Psychiatric pills or mental hospital - Is that all?

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existentialterror
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02 Apr 2015, 3:40 pm

As a US citizen, I get the distinct sense that the only resource left for us adult "high functioning" autistics or Aspies is ...

A). Psychiatric drugs

B). Short stay in a mental ward

Many of us are alone. Feel alone in the world. Have no advocate.

When a life crisis comes, some of us do not have the tools to cope. We are simply overwhelmed by it all. I only speak for myself here and no one else.

I've looked for resources for adult autistics and come up dry. Anything that exists seems to have a super long waiting list. Impractical, in terms of supply vs the population that needs it. There are too many of us and too few resources.

I've been in the mental health system, trying to get help. However, the distinct sense that I get is that there is no real help out there. Maybe a 45 minute counseling session. Psych drugs (I'm on a cocktail of them and do not enjoy the numerous side effects)..... Then, if things get really bad, a brief stay in a psych ward.

There is too little help out there. Oh, and then, the occasional suggestion to volunteer or join a club.

Nothing really is enough for the overwhelming problems I face, both now and in the future.

To broach this topic is to almost seem like I don't want help. The casual observer will probably think so, particularly if I explain that I keep failing in social situations. The depression is suffocating, the anxiety out of control. I simply need more help to cope!

What helps: Advocacy, a real sense of community

What is available: More psych drugs, brief stay in psych unit if things get really bad...... THAT IS THE BOTTOM LINE. When trying to find real help, that is what is available for adult autistics.

Do you have the same problem, finding issues overwhelming and not much help beyond psych drugs and whatever other band-Aid is the flavor of the day?

p.s. I have gotten some help from various resources and do appreciate the help that does exist but still need help with the aloneness, the overwhelming nature of life itself.....



GoofyGreatDane
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02 Apr 2015, 4:20 pm

Well there just isn't any treatment for ASD- except for co-morbid conditions or extreme aggression/irritability. When I was in college (university ), they had good resources for people with Asperger syndrome- free group therapies and individual counseling. It was a lot better than any groups I had been to before college(as a teenager). Because everyone was on the same functioning level and had similar issues on the same campus. Huge demographic difference between the college groups and the groups I went to as a teenager.

But you are right- there isn't a lot of resources for adults. There is just far more demand for autism therapies for children.



Alienhybrid
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02 Apr 2015, 4:40 pm

Dont take it personally. Medical care is rubbish for nearly everyone, except injuries.
Use alternative resources for diseases and disorders.


Cancer benefits greatly from intravenous vitamin C, but is not recognized at government levels, anywhere.
Paracetamol for lower back pain worsens the problem.... so most treatments are bollocks.

My doctor once said to me: going to a doctor when you are unwell is not a good idea! :!:
It really is wise to avoid the industry if you can.



kicker
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02 Apr 2015, 5:11 pm

I honestly can't tell if this thread was created as a rant or seriously asking for help. I'm going under the assumption that you are looking for help.

Ok, so there is a lack of adult services for autism where you are. What would you specifically hope to gain from such services? Make a specific list, don't use general ideas (ie to get help coping). Specific ideas would be like, 'to better understand how to balance my checkbook.' (Just an example)

Once you have finished that step come back and give a couple off your list that you feel comfortable with sharing or even the whole list again what you are comfortable with. Then we will talk more about where to go from there if you seriously want help. If not just ignore me.



will@rd
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02 Apr 2015, 5:37 pm

First, why are you taking these drug cocktails? There is no medication effective for autism. In fact, some SSRI medications are more likely to cause side effects in brains with autism. Several of the comorbids, like anxiety, depression and sleep issues can be treated with natural supplements, such as chamomile and/or valerian root (anxiety), melatonin (sleep) and tumeric (depression).

I really don't see what good any stay in a psych ward would do. They'll just pump you full of more drugs.

There is Social Security Disability (though you may not qualify for that until you're over 50), and Medicare covers some treatment options, but not completely.

