Feeling marginalized

[wanderer03]

I totally know what you mean. I've met with Voc Rehab counselors here too, they tried to get me to do a 95-hour program where I would have been paid like 6.00 an hour and then with no guarantee of permanent employment. It seems like maybe they were just trying to fill some quota or something by pushing that on me. I'm not sure. But when I went there, everyone else was SEVERELY mentally handicapped, it seemed the others there had major mental problems or were just very visibly disabled, so I didn't feel I belonged. I felt it was just beneath me, not to sound harsh. I mean, I am pretty desperate for income, & doing some lame federal program for pennies just doesn't cut it for me. I hate the idea of handouts too, that's against what I want for my life. But yet I feel trapped & don't know how to move forward. There really needs to be a huge effort for more outlets and resources for people with adult autism. Basically since I have mild autism but appear normal, and can interact a minimal amount, most people wouldn't guess there was anything wrong with me. So I don't even fit in amongst the disabled, as bad as that sounds. I don't feel I fit in anywhere, and it's wrecking my mental state. I know I am plenty capable, but I don't have the motivation or tools or a clue about how to go about becoming productive, i.e. getting a job & keeping it. I feel I may need a medication that is a bit more activating because I just feel so lethargic all the time, but then I worry about how I'd get any sleep on it.

That's exactly my problem! I have very narrow criteria for which puts me on the spectrum. I don't appear outwardly "disabled." It only shows itself in the workplace when I'm presented with multiple tasks, deadlines, and having to work with others as a member of a team. I don't collaborate well and I have difficulty, at times, articulating expectations and navigating the unwritten rules of the workplace. People usually put up with me for about 6 months before it's made clear that it's time for me to move on.

Without my medication I cannot sleep, with my medication I have difficulty with focus. It's a catch 22 situation. I often feel that I don't fit in anywhere either. I don't fit in in the NT world and I don't really fit the Autistic world in the strictest sense. I'm in kind of a pergatory. If it helps, I have some vague idea of where you're coming from.

 

[BlueConundrum]

The Vocational Rehab people here are similar to what Robby describes. Also, they seem to want to push people into customer service jobs. That would be the worst possible thing for me!

Also, Robby, I know it sounds awful to say, but I do know what you mean about being "above" things. I have a master's degree and I've had jobs at big companies! It's a huge blow to the ego to work your way to a place and then have it implied that you should step down.

Datura,
Agh, that sounds so frustrating! That is one of my worst fears, actually. I was homeless prior to being on SSDI (which I think helped my case, honestly), and it took me almost four years to find stable housing, and frankly, it's not that stable. I'm terrified that I will one day go completely off assistance and fend for myself again, but then it all comes crumbling down and I end up in another homeless shelter worrying about getting stabbed in the bathroom.


Is the ability to focus on only one thing at once an Asperger's thing? It drives me bonkers when people try to talk to me when I'm doing anything, even if it's something that requires virtually no concentration. I play online video games sometimes, and I get annoyed when people talk too much while I'm trying to drive in-game or whatever. I took an art class and this woman would sit next to me and talk and draw at the same time, and I felt pressured to stop drawing and listen to her prattle because I didn't want to tell her to shut up. I just get very distracted by what's going on around me and I can only focus on one thing.

 

[wanderer03]

Voc Rehab offices are not set up to help people with autism. They are set up to help ex-offenders, people with physical disabilities, and people with severe mental handicaps like Down's Syndrome and much lower functioning people on the spectrum. What really got me pissed off was reading about Voc Rehab's success artificially raised my hopes that they might be able to help me.

 

[Robby]

I don't think I'll end up using Voc Rehab for actual employment. When I went to their class a few months back, the only other people there were extremely handicapped people & thuggish-looking ex-convicts. I felt very out of place. The guy tried to convince me to do this 95-hour program, where I would be working basically cleaning toilets in a nursing home, & being paid like 6.00 an hour. That's ridiculous. So I didn't go. The problem is I have basically no resume & I don't know where to turn. Once I get an interview I am a decent interviewer, but then I am scared of being judged or bullied in the workplace. I feel trapped in my head by my thoughts & my apprehensions. I have no self esteem. I'm crying a lot for no reason. I hate feeling helpless. I know I am a smart person but I have no skills or work history. People should really be reprimanded for bullying in high school. I was bullied severely and it is extremely damaging to a person, especially someone with autism. I have major ptsd from it. I can't forget what was done to me. I can't trust anyone. In the meantime I don't know what to do. My biggest fear is that once I have a job someone there will say a derogatory comment or try to bully me, & I don't think I could handle that, seriously. I feel stuck. I can't even bring myself to take the medication the doctor gave me, because I am scared of side effects. For some reason I am scared to take anti depressants. But I am staying up all night crying & I feel so depressed & useless.

