Have the Mental Health Professionals Failed the Autism Community?

[Judge]

I'm afraid such a question isn't likely to be responded to with any sense of objectivity. Where most responses will simply reflect one's personal experience in the realm of mental health support. Or the lack thereof.

With the latter probably out-polling the former. Then again given the disparity of care between the US and other nations with better health care systems can also skew such results. So I guess it just depends on who ultimately responds.

 

[Chance]

They have their manual, so how come they can't agree?

Their manual can't even agree with itself... it's more like word circles, with huge voids.

 

[Judge]

They have their manual, so how come they can't agree?

America. The land of the contentious, home of the brave.

Where no one agrees with much of anyone anymore, almost as if on general principle alone. Where perpetuating conflict is preferred to being productive and formulating a consensus.

Who is to say there isn't a "contagion factor" that allows this dynamic to spill into other aspects of our society besides just politics?

 

[AO1501]

Mental health professionals continuously fail those with ASD because ASDs are not mental health problems. Whether by having autistic children committed to asylums in the past, or by prescribing copious and various medications now, their focus is not on the problem, but simply trying to manage 'patient' symptoms.

With what we know of current autism science, autism is not curable. Yet due to the understandable pressure of parents and family members, the thrust of treatment options is about any form of mitigation therapy that seems to help, whatever it is, whatever the therapeutic fashion of the day might be, and whatever the damage it may do to the individual in treatment.

There are too many vested interests in keeping it that way. Mental Health professionals make money out of often bizarre therapies, and establishing ongoing and prolonged treatment programs, and the pharmaceutical industry makes money out of everyone who can be convinced needs medicating towards normality.

And just as we see from time to time here, there are too many who don't have ASDs, and dismiss the ideas and needs of those who do.

The change in diagnostic criteria between DSM-IV and V may be a sign that the professionals are getting a better idea of what they are dealing with, but equally, it could indicate the opposite, that they haven't a clue. It doesn't inspire confidence.

 

[LucyPurrs]

I totally agree that ASD is not a mental health problem and that it's co-occurring conditions that present for mental health treatment. No one seeks treatment to get rewired, but they do to cope with anxiety, depression and PTSD and other more traditional mental health issues. Treatment designed to cure ASD is analogous to me to treatment designed to cure homosexuality, both are fallacies as in both cases someone is born with them.

 

[AO1501]

I totally agree that ASD is not a mental health problem and that it's co-occurring conditions that present for mental health treatment. No one seeks treatment to get rewired, but they do to cope with anxiety, depression and PTSD and other more traditional mental health issues. Treatment designed to cure ASD is analogous to me to treatment designed to cure homosexuality, both are fallacies as in both cases someone is born with them.

No disagreement with the seeking of treatment of co-occuring mental health conditions, but these conditions don't exist in isolation from the ASD, but as part of it. Few mental health professionals seem to get that.

But when you say that no-one seeks treatment to get rewired, I think that misses the point of the many parents of ASD children who do exactly that, believing, or rather hoping, that it is possible. Mental health professionals have long been complicit in that objective, despite the fact they should know it is not possible.

 

[Fridgemagnetman]

It's like any other problem/solution: Step 1, identify problem. Step 2, identify solution

America. The land of the contentious, home of the brave.

Where no one agrees with much of anyone anymore, almost as if on general principle alone. Where perpetuating conflict is preferred to being productive and formulating a consensus.

Who is to say there isn't a "contagion factor" that allows this dynamic to spill into other aspects of our society besides just politics?

Divide and rule for personal gain through 'murdoch' and other means
Killing the spirit of the people...

But is there a new spirit being born?

 

[LucyPurrs]

No disagreement with the seeking of treatment of co-occuring mental health conditions, but these conditions don't exist in isolation from the ASD, but as part of it. Few mental health professionals seem to get that.

But when you say that no-one seeks treatment to get rewired, I think that misses the point of the many parents of ASD children who do exactly that, believing, or rather hoping, that it is possible. Mental health professionals have long been complicit in that objective, despite the fact they should know it is not possible.

