grief around disability

[Sab]

Hey everyone,

I hope you are holding up okay during the pandemic. I wanted to share about something and am curious about any shared-experience or insight.

I started a new program in school full time last September, after many years of not attending school in person (I finished a college degree from home, and had only a couple university classes in person over the last 10 years). Since I've received an ASD diagnosis last year, I am able to access support at school (more time for exams, being warned of special activities, breaks during some classes, etc.). That has been really helpful, and I feel "lucky" in a sense, to have those, since I know not everyone has the support they need in school if they don't have a diagnosis.

The school still remains "inaccessible" to me though. My mental (and physical) health struggles a lot, I finish some days overloading, I've had meltdowns during classes, my general anxiety is a lot higher and I feel pretty disconnected from myself during school week.

I took the decision yesterday to cancel one of my big classes this semester (going from 5 to 4 classes) because I simply didn't feel like I had the spoons for it. That decision makes a lot of sense to me for many reasons, but I can't help from feeling pretty sad about not being able to do it like most people, to take longer if I want to complete my formation and for things to become more complicated. I get this grief feeling often when I navigate spaces that are built around neuro-typicality, or simply not accessible to me.

I know my experience could be a lot worst, and I feel pretty privileged to be even attending school right now during the pandemic (it's a small school so it's easier to control covid stuff). I just find it difficult to stay connected to what my needs are as an autistic person when the space and program is really not built for disabled people.

Is anyone familiar with that grieving feeling too? I'd be curious to read anyone who can relate or has had similar experiences.

Thanks and take care

 

[Neonatal RRT]

I have been, and am, on both sides of your situation. At 53, I have done the university thing,...and, at times, really struggled with it. So many of those classes are designed around a "well-rounded" education,...spending time, money, and stress on classes you really have no interest in, but they fit within a category of "electives",...but required for your degree. I have become a big proponent of more trade schools. I would certainly agree that the larger the university student population, the worse it is socially and environmentally for the so-called, typical autistic person.

I am also a part-time instructor at a local university,...and see some of my students struggling through classes for various reasons,...but most of it,...loss of focus and a life of distractions,...but not a lack of intellect.

I would suggest that it is unusual to have a student NOT drop a class or two during their time at the university. I would never think of minimizing your experience, but autistic or not,...it happens, and I can't imagine it NOT affecting your sense of self-worth.

NOW, having said that, it would appear that you are on "the edge" from a neurological stress standpoint. Many of us here totally understand,...been there, done that. Although it can be said that there are common autistic traits that identify us as autistics,...there is statistically far more neurodiversity amongst the autistic population than amongst the neurotypical population. I don't know you personally, but some suggestions for students from an autistic who is also an educator:

1. I know it may go against every cell in your body,...some classes,...those electives,...it's OK to muddle through as "average". "Do the dance, jump through the hoops",...whatever,...just stick with it and get it done. We have a joke at the hospital,..."What do you call the person who graduated dead last in their class at medical school?" Answer: "Doctor" The point being,...get your expensive receipt,...your diploma,...and nobody is ever going to look at your transcripts and give a care how you got your degree.

2. Take care of your brain!!! Research has shown that autistic brains, from a neurotransmitter perspective, may NOT act the same as neurotypical brains. There are areas of our brains that have hyperconductivity and hyperconnectivity that can result in neurotransmitter GABA (inhibitory)-to-glutamine (excitatory) imbalances,...usually in the form of inadequate amounts of GABA. It is difficult to raise GABA through supplementation, as it requires an "unhealthy", leaky blood-brain barrier to cross over, but there are a handful of so-called "glutamine blockers" out there, both prescription and over-the-counter. My favorite one right now is L-theanine, and it crosses the blood-brain barrier readily. I do 200mg, morning and evening,...and if I am feeling more stressed,...bump it up to 400mg 3x/day.

3. Autistics will often have sleep disturbances,...melatonin 3-5mg before bedtime. 800-1000mg of chelated magnesium works as a muscle relaxant, drops your blood pressure, etc. Throw in that L-theanine,...and this combo will make you sleep like "the dead". Decades of not sleeping well,...tried this,...I don't think I even move in the bed.

