jayraytee
Well-Known Member
I have not posted in quite a while, mainly I find these forums to be frustrating to me personally due to the official diagnosis vs self diagnosis debate. I personally feel there is too much room for error in self diagnosis. I have been diagnosed officially three times and each one took quite a bit of time to rule out other things. But on a forum people can post anything and claim anything and other people can look at these posts for reliable information when it might not be.
I took part in the adult version of the Balovaptan Clinical Trial. On one hand I don't believe in a "cure" for my aspergers and on the other hand I am always looking for ways to adjust and cope with it. Technically a lot of autistic behaviors are exactly that, coping mechanisms.
Prior diagnosis: From my earliest memories I can remember having sensory issues; seams and tags on clothing, not liking haircuts, certain sounds, but mostly certain flavors and food textures. This was an issue at dinner time with both the sound of people eating and the food itself. Probably the biggest battle with my parents as a kid. Social issues, hyper focus and special interests didn't really start until I entered school.
My first day of kindergarten I stood in the doorway and cried because the thought of entering a room full of 30 kids was too much. After getting used to it I still felt like an alien observer watching the other kids interact and play in ways I had no desire for. Some days I sat on the floor with Robbie a kid that had cerebral palsy and tried to help him put a phone back together. My first special interest was in drawing, I could be in a hyper focused trance-like state and block out all the sensory stuff. I started with drawing landscapes, then animals, then people from the encyclopedias.
By 3rd grade I started having massive stress related migraine headaches, I developed Angioneurotic edema when I took any medication with aspirin. I also had dermographia, but that wasn't diagnosed until much later.
I was also not very coordinated, things like riding a bike or swimming were difficult. The best way for me to describe it is that when learning a skill like these I must consciously move and orchestrate every limb individually. I did learn to ride a bike later than most. But when it comes to swimming something like the butterfly stroke feels more natural because the arms both do the same movement and the legs stay together.
Over the years my special interest has changed as the interest became less challenging. From drawing to computers and programing, to fossils and geology, to history and genealogy. Due to the hyper focus on the special interests I often would not notice if I was tired or hungry. The tension and stress manifested itself as pain in my head, neck and back.
I also tend to like to eat the same foods, listen to the same albums over and over, eat at the same restaurants and order the same food, end my evenings exactly the same way every day, park in the same parking spots at work, the store, the mall or anywhere I frequent.
The diagnosis: It wasn't until a few years into our marriage, and due to struggling to read body language and interpret emotions, that I sought a diagnosis. I saw two psychologists, the first one diagnosed me with Asperger’s and General Anxiety. I switched psychologists basically because she held the view that she didn't like diagnosing people but would rather work with them to not have to have a diagnosis. Which was counter to the reason I wanted a diagnosis, I don't believe you can accurately understand and work with a problem without first defining it correctly. The second psychologist gave me the same diagnosis, Asperger’s and General Anxiety. His conclusion was that I wasn't always feeling negative emotion but instead it was building up physically as tension.
For the Clinical Study I was also given the Autism Spectrum diagnostic test called the ADOS. As well as an IQ test and physical/neurological examinations.
The Balovaptan Clinical Study: Obviously I wasn't told if I was given the trial drug or a placebo, but here are my observations; A few weeks in I started noticing that I was hungrier. Normally I never would wake up hungry but now I was. Then I started noticing a reduction in the sensory issues, flavors were less dramatic and cloth that previously felt rough now felt smooth. My fingertips almost felt numb compared to what I was used to.
Following the reduction in sensory issues, which hadn't fully gone away, I noticed my stress levels decreasing. A noticeable decrease in the physical tension of my head, neck and back. Have not had a full migraine since starting the trial.
My mood was generally happier, my kids commented that I was happier and more social. My time at work and the drive home was less stressful and irritating.
Next I started craving breakfast foods I hadn't had since I was about 4 or 5 years old. I bought some and ate them every day for a week or two but then less and less. I started having this feeling like something inside me was awakening after it had been asleep or dormant since I was about 4 years old. I recognized the feeling but had not felt it since that period of my life.
While sitting in my car in a mall parking lot I noticed a lady struggling to get a passenger out of their car and into a wheelchair. Several minutes (and several pedestrians) passed by and I could tell they were not getting anywhere. I walked over and asked if they needed a pair of hands. I ended up lifting an elderly lady into her wheelchair. The other lady gave me a hug and as I walked to the mall, I felt unregulated emotion well up in me and I teared up. It was unexpected and it took me a minute to regain my composure. I experienced this type of emotional wave a couple more times recently over other situations. I have never struggled with feeling empathy inside but there usually wasn't an involuntary outward expression.