Agreed, I was thinking of adults with ASD seeking treatment to get rewired but you make a good point about parents of ASD children.

 

[Crossbreed]

But when you say that no-one seeks treatment to get rewired, I think that misses the point of the many parents of ASD children who do exactly that, believing, or rather hoping, that it is possible.

Being an ASD1 parent, I have no such agenda about turning my ASD2 and ASD3 children into NTs. I'd like to see them move toward ASD1, though.

 

[AO1501]

Being an ASD1 parent, I have no such agenda about turning my ASD2 and ASD3 children into NTs. I'd like to see them move toward ASD1, though.

Yes, apologies to you and many other parents who do not have a 'rewiring' agenda. My regret in this is that largely on the backs of the professionals, there remains a strong emphasis on the pursuit of 'the cure' and far less emphasis (and thus funding) for support, outreach and the generation of opportunities.

 

[WereBear]

Autism is not a mental illness or a health condition.

We need to cure the society that makes it so difficult to be ourselves.

 

[wight]

In short, yes, the psychiatric community is a failure.

In long, let me start with the entire medical community fails to live up to the trust and power we tend to give them [long long long explanation with citations and examples]... which is why I agree with the earlier sentiment that

I've had to figure it out myself

and

you're better off educating yourself and self-diagnosing, because only you know what it's like to be you

And I'll close with, "organized medicine" as it exists today is more about making money than actually helping people and thus is fundamentally a sad, sad, joke.​

 

[ZebraAutismo]

Since CAMHS would never see me because I had autism which they apparently see people with it. I’ve been a waiting list for adult services for over a year. My only form of therapy right now is 1 hour a week of art therapy which collage has to sort out. Basically mental health services for autism are few and far between. As in my countyhas no mental health OTs who treat autism.

 

[the_tortoise]

I think there are far too many people in mental health fields who are incompetent and/or have control issues.

The decent mental health people are hard to find.

I also think the fields of psychology/psychiatry as a whole take themselves far too seriously, lack flexibility and don't do enough to become aware of the contributions that other disciplines could make and have already made in terms of understanding all the myriad aspects of the human experience that they work with.

 

[WereBear]

My criticisms apply to the treatment NTs get, as well as those of us on the Spectrum.

• It becomes a game of Pick the Pill
• Insurance offers limited choices
• Specialization is not supported
• Med side effects are ignored
• Alternatives are ignored

In trying to figure out my admittedly rare problem, I had many appointments with my General Practioner, three OB-GYNs, an Endocrinologist, a Doctor of Cognitive Behavioral Therapy, a massage therapist, and a nutritionist.

I kept telling the hormone specialists I needed hormones and they wanted to give me Prozac. The nutritionist was horrified at the way I was eating, which had been keeping me healthy for years. The massage therapist was the only one that made me feel better... and my insurance won’t cover that.

Medicine is not listening to the patient.

I am fortunate in that I was trained in college in how to read studies, and there are so many helpful people online with far more knowledge than mine. But not everyone has the skills or the time or the willingness to do all that. That is what experts are supposed to do.

And they don’t.

 

[pjcnet]

My criticisms apply to the treatment NTs get, as well as those of us on the Spectrum.

• It becomes a game of Pick the Pill
• Insurance offers limited choices
• Specialization is not supported
• Med side effects are ignored
• Alternatives are ignored

In trying to figure out my admittedly rare problem, I had many appointments with my General Practioner, three OB-GYNs, an Endocrinologist, a Doctor of Cognitive Behavioral Therapy, a massage therapist, and a nutritionist.

I kept telling the hormone specialists I needed hormones and they wanted to give me Prozac. The nutritionist was horrified at the way I was eating, which had been keeping me healthy for years. The massage therapist was the only one that made me feel better... and my insurance won’t cover that.

Medicine is not listening to the patient.

