Tag Archives: ASD

FB Group: Autistic Adults

Being autistic is a challenge that can be very trying even on your best day. From my experience, people don’t generally think like I do or even process information the same way I do. Bluntly put, I am the odd man out when compared with society. Due to my trouble with noise, I cannot live in a city or town; in fact, I live nearly twenty miles from the closest thing that you could consider to be a town. Even living where I do, next to someone that will not control their barking dog is emotionally draining on me.

Lately, I’ve been very depressed because of various issues going on in my life and I thought that maybe I could join a support group for people that were autistic and hopefully find some people that were a little more like me. So I searched for a few groups on Facebook and joined a couple that I thought I would mesh in. One of these groups was for LGBT autistics, and while the people there didn’t talk much I found that almost everything was geared towards people with Asperger’s, which is on the ASD scale, but it just isn’t how I am identified. Due to this, I quietly left the group after a little lurking because it didn’t feel like it was for me. If the group is still around when my son is older then I’d probably introduce him to it, but it just wasn’t my cup of tea.

Another group that I joined was called Autistic Adults, which you can find here if you’re interested.

I joined this group because I thought it was great to finally find a group of adults, that are supportive or so I thought. I asked on the group if anyone else had trouble getting a diagnosis as an adult. I had a few comments on the troubles that other people in the group had getting a diagnosis as an adult and had pretty much resigned myself to a long drawn out battle with doctors that don’t want to give me an answer or diagnosis. I’ve already been screened and the result was positive.

The one of the admins ( I had no clue he was an admin at the time.) chimed into my conversation and made suggestions that I’ve already tried. I told him this, and it seemed like he suddenly had a bone to pick with me. First, he had tried to suggest something that I had already done, which was get a screening. I had stated in the first post, that I just needed the official diagnosis and the screening was already done.

You can see that here in the screenshot.

 

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After this post, this guy kept pushing for me to call doctors (this is after the group had had a discussion about telephone conversations and I had admitted that talking on the phone gives me panic attacks, even thinking about talking on the phone can be triggering.) I told him that there were literally no doctors in my area that would diagnose an adult with autism that was respectful and that I couldn’t travel any distance because my SUV (Good Old Bessie) was currently broken down, but this wasn’t good enough of an answer it seemed.

After this, the guy told me that I should have my friends take me to the doctors.

I laughed. I’ll admit it. I fucking laughed at the computer screen when I read that, I laughed because crying would hurt too much. I told him I don’t have friends, and that I lived twenty miles from the nearest town.

I don’t have friends…something that has been so ungodly painful since June, just thrown into my face. So of course, I’m going to be annoyed with this guy now. He had to be right and I had to be lying, at least, that’s how it seemed to me, how could anyone not have friends?

If that wasn’t bad enough then this guy starts trying to tear apart everything I’ve said to other people. I present to you:

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Not that it is any of this guys business, but yes, because of transportation I haven’t been able to see my therapist since October, something that has not been very good for me.

It was after that post that this guy starts privately messaging me and demands to know if I use drugs and then accused me of using a fake name!

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So yeah, after you accuse me of using a fake profile name, I’m going to be pissed. Using profile names that don’t match the name on their driver’s license has caused A LOT of transgender people to have their accounts shut down. My legal name is Aydan Keeley O’Connor and I’m damned proud of it, I fucking paid enough for it.

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It was clear this guy didn’t care what was “going on with me”, because if he had his opening message wouldn’t have been questioning me about drug use.

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Now, I shouldn’t have to explain this to an admin of a Facebook group, but because he isn’t my “friend” my screen name of AydanKOConnor (which is the link for my FB page) is going to come up, not my name. Then he began to question what I write? This guy didn’t introduce himself to me when I first joined that page several days prior, and now because I didn’t idolize him as some god he was harassing me and demanding to know about me? I don’t think so. I stopped talking to him, but I did message one of the other admin and creator of the group when I first started having trouble with him. She did nothing.

My wife even wrote her and other admins and this was the response she got.

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From what my wife understands this guy was telling other admins that I was using a fake name.

Why? Because he didn’t know how facebook works. If you’re not my friend, you’re not going to see much on my page. However, because this David fellow thought I was using a fake name because my account name was showing up I was removed from the only group that I had found to be catered to adults with autism.

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See the difference? AydanOConnor was already taken when I tried to set my facebook username so I used AydanKOConnor instead. K as in Keeley which is my legal middle name.

