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

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Too many places I visit online are bringing up a troublesome sentiment: That having Asperger’s is only a way of thinking differently. I don’t like it when Autism Speaks claims to speak for me, and I don’t appreciate the Neurodiverse movement doing so, either.

If you experience very mild communication and sensory issues, that’s great, but do remember that that is your experience, not the entire experience of those with Asperger’s.

I would hate to see supportive services lost due to a public awareness campaign that says having Asperger’s isn’t a disability.

Having AS alone didn’t get me services. I had to put first my generalized anxiety, OCD and a few others like PMDD first before getting any services. I had to describe how the general public as well as myself aren’t safe unless I have services.

My social service agency uses a special code denying service to someone who has Asperger’s as a solitary diagnosis. My guess is that it is a cost-saving procedure to direct funding toward those conditions considered disabling.

It is not a SHAME to acknowledge I have a disability. It is liberating. It is an honest assessment. It is not all of me, but does take a lot out of my life. Fortunately, there is support for that, but How can I have support if I don’t acknowledge that I have a disability in the first place? How can I expect help with sensory overload and transportation if I refuse to admit I have painfully sharp hearing and cannot drive due to the distraction of other drivers?

If you don’t need supports, fine, that’s a blessing for you. You are one part of the spectrum but do not need to speak for the whole by saying across the board that it is only a way of thinking differently.

Not everyone who thinks differently has Asperger’s. I’m sure those who are non-Asperger’s who are noted creative thinkers wouldn’t want to be linked to having Asperger’s if they didn’t have it.

Using that logic, every painter, musician, scientist and employee of Silicon Valley would have Asperger’s, and that simply isn’t realistic.

Those who lessen the humanity of the disabled have a sickness; a disability. Instead of being angry with them and seeking to move away from the disability “label”, maybe we should try to be patient and show them that those with disabilities can and do lead meaningful lives, and that isn’t limited solely to bringing home a paycheck.

I hope this message resonates with those who are tired of being marginalized once again by a growing majority.

 

Autisticaplanet-Definition

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I am thinking of changing the direction in which my blog is going. Instead of trying to be an activist in spreading awareness and hopefully improving lives for some with ASD, I am thinking after low to no ratings or shares along with inappropriate or no comments, that my observations would best be directed with a focus on those wanting to do medical research or those not acquainted with or affected by autism spectrum disorders.

I think that my normal range I.Q. added with crippling auditory sensitivity and accompanying anxiety that permeates my life sets me apart. When all of these pieces are joined together, a very rare form of autism presents. Dr. Tony Attwood said as much in an e-mail to me.

I don’t have a triumph over tragedy type of message. I don’t do ordinary things non-autistics do as a result of conquering my disabilities. They are what they are, and after many years of various therapies, I have come to embrace where I am in life.

I do not have a Temple Grandin or John Elder Robison story to tell, and that’s OK. God made me unique. He has a plan for my life and it is time I found out more about it.

I have some family to provide for my needs. It is a limited life at times, but with all things considered (I am not homeless, abused, fleeing from a radical country who seeks to kill me for my faith), I am quite blessed.

Thank you for reading.

~autisticaplanet

 

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Regarding the pronoun trouble with the last sentence: I use spell check as much as possible, but PixTeller didn’t catch my mistake. Perhaps another time I will do the poster completely over, but not now.

In addition to being a spectrum apart, I hate reading and only do so when absolutely necessary for my overall functioning. I sometimes reverse letters and skip over words and repeat the same lines. I also develop migraines if reading for too long.

I hope you get the main gist. A proverbial outsider despite my best efforts.

~autisticaplanet

 

 

 

 

 

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I have come to find out the long, hard way about something I call degrees of relationship. Nobody told me about this. It is something that I learned through years of failed friendships. In order to spare more people on the spectrum out there extreme stress, lack of self-esteem and unneeded depression, I will explain what I mean by degrees.

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I have classified people I know into three categories:

  1. Acquaintances (those I’ve only known for more than a few months)
  2. Casual friends (those who I’ve known for a few months and am trusting with minor things like sharing my e-mail address or adding them to my Facebook page)
  3. True friends (those who I’ve known over a longer period of time, two years or more, who I have been able to trust more and more and who I can confide in when I’m hurting without them turning their backs. I use this same hierarchy with family members.