 

[wanderer03]

Robby Please take your medication and put trust in your doctor. He or she is not out to bully you. It sounds like you're suffering from depression and medication does help. I've been diagnosed as having major depressive disorder with anxiety. Medication restored me to the point where at least I don't feel like crying all of the time anymore. It's given me back a little fighting spirit. By not taking the medication prescribed, you make it harder to get out of the cycle. The side effects suck, I'm not going to lie to you, but the alternative is worse. My medicines are heavily sedating so I take them at night. I wake up feeling a bit groggy and it's unpleasant but tolerable.

These medicines do take about 4-6 weeks to reach therapeutic effect so be patient. I've been on my drug cocktail now for about four weeks and the improvement is very slow, agonizingly so. On the upshot, I finally got a start date on my little part-time shopping cart herder job - it only pays 9.00 per hour and it's 32 hours or less per week but I figure it isn't hopeless. I'll probably make around 250.00 or so per week which is chump change but at least I get a routing.

 

[Robby]

I like my doctor. I trust him, but yet I am scared anyway. I took some meds in the past given by a different doctor & they had really bad side effects. Yesterday & today I am crying all the time I just feel useless & nobody cares. People say they do but they don't. I'm not sleeping at all because I feel so sad I can't close my eyes without crying I just want to stay in bed & hide
May I ask what meds you take wanderer? He gave me Lexapro & Mirtazipine. I haven't touched either yet. The only thing I take is a Xanax & that doesn't stop the sadness I am feeling. I just can't stop crying I want to be a normal productive person but I am just not

 

[wanderer03]

Mirtazipine is generic for Remeron. Remeron is, in a word, good sh*t. I also take Seroquel. Between the two, about 30 minutes after taking them, I'm sleeping like a baby. Remeron is neat in that it's only real side effect is sleepiness in the morning. I can't speak for Lexapro. I challenge you to try taking your meds tonight and see how you sleep. Remeron and Seroquel don't do much for my depression just yet, but hell, at least I get a great night's sleep. The rest of the day may be sh*tty but at least I get sleep.

 

[Robby]

Yea he gave me the Mirtazipine for sleep. I'm just scared to take the two. Do they help make you not to care about what people say about you? Because that's one of my hangups. I don't know if I can bring myself to take them, I want to, but I'm afraid. I just can't stop crying all the time So much going on, feeling useless with the autism, nobody to talk to, missing my aunt, who I was very closed to, & worrying about the future. I know I need to just take the damn pills not sure why anti depressants scare me so much everyone has told me so much about the bad side effects but I am just in so much pain right now. So many emotions.

 

[wanderer03]

There is no miracle drug that will make you not care about what other people say. Remeron will help you be less anxious but it takes time and the effect is not instant. What you will experience right away is sleep. That's all that's important at the moment is sleep, everything else is secondary at the moment. Without sleep, your body and mind function nowhere close to optimally.

I'm sorry about your Aunt. A support system is very important and I can only imagine how you must feel. I go between feeling useless, despair, and feeling angry at the world for making me feel that way.

 

[Robby]

Thanks. I have no support system. No friends. I'm alone. Nobody cares.

 

[wanderer03]

Few care about me but I soldier on. Mostly I deal with it through anger at the world because, at the very least, anger keeps me from being depressed. It makes me move on. I hope one day I will find peace ....

 

[Datura]

Robby, I also reccomend you try your medication. The first antidepressant I was on messed me up, but the second one worked really well, for a time at least. It kind of sucks being a human test tube, but when you find something that works for you it is all worth it. Just be sure to monitor yourself closely. I recommend keeping a journal to identify any emergent patterns (ie. change in number of good vs. bad days, new sensitivites, more frequent headaches, ext.) which you can then discuss with yout GP.

 

[Robby]

They just throw pills at us like lab rats. Nobody understands what being autistic is like they just don't get it I have all this bottles up & can't speak it how I want. I am so scared of anti-depressants I hear people saying they make them nauseous & cause insomnia and stuff. And what about anxiety, do they help that? I take Xanax and it doesn't help anxiety unless I take huge amounts. I guess I'll take a lexapro and see what happens but I can't bring myself to yet. I keep hearing people say they change your brain permanently. I can't stop crying I am just so depressed

 

[BlueConundrum]

I was traumatized by bullying, too, Robby. Even years of therapy hasn't helped. I'm in my 30s and still dealing with junior high nonsense. I have nightmares about it! I also have no self-esteem or support system. I'm not trying to jump onto your problem, but I get it, I do.