Another thing that has gradually started to occur is that I am waking up in the middle of the night, typically for me about 4 am. It seems to coincide with when I am dreaming, the dreams are social in nature. I feel somewhat stressed after awakening.
Week 16 Speculation: I think the hyper focused special interests are a coping mechanism which was developed early on as the sensory related and social stress increased. People find ways to survive. By reducing the sensory issues, the study drug has allowed the once dormant (or reduced) emotional intelligence to resurface and pick up where it left off. That I believe is what has awoken and it's also why the self-regulation is less mature. I have wondered if awakening during socially natured dreams was also part of this as dreams are used to work out problems. I wonder if that’s why babies and kids wake up a lot during the night. I could see how for some this unregulated emotion could seem too overwhelming, but I believe a person will naturally learn to regulate now given the opportunity.
Week 25 Speculation: I've noticed with the reduced tension in the muscles in my back and neck that when I walk, I feel each muscle moving independently on their own without concentration. I am wondering if the large amount of stress and tension contributed to the lack of coordination.
Week 27 Speculation: I have started to actually sleep through the dreams and wake up as normal, actually feel less tired as if my sleep quality has improved. I have not noticed a dramatic change in my social behavior, but I believe the behaviors will take time to change as they have been built up over a lifetime. It seems to me this drug has alleviated some negative tension causing issues which could allow for change in behavior given enough time.
I am now at the point in the Clinical Trial where it’s open label, so I am taking the drug as opposed to possibly being on the placebo. I see no difference in what I am taking now than what I took from the beginning, I think I have been on the actual drug. But part of the way into this bottle of pills I received a call from the study location saying that the company has ended the trial due to the fact that they have not seen a dramatic change in behavior in the children’s version of the study.
I may be wrong, but I think this is a misconstrued conclusion, as the drug will not change your behavior. Only you can learn to change your own behavior over time. The drug only gives you a window of opportunity in the tension causing issues that bring on the coping behaviors.
Side Effects: I have witnessed none. They monitored my temperature, I had medical exams, EKGs, blood samples taken and neurological exams through the entirety of the study.
I took part in the adult version of the Balovaptan Clinical Trial. On one hand I don't believe in a "cure" for my aspergers and on the other hand I am always looking for ways to adjust and cope with it. Technically a lot of autistic behaviors are exactly that, coping mechanisms.
Prior diagnosis: From my earliest memories I can remember having sensory issues; seams and tags on clothing, not liking haircuts, certain sounds, but mostly certain flavors and food textures. This was an issue at dinner time with both the sound of people eating and the food itself. Probably the biggest battle with my parents as a kid. Social issues, hyper focus and special interests didn't really start until I entered school.
My first day of kindergarten I stood in the doorway and cried because the thought of entering a room full of 30 kids was too much. After getting used to it I still felt like an alien observer watching the other kids interact and play in ways I had no desire for. Some days I sat on the floor with Robbie a kid that had cerebral palsy and tried to help him put a phone back together. My first special interest was in drawing, I could be in a hyper focused trance-like state and block out all the sensory stuff. I started with drawing landscapes, then animals, then people from the encyclopedias.
By 3rd grade I started having massive stress related migraine headaches, I developed Angioneurotic edema when I took any medication with aspirin. I also had dermographia, but that wasn't diagnosed until much later.
I was also not very coordinated, things like riding a bike or swimming were difficult. The best way for me to describe it is that when learning a skill like these I must consciously move and orchestrate every limb individually. I did learn to ride a bike later than most. But when it comes to swimming something like the butterfly stroke feels more natural because the arms both do the same movement and the legs stay together.
Over the years my special interest has changed as the interest became less challenging. From drawing to computers and programing, to fossils and geology, to history and genealogy. Due to the hyper focus on the special interests I often would not notice if I was tired or hungry. The tension and stress manifested itself as pain in my head, neck and back.
I also tend to like to eat the same foods, listen to the same albums over and over, eat at the same restaurants and order the same food, end my evenings exactly the same way every day, park in the same parking spots at work, the store, the mall or anywhere I frequent.
