Feeling Desperate

Post Reply New Topic

I'm not sure I should be here, at this point. WP tends to make me feel worse a lot of the time, not better as I've long hoped it would. The positive interactions are the exception rather than the rule. I feel alienated from other aspies as much as I do from NTs. I actually prefer the company of NTs about 95% of the time.

Mainly though, I just can't find the help I need from anyone regardless of "neurotype".

Aspies will tell me I'm just "different", not in some way defective... an idea I could not disagree with more strongly and which would bring me no relief if it was true. In this regard I don't feel like my views and my feelings are really acknowledged by most other autistic people and on the occasions when they are it's a bit of a dead end that doesn't lead to solutions or useful advice. Other times, I'll be told to make use of my autistic "strengths" (which I don't believe I have) or to be glad for the "positives" (which I either don't experience or find utterly useless).

I don't give a s**t if someone else views their autism as a problem or a defect. But mine is, ok? I want solutions or workarounds for it. I don't want to feel empowered, or have it upsold, or look for a silver lining. None of that is useful, or helpful, or makes me feel any better. It just makes me feel trapped, hopeless and desperate.

The handful of NTs who know about or even suspect I'm autistic are no better. A lot of them act like I could just sort of snap out of it using methods that are only effective for NTs or believe me to be far more competent than I actually am because of my habitual, 24/7 maintenance of a very convincing "mask" which I can only drop around one person on this entire planet. Other times they just try to sell me the same feel-good crap I mentioned above.

What I need is help that uses a problem/solution approach. That doesn't try to make me feel better about being autistic but goes "here are the difficulties this causes you, here are ways you in particular can deal with them." It's damn near impossible to find this.

I'm really starting to feel hopeless at this point, like nobody can help me. It's extremely hard to find suggestions for therapies, treatments or medications. I'd let people slice open my brain for even a slim chance of some marginal improvement. I don't care one iota about risks or side effects.

Occasionally I'll find a glimmer of hope for something that may work only to find a dead end (I've got a few leads from people on here but have had trouble following them up). I can barely relate to anybody in a useful way. Even when I'm in a good mood, even when I'm in a great mood I feel like I'm just waiting to die at this point. Like I'm just distracting myself.

I'm so, so tired of people trying to make me "cheer up" or "be myself" without offering anything of substance. This desperation is starting to carry over into my everyday life where often it feels like I'm falling apart and I'm just one little push from a complete collapse.

Might be time for a hospital intake? I considered it when I felt burned out...

Hi AJisHere,

You are asking for help, for solutions to problems. "Help" is a very vague and general term. If you could give a specific or three on something we might be able to help with, maybe some of us could brainstorm some ideas together with you.

Meanwhile, on the lighter side, you made me think of this:



Anyways, I hope you will feel better soon.

I don't think I'm at that point yet. I don't know what I'll do if I get there, I really can't afford it. Unfortunately it would just be a temporary fix anyway.



Thanks. In some areas I'm doing better than ever, but in others my struggles only get worse. My mood has picked up overall in recent months but my stress level is getting pretty extreme at the same time.

In terms of help, the main thing I'm interested in are therapies, treatments (including experimental ones) and medications that address autistic symptoms. I guess some support groups that have a much less celebratory attitude towards ASD and are for very high functioning individuals might help but I am supremely pessimistic about that.

The one specific symptom I can pick out from this, even if it's a secondary symptom, is your stress level.

Here are a couple of things that have helped me:

Therapy:

Massage Therapy -- Yes, this does cost money, and some people would see it as "pampering" or a "luxury." That said, it works for me, when I've got the money. Even if you can only go for a half hour session. Highly recommend.

Treatment:

* Epsom Salt Bath --- Much cheaper than a massage, and still good. In fact, I've discovered while washing my face with a mixture of epsom salts and water to help with a skin condition I have, that the epsom salts lift my mood, make me feel relaxed and happier, and even help combat headaches. A word of caution on washing your face with epsom salts ... careful not to get any in your eyes ... it really stings. Epsom salts contain magnesium and sulfite, and I've read that autistics need more of both these minerals.

* Walking in Nature --- Yes, going around the block counts. At least a half hour a day is a good idea if you can. Running or other exercise, yes, of course! Best in the great outdoors.

Medications:

I actually try to stay away from modern medicine. That said, you can do a whole lot to improve your stress levels through the nonglamorous means of eating right ... there's an old quote that says "Let food be your medicine." Some good things to increase in your diet:

* Magnesium
* B vitamins
* Vitamin D
* Selenium

Vitamins and minerals in food form are best.

Hope this helps.

