Have the Mental Health Professionals Failed the Autism Community?

[Sportster]

I experienced three different programs with three different "therapists." One program had a psychiatrist running it, another a psychologist, and another some sort of clinical counselor or something. Each program had two or three other mental health professionals assisting. Each had a different approach and each had a different theory or diagnosis. Even my ASD diagnosis is in question. The thing that amazes me is there can be such a wide disagreement between the so-called professionals. They have their manual, so how come they can't agree?

 

[Rayner]

I wouldn't say that they have failed per say, as treatments and therapies haven't improved there isn't much that they can do to make improvements. If that makes sense. I'd agree that the disorder is more well known today than it has been in years past. I don't think society has a complete understanding of Autism. For one thing, I would say that for instance society still has a very hard time understanding that autistic children will grow up into autistic adults.

 

[Crossbreed]

My choice wasn't available.

I believe that autistic neuro-psychology is a specialized discipline, like its cousin, gifted neuro-psychology. Those rare* few who have pursued these specialties are doing a bang-up job.

Others are open to expanding their understanding of ASDs.

The rest (who are not) are clueless.

*Rare enough for children. Even more rare for adults.

 

[Chance]

I like what you are all saying and thinking... I also would like to add that ASD is so often very child centered and I get that is important... But in this (us forgotten kids who weren't part of the programs of today)... We were also those kids and we grew up without help...

We are often out in the shadows and its like people don't know what to do with us.

My first thoughts would be that people think we are some lost cause, but I think we got accidentally buried in the times and layers of over reaching technology that gets so specific oriented...

PLUS I dislike when programs turn into cash cows that make claims of how much they do and the facts say they are just bug business... with big agendas... YUCK

 

[WereBear]

When I was in my teens there was a lot of suffering around menopause, and Young Me, Science Fan, was all, "They will have that figured out by the time I need to worry about it." And I was spectacularly wrong. I needed hormones and they wanted to give me Prozac.

I feel the same way about mental health. I need real coping strategies and health support, and I've had to figure it out myself, because all they want to do is give me Prozac.

 

[Major Tom]

All I can say is my psychologist does his best, but all he knows to do is throw more meds at me with little to no positive effect. Other than anxiety, and ADHD (to some extent), there are no drugs that seem to work to regulate the symptoms of autism. Antipsychotic meds somewhat dull the senses, but not in a preferable way.

I think as a whole the medical community barely has its foot in the door as far as autism goes. I think maybe we are approaching the issue from the wrong directions. Something is just not working. That being said, I think that at least they are doing the best with what they have.

 

[WereBear]

All I can say is my psychologist does his best, but all he knows to do is throw more meds at me with little to no positive effect. Other than anxiety, and ADHD (to some extent), there are no drugs that seem to work to regulate the symptoms of autism.

I got much better results from niacin (used to treat Canadian WWII POWs for PTSD with great results) and pregnenolone to replace my missing hormones, instead of guessing what hormones my body needed, and how much. This is all stuff I had to figure out for myself.

I must say that, with no specialists in the area, I did consult a Cognitive Behavioral Therapist (who stated, "I know more than anyone within 100 miles, which isn't all that much") and we came up with some coping strategies (like when I handled the public, I mentally "built a bunker" around me as a shield while operating "through the window" which actually helped) but could not address the damage I had already sustained. I had to do sleep and nutritional therapies to actually get better.

I have become extremely cynical about psychiatric drugs. Even when they work, which the latest studies say is only 1/3 of the time, they cannot be taken long term without damaging the receptors in the brain. And the one time I tried it, it worked, kinda, for only two weeks. And stopped. Not going there again!

 

[Catana]

I can't pin down a proper answer to the question because it's such a complex issue. For an analogy: medical doctors are expected to keep up with developments in their field, but they may not do so, for many reasons. One reason that may make it actually impossible is that their field is changing rapidly. Add in their comfort with what they've already learned and the belief that it's good enough. Who hasn't gone to a doctor with a problem and been given the wrong diagnosis? And medicine is a well-established entity.

Keep in mind that psychology is not a science, although it's trying to be. As Major Tom said, "...as a whole the medical community barely has its foot in the door as far as autism goes." And as Crossbreed Missionary said, "...autistic neuro-psychology is a specialized discipline, like its cousin, gifted neuro-psychology. Those rare* few who have pursued these specialties are doing a bang-up job."

The study of autism is still in its infancy, really.

 

[WereBear]

The study of autism is still in its infancy, really.