4. Autistics will often have gastrointestinal stress. The gut is a primary source of neurotransmitters. If the gut is "unhealthy", then the neurotransmitter production can be adversely affected. A varied diet, high in "good fats", high in fiber,...and LOW in simple sugars. A good probiotic will be ones with the most varied bacterial cultures,...read the labels,...better to have more types of bacteria at lower cell counts than few types of bacteria with high cell counts. Glutamine,...the one most of us have too much of,...is produced in the gut,...usually from excessive amounts of food as well as from too much carbohydrates.

5. Oxidative stress!!! Autistics will often have excessive cellular oxidative stress (free radical production). It is enough that it can affect immune function and cause premature cell death, neurodegeneration, etc. It causes a global inflammatory response. For me,...my sensory issues get worse, I loose my mental focus, become more socially withdrawn, etc. One might say, "I become more autistic" if I am under too much oxidative stress and my brain feels like it is swelling inside my skull. Certain common "antioxidant" supplements have been shown, in clinical studies, to reduce this effect. Vitamin C, CoQ10, magnesium, N-acetyl cysteine (NAC), SAM-e, are common and easy to find. I have recently learned to take a dose of each throughout the day,...as all of these work on different cell types and have different receptors for each. Cover your metabolic pathways.

6. Dopamine. Many of us have difficulties in either producing dopamine and/or maintaining proper levels of it. Asperger's condition, in some scientific circles, label it as one of the so-called "low dopamine" neurologic conditions. Part of it may be difficulties in the methylation reactions required for proper utilization of B vitamins and the production of dopamine and serotonin. Part of it may be specific genes regulating dopamine metabolism. Make sure you are using the "active" forms (methyl-B12 and methyl-folate). N-acetyl cysteine and SAM-e are getting some attention, as well, lately due to their roles in neurotransmitter creation, as potent antioxidants, and their ability to donate sulfur,...which many autistics have difficulty converting.

Well,...I could go on and on here,...but suffice it to say,..."Welcome" and "You are amongst friends here". Always willing to help.

 

[OkRad]

I have been, and am, on both sides of your situation. At 53, I have done the university thing,...and, at times, really struggled with it. So many of those classes are designed around a "well-rounded" education,...spending time, money, and stress on classes you really have no interest in, but they fit within a category of "electives",...but required for your degree. I have become a big proponent of more trade schools. I would certainly agree that the larger the university student population, the worse it is socially and environmentally for the so-called, typical autistic person.

I am also a part-time instructor at a local university,...and see some of my students struggling through classes for various reasons,...but most of it,...loss of focus and a life of distractions,...but not a lack of intellect.

I would suggest that it is unusual to have a student NOT drop a class or two during their time at the university. I would never think of minimizing your experience, but autistic or not,...it happens, and I can't imagine it NOT affecting your sense of self-worth.

NOW, having said that, it would appear that you are on "the edge" from a neurological stress standpoint. Many of us here totally understand,...been there, done that. Although it can be said that there are common autistic traits that identify us as autistics,...there is statistically far more neurodiversity amongst the autistic population than amongst the neurotypical population. I don't know you personally, but some suggestions for students from an autistic who is also an educator:

1. I know it may go against every cell in your body,...some classes,...those electives,...it's OK to muddle through as "average". "Do the dance, jump through the hoops",...whatever,...just stick with it and get it done. We have a joke at the hospital,..."What do you call the person who graduated dead last in their class as medical school?" Answer: "Doctor" The point being,...get your expensive receipt,...your diploma,...and nobody is ever going to look at your transcripts and give a care how you got your degree.

2. Take care of your brain!!! Research has shown that autistic brains, biochemically, are NOT the same as neurotypical brains. There are areas of our brains that have hyperconductivity and hyperconnectivity that can result in neurotransmitter GABA (inhibitory)-to-glutamine (excitatory) imbalances,...usually in the form of inadequate amounts of GABA. There are a handful of so-called "glutamine blockers" out there, both prescription and over-the-counter. My favorite one right now is L-theanine. I do 200mg, morning and evening,...and if I am feeling more stressed,...bump it up to 400mg 3x/day.

