How come help doesn't exist?

[Poppy98]

I had to learn to solve most of my own problems, or at least learn how to manage the intractable ones. Waiting for others to fix things for you usually means you die waiting.

Agreed. I think that patient-lead solutions are also much more effective, but the system tends to be the opposite way.

 

[velociraptor]

but the system tends to be the opposite way.

Systems tend toward being self-sustaining. A system that helps disadvantaged people cannot run out of clients or the caregivers are out of work. They're great at maintaining the status quo. That's not so great if your default condition (as a client of said system) sucks donkey butt. I like good food and I have expensive hobbies. I had to level up on my own to live the life that interested me. There were no supports available for that sort of thing. Still aren't from what I can see.

Be your own support system as much as you can. It pays off in the long run.

 

[the_tortoise]

A system that helps disadvantaged people cannot run out of clients or the caregivers are out of work.

The sad reality is that even if all the caregivers in existence actually helped all their clients: without systemic change throughout society, the rest of society (i.e. everyone but the caregivers [-- also just random acts of nature/fate]) would still be there to hurt and destroy people, to prevent long-term and sustainable solutions, and there would never ever be a shortage of clients to help.

Those who work directly with people tend to have no power over and very little if any sway/influence with the administrators who keep the status quo as it is[; and who fund (or more to the point: don't fund) good quality, truly benevolent, not-profit-driven, participant-/consumer-informed research and the development and provision of various therapies]. The direct care providers could do a lot better than they do, on the whole (there are many individual exceptions who provide outstanding support...sadly many are run out of their jobs, burn out, or kill themselves...but not all of them, some persevere...and the point is that they exist, even if they are hard to find)...even just within the limits imposed upon them. [Basic empathy is often lacking.]

Medicine, and I think mental health care especially, on the whole is far too often way too paternalistic and inflexible, and slow to change.

 

[velociraptor]

Medicine, and I think mental health care especially, on the whole is far too often way too paternalistic and inflexible, and slow to change.

Easy solution. Don't play a rigged game.

 

[Matthias]

Autism was originally classified and treated as a mental health disorder, with psychologists reporting varying degrees of success (including full recovery) treating autistic children. Given that autism usually starts between 1 to 2 years old, these reports led to people blaming mothers for their child's autism. To cope with their guilt, some of these women pressured those in charge to ignore the evidence early psychologists found and look for genetic causes of autism instead. Researchers have mostly abandoned psychological research and treatment to avoid hurting these women's feelings, which is why mental health treatment of autism is nearly non-existent. Therapists are taught that everything is genetic and that there's nothing they can do to help their patients other than teach basic social skills, improve behavior through ABA, and treat secondary mental health conditions, such as depression and anxiety disorders.

 

[the_tortoise]

Easy solution. Don't play a rigged game.

I'm not sure why this is your response to what I wrote...nor am I clear on what you mean...

For myself personally, I seek help when I need it and when it is safe or when I have nothing at all to lose anymore. I reject what I don't want or that which is harmful or useless to me. I know my rights as a patient or psychology client in my province and country and I assert them, unless I am not given the chance (and at this point I am careful to only seek medical or mental health help when I am reasonably sure I will be respected and listened to, will get the chance and the time needed to speak for myself, and to demonstrate capacity to give or refuse consent to things...which unfortunately means almost never without a trusted advocate, which means very rarely but not never)...So, I don't see myself as playing a rigged game.

And I don't believe that all help offered in existing systems, however corrupt or deficient they may be, is useless or just part of a rigged game. Even if a lot or most of it may be.

I have been lucky to be the patient/client of a small collection of extremely helpful and respectful medical and mental health professionals -- they are a small minority of all those I have seen but they do exist, and they can do a lot within the limits imposed upon them. They are an example of what can be, even within existing messed-up systems -- and of how much of helpful vs not depends on the individual rather than the system they work within. Things thing they all have/had in common: Lack of extreme attachment to dogmatic ideas or practices, creative and flexible thinking, humility, dedication to harm reduction, acceptance of the fact that not all problems have solutions and not all illness has cures, nonjudgemental acceptance of diversity.