That's the essence of the problem: but science is supposed to relish such challenges. You'd think more would appreciate being pioneers in this very fascinating area which overlaps physical and psyche.

 

[Catana]

That's the essence of the problem: but science is supposed to relish such challenges. You'd think more would appreciate being pioneers in this very fascinating area which overlaps physical and psyche.

It's more normal for humans to resist change than to welcome it. And the number that actually work to introduce new ideas and bring about change is almost infinitely small.

Arthur Schopenhauer, 19th C. philosopher: “All truth passes through three stages: First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as self-evident.”

 

[pjcnet]

They've grossly let down everyone, but since there's a higher proportion of people with autism that suffer from depression and anxiety which they often separately diagnose as "mental illness" and also because sometimes they even call ASD a "mental illness" (IT'S DEFINITELY NOT), they've let down a higher proportion of autistic people compared to the general population. It's not just mental health "professionals" (and I use the term "professionals" very loosely) that have let everyone down, it's also the very powerful and corrupt pharmaceutical companies that push harmful and addictive mind altering drugs that the so called "professionals" can then use as a cheap "quick fix" in an often underfunded system where real treatment isn't seen as feasibly possible for most people that truly need it. The problem is these drugs are a vicious circle because they often make people worse in the long term which puts a constant strain on resources. Even heroin is a "quick fix" for depression, it's great in the short term because it most definitely takes all your worries and anxiety away, but most of us know that the negative effects greatly outweigh the short term positive, with prescribed drugs it's just not as obvious and blatant.

Mental health institutions have also massively failed where they became a place of extreme abuse and punishment to people who were often supposed to be "patients", not prisoners. I believe many of these institutions were closed and knocked down in recent years to cover up and forget about the shocking abuse that went on since much of it was being uncovered. There are still however a reduced number of institutions even today and from the testimonies of an ex patient I know that spent a short time in one only a few years ago in the UK, shocking abuse is still rife and their main treatment is to forcibly drug "patients" up as much as possible to make them easier to manage. These horrid institutions only serve to make people much worse, not improve their recovery.

In my opinion they have also often used mental health patients to test and experiment with "treatments" over the years that are often very dangerous and detrimental, here's a couple of examples:

Electroshock therapy
Many people believe that this totally barbaric "treatment" was only used many years ago, but they'd be surprised to learn that it's still often used even today, except due to the very negative publicity the name has been changed to electroconvulsive therapy or ECT. The link worryingly takes you to an article on the official website of the largest and most respected mental health charity in the UK called Mind, their article shows the "treatment" in a positive way, but please don't be fooled, it's very dangerous, barbaric and often very detrimental. For instance there's been many cases where people have permanently lost memory (apparently a third of patients report memory loss, please click here for more). I saw a documentary on TV a long time ago where one such person had apparently "awoke" as a new born baby in an adult's body, he had to be bought up through childhood all over again and taught everything, he never regained his former life memory and who knows perhaps he was even a completely different conscious being?

Lobotomy
Lobotomy is a "surgical operation" involving incision into the prefrontal lobe of the brain (yes, they slice the actual brain itself), many articles state that the procedure was formerly used to treat mental illness and that it's totally condemned today, but this incredibly barbaric procedure which effectively causes very serious permanent brain damage was actually still performed only 30-40 years ago and there's even evidence that suggests it's still occasionally performed even today! Many lobotomy patients suffered severe negative effects to their personality and ability to function independently as well as other serious complications, in fact the transformation has even been described as changing "an insane person" into "an idiot".

They have also tested and prescribed numerous drugs on mental health patients throughout history including some drugs that are now classed as dangerous illegal street drugs.

 

[LucyPurrs]

As a retired mental health professional (LCSW), maybe I can clarify some things for those looking for help. I should say this is for those in the USA.

Nowadays, psychiatrists mostly do nothing but diagnose and prescribe medication for mental health conditions. They rarely do treatment anymore (and in fact I believe their current education does not really prepare them for providing counseling or therapy).

If you want treatment/counseling (not medications) then you need to seek out either a PhD level psychologist, or a licensed clinical social worker(LCSW) or for marital and family therapy either a LCSW or an LMFT (licensed marriage and family therapist). People with a masters level psychology degree or education degrees are not trained to do therapy even though they may present as therapists. The masters level psychologists are trained to do mostly testing. Licensed mental health counselors can do treatment but I don't generally recommend them unless they have an unusually good reputation.