I feel like the real problem is this though:

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Right at the top of my groups (which are viewable for all) is the fact that I belong to an LGBT group for ASD. The reason I say this is because when my wife wanted to know why I was so upset ( this put me in meltdown mode) and I shoved my phone at her, and after she read the messages she sent this guy a message of her own, wanting to know why he was doing what he was doing.

He started by belittling her and accusing her of using a fake name as well, and when my wife sent him a picture of proof of who she was, he wanted to know if she (my wife) was really me. So my wife sent him a photo of my ID, and then he started asking for personal information.

So because of this gem, I almost had a complete meltdown on top of teetering back and forth on being suicidal. This is not the way you’re supposed to treat each other in a support group.

I wanted to share this with anyone that reads my blog because I don’t want it to happen to anyone else. We don’t need anyone TG suicides or suicides period for that matter, and if I didn’t have such a wonderful wife, this would have seriously pushed me to end it all.

 

Reflection

I will be glad when 2015 is over, this has been the worse year of my life by far. The entire year I’ve spent dealing with one clusterfuck after another, and the day before Christmas was just hell. I am depressed and have to keep reminding myself what I have to live for. I found out just how alone I was really was this year and that I really don’t have any friends, just people that wanted to use me for whatever they could get from me.

The first half of the year was rough, but I had hoped that it would get better. It really hasn’t gotten any better.

I tried my best to get a support group for the transgender community going that would encompass anyone that considered themselves to be transgender. The few people that were interested were interested in the clinics that I wanted to set up after incorporating into a non-profit, but no one wanted to help or do any work towards those goals.  

The few so-called friends that I had at the beginning of the year showed their true colors this year. It was okay for me to always drive into Richmond or further to see them or hang out with them, but they could never be bothered to come to my place. When I mentioned this to them it was always “well you’re so far away”. I’m so far, yet I can drive to them but not the other way around?

What hurt the most though is when I was told by my so-called best friend that he didn’t have the time to be my friend. Yet he had the time to abandon his daughter at her last music recital of the year to drive to Washington DC for a dinner.

So I’m left with only the people I occasionally talk to on Facebook as my friends. I can’t begin to tell you how lonely that is. I haven’t gone out since June, even before then really if you want to count going out as doing something “adultish”. Twice this year I thought we were going to lose our house. A little voice in the back of my head kept whispering ‘back to the streets for you, you incompetent dumbass’.

I’ve been given a “pre-diagnosis” of ASD, but I still, after nearly nine months, can’t find a doctor that is willing to give me a formal diagnosis because I’m an adult, and I should have had that diagnosis before now. Should have. Story of my life, there is a lot of things I should have had access to as a child but I didn’t so now I have to face life as an adult that can’t take care of himself.

I’ve been trying to get disability since June, I was told by the lawyer my insurance company contracted it would take no more that six months. Well here we are in December and the worker for my case isn’t going to decide whether or not to send me to “one of their doctors” until January. So much for six months.

I can’t work. Being around people gives me two things; panic attacks and thoughts of suicide. I feel like a total failure. The one thing I’m supposed to be able to do I can’t.

Of course in May my SUV was vandalized because I spoke on local television about being transgender. Nothing happened to the person that vandalized my truck, in fact they are most likely still walking around Amelia County free as anyone else and rather proud of the hatred they perpetrated on me and my family just because I’m different than them.

Then I was profiled by police not once but twice because of the equality stickers on the back of my SUV. This was when I was using my SUV as a ‘Farm Use’ vehicle and had the corresponding tags on it. Both times the officers didn’t know the laws and threaten me and my wife. This has contributed to worsening panic attacks every time I see a police car now. Even if I’m doing nothing wrong I start panicking when I see flashing lights or a squad car. The current climate with police getting away with murder, literally, doesn’t help at all either.

I thought that things were going to get better when I got back in touch with my parents after two years of not talking. They didn’t like the fact that I being transitioning and kicked me, my wife and our two children out of the house that my wife and I put the down payment on. We had lived there less than two months.

I thought that my relationship with my parents could truly be mended and we could all be a family again. I guess that was just wishful thinking on my part. My parents allowed my brother to treat me, my wife and my two children like trash. He yelled at us, called me a fat lesbian, a stupid bitch, a faggot, queer, and nearly every other slang for LGBT that he could think of, and my parent’s response was for me to just ignore it. They even gave him and his wife a house! Can you believe that?! A fucking house, when they took mine from me.