AJ, I'm sorry, I don't know you well enough or your problems and issues, to make any suggestions about therapies.

It seems you have been caught up in the wringer of "politically correct" attitudes about autism as they may from time to time be expressed here. I try to stay away from the politics when it comes to anything that affects me. When people are doctrinaire or fixed in their perceptions regardless of reality, I see little benefit to coming between them and their beliefs.

I am one who acknowledges that autistic perceptions and behaviors in a neurotypical world will normally cause problems for the autistic. And you are clearly stating that such is true for you.

I have an autistic daughter in her late 20s, on SSI. She is struggling with feeling like she's a contributing member of society even if she can't work. Also, she is working all the time on reducing the negative effects of her symptoms. She has found a social worker who can help her with things like paperwork and phone calls to get into various programs. She also recently started therapy with someone she can see long term on her Medicaid. These two connections seem to be very helpful to her.

I see you're in Washington state, is that in Seattle by any chance? It might be good to become a client of one of the community mental health centers. They should be able to help you with the sorts of things my daughter's social worker and therapist help her with. If autistm is not a sufficient diagnosis, then use the anxiety and depression you seem to be feeling and which are no doubt related to your autism problems.

If you will write more detail in this thread, I will try to give you more suggestions about actually having more success at this puzzle we call life. Thanks, and take care.

And if you are in Seattle, are you aware of UW's Adult Autism Clinic?

http://www.uwmedicine.org/locations/adult-autism

or this



jk

i think that the very illusion that there is any kind of "autistic community" that automatically implies mutual and helpful assistance between members is very damaging in itself. it's like every week there's at least one new thread here talking about how this site is only making the op feel more alienated. for four years after i created my account, i didn't even post here, because all i could think when i tried to look for a place to start posting here was "i'm not one of them", while there seemed to be a prevailing sentiment that autism is something you're supposed to identify with and be proud of. i felt like i was going to be judged for not identifying. so i didn't post. what finally "encouraged" me to start posting here was the slow death of the other site where i used to post

i'm not ashamed of any of my diagnoses, but i'm not proud of them either. it gives me the creeps when people declare how they're proud of it and how it makes them "special". to me that's deep denial. focusing too much on problems is no good, but denying that they exist to begin with is at least as bad. it becomes projection. "it's society who makes life difficult for me, i'm not the problem". who cares. it makes no real difference, and the only thing that that kind of attitude accomplishes is drawing attention. attention and pity and contempt. it makes sense to be proud of things you accomplish despite difficulties you face, but you can only be proud of those things if you acknowledge that the difficulties are there in the first place

i think that this all-rainbows "autistic community" kind of sentiment didn't develop organically. the natural thing would be for the opposite thing to happen instead (people getting more depressed about the condition than they were before). i think this sentiment became common not because of people who felt like they genuinely benefitted from help they got from "fellow aspies" (i.e.: people who are helpful because they're autistic), but because of people who are more concerned with receiving attention and legitimizing their status as victims-of-society than with finding any real solutions for anything. they feed on others following their lead, so they're pretty vocal about it, and it spreads like a guilt-tripping virus

@Anagram: Maybe. I just know there's a non-zero chance that I'm going to go off on the next person here who tells me I should feel good about having autism. I am an extremely patient man but my patience for it is now very thin and I don't have much stake at all in this community so there's not much holding me back.

@the_phoenix: Thank you for the tips. While none of that will solve my problems, but they would certainly soothe the stress that comes from them and there's a lot to be said for that. I can't afford massage at all, but especially with my work schedule this week a nice long epsom salt soak sounds amazing.

I'm trying to improve my diet, it's just hard when my schedule is so insane. Shift work sucks. I'm much, much more inclined to be involved with modern medicine than you seem to be but it's certainly a good thing to eat well.

@BeaArthur: Yeah... my Haven posts are often a bit ranty.

The "politically correct" (we'll go with that even though I think the term is stupid) attitudes here do get to me and tend to make me feel very alone and alienated on WP, or in most autistic communities. Very few people seem to even be able to comprehend this. This is very depressing and discouraging and to me it is a strong argument for no longer coming here.

I know what your daughter must be feeling. It's kind of the situation I had for many years. Some people helped, but most of the time they were pretty useless to me. Their services were often geared towards people lower-functioning than me. They didn't know what to do with someone who is able to seem so close to NT without actually being able to achieve his goals or meet his needs in the world.

I've had therapists. Most have been of minimal use and my last one called me one of the most frustrating patients he ever had. While we had an amicable relationship we both agreed that there was no point in continued treatment from him and he did not know anyone who would be suitable for me. I'm working on getting a therapist right now but strongly suspect it will be a long process. I'm going to end up going through lots of them before getting to one who can acknowledge my problems and start working on solutions instead of giving me all this feel-good BS.

