An Experience With Another Autistic Person?

Even in one's community one needs to be wary of toxic people.. I think my narc radar has improved since going no contact. Whatever a person's diagnosis, I know I do not want to be treated badly anymore. I was at a disability group meeting for a book club, and a new woman showed up. She was friendly and asked me if I wanted to come to her drop in center and she told me she wanted to start a group for Aspies and those on the autism spectrum. In this disability group they do not know about me being an ACON and only know about my Lipedema, and disabilities that show like being hearing impaired.

I wrongly believed that drop in centers were for the poor, lonely or even physically disabled and those living on the edges of society but more on that later and remembering feeling glad this person was opening her drop-in center to autistics. I said, "Yes I would be very interested." She told the group she was an Aspie too, about being bipolar, and talked more about her "autism-Aspie" story. She was the director of the drop-in center via a peer counseling program. While I wanted to make sure this place was okay, I have always wanted to take part in a Aspie meet-up and have wanted the chance to meet more people and have some successful connections in this community. With the group, I was very eager. I knew two male Aspies as acquaintances in the community I could invite.

I did warn her I am housebound a lot but would love to be part of the group and maybe we could get it started and it could keep going on it's own and then I would come as often as I could like another community group I am in. Maybe we could put out fliers and advertise. Being Aspie, I have been involved in online Aspie groups and met now real-life although long distant friends in them, so having the chance to meet other people who face this challenge, was exciting to me. She acted friendly and talked to me just fine at this time. Sure she was a bit withdrawn and awkward but that was nothing I was not used to. I had my husband drive me to this place and he came with me. So it was just her and us, the first time. The second time, I invited this local male Aspie who I had met in the disability book group a year or so ago and was trying to get a message to the other Aspie I knew as well.  When the group was supposed to be held a second time, the other Aspie showed up but she did not show up. So he was kind of upset he drove there for nothing, and no group happened. The books for the group and place for it were locked up. She never apologized and started acting weirder. I just shrugged my shoulders and thought, "Well I will try one more time.".

Things got even more strange then, I noticed she started ignoring me and being overtly rude to me. Now I have been around other Aspies, including a close friend of me and my husband and even WORKED with autistic children in classrooms. Her autism seemed weird to me like she could turn it off and on like a spigot. I felt suspicious something didn't add up. Friendly for a time with smiles and then cold as a fish. Maybe she was higher on the spectrum but that didn't make sense, she spoke of going to meetings in our state capital and was highly organized. She seemed able to socially function among movers and shakers, I would be scared to even talk to. I know Aspies get diverted and distracted, I do all the time. Sometimes my voice will go monotone or my mind will wonder off, but I even learned the basics years ago, say hello to people etc.

I got some bad vibes that worried me as I met up with her. Something seemed odd about her like she was far more career grasping then I have ever seen an Aspie be and higher functioning in some ways while trying to appear to be lower functioning. The second time I met her, I thought in my head, "She doesn't seem to be vulnerable like autistics and Aspies are". She also seemed to be very wealthy from things she talked about including vacations, trips, two highly successful adult children, and other matters. It was weird because the drop in center is in a very poor side of town.

She was the boss at the drop in center and I noticed other people seemed to make paths for her and you knew she was in charge no matter what. This kind of surprised me. Most Aspies or autistics do not exhibit such strong signs of "leadership" and keeping people "in check". People almost seemed afraid of her. A friendlier assistant director was there, we talked to as well. The place only had a few clients coming in, 2 or 3 at most. I talked to them but they were more quiet. We colored in adult coloring books a few time. I was still checking the place out and was glad to have a place for the autism group. One thing with the director, she told me she had this Comfort Dog, and the dog started making appearances with her later. She was so high functioning seeming, I thought she was training the dog for some program until I realized the dog was HERS.

Anyhow the third time, I and my husband show up for the time of the group meeting and we enter the front room of the Drop-in Center. I feel weirder about being there because I am finally starting to suspect the place is mostly for those who are heavily medicated and don't just suffer from garden variety depression and anxiety but full blown psychotic mental disorders with full hallucinations and time spent in the psych ward. I have been diagnosed with PTSD in my past and struggle with depression but never have been hospitalized for any mental disorder. I don't judge people who have, but I noticed a lot of the programming at this place was focused on people successfully "recovering" after psych ward internments. The focus was to get them employed again and self supporting. I felt odd there as a very physically disabled person knowing I am unable to work in my physical condition.