I am fortunate in that I was trained in college in how to read studies, and there are so many helpful people online with far more knowledge than mine. But not everyone has the skills or the time or the willingness to do all that. That is what experts are supposed to do.

And they don’t.

In many ways people living in countries like the USA without a "free"** National Health Service (NHS) or equivalent have it worse because they have to deal with insurance companies where people often need to have a degree in law to fully understand the policy and all the exclusions which can be designed to unfairly catch people out, plus insurance can so unfair generally, punishing people for things they simply have no control over that aren't their fault. Insurance companies only really care about making as much profit as possible, they don't care about people apart from making money out of them and they will only usually pay out if they legally have to, not because they want to help the person, also sometimes the best and more expensive treatments won't be covered under the insurance, so only wealthy people can afford it. Much worse however the poorest people in society can't even afford insurance at all, these are often the very people who need treatment the most, especially when it comes to mental health conditions, yet they will only have access to the poorest treatment if they get any treatment at all.

In the UK however and probably in many other countries the National Health Service is underfunded and they will therefore push towards the cheapest short term option in most cases and when it comes to mental health the cheapest option is usually "quick fix" drugs that are often detrimental in the long term, if you want better treatment you often have to fight for it and even then there is often long waiting lists. Sometimes however the very best and most expensive treatments won't even be available on the NHS at all, so again only wealthy people can afford it. A small proportion of people even in the UK choose to have private medical insurance so they can receive better treatment in private hospitals, but then they're most likely still up against many of the same issues as in countries like the USA, but since there's an NHS, private hospitals have to be a cut above NHS hospitals in order to make having additional insurance worthwhile, this makes it more expensive and is more often purchased by the wealthier members of society.

** I quoted "free" because the NHS is paid for by tax payers and taxes therefore have to be higher in countries like the UK with an NHS service in order to pay for it. In other words if you're a working tax payer the NHS isn't really free. Even if you choose to purchase private health insurance you're still forced to pay towards the NHS.

 

[WereBear]

In other words if you're a working tax payer the NHS isn't really free.

Nothing is

But it is true that a lot of Americans don’t realize that getting health care on such a basis saves them money. More socialized systems like the NHS does not bankrupt people to stay alive.

My insurance is considered pretty good, but it only pays for 80% of the bill. Which can be a lot.

And it has been completely useless for me when it comes to my autism condition.

 

[Thinx]

There have been some very good first person accounts of people understanding they must have autism more recently especially the realisation it's applicable to women that's something previously and somewhat still causing misunderstanding and misdiagnosis. I read several good books from Jessica Kingsley publisher about this. And it does show up the temporary and conjectural nature of theorising in this area by researchers and medics. Yet some of those same people are firmly holding on to careers built on speculations that are now repudiated.

It's a poor system and one points got to be that the systems in operation are lacking the input of people who design good systems. Hello we are over here getting laughed at for not knowing how to Goof around and not wanting to party.

 

[wight]

To be fair to the psychology/psychiatric community at large, the recent (5-10 years) advances in technology and neurosciences have made much of the previous "theories of treatment" rather outdated and/or obsolete. They are, frankly, somewhat overmatched.

The flip side, is of course, that the ordinary person can hardly begin to grasp the complexity of their problems and the reasons for their problems, when they know nothing about either field. I didn't keep track but I've spent a huge number of hours over the last 3 years reading about these subjects.

 

[WereBear]

To be fair to the psychology/psychiatric community at large, the recent (5-10 years) advances in technology and neurosciences have made much of the previous "theories of treatment" rather outdated and/or obsolete.

True. But how much has this changed those "theories of treatment"?

I found ONE paper that showed people with autism who supplemented with pregnenolone seemed to be helped by it. I shared it on this forum with the note that when I tried this OTC supplement, I was helped by it. With none of the side effects of prescription SSRIs. Even though some of the people in the study were on some serious psychiatric drugs.

The authors of the paper said something like "this shows promise in helping mood disorder symptoms without toxic side effects."

And yet no one did it. Except, apparently, me.