The diagnosis: It wasn't until a few years into our marriage, and due to struggling to read body language and interpret emotions, that I sought a diagnosis. I saw two psychologists, the first one diagnosed me with Asperger’s and General Anxiety. I switched psychologists basically because she held the view that she didn't like diagnosing people but would rather work with them to not have to have a diagnosis. Which was counter to the reason I wanted a diagnosis, I don't believe you can accurately understand and work with a problem without first defining it correctly. The second psychologist gave me the same diagnosis, Asperger’s and General Anxiety. His conclusion was that I wasn't always feeling negative emotion but instead it was building up physically as tension.
For the Clinical Study I was also given the Autism Spectrum diagnostic test called the ADOS. As well as an IQ test and physical/neurological examinations.
The Balovaptan Clinical Study: Obviously I wasn't told if I was given the trial drug or a placebo, but here are my observations; A few weeks in I started noticing that I was hungrier. Normally I never would wake up hungry but now I was. Then I started noticing a reduction in the sensory issues, flavors were less dramatic and cloth that previously felt rough now felt smooth. My fingertips almost felt numb compared to what I was used to.
Following the reduction in sensory issues, which hadn't fully gone away, I noticed my stress levels decreasing. A noticeable decrease in the physical tension of my head, neck and back. Have not had a full migraine since starting the trial.
My mood was generally happier, my kids commented that I was happier and more social. My time at work and the drive home was less stressful and irritating.
Next I started craving breakfast foods I hadn't had since I was about 4 or 5 years old. I bought some and ate them every day for a week or two but then less and less. I started having this feeling like something inside me was awakening after it had been asleep or dormant since I was about 4 years old. I recognized the feeling but had not felt it since that period of my life.
While sitting in my car in a mall parking lot I noticed a lady struggling to get a passenger out of their car and into a wheelchair. Several minutes (and several pedestrians) passed by and I could tell they were not getting anywhere. I walked over and asked if they needed a pair of hands. I ended up lifting an elderly lady into her wheelchair. The other lady gave me a hug and as I walked to the mall, I felt unregulated emotion well up in me and I teared up. It was unexpected and it took me a minute to regain my composure. I experienced this type of emotional wave a couple more times recently over other situations. I have never struggled with feeling empathy inside but there usually wasn't an involuntary outward expression.
Another thing that has gradually started to occur is that I am waking up in the middle of the night, typically for me about 4 am. It seems to coincide with when I am dreaming, the dreams are social in nature. I feel somewhat stressed after awakening.
Week 16 Speculation: I think the hyper focused special interests are a coping mechanism which was developed early on as the sensory related and social stress increased. People find ways to survive. By reducing the sensory issues, the study drug has allowed the once dormant (or reduced) emotional intelligence to resurface and pick up where it left off. That I believe is what has awoken and it's also why the self-regulation is less mature. I have wondered if awakening during socially natured dreams was also part of this as dreams are used to work out problems. I wonder if that’s why babies and kids wake up a lot during the night. I could see how for some this unregulated emotion could seem too overwhelming, but I believe a person will naturally learn to regulate now given the opportunity.
Week 25 Speculation: I've noticed with the reduced tension in the muscles in my back and neck that when I walk, I feel each muscle moving independently on their own without concentration. I am wondering if the large amount of stress and tension contributed to the lack of coordination.
Week 27 Speculation: I have started to actually sleep through the dreams and wake up as normal, actually feel less tired as if my sleep quality has improved. I have not noticed a dramatic change in my social behavior, but I believe the behaviors will take time to change as they have been built up over a lifetime. It seems to me this drug has alleviated some negative tension causing issues which could allow for change in behavior given enough time.
I am now at the point in the Clinical Trial where it’s open label, so I am taking the drug as opposed to possibly being on the placebo. I see no difference in what I am taking now than what I took from the beginning, I think I have been on the actual drug. But part of the way into this bottle of pills I received a call from the study location saying that the company has ended the trial due to the fact that they have not seen a dramatic change in behavior in the children’s version of the study.
I may be wrong, but I think this is a misconstrued conclusion, as the drug will not change your behavior. Only you can learn to change your own behavior over time. The drug only gives you a window of opportunity in the tension causing issues that bring on the coping behaviors.
Side Effects: I have witnessed none. They monitored my temperature, I had medical exams, EKGs, blood samples taken and neurological exams through the entirety of the study.
Last edited:
