Mental Health System Nightmare.

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Hi All. Yep I got it ... Aspergers.

I have been in mental health system for over 10 years now. ETA: Have been in and out of system since child - typical misdiagnosed HFA when they did not know what it was back when I was achild) Original Dr. who diagnosed me moved away. For years the system has completely ignored my aspergers. They keep asking if I am hearing voices, manic etc. That is not my problem.

My issue with them is this:

I feel if you treat a client it is common sense that you should have education on their disability - whatever that disability may be.

You can not help any one if you know nothing of the diagnosis.

My mental health system has zero training for any autism spectrum disorder but DOES take clients - children and adults with ASD - I believe they are damaging these children and adults by applying neurotypical treatments that do not work at all with any ASD.

NOTE: I have been housebound most my life and am not super low functioning but not super high functioning. I call myself - lost in the middle of the spectrum -------

I do have autism traits such as headbanging - so I cant say that it is all just a difference with me. I meltdown and at those times I would say its more like autism but then I have other skills that would be maybe seen as aspergers. I am confused by that but that is me.

So I would like help for the not so positive things but it is not there for me. I am 45 years old.

I have tried everything I can think of and even wrote autism sites such as Autism Society Of America and several more. Most don't write back or just give me the run around. I have tried to take DVDs on autism to my mental health system. They simply refuse to watch them. There are no other places anywhere around me that help autitsics or the ones that are there are child based and I do not agree with their methods. I do support some of them but in no way shape or form do I believe someone should be punished for being disabled. I believe it causes more problems such as PSTD when aggression is used to "help" people. I have had those "old school" behavioral mods done in my past. I think it lead to more problems but am not going into details as it would take hours to write.

I left ALOT out but am basically thinking to ask for help to find a advocate or lawyer to take this case. I dont want money but I do have a strong sense of social justice and I see this as a violation of basic rights for ASD people who do want/need help.

I cant imagine why a lawyer would not get that a system who does not even have any understanding on ASD would not be obligated to educate and train its staff and if they dont then are they denying their clients of basic rights to appropriate treatment for their disability.

I know some here may not need this level of help but for those who do. I feel we need to get someone to help us get the basic rights that other disabled have to accomodations.

Problem is I dont know how to do this -- I am a social slug. Who helps us get help when we are lost at this? Does that make sense????

I need help to get help for not getting help. Something like that. Who does that for us?????

Like are their people out there that get us the advocate then we go from there. Its finding them that I am stuck at. I never get an answer. Seems everyone is talking to support ASD. But no one is actually DOING it. Something like that.

Thank you to all. LilGator/Aspiegirl on Youtube

Any medical condition, if someone has a potential heart condition which they feel is being poorly diagnosed, a person has a right to ask for a second opinion. And the way to assert this right is to ask with confidence and matter-of-factly. And yes, a lawyer or advocate can help. I'd suggest starting, if possible, with someone who is merely an advocate. I'll share a story in a little bit.

You don't say what country you're in and the mental health systems and legalities do vary from country to country. I'm guessing you're in the US, because it sounds like the kind of mess that happens a lot here.

You might want to consider an Advocate instead of a Lawyer, since what you want are solutions to your problems not money. An Advocate is someone who will be the intermediary and who will work with both parties to find an appropriate solutions. They should take the time to listen to you and understand your concerns, and they should have the social skills and negotiating skills to get something done.

My eldest son has AS and ADHD, but he also has some mood disorder type issues. We can get a good diagnosis but there are no services available for him. They used to warehouse people like him and now the warehouses are shut down (a good thing, mostly) but there isn't anything else.

Hang in there and keep us posted about your progress.

Thanks. Aardvark. I am not looking to sue - nothing like that. I have found that when I confront them - being a client - I am totally ignored. So I thouhgt as a last attempt to get this dealt with would be to like have an advocate/professional or lawyer confront them. Like if a professional spoke to them that it may get them to treat ASD people more effectively. Mostly for children and young adults who are being treated by untrained staff. After years of trying things this is the last thing I can think of to do before I give up.

All a professonal would need to do is ask them if they have any training on ASD. They dont so that one is in the open. Then the next question - how do you help them then. So simple to me but dont get why no one wants to touch the issue. Totally confused.