In all cases, you then need to find out how much experience and training they have in working with autism and what sort of approach they take in treatment. If you want coping skills then ask about those specifically as some approaches provide more of that than other approaches. You don't want to see someone who's basic approach is psychoanalytic if you want coping skills for example. Ask the therapist specifically if they can teach you anxiety management skills, or how to cope with PTSD flashbacks, or any other specific issues you need help with. Don't be afraid to call and ask questions about their training and approach before you decide who to schedule an appointment with. Just say you are looking for a good fit. How they respond will also clue you in to what they're like.

I think based on some of the posts I've read that some of you have not been with the kind of therapists who could be most helpful. And there are good therapists and therapies out there- the trick is to find them. This is why I'm posting this as a rough guideline for how to find someone. Another route would be to contact the local Autism Society to see if they maintain a list of therapists who are knowledgeable and specialize in treatment of ASD issues.

 

[Gritches]

Ha! I love that backyard football analogy, that's so spot-on.

I agree with that analogy so much because I've been bounced from one professional to the next over the years, or even over the months and weeks, and been told radically different things about myself.

Now, the people I've seen are incredibly qualified to be doing what they're doing. I could brag about who they were if I were the bragging type. But one says I'm a psychopath and a narcissist, the next week another said I was just a psychopath and not a narcissist (neither knew Autism). Then the next month, I tell a third therapist that I'm a psychopath and she laughs like a hyena and says "no, you're an Aspie who's curious about people and society."

Psychology: the doofus of the sciences. In my opinion, you're better off educating yourself and self-diagnosing, because only you know what it's like to be you, and answers about "what" you are are the first step in the process of how to deal with it. It's like any other problem/solution: Step 1, identify problem. Step 2, identify solution.

 

[LucyPurrs]

Ha! I love that backyard football analogy, that's so spot-on.

I agree with that analogy so much because I've been bounced from one professional to the next over the years, or even over the months and weeks, and been told radically different things about myself.

Now, the people I've seen are incredibly qualified to be doing what they're doing. I could brag about who they were if I were the bragging type. But one says I'm a psychopath and a narcissist, the next week another said I was just a psychopath and not a narcissist (neither knew Autism). Then the next month, I tell a third therapist that I'm a psychopath and she laughs like a hyena and says "no, you're an Aspie who's curious about people and society."

Psychology: the doofus of the sciences. In my opinion, you're better off educating yourself and self-diagnosing, because only you know what it's like to be you, and answers about "what" you are are the first step in the process of how to deal with it. It's like any other problem/solution: Step 1, identify problem. Step 2, identify solution.

"Psychology: the doofus of the sciences." I secretly agree with this but don't tell anyone

 

[LucyPurrs]

Ha! I love that backyard football analogy, that's so spot-on.

I agree with that analogy so much because I've been bounced from one professional to the next over the years, or even over the months and weeks, and been told radically different things about myself.

Now, the people I've seen are incredibly qualified to be doing what they're doing. I could brag about who they were if I were the bragging type. But one says I'm a psychopath and a narcissist, the next week another said I was just a psychopath and not a narcissist (neither knew Autism). Then the next month, I tell a third therapist that I'm a psychopath and she laughs like a hyena and says "no, you're an Aspie who's curious about people and society."

Psychology: the doofus of the sciences. In my opinion, you're better off educating yourself and self-diagnosing, because only you know what it's like to be you, and answers about "what" you are are the first step in the process of how to deal with it. It's like any other problem/solution: Step 1, identify problem. Step 2, identify solution.

Oh for god's sake Gritches, you're neither a psychopath nor a narcissist. Those folks may have credentials but in my book they were way off the mark. Glad you didn't take them seriously (you're way too smart for that thank goodness).

 

[WereBear]

since there's a higher proportion of people with autism that suffer from depression and anxiety which they often separately diagnose as "mental illness" and also because sometimes they even call ASD a "mental illness" (IT'S DEFINITELY NOT), they've let down a higher proportion of autistic people compared to the general population

In my opinion, you're better off educating yourself and self-diagnosing, because only you know what it's like to be you, and answers about "what" you are are the first step in the process of how to deal with it.

Agreed on all counts.

 

[Gritches]

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

That's...a really, really good question. Is it like their Bible where they can apply their own interpretations if they want? Because I'm pretty sure the DSM/ICD is meant to be taken literally, not that we would know anything about taking things literally.