I accept that systemic change is unlikely within my lifetime, or at least to be very slow, but if we all adopt the attitudes "don't even try" and "every person for themself" we guarantee nothing ever changes, and allow for things to get worse - and not everyone is able to, knows how to, or is allowed to just disengage from existing systems.

 

[velociraptor]

I'm not sure why this is your response to what I wrote...nor am I clear on what you mean...

I have schizophrenia in addition to Asperger's (my official diagnosis back when it was a diagnosis). It's a twofer and not a great one. If you think lack of resources and stigma are bad for those with ASD, I have news for you...

I see everything in patterns and the over-arching pattern I saw with the mental health help available to me where I live in Canada was that it would not help me and could not help me achieve any sort of meaningful recovery from the schizophrenia, which was bad by the way. I could not stand to continue living the way I was and I didn't want to end myself yet. I equated the system I was facing to being akin to trying to play in a game that was rigged against me. So I stopped playing their game and invented my own.

I'm still here. I've not got a classic education, but I'm well read, I've stayed consistently employed and mostly in good jobs. I've got a wife and a kid and I think my life has been decent enough. I'd have none of that if I had stayed in the system and waited for help because the help is not coming. The help doesn't exist. Being thrown a life preserver, but left floating in the river endlessly is not help.

That's my 2 cents. Worth much less with today's inflation.

 

[Crossbreed]

Given that autism usually starts between 1 to 2 years old, these reports led to people blaming mothers for their child's autism. To cope with their guilt, some of these women pressured those in charge to ignore the evidence early psychologists found and look for genetic causes of autism instead. Researchers have mostly abandoned psychological research and treatment to avoid hurting these women's feelings, which is why mental health treatment of autism is nearly non-existent.

You seem to have missed Lorna Wing. She had an ASD3 daughter, Suzy, and was also accused of being a "refrigerator" mother. In places that still subscribe to that hypothesis, women are afraid to have their children evaluated for the shame it infers!

Can you imagine having to say,
"Doc, I think my baby has Unloved Baby Syndrome...!?"

 

[Matthias]

You seem to have missed Lorna Wing. She had an ASD3 daughter, Suzy, and was also accused of being a "refrigerator" mother. In places that still subscribe to that hypothesis, women are afraid to have their children evaluated for the shame it infers!

Can you imagine having to say,
"Doc, I think my baby has Unloved Baby Syndrome...!?"

Sounds like a mental problem. It wouldn't stop me from getting a baby evaluated for autism and I don't think it should stop researchers from researching likely causes of it.

 

[NB79]

Autism was originally classified and treated as a mental health disorder, with psychologists reporting varying degrees of success (including full recovery) treating autistic children. Given that autism usually starts between 1 to 2 years old, these reports led to people blaming mothers for their child's autism. To cope with their guilt, some of these women pressured those in charge to ignore the evidence early psychologists found and look for genetic causes of autism instead. Researchers have mostly abandoned psychological research and treatment to avoid hurting these women's feelings, which is why mental health treatment of autism is nearly non-existent. Therapists are taught that everything is genetic and that there's nothing they can do to help their patients other than teach basic social skills, improve behavior through ABA, and treat secondary mental health conditions, such as depression and anxiety disorders.

I have read doctors have been 'dishonored' at least, for showing studies that are 'problematic' to today ideologies. And doctors are being forced to comply and i would say deny basic reality in favour of some ideologies, teachers too.

 

[the_tortoise]

I have schizophrenia in addition to Asperger's (my official diagnosis back when it was a diagnosis). It's a twofer and not a great one. If you think lack of resources and stigma are bad for those with ASD, I have news for you...

I see everything in patterns and the over-arching pattern I saw with the mental health help available to me where I live in Canada was that it would not help me and could not help me achieve any sort of meaningful recovery from the schizophrenia, which was bad by the way. I could not stand to continue living the way I was and I didn't want to end myself yet. I equated the system I was facing to being akin to trying to play in a game that was rigged against me. So I stopped playing their game and invented my own.