Been isolated for so long and really think its close to giving up time. Been housebound for long time. Really tired of fighting to be accepted. They just keep trying to get me to be normal and I cant do that. The fight to get them to understand ASD is not working. I am tired now. I tried to do this on my own but it did not work. Now I am just so tired of it all and all the people who claim to want to help disabled seem to only do that when it serves their cause - not when we need them. Well I am just tired and not feeling sorry for myself. Just a long struggle. It drains you.

Sorry if this is negative. I dont do this to often and dont post much. I am usually to chicken to post but broke down today and needed my own kind for advice.

Okay, back in Fall 2004, a friend gets section 8 and also a state program that helps pay for utilities. He was inquiring about a new program. A pipe had broken during cold weather and a landlord had written a critical letter. He had been out of town, yes, I suppose he could have anticipated (but how perfect do we need to be?).

I volunteered to attend with him. He accepted. I wore a suit and I felt my presence there changed the whole dynamic. The nasty downside, where the case worker tries to slam dunk the client, that wasn’t even on the table. She was trying, she was listening, she was engaging in a conversation, she was sincerely trying to be helpful without overtrying. It was all positive upside. Like any of us, she doesn’t need to be perfect. Although, everything I saw, she did really, really well. And primarily, she spent the energy necessary to engage in a real conversation. My friend got the information he needed, so he could make the decision best for him.

Yep I am in the US. Ohio. I was warehoused some. Group homes, hospitals, ect. I say they are still there they just moved us to the group homes that look nicer but treatment is about the same. Thankfully my mom came and rescued me when i was getting worse in their care (this was long time ago when i was young adult)

I could never take medications for moods because I had opposite reaction. I would get more agitated ect on meds. Meds to calm me down --- caused me to be less calm. My mom threw them out. My moderate behaviors were severe on meds. I think some ASD have adverse reactions to meds. Some don't. I do use weighted vest and techniques for overstimulation to try to calm down if overwhelmed. Works way better than the meds but still have times I fail at it.

Sorry if this went off topic a bit. I do that alot.

Any kind of activism, I've found, is very taxing, very draining.

And it's hard to meet fellow people in activism. I learned that in peace activism. People shy away, over shy away from any person who is weird or different (shouldn't, but people do). okay, so you have the issue with head banging, and I realize that it's more than just a difference. I'd say, just be matter-of-fact about it. A lot of people, 'normal' people fully included, engage in various self injuring behavior (smoking, over-drinking, over-eating, inattenive driving, etc, etc)

And so, for effective activism, you need a team of at least a handful of people, preferable more, and to form the team you need activism, and that's the paradox of it. So it takes time, a lot more of it than would seem to be necessary. And there's times you get discouraged and then come back and try again, and that's all part of the feel and texture of the situation.

I really like what you are sharing and I do agree with you but how do you get "a team" how do you really get an advocate.

I think I need them offline in the sense they need to be able to help hands on. Make sense? I can find people that support online but in face to face support that is needed - I cant find a sole to even respond. I want a team in offline life.

Sort going to be tough because I live in the middle of cornfields. heeee

Well one thing I am not lacking in is determination and dreaming and stubborness too.

Or can advocates advocate for you via internet to the mental health system?????

Thank you so much everyone for sharing.

Have you conacted AutismOhio yet?

http://www.autismohio.org/

I contacted the Autism Society Of Northwestern Ohio. One good thing is they actually paid for me to see Tony Atwood speak. But on the mental health system issue I basically am told to call or write people. I try that and usually get no response. I may not have always dont all suggestions. I chicken out. I am autistic. It is very hard for me to reach out. I am to nervous to even write on autism boards. So I do try some suggestion but then other times I find it hard to reach out. Like social roadblock. I just freeze up and the anxiety gets to big sometimes.

I never make phone calls. That is super hard for me. So anytime somebody says "call these people etc" I have never been able to follow through and pick up the phone. Calling people I dont know may be one of the hardest things for me to do in socializing. Dont know why but even after 45 years I have never gotten "better" at that one at all.

Its making the contact with others that I think I am trying to get help for. Like someone to 'find" the advocate. Once thats done and I get sort of connected to them - then I think I would be ok. Do you all know what I mean???

On my own I have tried (not perfect but for me major effort and way beyond my normal level, I really tried my best) but I failed. Have learned to write better though. My social skills improved too as I could not write so well and express myself like this until a few years ago when this all started.

