Denial of accommodations because 'too high functioning'

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JSBACH
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18 May 2019, 1:51 pm

Without wanting to spread negative energy, I have no other place to talk about this subject, so I decided to write this post.
I'm sorry for the length of it, but am in desperate need of help.

I'm still a university student.
Having already a university degree, I am still not working a job. I am now studying in another field of interest (STEM) in which the chances of finding a job are higher.

Every few months a vicious cycle repeats of studying, working very hard, and then crashing, completely burnt out, from time to time even being suicidal. Followed by staying home for a few weeks by order of my doctor.
Right now I am in the middle of a big crash. I can't do anything at all anymore besides eating and sleeping. Sensory tolerance is non existent.

My verbal IQ is a little over 160, my performance IQ a little over 120. I score the highest grades of all 140 students in my class. As such, getting accommodations in university is very hard to not even possible. I am to high functioning for that. But without them, I don't function at all. At university, people see me as very competent. However, they fail to see my existence out of the school environment.
I barely manage to attend classes and am only able to avoid shutdown on pure adrenaline, only to come home and completely shut down.
I am so overloaded, I don't process speech of the lecturer anymore. Most of the time, between lessons, I go to my car (live close to the campus) and put on earmuffs to try to recover from the all day long sensory assault.

I always thought of myself as high functioning, but now that the amount of responsibility increases with age, lots of deficits arise. It feels like I've become a lot more autistic the past year.

Despite academical success, I am not able to eat a varied diet without support, don't know how to clean my own room, can't make doctor's appointments... yesterday, I banged my head against a wall because I was too stressed and melting down (I don't think high functioning people do that).
I feel so impaired, but the outside world sees me as too high functioning to provide support.
Mistaken by my verbal fluency, eloquence and resume, I have a hard time finding the help needed.

They don't see that I literally write down (script) every phone call, every appointment, or presentation. If I have to go to a social event, I have to arrange transport, because don't dare to drive anymore after the overload of socialising (I get drunk from that, and I don't drink alcohol). I can't go out in public without earplugs.

Lately, I don't even find rest at home. I can't stand the light outside. The relentless noise of traffic, fighter jets training in the airspace above my house, I am going crazy.

To those of you that are older than me, how have you managed? I'm afraid I can't take this sh#t any longer. :?
Things that gave me joy in the past, I don't have the energy anymore for them.

I don't think I will ever be able to work a full-time job, despite my intelligence.
I feel such a loser... autism is such a burden in my life.

For those of you who made it to the end, thanks for reading, I think I needed to vent somewhere... any advice from people with more life experience is really welcome.


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StarTrekker
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18 May 2019, 2:05 pm

I could have written your post myself. I was recently rediagnosed as level 2 specifically because of the problems you mention. I have an IQ of 120, verbal IQ of 141, and a university degree, yet I'm on SSDI and working 10.5 hours a week at a minimum wage job, and have severe difficulty with eating regularly, remembering to take my meds, getting enough sleep, changing my routine, etc. It's incredibly frustrating.

If you have the diagnosis on paper, your school is legally required to provide you with accommodations; not doing so is discrimination and is illegal. Have you spoken to your school's disability resource center? What do they say? Do you have a therapist you could bring these concerns to? One of my therapists is helping me find resources to support me, like in-home services to help with cooking, cleaning, etc. She's also helping me look into getting a service dog, which will help me with my meltdowns and enable me to get out of the house more regularly.

If you need help finding work, I don't know what the services are like in western Europe, but here in the US we have a vocational rehabilitation program that provides free pre-and post employment assistance to people with documented disabilities. Perhaps you could see if your area has something similar.


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Twilightprincess
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18 May 2019, 2:08 pm

I’m having similar problems. I did great in college, graduating summa cum laude, but I’ve not been able to achieve any success outside of that.