3. Autistics will often have sleep disturbances,...melatonin 3-5mg before bedtime. 800-1000mg of chelated magnesium works as a muscle relaxant, drops your blood pressure, etc. Throw in that L-theanine,...and this combo will make you sleep like "the dead". Decades of not sleeping well,...tried this,...I don't think I even move in the bed.

4. Autistics will often have gastrointestinal stress. The gut is a primary source of neurotransmitters. If the gut is "unhealthy", then the neurotransmitter production can be adversely affected. A varied diet, high in "good fats", high in fiber,...and LOW in simple sugars. A good probiotic will be ones with the most varied bacterial cultures,...read the labels,...better to have more types of bacteria at lower cell counts than few types of bacteria with high cell counts. Glutamine,...the one most of us have too much of,...is produced in the gut,...usually from excessive amounts of food as well as from too much carbohydrates.

5. Oxidative stress!!! Autistics will often have excessive cellular oxidative stress (free radical production). It is enough that it can affect immune function and cause premature cell death, neurodegeneration, etc. It causes a global inflammatory response. For me,...my sensory issues get worse, I loose my mental focus, become more socially withdrawn, etc. One might say, "I become more autistic" if I am under too much oxidative stress and my brain feels like it is swelling inside my skull. Certain common "antioxidant" supplements have been shown, in clinical studies, to reduce this effect. Vitamin C, CoQ10, magnesium, N-acetyl cysteine (NAC), SAM-e, are common and easy to find. I have recently learned to take a dose of each throughout the day,...as all of these work on different cell types and have different receptors for each. Cover your metabolic pathways.

Well,...I could go on and on here,...but suffice it to say,..."Welcome" and "You are amongst friends here". Always willing to help.

I would just add be careful with GABA. It works in a weird way.....speed up, slow down. I have a genetic dup which makes GABA speed up making me feel terrible. It's not just that some need more, but it is one of those things that has to be regulated

 

[Bolletje]

Oh yeah, I know what you’re feeling and then some. I went to med school and, due to mental health issues, I had to drop classes and sometimes take extended breaks several times. And while I finished, there’s still this little voice in the back of my head that tells me I would have done way better if I hadn’t had all these mental health issues. I sometimes get stuck in a spiral of shame because I feel like I am much less accomplished than many other people my age, and I feel like my disabilities are to blame.

I try really hard to just be proud of everything I have accomplished despite of my disabilities, but some days my brain makes it really hard on me.

 

[Neonatal RRT]

@Bolletje : I was a bit curious when you said you were also in health care. I clicked onto your profile and had to laugh,..."It’s idiotic how I can perform surgery quite accurately, but I keep accidentally cutting myself while cooking >_<" That's a good one.

My situation is a bit more "nerdy". I could say something like, "I can read mechanical ventilator waveform graphics and put it together with physical exam quickly,...but I can't seem to explain it verbally in any meaningful way to my colleagues." Some days, it seems I am speaking another language,...the other person in a wide-eyed stare,...blank of understanding,...then the dismissal of what I just said. OK,...so,...let's spend another 3 months sorting out what I just figured out in 3 minutes. Anger and frustration.

 

[Neonatal RRT]

I would just add be careful with GABA. It works in a weird way.....speed up, slow down. I have a genetic dup which makes GABA speed up making me feel terrible. It's not just that some need more, but it is one of those things that has to be regulated

I am just learning about this phenomenon. There are at least three known phenotypes of Asperger's condition based upon this working theory of Asperger's being one of the so-called "low dopamine" neurologic conditions. This is from a paper authored by Stephanie Swainston, May 2019, titled Dopamine Turnover in Asperger Syndrome.