 

[kay]

I have had one good psychologist (the first person to diagnosis me with Aspergers. (She was good, she actually listened!) There were a few ok-ish ones that were somewhat useful in a limited way. Mostly I have found the type who are basically mean and/or condescending,and/or simple won't listen. They tend to be sure my problems stem from past abuse of some kind or that I am anorexic (be careful of this one if you are a thin person, some therapist are really into eating disorders) or my dad dying when I was 11, or a social phobia. With a lot of therapist they had no interest in when my problems started they only wanted to talk about now. I had one decide I was co-dependent because I still lived at home. My first psychologist said I was gifted and that was the source of all my problems. I got that after one meeting and him looking at test scores from school. The next one actually came out into the waiting room and talked to my mom without my permission(I was 18 at the time) and told her I was just very immature and emotionally a 12 year old who wouldn't accept that the world didn't revolve around me.

I have tried asking for very specific coping skills and they pretty much turn around and ask me what I think would work. And of course if I had an idea I wouldn't need to ask them. After quite a number of bad experiences I am so nervous and feel so judged when I see a therapist that it just causes too much stress for me. If I could find a good one it might help me but I have given up looking.

I do have some nice, classic "issues" that I could use some help with such as long term resentments and that sorta thing and general anxiety. It would be nice to at least find a good therapist for that but if they don't understand my neurotype they will just cause me to feel worse.

I will say that my sister has had much better experiences, and even though not all her therapist have been helpful at least she has liked them. Her first one was very stubborn and refused to just give up and really worked with her. So yes, good ones are around if you are lucky and in the right place at the right time, but in general I think the mental health system has failed. There should be a lot more consistency. It's all about the individual therapist you see and it shouldn't matter about that quite so much.

Mostly they have a one size fits all approach, think all women are the same, and try to make you more "normal". My last good experience was with a hospital provided therapist (free for family of patients) who told me where the art room was. A good art room is the best therapy you can get. I miss the art room.

 

[LucyPurrs]

I have had one good psychologist (the first person to diagnosis me with Aspergers. (She was good, she actually listened!) There were a few ok-ish ones that were somewhat useful in a limited way. Mostly I have found the type who are basically mean and/or condescending,and/or simple won't listen. They tend to be sure my problems stem from past abuse of some kind or that I am anorexic (be careful of this one if you are a thin person, some therapist are really into eating disorders) or my dad dying when I was 11, or a social phobia. With a lot of therapist they had no interest in when my problems started they only wanted to talk about now. I had one decide I was co-dependent because I still lived at home. My first psychologist said I was gifted and that was the source of all my problems. I got that after one meeting and him looking at test scores from school. The next one actually came out into the waiting room and talked to my mom without my permission(I was 18 at the time) and told her I was just very immature and emotionally a 12 year old who wouldn't accept that the world didn't revolve around me.

I have tried asking for very specific coping skills and they pretty much turn around and ask me what I think would work. And of course if I had an idea I wouldn't need to ask them. After quite a number of bad experiences I am so nervous and feel so judged when I see a therapist that it just causes too much stress for me. If I could find a good one it might help me but I have given up looking.

I do have some nice, classic "issues" that I could use some help with such as long term resentments and that sorta thing and general anxiety. It would be nice to at least find a good therapist for that but if they don't understand my neurotype they will just cause me to feel worse.

I will say that my sister has had much better experiences, and even though not all her therapist have been helpful at least she has liked them. Her first one was very stubborn and refused to just give up and really worked with her. So yes, good ones are around if you are lucky and in the right place at the right time, but in general I think the mental health system has failed. There should be a lot more consistency. It's all about the individual therapist you see and it shouldn't matter about that quite so much.

Mostly they have a one size fits all approach, think all women are the same, and try to make you more "normal". My last good experience was with a hospital provided therapist (free for family of patients) who told me where the art room was. A good art room is the best therapy you can get. I miss the art room.

Of course being a LCSW I am biased, but in general I've found that social work therapists tend to take into consideration the whole person, including family background and relationships and life experiences whereas psychologists have a more narrow focus. I also feel that LCSW's tend to have more respect for their patients in general and are less apt to be know-it-alls and therefore more likely to listen to what their patients have to say. But like I said, I'm biased

 

[VioletHaze_03]

Here's the thing. It makes sense that the mental health conmunity failed us. Autism is not a mental illness or a health condition. I think that while mental health professionals are trying their best to help us, they're just not equipped to do so. We need a specific category/manual for those with disabilities. Mental illnesses are not disabilities, and vice versa. Each case needs a different stratagy to be effectively treated, and maybe some day we'll have effective stratagies for autism. We just need to keep fighting until that happens.