Know What to Expect from an Alzheimer’s Disease Diagnosis

If you have a parent, grandparent or other aging family member suffering from Alzheimer’s disease, just knowing what you may expect as the disease progresses can offer some comfort.

Not all sufferers of Alzheimer’s will experience the same symptoms, and the speed of their decline may vary as well.  But no matter what your experience with the disease may be, it can no doubt be a painful one.

It’s difficult to place an individual with Alzheimer’s disease into a specific stage since the phases they go through may actually overlap a bit. However, the Alzheimer’s Association has identified seven stages of Alzheimer’s disease based on research from Barry Reisburg, M.D., the clinical director of the New York University School of Medicine’s Siberstein Aging and Dementia Research Center.

The Seven Stages of Alzheimer’s Disease

Stage 1 – Normal/No Impairment: This person has not experienced any memory-related issues and overall is mentally healthy. They have no problems with judgment, communication skills or daily activities.

Stage 2 – Normal Forgetfulness/Very Mild Decline: Half of all people over age 65 begin noticing some cognitive difficulties, but this is considered a normal part of aging. Occasional lapses of memory occur but aren’t noticed by family or friends.

Stage 3 – Mild Cognitive Impairment/Early Confusion: Your loved one may experience mild changes in memory, behavior, and/or communication skills. They may have trouble recalling names or words, have difficulty with planning and organization, performing daily tasks, misplacing objects and forgetting things they just learned.

Stage 4 – Mild Alzheimer’s/Moderate Decline: Cognitive impairment symptoms are more obvious at this stage and an Alzheimer’s diagnosis can be given. Your loved one will exhibit confusion completing tasks like cooking, driving or shopping. They may forget recent events or conversations and have trouble handling their finances. They may also withdraw socially and experience mood swings or depression.

Stage 5 – Moderate Alzheimer’s/Early Dementia: Your loved one will require assistance with day to day activities at this stage and will not be able to live alone anymore. They will experience severe memory loss, disorientation over what day or season it is and decreased personal hygiene skills. However, it is common in this stage for the sufferer to still recognize significant family members and may not need assistance with using the restroom or eating yet.

Stage 6 – Moderately Severe Alzheimer’s/Middle Dementia: At this stage your loved one loses the ability to recognize family and has noticeable personality changes, like paranoia, suspiciousness or extreme anxiety. They’ll need help with many basic tasks, from dressing to eating. They may begin to wander and withdraw from their surroundings, or show signs of agitation and hallucinations in the late afternoon or evening hours.

Stage 7 – Severe Alzheimer’s and Dementia: In this final stage, the sufferer will no longer be able to respond as communication has become very limited. Help will be needed around the clock for all daily personal care.  Your loved one may no longer be able to walk or even sit up as their physical systems have deteriorated.

No two Alzheimer’s patients are the same, and each person will progress differently.  American Senior Communities supports goals of the Alzheimer’s Association and offers memory care services at most of its 65 communities located throughout Indiana when you can no longer care for your loved one at home.

 

The Importance of an Early Alzheimer’s Diagnosis

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bigstock Nursing home 5696886 300x220 - The Importance of an Early Alzheimer’s DiagnosisAccording to the Alzheimer’s Association’s 2016 Alzheimer’s Disease Facts and Figures, every 66 seconds someone in the country develops Alzheimer’s disease, which is the sixth leading cause of death. Alzheimer’s disease, the most common form of dementia, is a degenerative brain disease with  symptoms that gradually worsen over time.

It’s vital to pay attention to the warning signs of Alzheimer’s disease in aging loved ones. While momentary lapses in memory are normal among seniors, some of the common Alzheimer’s symptoms include more disruptive memory loss, such as struggling to complete daily tasks or effectively communicate, confusion with vision, time and/or place, misplacing objects and being unable to retrace steps to find them.