AutismOhio has an e-mail address on their webpage and an advocacy network. Write them a short e-mail explaining your situation and ask for an advocate. The worst they can do is say no.

Yeah, I'd rather have live, face-to-face supporters and colleagues. Okay, I'll tell you, just last night watching a Karyoke night, I got think about a dance after a peace march, but I was so stressed about my event that I couldn't really enjoy it. But, my event was a bridge event from the big protest to weekly vigils in front of the federal building. So, it was successful, and I did other successful things, but I didn't really enjoy it. In particular, I didn't make any friends (in part, I think people have heard stories about undercover federal agents to be a little spooked, and then if anyone is somewhat weird, and I also have a speech difference (nasal voice) and I like philosophy and try and bring it in, so people shy away. In addition, if people have recently decided that the right thing for them to do is to publicly stand up against a war, they have gone through a recent growth period and possibly (probably?) need a consolidation period)

This was the first Persian Gulf War in 1990-91. I realize that many people disagree with me, and I respect that. At the time, there was a survey that showed that 85% of my fellow citizens supported the war. The only thing I'd ask, Are you sure it was that low! Because it sure seemed like it was higher than that.

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An Autism Rights Group, you're going to recruit a lot of parents, and that fine's, parents have every right and they actually do a very good thing when they advocate in the broader community, however you're going to have some risk of becoming something like "Autism Speaks." Maybe the solution is to have a goal that 50% of the members be people that actually have Autism/Asperger's.

And importantly, I recommend doing it in a number of medium steps, and trusting your 'gut' (feel and texture, right-brain thinking, pattern recognition) regarding each medium step.

I really, really struggle with phone calls, too. Often, it takes my high energy time of the day, the morning. Often, I really, really put it off. And the whole thing is embarrassing.

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It sounds like the Autism group is trying to be polite. But you're asking them if they want to help, and they're telling you how to do it by yourself. 'No, no, no, I'm asking you if you want to help with me. I can figure out how to do it by myself. But I'm asking you if you want to stand with me, side by side, and we work on it together' And probably there's a better way to say it than this, and probably there's a shorter way.


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the self-help group depicted in the movie MOZART AND THE WHALE. parts of the movie I liked, parts I didn't, but this group seemed to have some real potential.

and why just one type of group? I want a variety of different types of groups.

There are a few moms in my area who do the autism awareness thing. But I found if you dont go 100% their way they dont want to hear you. Sad too because I think input for real autistics would help them to understand their children in a much more "realistic" way. They seem to be all about cure or getting their kids to be more like "normal" kids. Its the ABA thing. I dont disagree with all they say its just that I do not think its realistic. Acceptence is important for all. If the kids are different and their own parents cant accept that how can the kids learn to like themselves. I do agree in helping them to learn etc. but They (some parents, teachers etc) seem like they want to get a neurotypical from and asd. I think that will not work. So I wont give in and agree just to be accepted so my attempt to mix with them was very short lived.

As far as wars. Seems to me its a social thing. Not wars but on how people "respond" to them.

If its the IN thing to support war they will. When its not the in thing they wont. Talking about people who go with the majority versus making up their own minds on their own beliefs and not the groups belief. I mean like do they ever actually even read up on or educate themselves on what they think they believe in. I know that may sound weird but I base my beliefs on what I read on and not on what the TV tells me to think. Come to your own conclusion on how you feel then search out those who feel like you do. Sort of believe this in all areas. I am sort of one to think what I believe in and its usually different then the mainstream but they seem to follow the group. Not saying its a neurotypical thing - just a social thing that I dont get to well.

ETA: Got worried Aardvark that you may think I was saying you support war as an in thing to follow the group so just adding this to say I did not mean that at all. Just worried I might have worded that wrong. Was talking of what I see on TV alot and not referring to your cause at all.

Last edited by LilGator on 21 Jun 2010, 1:22 pm, edited 2 times in total.

EEEE. What I bolded is exactly what I was trying to do. You hit it on the head right their. They were polite but did not get my point. You are the first one who did. I was very clear (I think) I mean how else can a person say it. I worded it clearly when I asked for that.

Oh, I think it's like school. People viscerally know what it's like to be labeled and excluded, and don't want to even come close to taking the chance

(and not to say there weren't arguments on the side, given the circumstances, the war was the least lousy choice. but most people seemed to find it tedious and frustrating to have this kind of conversation)