JSBACH
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18 May 2019, 2:29 pm

StarTrekker wrote:
I could have written your post myself. I was recently rediagnosed as level 2 specifically because of the problems you mention. I have an IQ of 120, verbal IQ of 141, and a university degree, yet I'm on SSDI and working 10.5 hours a week at a minimum wage job, and have severe difficulty with eating regularly, remembering to take my meds, getting enough sleep, changing my routine, etc. It's incredibly frustrating.

If you have the diagnosis on paper, your school is legally required to provide you with accommodations; not doing so is discrimination and is illegal. Have you spoken to your school's disability resource center? What do they say? Do you have a therapist you could bring these concerns to? One of my therapists is helping me find resources to support me, like in-home services to help with cooking, cleaning, etc. She's also helping me look into getting a service dog, which will help me with my meltdowns and enable me to get out of the house more regularly.

If you need help finding work, I don't know what the services are like in western Europe, but here in the US we have a vocational rehabilitation program that provides free pre-and post employment assistance to people with documented disabilities. Perhaps you could see if your area has something similar.


Thanks for your reply startrekker.
I have read a lot of your posts from the past, and have the mutual feeling that I might as well have written them myself!

I hope you can get your service dog. I had a German shepherd that was extremely trained, but he passed away a year ago. I am still a bit too emotional to get another one. They are very helpful in spreading calm energy, creating routine (walking, feeding...), they are an autistic persons best friend!

Finding job wouldn't be to hard for me in the past, because I've become an expert at masking. Now my energy is so low, I even find myself Stimming in public, and avoiding eye contact, Having little ability to mask.

It is the stress of office politics, interaction with customers, dreaded phone calls, noise of fellow office workers, I wouldn't be able to deal with for a long time.

I have an official diagnosis, and have tried to get some services, but the doctor that had to see me to allow this disability services just flat out said: can you shower yourself? Can you dress yourself? You have an academic degree, so I see no problems!

I know I have a lot to offer to society, but if I keep being forced to do things that I can't do, I cannot be productive at all. The only accommodations I have at university is half an hour more time to take a test, and being allowed to use earmuffs. They are not inclined to help with other things (eg: note taking, can't process speech in noisy class), because my grades are to high (I scored an average of 88.5 percent on all my exams).

Even minor things like a breach in routine (lessons moved unexpectedly), cause so much anxiety I cease to function completely.
I know this might sound silly...

I'm seeing my doctor on Monday, and I hope with their intervention it is possible to get to a therapist faster (minimal eight week waiting list for someone with experience in autism).


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Trogluddite
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18 May 2019, 5:22 pm

JSBACH wrote:
I know this might sound silly...

None of what you've said sounds silly to me at all - it is all painfully familiar. There is virtually no recognition of the fact that "functioning level" can vary depending upon the kind of task we have to do, how many demands are place upon us, stress levels, mental state etc. And there is very little recognition that masking and compensating for our autistic traits can be extremely demanding and easily leads to depletion of our ability to function at our best, or even at all. This certainly can lead to high anxiety and depression, but I think that burn-outs, and the consequent impact on our ability to cope and to mask/compensate, needs recognising as a separate phenomenon - factors such as difficulty processing language, or executive functioning problems impairing our self-care, are distinct from the usual symptoms of those mental illnesses, even when they are also present.

I wasn't diagnosed until my 40's, so had no clue what was happening each time a burn-out led to the loss of yet another job, or inability to complete a course of education. As far as most people in authority are concerned, if you're meeting their demands in the one little area of your life that concerns them, they simply don't care if the rest of your life is going to rack and ruin - until, of course, your autistic traits start seeping into their little domain because you simply can't hide them any more (at which point you may find yourself accused of "not trying hard enough".)

I would stress to your doctor/counsellor/university that while the prescribed periods of rest and counselling are certainly beneficial, you need assistance with preventing them from happening in the first place, emphasising that it's the build up of stress from compensating for day-to-day difficulties which is the root cause of the burn-outs.

JSBACH wrote:
Now my energy is so low, I even find myself Stimming in public, and avoiding eye contact, Having little ability to mask.