Up until my thirties, I used to think that anyone who expressed an interest in me was automatically my best friend. I just wanted to love them to death and my thoughts were all about doing things to please them. This resulted in scaring those people away every time, and leaving me to wonder why. Of course, them observing my auditory sensitivity (hands over ears) contributed to the brevity as well.

Over time, I eventually grew accustomed to losing friends. Friendship was fleeting and it was a feat that I managed to have a couple of friends for a few years between junior high and high school.

In reality, I would have probably been better off not having friends when I was younger; not being exposed to some of the abusive home situations I found when I stayed overnight. Any friend I had lived on the run down and abusive areas of town.

Waiting is very important (and very hard for me to practice) when meeting someone. It gives me time to observe the person and listen to them.

When I was seventeen and in a partial hospitalization program, a girl a few years younger befriended me. She asked me over to her house. I thought about the obvious, any small kids or dogs living there? There weren’t, so I was prepared to go. Then she mentioned about practicing “black magic”. Though I wasn’t a Christian yet, I felt very uncomfortable about coming over and did decline.

I knew a girl for a few years who I was friends with, because one of my friends was friends with her. She didn’t bathe much and wound up stealing from me. It took me a couple of years, but I told her over the phone that I couldn’t be friends with her anymore and quietly hung up. I didn’t have the heart to tell her because she smelled bad and was a thief.

I had to learn and still have to be careful not to be a people pleaser. I only experience this problem with people who have expressed an interest in me, not those I hope will like me.

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Now, when someone expresses interest in me, the first thing I do is wait. I pray for God’s guidance and then the relationship becomes like a Polaroid. I wait to see what starts to develop. This isn’t passive. I have to be willing to put something out there based on the degree of the relationship.

Someone introduced themselves to me where I now go for therapy last spring. I was weary at first. My 30 something method is a 180 from my childhood: bail and run. Better to be lonely than hurt. But I didn’t bail. I waited. We exchanged e-mails and talked when we ran into one another at therapy. I established something very important (this person is male) from the get-go: boundaries. I was honest about being platonic and he was fine with it. I have been approached by men who didn’t want anything to do with me when I told them I wasn’t looking for romance. Waiting taught me this person was basically trustworthy, but not someone I wanted to have a non-romantic intimate relationship with, thus I classify him as an acquaintance.

This is an aside. For those who read regularly, you may know I have strong feelings for CNN anchor Anderson Cooper. While that is true, I wouldn’t want to actually be with him and have to experience the stress of romance. I certainly hope to meet him and that we can be acquaintances and hopefully friends someday.

Waiting for someone with impulse control issues is hard, but I have become better as I’ve become deeper in practicing my faith. It helps me to know I don’t have to be in control as I know God is in control. Part of my impulsiveness results in feeling a lack of control over something. The rest is unpremeditated.

After a lifetime of failed relationships, a woman who is 45 years older than myself, expressed interest in me. We met when I came to a social service agency to see about joining a class for those seeking to work.

It was something for someone to wait on me, for several years and thorough many challenges. She didn’t over-invest herself right off the bat. We began as acquaintances and worked our way up over about 10 years. I can say that unequivocally she is the only true friend I have ever had.

As I became more stable, I was able to be a real friend to her. We are quite close now and can agree to disagree. We don’t tell each other’s secrets.

I had a boss a few years back who was a very casual acquaintance when I was a  little girl. She only played with me in the summertime. When she hired me to care for her cats for the summer, I made the mistake of not waiting, to want to further develop the relationship we had as little girls; as if 2 decades hadn’t happened in-between. In other words, I was looking at and thinking of  her as if she were still ten.

I rushed things and wound up hurt. I ultimately got lied to and quit. Rushing things when upset with a friend can also lead to harsh words, meltdowns and, of course, termination of relationship.

I had an acquaintance, a lady from my library who brought me material when they had a home-delivery program. I would invite her in and we would talk and also e-mail. I blew that relationship apart by having a meltdown on the phone and online, saying evil things I wouldn’t have said had I not been in full-blown meltdown mode. Being patient through misunderstandings and not lashing out has proven to be a challenge for me, but one I am slowly overcoming-with God’s help.