Getting my shrink to prescribe the correct medications to get me where I'd like to be is going to take time, too. I imagine the end result is going to be a fistful of pills on a daily basis. I'm taking something for depression right now... I'm not on any anti-anxiety meds, anti-psychotics or stimulants. I think there's a good chance I need all of those.

Really, my main problem is that I am a person who cares very, very deeply about other people... about the world and everyone in it. To be "cut off" from these people by an inability to interact with them and perceive them in a normal way is a very cruel joke played on me by nature. An autistic way of thinking doesn't help much either. I am interested in anything... anything that could help me function in a more NT way in social situations. This is not a matter of how others perceive me, but of my own experiences. I have read about some experimental treatments that may be able to restore something resembling normal social function in autistic persons but concrete information on them is almost impossible to locate. It's always just "we did a study, this maybe works, THE END."

I am not kidding when I said I'd totally be down for having scientists and doctors cut up my brain to try and change things for me. If for example I heard of an experimental study for some potentially dangerous treatment I'd rush to sign up. With autism comes a strong pull towards egocentricism and isolation but those things make me feel horrible. They offend me to my very core. The social behaviors autism inclines me towards are in my eyes a moral failing. I will fight them to my dying breath.

Autism is a very poor fit for my personality, values, needs and desires and I have to fight it. I will start to break down and fall apart if I ever stop. I know, I've done it.

Executive function is a secondary issue. I haven't had anyone really every approach the issue with the consideration that I'm autistic, except people with a bile-producingly celebratory attitude towards autism. The "politically correct" ones I resent so deeply. It doesn't much help that I have no special interest (thank god!) but that my f**ked-up neurology compensates by making me behave in an obsessive-compulsive manner. Altogether it's a very unpleasant combination for someone who is highly ambitious and wants to get s**t done!

If you have more specific questions it will help me give you more detail.

I haven't! Thank you so much, I'll check it out.

That was helpful. I'm going to offer an interpretation of what I see in your posts, and if this is upsetting or flat-out wrong, please forgive.

It seems to me that you view things in a fairly black-and-white way, fairly all-or-nothing. This is a cognitive style that can be modified, and I think if you do, you will see rays of sunshine coming through the gloom. Following those rays can lead you to a happier and more successful outcome. This cognitive style is common in people with depression and also common in autism.

I think that you can achieve much greater success in therapy by stating your needs and goals at the outset and throughout. If you believe the patient/client's role is to passively follow the therapist's lead, you will necessarily be discouraged when the therapist chooses a wrong fork in the road. Similarly, if the therapist attempts to offer you support such as by complimenting something you've done or suggesting you find ways to benefit from an autistic trait, it's okay to actually discuss how that therapy technique makes you feel. In fact, with much discouragement from your past therapy, I'd say analyzing the therapist/client interaction in your sessions will be very beneficial. But the main thing to do is state your aims in therapy, such as improving your interactions with others, modifying your autism symptoms to deal better with stresses, etc.

It can be hard to find a social worker if you don't fit into an organization's criteria for assigning one. My daughter sees someone who is with the county and has no required target client. See what that Adult Autism Clinic can do for setting you up with a helper.

Gotta go, but I'll be back later.

I hope the interactions between you and I have been positive.

The others are offering excellent suggestions.

My suggestion: Be cool with yourself.

I'm not at all certain that just about everybody shares the pride in autism. In recently saw a thread here where someone compared it to diabetes, saying that being either proud or ashamed of it is absurd, which is pretty much the way I think about it too.

And yeah, I do understand your frustration. I'm getting better at avoiding the all-or-nothing attitude. I try to remember that doing something is always better than doing nothing. Some days are good, some bad.

I think most of my successes in life have come from a deep frustration caused by the feeling that something is holding me back. I hate being told I can't do something. There is a way to use anger positively, and I guess, like a lot of people on WP, you've got deep resources of anger.

I've had some success with an internet based therapy program for adhd. It addresses some executive function problems, giving me some tools to understand how I function best. Is adhd relevant for you? It doesn't exist in English, but maybe there is some English-language equivalent?

Agreed. I hate it, yeah... I'm not ashamed of it though.



I have a lot of anger, but no release for it. So it kind of just burns inside me and slowly dissipates but never really gets a chance to go away before something stokes the flames again. I don't know if I have ADD/ADHD but it's very likely. I'm having some assessments done to find out.