The best thing for this I've found, ultimately, is to lower the mask more when I'm not burned out. The constant looking over your shoulder to check that your mask isn't slipping is one of the biggest causes of anxiety, IMHO; and keeping the mask up is one of the biggest drains on your energy. Over time, it can also cause problems with self-esteem, self-identity, and losing the feeling of being a free agent; leading to persistent or recurrent mental health problems. This doesn't necessarily mean giving up masking completely. Not everyone will accept it easily, so I'm selective about how far I let the mask drop and with whom. The important thing is to realise that masking is a choice; just one coping strategy among many, maybe for use when it is to your advantage, but always taking into account the cost.

I've been pleasantly surprised by how many people will accept me stimming, not forcing eye-contact, asking for more time to answer questions, taking "time-outs" from social occasions, etc. once I explained how it's beneficial for everyone involved if my brain is performing at its best and I'm not crashing into a state where I'm no use for anything every few years. Being more openly "autistic" helps to manage other people's expectations a bit, too; for example, friends don't get uppity with me so much now for bowing out of social occasions, because they accept that I don't mean any insult by it, and that socialising is just something that I have to do in moderation so that I can manage my energy levels.

This is easier said than done, and I found it very frightening at first, as I was so conditioned to feel that my mask was totally essential - but I've found that the benefits outweigh the disadvantages overall.


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ASPartOfMe
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18 May 2019, 6:32 pm

This is why functioning labels are a bunch of bull****. Why they made functioning labels dependent on IQ I don’t know but ability to functioning and IQ are two different things.

Autistics have deal with our disadvantages by doing what we do best. Hyperfocus and solve one issue at a time and don’t think about your overall situation because it is intimidating.

Startrekker had a good idea. Try and get reassessed to a more severe level of autism. The assessment should also be for co morbid conditions. Make sure you get a diagnostic report to make your case for accommodations.


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cyberdad
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18 May 2019, 7:28 pm

I would have thought getting re-assessed as lower functioning is a no-brainer (sorry pardon the pun)

after getting a re-assessment the OP should enquire with his university/college? whether they offer disability support services (DSS) to get study/living assistance.



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18 May 2019, 7:29 pm

ASPartOfMe wrote:
This is why functioning labels are a bunch of bull****. Why they made functioning labels dependent on IQ I don’t know but ability to functioning and IQ are two different things..


As my NT IQ is 129 I might be accused of being jealous but I do sense some mental masturbation going on in this thread....the force is strong in these young ones :D



JSBACH
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Yesterday, 4:41 pm

Trogluddite wrote:
JSBACH wrote:
I know this might sound silly...

None of what you've said sounds silly to me at all - it is all painfully familiar. There is virtually no recognition of the fact that "functioning level" can vary depending upon the kind of task we have to do, how many demands are place upon us, stress levels, mental state etc. And there is very little recognition that masking and compensating for our autistic traits can be extremely demanding and easily leads to depletion of our ability to function at our best, or even at all. This certainly can lead to high anxiety and depression, but I think that burn-outs, and the consequent impact on our ability to cope and to mask/compensate, needs recognising as a separate phenomenon - factors such as difficulty processing language, or executive functioning problems impairing our self-care, are distinct from the usual symptoms of those mental illnesses, even when they are also present.

I wasn't diagnosed until my 40's, so had no clue what was happening each time a burn-out led to the loss of yet another job, or inability to complete a course of education. As far as most people in authority are concerned, if you're meeting their demands in the one little area of your life that concerns them, they simply don't care if the rest of your life is going to rack and ruin - until, of course, your autistic traits start seeping into their little domain because you simply can't hide them any more (at which point you may find yourself accused of "not trying hard enough".)

I would stress to your doctor/counsellor/university that while the prescribed periods of rest and counselling are certainly beneficial, you need assistance with preventing them from happening in the first place, emphasising that it's the build up of stress from compensating for day-to-day difficulties which is the root cause of the burn-outs.

JSBACH wrote:
Now my energy is so low, I even find myself Stimming in public, and avoiding eye contact, Having little ability to mask.