1. Dopamine Transporter type (DAT type): Polymorphisms in SLC6A3 causing dopamine leakage from the DAT, the 10-repeat VNTR of SLC6A3 causing DAT overexpression, or syntaxin 1A polymorphisms leading to increased DAT function and a faster rate of dopamine turnover: ‘the overclocking model’. The subsequent postsynaptic low dopaminergic tone may cause higher neuronal excitability and a faster rate of firing, producing sensory hypersensitivity, fast thoughts, sensitivity to salience, poor executive function and anxiety.
2. Glutamate type: Polymorphisms of SLC25A12 resulting in a reduction of VMAT2 and dysfunctional dopamine handling and oxidative stress within the neuron.
3. GABRB3 type: Polymorphisms of GABRB3 causing reduced binding to GABAA receptors with a β3 subunit. GABAA receptors co-localise with dopamine D2 receptors, and levels of tonic dopamine may modulate them in terms of neuronal spine formation. Reduced β3 subunit function/expression may inhibit the emission of more dopamine, leading to chronically low dopamine.

In the model of the "glutamate type",...summarizing the entire text,...glutamate is, in part, responsible for the production of dopamine. By using a so-called glutamine-blocker within the context of someone with a SLC25A12 polymorphism, one may reduce the production of dopamine,...an undesirable side effect. @OkRad: You may be one of those individuals if you are sensitive to things that influence the GABA-to-glutamine ratio.

The proposed usage of a glutamine-blocker, like L-theanine, may not necessarily raise GABA per se, but by reducing glutamine, balances the GABA-to-glutamine ratio, in hopes of reducing the state of hyperexcitability in specific areas of the brain. At least, this is the primary goal. However, the brain is, in no way, homogeneous in its neurotransmitter balance. What may work well in one area of the brain, may have deleterious effects in another.

 

[OkRad]

I am just learning about this phenomenon. There are at least three known phenotypes of Asperger's condition based upon this working theory of Asperger's being one of the so-called "low dopamine" neurologic conditions. This is from a paper authored by Stephanie Swainston, May 2019, titled Dopamine Turnover in Asperger Syndrome.

1. Dopamine Transporter type (DAT type): Polymorphisms in SLC6A3 causing dopamine leakage from the DAT, the 10-repeat VNTR of SLC6A3 causing DAT overexpression, or syntaxin 1A polymorphisms leading to increased DAT function and a faster rate of dopamine turnover: ‘the overclocking model’. The subsequent postsynaptic low dopaminergic tone may cause higher neuronal excitability and a faster rate of firing, producing sensory hypersensitivity, fast thoughts, sensitivity to salience, poor executive function and anxiety.
2. Glutamate type: Polymorphisms of SLC25A12 resulting in a reduction of VMAT2 and dysfunctional dopamine handling and oxidative stress within the neuron.
3. GABRB3 type: Polymorphisms of GABRB3 causing reduced binding to GABAA receptors with a β3 subunit. GABAA receptors co-localise with dopamine D2 receptors, and levels of tonic dopamine may modulate them in terms of neuronal spine formation. Reduced β3 subunit function/expression may inhibit the emission of more dopamine, leading to chronically low dopamine.

In the model of the "glutamate type",...summarizing the entire text,...glutamate is, in part, responsible for the production of dopamine. By using a so-called glutamine-blocker within the context of someone with a SLC25A12 polymorphism, one may reduce the production of dopamine,...an undesirable side effect. @OkRad: You may be one of those individuals if you are sensitive to things that influence the GABA-to-glutamine ratio.

The proposed usage of a glutamine-blocker, like L-theanine, may not necessarily raise GABA per se, but by reducing glutamine, balances the GABA-to-glutamine ratio, in hopes of reducing the state of hyperexcitability in specific areas of the brain. At least, this is the primary goal. However, the brain is, in no way, homogeneous in its neurotransmitter balance. What may work well in one area of the brain, may have deleterious effects in another.

It's really weird, eh? Like appetite hormones. People think you need more or less but it's really like homeostatis. A delicate balance that we don't understand yet.

 

[Wolfgangus Faldestolius]

As a youngster I was sensitive to small traumas. Then several big ones built up, one after another, over a number of years. I panicked for a long time after that.

The only thing that is for certain to get better is my relationship with me.