I'd say they've been positive. You have a different outlook than I do but you've been very respectful of my views even when they disagree with yours and do your utmost to help me and others as well. I really appreciate that. If it was more common here I'd be a bit more comfortable on WP. This community is fortunate to have you!

As for being cool with myself, I'm trying but I don't know the guy very well.



I try not to, and I've gotten better at this... but in some cases when I manage to look at things in a more nuanced light they slam headfirst into deeply held values and needs. Core parts of my identity are tied up in some of what I've expressed here. Viewing autism in a negative light is certainly one of them and attempts to do otherwise seem to trigger severe depressive episodes. There are a lot of positive things in my life. A lot of things have gotten better for me or have been successes. I can easily acknowledge all of those, but they do not meet all my needs. They don't really make me feel much better; it's more like they stop me from getting worse.

I am very curious what in my posts led you to this observation. I see some things that stand out but we could get something useful out of talking about it.

Totally agree with you on talking with a therapist about that stuff. I'll be sure to do that in the future! Going to check out the UW clinic too, but I don't know yet if my insurance will cover it. If not, it's likely not an option for now but it's absolutely worth investigating.

Hi, AJ.

I can't really do cognitive therapy with you on the Internet, but you asked for some examples of extreme cognitive style I saw in your posts. I don't want to bowl you over with how pervasive this is so I will just mention a few:

I would like to suggest that you begin to keep a list of the neurological and behavioral things that are problems for you and that you want help to overcome. Some of these may be obvious to you, and others may not. An example of the latter is that when people kindly offer you some words of hope or encouragement, rather than appreciating that they are trying to reach out to you, you reject their caring. In this way, you decrease the chance of a meaningful connection. My husband often tells me I'm beautiful, something I absolutely don't believe, but I'm glad he says it! Do you see how even if you disagree with the factual content of a statement, you can still feel reassured that someone took the time and effort to try to comfort you?

Right on, Bea. I can see where you'd get that impression and you're not wrong about a lot of that. Some of the more extreme views I have though have held up to stood strong even when examined critically by myself or others. The difficulty I have finding help or any sort of path to it is very real and understandably causing a strong sense of anxiety and desperation.

I do appreciate that people try to help me. So I can graciously accept compliments and be glad people are putting in that effort while at the same time being frustrated that it doesn't actually accomplish anything. I have a strong awareness of many of my cognitive distortions but haven't had much success in dealing with them. In some cases it appears they're not distortions at all but simply a part of my being. My last therapist agreed (after about a year) that I'm far more troubled than I appear; that while some of my more unpleasant thought processes are examples of the sort of distorted black-and-white thinking we're talking about, others have a strong basis in reality and actually make sense in the context of my personality, identity and values. It can be hard to tell which is which except when people try to "cheer me up". The distorted thoughts will settle down when this happens, while thoughts centered around my deeply-held convictions will be offended.

I'm a bit of a mess.

I'm not sure what sort of things I'd put on the list you propose. Could you please clarify that a bit?

aj, i think your personality is probably more malleable than you realize, without having to compromise your values. maybe that's the bottleneck you face when you try to improve your general condition. if you can isolate your values and then analyze, on an ongoing basis, all your behavior and your personality specifically as it relates to your values, you can probably make progress. that's what i would do in therapy if i were in your shoes

there's "temperament" on one hand (essentially or nearly biological stuff that you just can't change) and there's "values" on the other hand (which are essentially psychological, but which you can't challenge either without very negative consequences), but "personality" is a construct that emerges from the constant negotiation between one thing and the other. if you can isolate what's "temperament" (not up to you) or "values" (not up to you either), and what's "personality" instead (actually up to you), you can isolate and dissociate features that you identify with but that you don't really need, and then work on letting go of them. that's a major part of how my diagnoses have been helpful to me (adhd/asd = temperament, while the personality disorders i've been diagnosed with are, well... personality. i can't change completely or change overnight, but i can change, as long as i know why and what for i'm trying to change = values)

it's ironic that your therapist told you to your face that you're "one of the most frustrating patients he ever had". with your pragmatic view, it sounds to me like you're one of the rare individuals who can actually benefit from long-term therapy. but then again maybe that was the reason (because he saw the potential, but the bottleneck kept him from helping you explore any of it, so there was expectation but no results = frustration). i think it's safe to say that there is a bottleneck keeping you from finding more balance and consistency in yourself, even if it's not what i'm guessing it is. i think that identifying that bottleneck should be the first priority, before trying any particular treatment or techniques (or maybe only try treatments and techniques with the specific intent of identifying that bottleneck, and stop them as soon as there are signs that they're not helping with that)

Last edited by anagram on 22 Aug 2016, 7:47 pm, edited 2 times in total.