However, you are absolutely correct that there is no advocacy system in place for adults with autism. The organizations set up to deal with handicaps, disabilities and discrimination have no clue how to deal with or help adults with autism. As the current generation of autistic teens age into adulthood, that will probably change, but that's no help to those of us who need assistance now.

I completely get your frustration, and I've gotten the same lame suggestions to volunteer or join a support group (I'm really not interested in listening to the droning of drug and gambling addicts), and as comforting as solitude is, one can overdose on it after a while. A truly effective advocate would help autistic adults find and keep employment and organize social and support groups specific to those with autism, but nobody is doing that.


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The_Walrus
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02 Apr 2015, 5:54 pm

Alienhybrid wrote:
Dont take it personally. Medical care is rubbish for nearly everyone, except injuries.
Use alternative resources for diseases and disorders.


Cancer benefits greatly from intravenous vitamin C, but is not recognized at government levels, anywhere.
Paracetamol for lower back pain worsens the problem.... so most treatments are bollocks.

My doctor once said to me: going to a doctor when you are unwell is not a good idea! :!:
It really is wise to avoid the industry if you can.

I would just like to point out that this is mostly bollocks. If you have cancer, for goodness sake, seek medical treatment.

There is some preliminary evidence that Vitamin C might sometimes provide some benefits in cancer treatment when administered alongside chemotherapy drugs (Fritz et al., DOI: 10.1177/1534735414534463), but it is far from established that it is a "great benefit". The reason it is not recognised at government level anywhere is that there are still only 2 studies indicating that, and the meta-analysis was only conducted in summer last year.

There have been occasions when taking medication was not a good idea, but in general, mainstream medicine provides your best hope of overcoming an illness.



existentialterror
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04 Apr 2015, 3:54 pm

kicker wrote:
Ok, so there is a lack of adult services for autism where you are. What would you specifically hope to gain from such services? Make a specific list, don't use general ideas (ie to get help coping). Specific ideas would be like, 'to better understand how to balance my checkbook.' (Just an example)

Once you have finished that step come back and give a couple off your list that you feel comfortable with sharing or even the whole list again what you are comfortable with. Then we will talk more about where to go from there if you seriously want help. If not just ignore me.


Here is a start:

-Someone who can help deal with bureaucracies (e.g. call them on my behalf when I have trouble explaining what I need or get overly emotional). Example: There is a dispute on a medical bill, and rather than running into a brick wall babbling incoherently why I disagree with their amount, someone else can resolve it on my behalf. (Note: If the mediator agrees with the billing office, I will handle it much better if they explain it to me, slowly and simply, rather than hearing a bureaucrat rattle it off in rapid fashion.)

In short, my auditory processing difficulties make it nearly impossible to digest what people say over the phone or follow their instructions.

-Someone who can help mediate in the event of a personal conflict (example: difficulties with a landlord). Am very amenable to compromise in any situation, but sometimes my manner makes it difficult to be understood. Would much rather a 3rd party explain things rather than a conflict getting out of hand. This could also apply in family situations.

-Someone to help navigate the complexities of daily living (example: home repairs). Sometimes I need something as simple as a person strong enough to lift something if I'm unable to lift it myself. Most people with a support network have this covered. They don't have to lug a huge item from a store and assemble it themselves. Simple things I need help with because I get confused easily. (The alternative is paying hundreds of $$ -- often more than the cost of the item itself -- for a store employee to do all of the above.) Not to mention, having to choose between unscrupulous companies or sort out loads of conflicting information online because I don't have a support network to bounce ideas off of (sheesh, what an awkward sentence, sorry.... )

The above is not everything... A couple of hours a week would accomplish most of it. (Where I live, I don't have access to a case manager or anything like that )



existentialterror
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04 Apr 2015, 4:06 pm

will@rd wrote:
First, why are you taking these drug cocktails? There is no medication effective for autism. In fact, some SSRI medications are more likely to cause side effects in brains with autism. Several of the comorbids, like anxiety, depression and sleep issues can be treated with natural supplements, such as chamomile and/or valerian root (anxiety), melatonin (sleep) and tumeric (depression).