I tried to look past all of that though. I really did. Then my mother deleted me from her Facebook friends, because my liberal posts make her pissed off and she was tired of being pissed off. It hurt, and it spoke volumes as to where I stand in their lives. To me it said I had no place in their life. They support my brother who refuses to work. He is in no way disabled, he just refused to work. He had his gamer friends raise almost $10,000 to send him to Vietnam to meet the woman that became his wife. He didn’t work for it, and yet I’m the bad person in my parent’s eyes.

To make my year even worse, I wasn’t able to give my kids what I wanted to get them for Christmas, well…Yule. I was barely able to scrounge up $60 bucks for both of their presents. Thirty dollars each…And it makes me loathe myself just that much more. I know what it is like going back to school and seeing all the great things all the other kids got for Christmas, while you got nothing.

See, my parents decided that they didn’t want to do Christmas any more. My mother claimed it was because she didn’t want to see us disappointed when we didn’t get what we wanted, but the last Christmas I remember with them I was so happy because I got a guitar. The only thing that I had been wanting all year because at that time I idolized Garth Brooks and wanted to play guitar like he did. I was devastated after Christmas though, because my guitar had a fault in it and the neck snapped off, it was supposed to be replaced but never was…

So I know that feeling, I know what it’s like to be made fun of because your family doesn’t celebrate the coolest kid holiday of the year.

Even as I sit here writing this, I’m fighting back tears because I don’t want that embarasment, that torment for my children.

Then on Christmas eve, I find out that my truck is broken down to the point where it can’t be driven. I need about $1200 worth of parts to get it road worthy so it can pass inspection next month and I don’t have it. So now we’re stranded almost twenty miles from the nearest town with no way to get food or supplies.

I want to give up so badly.

I want this pain, this lonliness, this life to end.

I can’t even get started into the bullshit I’m going through with my mother-in-law. I am grateful that we are able to stay with her, but after two years I feel more like a slave and inconvience than a son-in-law.

It all adds to the pain, and I don’t know how much longer I can handle it.

If next year doesn’t get better…it may be my last.

 

Bitter Cold-Truth

We haven’t had electricity since Thursday when our electric company disreguarded a verbal agreement we had, refused to give us twenty-four hours and shut our power off. They claimed they would turn us back on but first we had to pay them nearly $400.00 and fork out a $1200 deposit. We have never not paid our electric bill, since we moved into the house in March of last year, we have always paid even when the electric company screwed up the billing address and didn’t send us our bill on time, or when they jumped our electric bill from barely $150 a month to well over $600. We weren’t the only people that they have done this to, we’re just the unlucky ones struggling as it is to pay the $150 bill when they dropped new increases on us after the deregulation of electric companies in Virginia.

The weather the past two days has reached below freezing both days and the only thing keeping us warm is the large firepit we dug out front during the spring and the heater in my truck. Though if I’m going to be completely honest, only half of the heater in my truck works. The blower motor for the front of the vehicle doesn’t work so it doesn’t actually blow heat in the front of the truck. We charge our phones and my Chromebook in the truck as well. However when night falls and we have to return inside the darkened house our spirits sink.

This is not how I wanted to spend Thanksgiving with my wife and two children until about three hours ago we didn’t even have a turkey.

I know when this Thursday rolls around I’ll see posts of how everyone on my friend’s list spending time with their family and gourging themselves on food while getting ready to go shopping for Black Friday and my family and I will be gathering wood for a fire, drawing water up from our well and cooking our meal over hot coals from our firepit.

This is the bitter cold truth that I wake up to each and every morning now.

Admist all of this I am still struggling to find doctors that diagnosis ASD in adults, trying to enroll our youngest in public schools, fight for SSI, and deal with depression so bad that I struggle to keep going. The only thing I can tell myself is if I give up, my children and wife will be worse off than they already are.

My wife is disabled and cannot use the chainsaw to drop trees for firewood, or chop wood with an ax. She doesn’t even have a driver’s license, and our oldest son is still too young for his. I am the only one in the family with a license and therefore, the only one able to drive back and forth to the store.

How would they be able to make it if I gave up? If I was selfish and ended my own suffering and left them alone…I can’t do that to them, my pain is nothing compared to what they would be left with.

So I keep going.

It’s really the only thing I can do. I focus on one task at a time; one item on our to do list and keep working towards something better. Though I don’t feel like anything is going to get better anytime soon.

I’m cold and tired all the time now, it’s like the dampness has settled into my bones and will refuse to leave until the spring of next year and warmer weather.
I just have to keep going.