 

[WolfSpirit]

Hey everyone,

I hope you are holding up okay during the pandemic. I wanted to share about something and am curious about any shared-experience or insight.

I started a new program in school full time last September, after many years of not attending school in person (I finished a college degree from home, and had only a couple university classes in person over the last 10 years). Since I've received an ASD diagnosis last year, I am able to access support at school (more time for exams, being warned of special activities, breaks during some classes, etc.). That has been really helpful, and I feel "lucky" in a sense, to have those, since I know not everyone has the support they need in school if they don't have a diagnosis.

The school still remains "inaccessible" to me though. My mental (and physical) health struggles a lot, I finish some days overloading, I've had meltdowns during classes, my general anxiety is a lot higher and I feel pretty disconnected from myself during school week.

I took the decision yesterday to cancel one of my big classes this semester (going from 5 to 4 classes) because I simply didn't feel like I had the spoons for it. That decision makes a lot of sense to me for many reasons, but I can't help from feeling pretty sad about not being able to do it like most people, to take longer if I want to complete my formation and for things to become more complicated. I get this grief feeling often when I navigate spaces that are built around neuro-typicality, or simply not accessible to me.

I know my experience could be a lot worst, and I feel pretty privileged to be even attending school right now during the pandemic (it's a small school so it's easier to control covid stuff). I just find it difficult to stay connected to what my needs are as an autistic person when the space and program is really not built for disabled people.

Is anyone familiar with that grieving feeling too? I'd be curious to read anyone who can relate or has had similar experiences.

Thanks and take care

Ohh... such a complicated question. Brings up so many different memories for me, that I probably can't describe even most of them, but... I'll try a few.

First, I am so impressed you're able to handle a full load, or anything even remotely close! I never could've!

Second, I know my university generally advised that disabled students take a reduced course load, and had a specific rule about what qualified as 'full time' for disabled students that was different than for nondisabled students, so that we still qualified for student loans, and student deals with outside companies etc. (i.e. phone, cable).

Third, because I went what most people would consider to be 'part time', though it was full time for a disabled student, (2 courses a term, one short of the 3 for nondisabled students), and I ended up doing 2 different undergrad degrees, I was on campus for a very long time, and I saw many of my colleagues and friends move on, and or move past me. This includes one other student who was also working on her second degree, and became disabled after I knew her. For the most part, this usually didn't bother me, but occasionally, it would get to me. (especially this last one I mentioned.) My first autism specialist had a good response when I complained about it to her. She said not to worry about it, because I was on my own trajectory, and I was dealing with a lot of difficulties they didn't have to deal with. She also mentioned that I had managed to do a bunch of things that other people (especially those without disabilities) hadn't done, and would probably never do. (things I usually discounted, because it was what my friends were doing. Most of those autistic self advocates). She reassured me (yet again) that I had a place in the world, and that I was where I should be, despite all my difficulties, and all the challenges, and all the resistance from others I experienced. It helped a lot.

4. Early in my University career (I think after my first year, and during my hiatus before my second) I was told by a disability organization, experienced in finding people with all sorts of disabilities jobs, most with much more severe disabilities than mine, that not only was I not capable of taking classes in person, (even though I had already succeeded at doing so) but that they also refused to help me find a job, just because I was not capable of using speech 100% of the time, and 100% of situations. So, don't believe everything anyone tells you about what you "can't" do, or "shouldn't" do, or, for that matter, even what you "should" be able to do!! As a good friend often reminds me: They're not in your body, they don't live your life. You're the expert on your own life, and what's going on in it, and in your body.

One of the best things that ever happened to me was (well, 1. getting a diagnosis) working with my first autism specialist, and having her help me switch my frame of reference from NT's to other autistics, and develop a set of 'reasonable expectations' based on autistic standards rather than NT ones. A key component of that was realizing that stress greatly affects autistic ability to function, and that things that don't phase NTS, will greatly stress us out, and that's okay!! That it was perfectly acceptable to change my expectations of what I 'should' be able to do, based on how much stress I was under! Also, to recognize that it is perfectly normal for autistics to have wildly fluctuating abilities to execute skills, and demonstrate knowledge in different situations. (something that she said is the hardest thing for NTs, and anyone not very experienced with autism to understand.)