Anyhow we come a third time for the group, she the director of the Drop-In Center is sitting there, only 4-5 feet away and I say hello, and she flat out ignores me and my husband. I am VERY UNCOMFORTABLE. I joke and try to add levity to the situation to get her to speak to us and allow for distraction and other matters but time passes with her giving us extreme silent treatment. The group where we are reading a book on Aspergers together is due to begin. My husband is not the confrontational type so busies himself talking to someone else in the room. I had the thought, "I do not want to beg this person to talk to me". I am trying to let go of people pleasing and other behaviors that have only dug my scapegoat hole deep. So I sit there and stare straight ahead too after trying to get her to talk to me two times. I talk to the person my husband is talking to and then I have us get up and leave after waiting 25 minutes. There goes the Aspie group. I already know I am not coming back.

The whole situation was so strange. I later wrote her a letter asking her why she did not speak to us and saying that I had a hard time understanding her version of autism and maybe she needs to explain this better to people so there is more understanding. She never responded back.

I am familiar with autistics who go mute, but this seemed like the hard cold freeze-out of a narcissist. I've been down that road too many times not to know what it feels like. She wanted me gone, maybe because she knew I was only going to bring a few more clients in? She asked me to do art projects almost right off for the place but I wanted to familiarize myself with how the place worked being unsure of how drop in centers worked and the culture. My husband told me be careful of people who want something from you. My energy is very low and I am realizing my failure to "deliver" is impacting me socially.

This sounds bad but I decided to look her up on Facebook, and her wall was public. If any flying monkeys inform her of this article that may cease pretty quickly but I noticed the day I wrote her the letter she complained about people not understanding her. I think she meant me since it was the day I wrote her the letter. She was very angry, and this posting had a "how dare they" attitude to it, instead of a "I feel sad someone misunderstood me". She said she had "Kanner's autism". This blew my mind because Kanner's autism is where they do NOT desire closeness with other people. Aspies and autistics normally want connection but fail in getting it. Why is someone like that in such a people based position where there are people coming in especially with severe mental disorders?

I had a lot of time in special ed classrooms in my 20s, most people with Kanner's are totally non-verbal and usually lower functioning, they are not organized people directing drop in centers. I wonder who chose this woman to work with the severely mentally ill if her social skills were so extremely low? I did not feel like I was around an autistic who was going mute or too afraid to talk. I dealt with kids who were severely autistic in classrooms. My nephew when I was in contact with him had HFA [high functioning autism] between out and out autism and Aspergers and he was quiet all the time. You could ask him questions and he would ignore you, but it was not an offensive kind of ignore. It's kind of hard to explain, it was DIFFERENT then this.

Something didn't add up. She had pictures of herself meeting with politicians including talk of meeting with a lt. governor on her PUBLIC Facebook wall and one regional politician who is well known. Some of these photos appeared on a public Facebook page of a non-profit she ran related to the later Drop in Center. These are meeting I would be too afraid of and Aspie to deal with myself. She was at the center of all her family photos, she had a high number of friends. Most of my Aspie friends are under the 100 mark, if not lower.

Her Facebook wall seemed to have people constantly praising her and defending her. It seemed to read like my mother's facebook.  I have never seen this happen with another fellow Aspie. She even told this one guy off who was an Aspie too, they were actually talking about autism and he unfriended her.  On the public Facebook wall and on the public Facebook organizational wall where she ran a nonprofit, she bragged about buying a $2,000 dollar vaccum cleaner for her home and paying $5,000 and some odd change for the trained Comfort Dog. The dog is supposed to help her with the severe autism. I was right about her being wealthy, as there were pictures of her very lavish house with things like wooden floors, rich fabrics and decked out kitchen with stainless steel and espresso machine.

I have never met any autistic person like this. I was very weirded out by this whole experience. She seemed put off during one of those first meetings at my knowledge about autism. The drop in center really was not for me. It did bring me down some to attempt to integrate with the community again and have it end in failure. My sense of not belonging here has gotten greater and greater.  I have been more lonely then before. I feel like I don't belong anywhere.