I really don't see what good any stay in a psych ward would do. They'll just pump you full of more drugs.

There is Social Security Disability (though you may not qualify for that until you're over 50), and Medicare covers some treatment options, but not completely.

However, you are absolutely correct that there is no advocacy system in place for adults with autism. The organizations set up to deal with handicaps, disabilities and discrimination have no clue how to deal with or help adults with autism. As the current generation of autistic teens age into adulthood, that will probably change, but that's no help to those of us who need assistance now.

I completely get your frustration, and I've gotten the same lame suggestions to volunteer or join a support group (I'm really not interested in listening to the droning of drug and gambling addicts), and as comforting as solitude is, one can overdose on it after a while. A truly effective advocate would help autistic adults find and keep employment and organize social and support groups specific to those with autism, but nobody is doing that.


I got stuck on the psych drugs a long time ago and have been on them for so long that I'm pretty much dependent :(

I tried support groups but found the transportation to and from them so stressful (bus) that it eradicated the benefit. They hold so many of them at night, and it is stressful taking public transportation in the late evening and walking in a dark area alone. Made a valiant effort but was never quite able to make social connections...



Scaevitas
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04 Apr 2015, 4:14 pm

Mmm, psych ward visitations. Those are the best, especially when they're involuntary! Or in the state of Florida, it'd be otherwise be known as the Baker-act!

Just say the magic words: I feel suicidal.

Bye-bye Rights.



kicker
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04 Apr 2015, 5:10 pm

existentialterror wrote:
kicker wrote:
Ok, so there is a lack of adult services for autism where you are. What would you specifically hope to gain from such services? Make a specific list, don't use general ideas (ie to get help coping). Specific ideas would be like, 'to better understand how to balance my checkbook.' (Just an example)

Once you have finished that step come back and give a couple off your list that you feel comfortable with sharing or even the whole list again what you are comfortable with. Then we will talk more about where to go from there if you seriously want help. If not just ignore me.


Here is a start:

-Someone who can help deal with bureaucracies (e.g. call them on my behalf when I have trouble explaining what I need or get overly emotional). Example: There is a dispute on a medical bill, and rather than running into a brick wall babbling incoherently why I disagree with their amount, someone else can resolve it on my behalf. (Note: If the mediator agrees with the billing office, I will handle it much better if they explain it to me, slowly and simply, rather than hearing a bureaucrat rattle it off in rapid fashion.)

In short, my auditory processing difficulties make it nearly impossible to digest what people say over the phone or follow their instructions.

-Someone who can help mediate in the event of a personal conflict (example: difficulties with a landlord). Am very amenable to compromise in any situation, but sometimes my manner makes it difficult to be understood. Would much rather a 3rd party explain things rather than a conflict getting out of hand. This could also apply in family situations.

-Someone to help navigate the complexities of daily living (example: home repairs). Sometimes I need something as simple as a person strong enough to lift something if I'm unable to lift it myself. Most people with a support network have this covered. They don't have to lug a huge item from a store and assemble it themselves. Simple things I need help with because I get confused easily. (The alternative is paying hundreds of $$ -- often more than the cost of the item itself -- for a store employee to do all of the above.) Not to mention, having to choose between unscrupulous companies or sort out loads of conflicting information online because I don't have a support network to bounce ideas off of (sheesh, what an awkward sentence, sorry.... )

The above is not everything... A couple of hours a week would accomplish most of it. (Where I live, I don't have access to a case manager or anything like that )


Take your list that you made and on a new piece of paper make a chart. Hold the paper so it's wider than it is tall. Number your list if it isn't already and place the same numbers down the left side of your new paper. On the top of that page write the following titles, 'daily, weekly, monthly, bi-monthly, quarterly, bi-annually, annually, rarely'. Make it easy to read, use a ruler to draw lines or do it all on the computer using a spread sheet program. (There are a number of free spreadsheet programs available for download OpenOffice is a good one.)

Mark how frequently those problems come up, be honest. When you are finished write a new list of the problems that come up daily and weekly. Separating them as such daily problems, weekly problems.