The best thing for this I've found, ultimately, is to lower the mask more when I'm not burned out. The constant looking over your shoulder to check that your mask isn't slipping is one of the biggest causes of anxiety, IMHO; and keeping the mask up is one of the biggest drains on your energy. Over time, it can also cause problems with self-esteem, self-identity, and losing the feeling of being a free agent; leading to persistent or recurrent mental health problems. This doesn't necessarily mean giving up masking completely. Not everyone will accept it easily, so I'm selective about how far I let the mask drop and with whom. The important thing is to realise that masking is a choice; just one coping strategy among many, maybe for use when it is to your advantage, but always taking into account the cost.

I've been pleasantly surprised by how many people will accept me stimming, not forcing eye-contact, asking for more time to answer questions, taking "time-outs" from social occasions, etc. once I explained how it's beneficial for everyone involved if my brain is performing at its best and I'm not crashing into a state where I'm no use for anything every few years. Being more openly "autistic" helps to manage other people's expectations a bit, too; for example, friends don't get uppity with me so much now for bowing out of social occasions, because they accept that I don't mean any insult by it, and that socialising is just something that I have to do in moderation so that I can manage my energy levels.

This is easier said than done, and I found it very frightening at first, as I was so conditioned to feel that my mask was totally essential - but I've found that the benefits outweigh the disadvantages overall.


Thanks for your comment, Trogluddite. I find your advice about masking very interesting, because I have thought about giving up pretending to be NT completely. I don't dare to do that, because the mask can be of good use in some circumstances. I also fear that people are going to have a hard time with me changing and becoming more 'openly autistic'.

It will not be easy to find a balance between masking/letting my autistic side be visible.
For now, I have little ability to mask because my lack of energy, but you made me reconsider to drop my mask entirely even when recovered.

Even small things like covering my ears when an obnoxiously loud motorcycle passes are a huge defence mechanism against energy depletion, but look not normal, so I always have a hard time suppressing my natural tendencies.
The comparison might not be the most accurate, but I sometimes feel like I allow myself to be raped sensory wise, just to appear normal, with all stress and trauma following afterwards...


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JSBACH
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Yesterday, 4:45 pm

ASPartOfMe wrote:
Startrekker had a good idea. Try and get reassessed to a more severe level of autism. The assessment should also be for co morbid conditions. Make sure you get a diagnostic report to make your case for accommodations.


Yeah, I've always valued my privacy, so I haven't shared detailed reports with university, just my diagnosis. Maybe a recent (diagnosis was made around the age of eight) detailed report by my psychiatrist can open some doors to help I can't get right now!


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StarTrekker
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Yesterday, 7:28 pm

Quote:
Thanks for your comment, Trogluddite. I find your advice about masking very interesting, because I have thought about giving up pretending to be NT completely. I don't dare to do that, because the mask can be of good use in some circumstances. I also fear that people are going to have a hard time with me changing and becoming more 'openly autistic'.

It will not be easy to find a balance between masking/letting my autistic side be visible.
For now, I have little ability to mask because my lack of energy, but you made me reconsider to drop my mask entirely even when recovered.

Even small things like covering my ears when an obnoxiously loud motorcycle passes are a huge defence mechanism against energy depletion, but look not normal, so I always have a hard time suppressing my natural tendencies.
The comparison might not be the most accurate, but I sometimes feel like I allow myself to be raped sensory wise, just to appear normal, with all stress and trauma following afterwards...


It took me a while, but I’ve learned in the past six months or so that I have to do what’s right for me and ignore what everyone else says. For me, that meant accepting the fact that just because I can talk normally, doesn’t mean I always have the energy to, and it doesn’t mean I’m required to. These days I’m voluntarily semi verbal; I speak when I want to, and write or type on my iPad when I don’t. Everyone I know has been great about it so far, and it saves me a tremendous amount of energy.

If you decide that dropping your mask is in your best interest, I would suggest doing it and see what happens.


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Diagnosed with ASD level 1 on the 10th of April, 2014
Rediagnosed with ASD level 2 on the 4th of May, 2019
Thanks to Olympiadis for my fantastic avatar!