Why Early Diagnosis of Alzheimer’s is Key

If you think your loved one is displaying any of the warning signs for Alzheimer’s disease, don’t hesitate to get a proper diagnosis. Recent studies have shown that an early Alzheimer’s diagnosis can lead to treatment or therapies that can help slow or even stop the progression of the disease. Some of the advantages early diagnosis provides are:

  • Possibly reversing or properly treating symptoms. Early diagnosis of Alzheimer’s allows your loved one to explore different treatment options that can alleviate some of the symptoms, ultimately leading to more independence for a longer length of time. If the diagnosis proves not to be Alzheimer’s, treatment of some of the reversible conditions help improve brain function and reduce symptoms.
  • Allows time for planning for the future. Early diagnosis provides an opportunity to make plans for your loved one’s future healthcare needs. It can also prevent your loved one from making choices that could be detrimental, like moving away from family or friends.
  • Empower loved ones to participate in decisions. Likewise, your loved one will have a voice in some of the decisions made regarding his or her long-term care options, as well as in financial and legal matters. It’s much easier on family caregivers when loved ones’ wishes are made known in advance.
  • Receive the care and support you and your loved one need. Getting the proper care and finding supportive services will allow improve quality of life for all those involved. Joining a support group early on provides an opportunity for learning strategies for dealing with the Alzheimer’s diagnosis and coping with the symptoms.
  • Advocate for more research. You will not only learn more about the disease, but your loved one can also take part in clinical trials and advocate for more advances in research. Clinical trials also help empower your loved one, allowing them to feel like they are making a change, both for their own care and the future care for their children and grandchildren.

Studies show that an accurate Alzheimer’s diagnosis is more easily possible when a complete history can be taken early on, while your loved one is still able to communicate effectively, answering questions and voicing concerns. Once the brain has been more affected by the disease, a proper diagnosis can become difficult.

 

Self-diagnosis on the internet – a cure for all ills?

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Apparently I’ll be out of work soon – all my patients will be too busy diagnosing themselves over the internet to visit me. New statistics suggest that one in five of us is self-diagnosing rather than seeing a doctor – and while some of that is down to well publicised shortages of GPs and therefore GP appointments, it’s not the only reason. Apparently nearly half of those surveyed said they would rather check the internet than miss a lie-in, and 38% wouldn’t rearrange a shopping trip if they were offered a GP appointment that clashed with their social engagement.

The internet is like a curate’s egg – good in parts. I use it hundreds of times a day – in fact, I rarely end a consultation without having directed a patient to at least one reliable website (almost always Patient, of course) so they can find out more about the diagnosis I’ve explained to them. But at the other end of the spectrum it can leave my patients totally fixated on an idea, and it’s usually the worst-case scenario. These days, my patients often greet me with ‘I’m sure I’ve got a brain tumour/multiple sclerosis/cancer because this website said…’. Just occasionally they’re quite right – but far more often they’ve suffering agonies of picturing their imminent demise, when in fact they have a simple cold, or they’ve slept heavily leaning on a nerve etc.

Of course, it works both ways. Checking out bleeding from the bottom on the internet might tell you that you have nothing more to worry about than piles – when a rectal tumour is a rare but disastrous cause to miss.

I remember headlines in the British Medical Journal about a study showing that putting symptoms into a web search was more likely to come up with the right diagnosis than seeing a doctor. But this is where the adage ‘garbage in, garbage out’ applies. Firstly, you need to know which symptoms might be connected. For instance, if you were feeling breathless when you exercised, would you think to check if your ankles were swollen? Heart failure (where your heart doesn’t pump blood efficiently enough round your body) can cause both. If the skin around your midriff became red, sore and itchy, would you know to tell Dr Google that you’d been wearing a belt against your bare skin a few days earlier? Contact dermatitis (a skin allergy) to nickel can keep getting worse after the culprit has been removed.

I decided to try out this self-diagnosis lark for myself, trying to put my medical knowledge to one side. I went onto a website I trust completely, for very good reason – it’s written entirely by GPs for GPs and their patients, so it’s exactly the information you’d get from a visit to your doctor. Using the Symptom Checker tool on Patient, I entered my name, gender, and a single symptom, headache – and pressed ‘search’.

Migraine and sinusitis (common) came up first. But below them were eight other possible causes including three with ‘red flags’ indicating that they were medical emergencies – brain tumour, giant cell arteritis and intracranial haemorrhage. When I entered two other symptoms of the migraines I suffer from – sensitivity to light and to sound – migraine was the top diagnosis but others included rabies and delirium tremens (acute alcohol withdrawal). The website’s answers were accurate but frankly terrifying – even as a doctor I found myself wondering briefly if maybe, just maybe, my next migraine could be something more sinister. The trouble is, they can’t risk missing the bad news out because for one in 100 or maybe one in 1000 people it might be true. As a result, the other 99.9% of searchers get the same bad news.