Sometimes it is very hard. Humans are social creatures, they want people to talk to in real life once in a while. I do think this person treated me very wrongly. I do not trust them. I am glad I got away from them. It could have been worse, I had my husband with me knowing I needed to check this place out--I have been more cautious since the catfish incident and I listened to the "bad vibes" I got. My fault was in giving her a second chance but at least my time spent around her was very short. I supposed since autism and Aspergers is a neurological condition, it is possible other personality disorders could enter in, but I'll leave the actual diagnosis to the professionals. The whole thing confused and bothered me greatly.  Please tell me what you think of this experience. Thanks.

Mind Control for Autistics

This may shock a few of you but Aspie me actually worked in autism special ed rooms as a substitute teacher. The children would be drawn to me but I became horrified by the "programs" these rooms had in place and actually started avoided substitute teaching in those settings and just taking mainstream assignments.

I once got in trouble because an aide put one of the autistic students in a bodily restraint, and I told them they were going overboard, the child was not doing anything "dangerous" or hurting anyone else. She got me written up for interfering and "ruining discipline". The whole mess was traumatizing. I saw three classroom settings where they literally LOCKED up the kids. No, I am not kidding. Remember in my case, I was locked in my room over and over as a child for hours. So to say this was triggering to me, is probably an understatement of the century.

One looked like a large giant cage for dogs with a desk in it. This was over 20 years ago, but I remember this one being "too small" for the child to stand in but hope that is my memory playing tricks on me because the other thought is kind of horrific. One was a school where they seemed to mix sociopaths and Aspies willy-nilly, I had one of my hardest days as a substitute teacher there ever. One fat and Aspie girl was preyed on by at least two classmates with severe personality disorders and history of violence. I was used to tough kids, but those two raised the hair on the back of my neck.

Their solution at that school for behaviors there, was to lock up the kids in a wooden closet with holes in it. I would have been screaming and misbehaving too. I never locked up any kids or ordered it while running the classrooms. Even though I had worked in a juvenile home setting where the kids were literally locked up, one day at this place was enough and I never returned.

We were forced to use some mind control program at the residential home I worked at. It was a behaviorism program. Our clients were not locked up in any "seclusion rooms" or areas there, but they were awarded points and privileges in a system that seemed designed to encourage teaching teens to manipulate. They couldn't even go to the bathroom without permission.  I was supposed to give positive points for them eating a meal and not throwing the food or tearing the dining room apart. It combined control freak mandates with lowered expectations.  It brought out the worse in the personality disordered. My entire day was spent threatening to take off points or add them on for the smallest behaviors. I hated this system and even our interactions with the clients were scripted, leading to a sense of unrealness and inability to form a "real" relationship with them.

 I felt the program got in the way of teaching the teens a true sense of morality or self development. I learned something about myself at this job, that I am not a good enforcer of rules I find "stupid", and I was often deemed a trouble maker. I refused to do any physical take-downs or physical restraints unless a teen was trying to hurt themselves or hurt others, and I was constant berated for this and told this is why I had "no control". Some of my co-workers were insane future wannabe TSA workers, and one strong-arm woman, would knock one of the girls to the ground and put her in a lock-hold simply for mouthing off, or refusing to wash the dishes fast enough.

I knew this mother of an autistic who was into the "token" programs and the rest for her severely autistic daughter. She was a high school classmate and we had Facebook contact. She would put pictures up of the constant behavior programs and rest and her daughter who was verbal and could read some, would have to earn every privilege in the world. Her daughter was having more and more physical outbursts and it seemed to me these programs were causing a lot of the problems.  Thinking about programs for autistic kids where they call for "Quiet hands and quiet feet", I would flunk and be punished. Stimming calls down autistics, so I always find that one weird. I can understand asking a child to sit at a desk to try and be quiet to that point but telling them they must be still like a statue seems insane. Even as an adult, I learned to sit far away from people so my moving around would not bother them.