Of course, it helped that she was always impressed with how functional I was, even when I didn't feel very functional at all. It didn't matter how long the list of things I couldn't do was, she would always be impressed about the things I did manage to do! . When someone believes in you like that, it's hard not to start to believe them, and in their perspective of the world. (especially when they can produce results!)

 

[WolfSpirit]

Hey everyone,

I hope you are holding up okay during the pandemic. I wanted to share about something and am curious about any shared-experience or insight.

I started a new program in school full time last September, after many years of not attending school in person (I finished a college degree from home, and had only a couple university classes in person over the last 10 years). Since I've received an ASD diagnosis last year, I am able to access support at school (more time for exams, being warned of special activities, breaks during some classes, etc.). That has been really helpful, and I feel "lucky" in a sense, to have those, since I know not everyone has the support they need in school if they don't have a diagnosis.

The school still remains "inaccessible" to me though. My mental (and physical) health struggles a lot, I finish some days overloading, I've had meltdowns during classes, my general anxiety is a lot higher and I feel pretty disconnected from myself during school week.

I took the decision yesterday to cancel one of my big classes this semester (going from 5 to 4 classes) because I simply didn't feel like I had the spoons for it. That decision makes a lot of sense to me for many reasons, but I can't help from feeling pretty sad about not being able to do it like most people, to take longer if I want to complete my formation and for things to become more complicated. I get this grief feeling often when I navigate spaces that are built around neuro-typicality, or simply not accessible to me.

I know my experience could be a lot worst, and I feel pretty privileged to be even attending school right now during the pandemic (it's a small school so it's easier to control covid stuff). I just find it difficult to stay connected to what my needs are as an autistic person when the space and program is really not built for disabled people.

Is anyone familiar with that grieving feeling too? I'd be curious to read anyone who can relate or has had similar experiences.

Thanks and take care

Oh yeah, forgot to mention the whole "barrier" thing... that feeling of being in the wrong place, of dealing with nothing but intolerance. SOOO been there!! Usually didn't let it get to me, and kept fighting. My self-advocacy skills, and friends helped a lot there, but every now and then it would really get to me!! In the end, it's why I didn't pursue grad school, and why I almost gave up on my second degree before getting to my honors thesis. My first autism specialist (and absolute goddess in my mind, though she disagreed vehemently) kept telling me "they're just not ready for you yet. They haven't caught up to the times." and that all their intolerance didn't mean I was in the wrong place. It just meant they were the ones that were in the wrong. .

That sort of intolerance, and even ignorance, and obliviousness, is why I gave up on the whole idea of employment and financial self-sufficiency. I do reflect on all that from time to time these days, and recognize just how ignorant people were at the time about autistic needs (and abilities). I didn't realize it much at the time, because I was immersed in the disability rights community, and all my peers seemed to be 'clued in', even the service providers (well, most of them). It makes me angry, and it makes me sad, especially since I put so much energy and effort into trying to find, and make, a place for myself in their world, and in the end, it was all useless (at least with regards to myself, but I have a few indications it might have helped people since me, and helped the people I encountered understand people like me more), but at the same time, I've wound up with a life I love, and a peace of mind I could never have imagined, so... I can't regret it all.

 

[Bolletje]

@Bolletje : I was a bit curious when you said you were also in health care. I clicked onto your profile and had to laugh,..."It’s idiotic how I can perform surgery quite accurately, but I keep accidentally cutting myself while cooking >_<" That's a good one.

My situation is a bit more "nerdy". I could say something like, "I can read mechanical ventilator waveform graphics and put it together with physical exam quickly,...but I can't seem to explain it verbally in any meaningful way to my colleagues." Some days, it seems I am speaking another language,...the other person in a wide-eyed stare,...blank of understanding,...then the dismissal of what I just said. OK,...so,...let's spend another 3 months sorting out what I just figured out in 3 minutes. Anger and frustration.

Hehe. Well, my current situation is pretty nerdy too, I interpret lab results all day