I'm still here. I've not got a classic education, but I'm well read, I've stayed consistently employed and mostly in good jobs. I've got a wife and a kid and I think my life has been decent enough. I'd have none of that if I had stayed in the system and waited for help because the help is not coming. The help doesn't exist. Being thrown a life preserver, but left floating in the river endlessly is not help.

That's my 2 cents. Worth much less with today's inflation.

I also live in Canada, and have very little respect for or faith in the mental health systems here.

I am not sure why you think we are arguing about the value of the system -- we aren't. I'm just saying very rare individual practitioner exceptions to the rule of 100% unhelpful, messed up, and bad for everyone and everything do exist. They may be almost as common as unicorns (ie almost truly nonexistent) but not quite -- and most may exist in private practices (and the best and also rarest of them btw have sliding scale fees that go all the way to $0/session or I would never have recieved the help I have) -- those in public systems are even more rare because more restrictions and political garbage influences how they practice.

And I can easily believe if my "alphabet soup" of labelled conditions included schizophrenia I'd likely say that no exceptions existed. I can't speak to what is out there and imposed upon or refused to people with conditions and labels I don't have. But I also won't take it as fact from one person that has not seen every single practitioner in every single populated region of Canada that zero exceptions to the rule will ever exist or have ever existed. There are people whose perceptions are changed and who carve out little niches of actually helpful support for marginalized and misunderstood populations -- it tends to take decades and a lot of luck, it's not guaranteed/inevitable,

And I am not suggesting anyone just keep endlessly trying to find a metaphorical needle in a haystack that they may not actually ever find even if they search for a lifetime.

I am not refuting anyone's experience of finding no help nor criticizing anyone's reasonable choice to give up entirely because no help is better than being harmed by unhelpful "help" that turns out to be just misunderstanding, abuse and negligence.

I'm fine to disagree that any change to the systems that exist is ever even theoretically possible. I am not exactly holding my breath...the chances are slim for systemic change, especially in the shorter term...and I am very aware that the things that prevent any positive change are immense and entrenched and the people most suited to create positive change are the least empowered. But over centuries of human history progress towards better help or simply towards fair practices in all spheres of society has been made -- so even if this is a purely theoretical belief with no guarantees of realization, I do believe change is possible. I don't need you to agree with me and if you want the last word after this post you can have it, I am as entitled to my opinions as you are to yours and I'm fine with you disagreeing with me there might be even a theoretical possibility systemic change could ever happen.

I am glad for you that you were able to walk away from the messed up system that had nothing to offer you, but I will say one more time, though, that not everyone can do that. "I did it/can do it therefore so can everyone/anyone" is not rational and absolutely not true -- not for anything. And this is why discussing these things, discussing what is wrong and how things could be better, noticing and recognizing the work of the so so few who try to do better as individuals in positions of power in health and social care systems is important to me -- because I am not a fan of the "every person for themselves" philosophy and I think everyone would be better off if we all cared about each other instead of blindly insisting everyone has the same abilities required to walk away and go it alone or just writing off all those who cannot walk away and go it alone. If everyone thinks as you do, doesn't care if anything changes because you personally don't need it to and consequently disregards anyone who for any number of reasons cannot walk away and go it alone, doesn't think anyone should try to do even the smallest thing of talking about what could be better and what is wrong (which serves at least the purpose of validating and potentially informing everyone mistreated and neglected by the systems as they are, which imo has value in and of itself for some - maybe not yourself and that's fine) -- at least not without reducing it to a stubborn argument of "do as i did the end" as if everyone actually can -- then it is guaranteed to become a self-fulfilling prophecy when nothing ever changes.

For some of us, the choice is stay in the healthcare and social systems that exist or actually die no matter how hard we try to make it relying only on ourselves. For others they don't have any choice at all, it is taken away from them via court orders. Everyone who is forced to stay, and doesn't even have the choice of death by refusing all torturous awful "support" that comes as a requirement for whatever actual support meets basic needs to stay alive, deserves better. Deserves at least a non-condescending discussion and for people to talk about these things in hopes, however faint, that maybe someday people with power will hear us and join the discussion and actually do something to make even the smallest positive step towards creating services that actually help people.