Experience has been my teacher with little guidance. Relationships are very hard to make and maintain for people on the spectrum, and I’m one example.

Developing discretion by patiently waiting works. You get to learn about who you can trust and just how much. You learn who will “have your back” when you are hurting and who will turn away.

What I’ve relayed in my post isn’t a miracle salve that will solve all  relationship problems. Anyone can miscalculate and slip. That will happen, but know that God always has your back and will guide you back to level ground.

Good things are worth waiting for. Sometimes it takes being lonely and trusting God through waiting on Him.

It is okay to make mistakes. I’ve had to downgrade people’s friend status (I’m not talking about Facebook) for a time when trust has been violated. Sometimes this move is permanent and others it’s not.

“but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” ~Isaiah 40:31

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” ~Martin Luther King

If this post makes sense to you, feel free to share it and give it a rating.

Blessings,

autisticaplanet

Images: Eyes on Jesus: Kitten-PixTeller. Words-mine. Woman with developing Polaroid-Royalty free stock on Pixabay.

 

 

 

 

 

Autism isn’t one sided

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Autism isn’t one sided. It’s not all bad, nor is it all good. There are challenges. There are strengths. Some on the spectrum are fine with disclosure in part or in whole. Others are not. Some struggle with sensory issues. Others do not. Some struggle intensely overall while others struggle mildly to moderately in one or two areas. Still others (like yours truly) struggle intensely in one area and only mildly to moderately in others. This is why autism is depicted as being on a spectrum. A spectrum is not black and white. It encompasses primary and secondary colors which make up all the colors there are.

Let’s keep an open mind, agree to disagree at times and be supportive of one another. Enough with what we think we know and berating those who don’t share our sentiments. Let us share our experiences without fear of judgement. Let us not fall apart if someone corrects an error in thought, especially when done with love.

~autisticaplanet

 

 

 

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I notice there is a bit of debate regarding people on the autism spectrum over using the words disorder or disability. While I understand personally the negative labels non-autistic society can place on those with the d-words (burden, lazy, manipulative ,selfish, etc…), I believe that the blame and resulting negativity rests on the labeler.

I have OCD and PMDD (Premenstrual Dysphoric Disorder-very very bad PMS), and generalized anxiety disorder. These are managed with medication and therapy.

I also suffer from chronic migraines (fewer than 14 a month..about 5-10 depending). This disorder is fairly managed by medication.

My point is, that there are positives that come from having disorders. I am more patient as a result of the trials I have gone through at the hands of impatient people. My faith has played the biggest role, acting as the filter through which my experiences go through.

I am intensely sensitive to vocal inflection in people’s voices even if I don’t pick up on subtle body language. This makes me more compassionate. Even when a person tells me they are okay and may ask why I detected something that turned out not to be there, I remind them that I do care about people and they are accepting.

This trait may well occur in the heart of any photographer, but when my mind’s eye sees a photograph, I literally go on point like a hunting dog. I stiffen my shoulders and straighten my back by instinct. I can picture the photo before framing it in the viewfinder.

I can often think out exactly what I want to write in a post or other form of writing along with selecting images in my brain before searching for them online if composing a blog or social media post. I only have to do minimal rewriting and spell checking.

I believe these are positive aspects of my disorder. I am sorry and apologize to the autism community for too often dwelling on the negatives. I want balance, but I do not want mainstream society to lose sight of the struggles, especially when it comes to services and funding them. That’s why I’ve spent more time on the problematic side.

We live in a fallen world. We all struggle to some degree with something as a result of being citizens of this world. God does work out for good what was meant for harm. He has done so in my life.  Some of that good I have discussed in this post.

I struggle. Sometimes I even revisit a struggle until I have practiced moving past the stumbling block in my brain. Faith and therapy have aided my progress. Being able to forgive and maintain forgiveness is one thing I have learned how to achieve through practice.

I slip, stumble and sometimes backslide, but I continue. God commands me to do so. I am incomplete-my full nature and character will not be complete until the day the Lord takes me to heaven-and that’s okay.

Please use the rating stars to let me know what you thought of this post. Do you relate to it? That is what I am most looking for the deciding factor in your rating.

God bless you.

~autisticaplanet

template by PixTeller.

 

 

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