I was a high functioning Aspie with a high IQ and could "cloak". "Cloaking" got harder for me as I got older.  I had to pretend to be an NT, to keep employed. This wasn't perfect but it meant following a lot of social scripts I had memorized. Teaching for subjects I was truly enthused and enjoyment of many of the students came naturally but I always had a degree of extreme social and other anxieties.  I got very worn out and it helped to ruin my health having to second guess so many social and other interactions. The hardest was with co-workers. Even at this age, I am learning social rules that never occurred to me, of course some of these overlap with learning self protective boundaries and other matters, coming up from being no contact and finally escaping my abusers.

I freely stim in front of my husband and best friends, but can keep it together to "act normal" while out in public. While at times I wonder how life could have gone with help for my Aspergers, maybe there were advantages to sliding through the cracks because of the higher IQ and good grades and quiet meek demeanor I had when young. I avoided the crazy behaviorism programs they seem to be instilling on autistics like crazy. I lived under a strict and crazy narc induced "program" at home but at least school was more normal.

 I've referred to the school to prison pipeline before but let's just say they aren't just applying the growing American focus on CONTROL of young to the juvenile delinquent set but the autistics, developmentally disabled and other "troubled" teens. The book "Jesus Land" talks about these teens sent for normal teen behaviors to schools that seek to control them, with mind control and extreme rules.

It seems everything in this culture has become about enforcing power and compliance. I suppose in police state America, the focus now is to keep the autistics in line at any cost too. Sure teaching a severely or even more mildly autistic child not to hurt others, and to keep from self harming behaviors and how to bathroom and eat and other life skills is not wrong, but these programs just are evil.

"I’m sorry, but that’s not earning your token…"

I have been working with the autistic demographic for the better part of the last decade. When I first started in this field, I was a “behavioral tutor” at a popular treatment center. Their programs were based in Applied Behavior Analysis, or ABA.

 ABA is regarded as THE autism intervention. It is often the only thing covered by insurance, state-man...dated therapy programs, and other service providers. But what does it consist of?
The drawing above is what my work looked like for several years. Children were supposed to sit for thirty minute sessions, up to six a day, and work on a specific program, such as color identification or event sequencing. Children were rewarded when they worked… with tokens, tickles, stickers, candy, etc. Kids on “higher levels” had to wait longer for this “positive reinforcement.” Children were given a “discrete trial” and were expected to not only perform the task in a timely manner, but “sit with hands and feet down and a quiet voice” for three seconds. Children who failed to perform to these precise standards did not earn reinforcement… no exceptions. When children consistently failed to perform or acted out, they were often punished. Punishments, or “aversive consequences” as they are called in the industry, could get creative. At this treatment center, we screamed “NO!” at children, sprayed water in their face, made them stand up and sit down repeatedly, put them in time outs, and used what are euphemistically called “taste aversions.”

A taste aversion is what is pictured here. Vinegar was the most common, though we also used wasabi, cayenne pepper, and whatever else was found to be effective.

 I was told this was the only evidence based intervention available, and without it children would suffer more. I was told the brutality was necessary. Not until finding the adult autistic community did I learn this was not true.

 Sometimes when I talk to others in the field about this, I’m told it’s “not real ABA" or "that's not how it's done anymore." That is a bold pack of outrageous lies. Don’t believe people who tell you this. It’s real. I participated in it. People have trauma because of it. Please stand up against these types of compliance-based interventions.

 Learn more about applied behavior analysis here…

 

http://www.sentex.net/~nexus23/naa_aba.html

 

Why I Left ABA

Aspies in Love: The Rosie Project

I just read this book, and enjoyed it. It was a nice read. The hero is more of a scientific "aspie". Remember there are different types of Aspies, somehow the science and math skills bypassed me but I related to a lot of his character, the social mistakes, the not understanding social nuances. He is a high functioning Aspie who has become a genetics professor and researcher.  In the book, the main character is on the look for a wife, and calls it "The Rosie Project". When I dated I actually wrote lists and did a very specific single ad, so I guess I had my own "husband project" just not as formalized. Many Aspies never date but there are those who fall in love and do marry like myself. I would say the majority are late-bloomers when it comes to love. We aren't the ones being chased by dozens of would be suitors in high school.

Sometimes I wish not every Aspie in fiction was presented as good at math, and very neat, those qualities do not apply to all of us. The book was a sweet, uplifting novel. The two characters share many good times together and some of the conversations they get in, reminded me of ones I had with my husband as we were dating.