I have been on anti-depressants for over 20 years. I've only had minor bad side effects except for with Paxil.

 

[wanderer03]

They just throw pills at us like lab rats. Nobody understands what being autistic is like they just don't get it I have all this bottles up & can't speak it how I want. I am so scared of anti-depressants I hear people saying they make them nauseous & cause insomnia and stuff. And what about anxiety, do they help that? I take Xanax and it doesn't help anxiety unless I take huge amounts. I guess I'll take a lexapro and see what happens but I can't bring myself to yet. I keep hearing people say they change your brain permanently. I can't stop crying I am just so depressed

They don't throw pills at us like lab rats. This I will respectfully disagree on. These medicines aren't designed to treat our underlying condition which is Autism. These medicines are designed to treat depression and anxiety and would be tried with almost anyone suffering those afflictions. There is no known effective treatment for Autism so the docs concentrate on treating the condition that they can, which is the depression and anxiety. On a side note, there are some rumblings about how Marijuana might reduce certain symptoms of depression .... wish I had the citation off of the top of my head.

Our brains and neurochemical makeups are so complex and unique to each person, that Psychiatry is a very inexact science. The doctors literally have to try all kinds of different combinations until both you and doctor come up with the right dose and type of medicine. And when I say a while, I mean a long while. You have to give these medicines 4-6 weeks to reach therapeutic levels. My psychiatrist says that as long as you have no adverse side effects, you have to wait a while for effectiveness. I can tell you that I've been through Lithium, Zoloft, Paxil, Effexor, Prozac, Pamelor, etc. Few of them worked, Prozac worked but one day stopped. I was on Pamelor for two months without positive gain before the doctor pulled me off of it.

 

[Aspergirl4hire]

They don't throw pills at us like lab rats. This I will respectfully disagree on. These medicines aren't designed to treat our underlying condition which is Autism. These medicines are designed to treat depression and anxiety and would be tried with almost anyone suffering those afflictions. There is no known effective treatment for Autism so the docs concentrate on treating the condition that they can, which is the depression and anxiety. On a side note, there are some rumblings about how Marijuana might reduce certain symptoms of depression .... wish I had the citation off of the top of my head.

Our brains and neurochemical makeups are so complex and unique to each person, that Psychiatry is a very inexact science. The doctors literally have to try all kinds of different combinations until both you and doctor come up with the right dose and type of medicine. And when I say a while, I mean a long while. You have to give these medicines 4-6 weeks to reach therapeutic levels. My psychiatrist says that as long as you have no adverse side effects, you have to wait a while for effectiveness. I can tell you that I've been through Lithium, Zoloft, Paxil, Effexor, Prozac, Pamelor, etc. Few of them worked, Prozac worked but one day stopped. I was on Pamelor for two months without positive gain before the doctor pulled me off of it.

I endorse all of the above. I had different "drug path" but my experience was as wanderer03 describes his. Doctors aren't all cookie-cutter either. Some focus and refer, some get stuck treating the same layer without understanding there are more layers. I personally think Asperger's is a root cause of many of its comorbids. If you cared about getting along in the world, how could you not be haunted by anxiety, panic, depression, and "anger issues" born of frustration? Of the brain so many people admire simply not working? Of the bitter mockery of being so smart and "lacking common sense?"

 

[Aspergirl4hire]

I don't really know where I am going to go from here. My counselor at the Pennsylvania Office of Vocational Rehabilitation wants me to pursue SAP's autism program. I'm luke warm about it because it sounds like an affirmative action program. Apparently they have some preferential hiring program for people on the spectrum. I would be happy to even get considered for it because I have nowhere else to go. Hopefully it's single-tasking (mindful) work .... but they say you can hope in one hand, sh*t in the other, and see which gets filled faster. LOL

Affirmative action is not, actually about the "affirmed"...but about causing people who simply can't appreciate the problem from the inside to overlook their knee-jerk reactions. I know you know this, I just felt I had to say it...one of the things I have found true is that at least two employers in my area use the knowledge about "differences and diversity" to accommodate those differences and diversity.

A person told me directly that the reason I am getting so much support, both in technical coaching and in emotional kindness, is that I could articulate what I needed to my boss. And he did his job. Did it well. I don't know what people know, but they know something, and they are responding in ways that are true to themselves and acknowledge what's true about me, too.

"If aspie, then aspie." If you can accommodate my non-negotiable limits, you do see performance spikes beginning immediately. They did, they are, and I'm on track for being hired permanently. By the time they introduce performance metrics, I will have a documented baseline and a plan for adding value--and the credibility to sell it.

It doesn't guarantee my success. Only I can do that. What it does do is give me what I do need: the opportunity.