When you have that list look them over. Which ones have you found solutions around already. It could have been difficult or time consuming, but you found a way to work through them. Put a check mark next to those and see how many you have left. The ones you have left are the areas you need help with as opposed to would like help with.

Now, the ones that are left, are there specific resources that might be able to help with those or strategies that could be used to make them easier? For example talking to a bill collector, could you tell them you have difficultly communicating over the phone and ask for an email or mailing address to correspond to? Or could you make a list before contacting them about a bill with specific questions on a paper that leaves room for you to write the answers and or instructions? Are there patient advocate or consumer advocate groups you can call to get advice or even be a mediator for you?

Share you list with someone you are familiar with and ask them how they dealt with those specific issues. they may have suggestions you haven't thought of or even be willing to help you with that specific task.



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04 Apr 2015, 5:34 pm

...I spent my 21st birthday in a state mental hospital and was stuffed full of pills and the f*****s there said (One did , anyway .) I was " fit for nothing but being on a back ward for the rest of my life " and , even after getting out , I was put in bins frequently (I a state where the legal standard for involuntary commitment was far more lenient ~ 2 out of 50 ~ than the other 48 and I HATE ALL PSYCHATRISTS ! :cry: f**k 'em ! !! !! !! !! !! !! !! !! !! !! (Okay , maybe an occasional good one can slip through .)



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04 Apr 2015, 7:09 pm

I'm on medication too. May stop taking them one day, but not now. I'm not stable enough.
But it sounds like you need a social worker. Even if the helper isn't specifically trained in dealing with autistic people, s/he could still be of use.



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04 Apr 2015, 9:58 pm

Honestly the help available is dependent on your state.

If you live in the North East, you are best off for treatments for mental and the like.
If you live on the West Coast, you are second best.

Every where else is none or very little...


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04 Apr 2015, 11:15 pm

xenocity wrote:
Honestly the help available is dependent on your state.

If you live in the North East, you are best off for treatments for mental and the like.
If you live on the West Coast, you are second best.

Every where else is none or very little...


There is nothing for my husband, and we live in the MidWest. NOTHING. Unless you are so bad you wind up in a group home.

My husband has the same sort problems the OP has. I get burnt out fighting all his battles.

Everything (even private pay) is geared to 18 and under if it is Aspergers therapy wise.



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05 Apr 2015, 4:34 am

I've had this same problem my entire life and continue to have it in my mid 20s. There's just no support or understanding out there short of peer support from other autistics.. therapists usually just consult some manual and try the best they can. As a teenager I had all sorts of nonsensical anti-psychotics and anti depressants shoved in my face that I never needed or never should have been taking, because they just don't know how to handle asperger's syndrome.


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05 Apr 2015, 4:46 am

I was put in a secure unit several times when I was a teeanger / younger adult, because my challenging behavior was mistaken for psychosis. I had psychosis, I have psychosis still, but I am not violent as a result of psychosis. Last time I was sectioned under the Mental Health Act, I had four police officers restrain me. As they were trying to get me on the ground, I punched one of them and kicked another while thrashing about violently. It was challenging behaviour in response to sensory overload (the officers were grabbing me and shouting at me, as well as threatening to hit me - which I later formally complained about) and I just wanted them to let me go and leave me to calm down. I was put in a secure unit for several weeks.

I've had 17 psych ward admissions in 8 years. Psych wards are just a holding pen. I am under the NHS which has saved my life several times over, but psych wards are AWFUL places to be in. There were some nurses who were really good and respected and liked me; they tried to help. But there were so many crap nurses, and the patients were annoying, like peeing on the floor outside my room, or defaecating in the sink, or stripping naked in the corridor.

Three years ago I promised myself I'd never go back to a secure unit or a psych ward, and three years on I haven't had a single admission due to extreme determination and frequent appointments with my psychiatrist.

I pay for my autism support though. 90% of my income support benefits go to fees for my support workers. They're really good at their job though. I have DLA benefits left over to live on. But my dad often has to help me financially.

I am applying for direct payments to get support from the council Autism Services though. See what happens.


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