 

[velociraptor]

I am not sure why you think we are arguing

Not arguing. Relating my experience. Trust me, you'll know when I pick a fight as I don’t do subtle.

 

[the_tortoise]

Not arguing. Relating my experience. Trust me, you'll know when I pick a fight as I don’t do subtle.

Okay. My apologies for misunderstanding you.

 

[velociraptor]

but I will say one more time, though, that not everyone can do that

Everyone can walk away. Not everyone will succeed at it.

The biggest thing I learned from the experience is this: Never take someone else's word for what your limits are - find out for yourself. You may be pleasantly surprised. Or not.

Things were obviously going to end badly if I stayed where I was. If what I tried didn't work they just would have ended badly more quickly, which could have been a small mercy. There was little downside and lots of upside, for me at least. This was also not a fast process. Over three decades of fits and starts, going forward and then backwards sometimes, plenty of embarrassing faceplants over the years. The thing is to not give up. Failures are lessons. So learn and take another swing at it.

 

[Matthias]

I think it's worth noting that everything a good therapist can teach you can also be found in a book. There are self-help books for almost every condition and problem related to mental health, emotions, thinking, etc. Instead of shopping around trying to find a good therapist, you could just read a book written by a great therapist to get the best advice. I know some people have found these self-helps books to be more helpful than seeing a therapist. Of course, I realize reading books isn't for everyone and that having a great therapist who understands and validates how you feel (if you're able to find one) can provide additional benefits (such as social connection, feeling less alone) that you might not get from a book.

 

[Crossbreed]

Sounds like a mental problem. It wouldn't stop me from getting a baby evaluated for autism and I don't think it should stop researchers from researching likely causes of it.

1. Framing autism as the product of cold parenting is incorrect. That is like blaming the parents for left-handedness.
2. It is a catch-22, like "Have you stopped beating your wife, yet...?"
3. Did you miss the Lorna Wing reference? She revolutionized our understanding of autism and established that it was a spectrum. Should she have just shut up, instead, and embraced her "refrigerator mother" pronouncement...?

Parents can contribute to PTSD or FAS, but the only way they contribute to ASD is genetically, with* or without** complications.

*ASD2/3
**ASD1

 

[Matthias]

1. Framing autism as the product of cold parenting is incorrect. That is like blaming the parents for left-handedness.
2. It is a catch-22, like "Have you stopped beating your wife, yet...?"
3. Did you miss the Lorna Wing reference? She revolutionized our understanding of autism and established that it was a spectrum. Should she have just shut up, instead, and embraced her "refrigerator mother" pronouncement...?

Parents can contribute to PTSD or FAS, but the only way they contribute to ASD is genetically, with* or without** complications.

*ASD2/3
**ASD1

I respect your opinion but I don't agree with it (with one exception - I agree autism isn't a product of cold parenting, which is only one of many possible psychological explanations of ASD symptoms). I never heard of Lorna Wing and don't like blaming others but I know it's not accurate to say that parenting is unable to contribute to ASD in any way as science has shown that parenting contributes to autistic traits in some children.

 

[Crossbreed]

...but I know it's not accurate to say that parenting is unable to contribute to ASD in any way as science has shown that parenting contributes to autistic traits in some children.

Autism, before severe co-morbid conditions are acquired, is just a peculiar but viable, inherited neurology; a difference, not a defect.
External conditions can make one's autism worse than it needs to be, but they cannot make one autistic (nor make one an NT).

Autism-competent counselors know this. Only an autism quack would seek to turn an autistic into an NT.

 

[Shevek]

I respect your opinion but I don't agree with it (with one exception - I agree autism isn't a product of cold parenting, which is only one of many possible psychological explanations of ASD symptoms). I never heard of Lorna Wing and don't like blaming others but I know it's not accurate to say that parenting is unable to contribute to ASD in any way as science has shown that parenting contributes to autistic traits in some children.

Yeah, I got my AS from my mother's genes, but I got my attachment disorder from her cold parenting. The second one carried no benefits.