for anyone, but for an autistic adult who is dependent on others to survive, I can assure you that the loss is more difficult for the person to bear.

In fact, it is due to my faith in the Lord Jesus and loving family that I am still here today.

It has been a scary time for my only sibling, who had to take over a lot of my mother’s roles.

One of the things that made life easier was the Pioneer Center in Mc Henry, IL, which is closing its behavioral health services completely on May 12. This is entirely due to the budget cuts  those in the General Assembly voted for and Gov. Rauner who approved.

What makes this cut so hard for me is that, due to my autism, I may not have a QUIET place I can rely on to go for therapy and medication management. I cannot go just anywhere. I’ve been going to behavioral health facilities for services since I was a teenager. I either couldn’t stay or had to have special accommodations made due to kids screaming in the hallway or in an adjoining therapy room.  It is also hard to focus when teens and adults are crying or yelling in those same areas. I have sensory processing disorder and cannot think or function when overwhelmed. This has lead to meltdowns so bad that at another facility, they went into lock-down mode. Fortunately, this place never gave up on me until the county changed their laws to county only patients.

Since I am frequently on the downside of rules and regulations, I can tell you it was a blessing to find the Pioneer Center. I had been praying about it and came across their website and had peace about contacting them.

With my sibling’s help, we made the arrangements to come to Pioneer Center. The layout is (soon to be was) a blessing. Adult psychiatric services was on its own floor. The elevators were outside the lobby in an anti room. Meeting with my therapist was a positive experience. I needed case management. My therapist succeeded in finding what I couldn’t on my own.

I even had a little socialization. A client was warm and welcoming and we would meet and hang out in the lobby or the picnic area outside near the man-made lake and watch the geese.

The sheltered workshop and in-home help for severely disabled children has been forced to close. Residential homes have had to merge.

In November, 2015, I wrote a letter to you, Gov. Rauner, explaining some things I have mentioned here. I received a form letter about a month later that stated this premise “we all have to make sacrifices”.

Why is it vulnerable citizens who didn’t do anything to the state’s pension funds (along with veterans and college students) are the only ones who are feeling the sacrifices while the well-healed get to dictate them?

I know there are those in the Church who feel Social Security is wrong, that it is the Church’s job to provide charity. Perhaps as a Christian yourself, you hold that same view. However, until someone comes up with a better plan, I don’t see how ditching the program or any other social service program (Medicaid, Medicare, SNAP) with no fall-back plan will help.

I can hope that one bad move can be followed by a good one. Agencies like Pioneer Center and AID could use a hefty donation in kind from a well-heeled philanthropist. That would be a good first step.

I can’t leave Illinois. My family and one friend are here. My sibling’s job is here. There is no option to transfer.

I ask you, Governor Rauner, and the Illinois General Assembly to come up with an amendment to the cuts that took services from Illinois’ most vulnerable away.

Regards,

Allison “autisticaplanet” Kramer

“Without guidance from God
    law and order disappear,
    but God blesses everyone
    who obeys his Law.” ~Proverbs 29:18 Holy Bible, CEV

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