As I would expect from a responsible website, the Patient symptom checker has a proviso at the top which reminded me that ‘You may be alarmed by some of the suggested diagnoses. Based on the symptoms you entered they are possible, but most are very unlikely to apply to you. It’s important that you carefully read about each result and speak to your doctor before reaching any conclusions’. But that’s the problem with internet diagnosis – my eye kept being drawn back to the emergencies.

When I see a patient with headache, the worst case scenarios are all in my mind – meningitis, brain tumour, bleed into the brain. But I take a full history and do a full examination, and the first the patient hears of these diagnosis is when I reassure them that they have no signs or symptoms which suggest anything worse than tension headache etc.

So should we be advising patients to steer clear of the internet? Absolutely not – doctors see you for a few minutes, while you live with your condition 24-hours-a-day. For people with long-term conditions like asthma, heart disease, diabetes etc, it’s essential that you take control of your own care, working with your healthcare team. Having access to reliable online information is invaluable.

But where self-diagnosis is concerned, be warned – Dr Google is entirely unpoliced. Even if the information is accurate, it doesn’t come with a sugar coating and doom and gloom prevails. A study in the British Medical Journal this year concluded that ‘Symptom checkers had deficits in both triage and diagnosis. Triage advice from symptom checkers is generally risk averse, encouraging users to seek care for conditions where self-care is reasonable.’ In other words, you’re more likely to end up scared witless than lulled into a false sense of security. Maybe I’m not going to be out of a job – but it’s certainly going to be bad for my waiting times.

Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.

‘Cyberchondria’: self-diagnosis and self-help

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The internet has made ‘experts’ of us all. All doctors are keen on informed patients, but anyone can make any claim on the internet, and some of it is dangerous nonsense. By all means learn more about your condition, but let your doctor do their job.

Online helping hands

If you go online for health information, stick to reliable sources of information like patient.info. Your GP may be able to recommend good websites for your condition too

The internet can be your medical friend. Many practices in the UK have websites where you can book appointments or order repeat prescriptions.

Why early detection matters

When I became a GP, the internet wasn’t invented. Even for the first few years after it came along, I didn’t know how to use it – and neither did most of my patients. Of course, most of us see it as a mixed blessing, and that’s certainly true for doctors. It means I can print out full information for my patients on thousands of conditions at the touch of a button. But it’s also led to a flood of worried patients with ‘cyberchondria’ – hypochondria brought on by too much self-diagnosis on the internet.

Sadly, all too often when people do have symptoms they bury their heads in the sand for fear of getting bad news. But it’s crucial to remember that if there is something serious, your chances of full recovery are much better if you get diagnosis and treatment early. What’s more, treatment is often much less invasive and challenging at an early stage. For instance, breast cancers picked up by screening are more likely to be curable just by removing the lump than the whole breast. And early bowel tumours can often be treated with relatively minor surgery, rather than taking out much of the intestine and having heavy-duty chemotherapy.

Bleeding from the bottom is a case in point. Bright blood on the paper or in the pan, perhaps after a bout of constipation or with pain when you open your bowels, is usually caused by piles. These often don’t need treatment and increasing the fibre in your diet cuts your chance of future problems. Dark red blood mixed in with the stool, or a change to looser or more frequent stools (or being off your food, losing weight for no reason and feeling tired) could be a sign of bowel cancer. But if you have bleeding from the bottom for the first time, it’s always important to get it checked out. Very rarely, a tumour just inside the bottom could cause similar symptoms to piles, and relying on self-diagnosis could lead to dangerous delay.

Don’t forget your pharmacy!

If you’re worried about bothering the doctor, or find it hard to get an appointment, try your pharmacist in the first instance. They can be a mine of information and will tell you if you need to see a doctor.

Questions your doctor is likely to ask

If you do see your doctor, there are lots of questions you can have answers ready for which will help. For instance:

– How long have you had the pain/swelling/breathlessness?

– What makes it better or worse?

– Does the pain go anywhere else?

– Other symptoms you’ve noticed around the same period

– If you’ve started new medication (including non-prescription tablets) recently

– If close contacts have had similar symptoms

Do expect to be examined and dress accordingly – you have no idea how often I see patients with an intimate problem who seem shocked when I say I need to take a look! And if you think you might need to be examined, try not to attend with young kids in tow – explaining what’s going on behind the curtain can be embarrassing.

More tips to make the most of your appointment:

· If you’ve had symptoms for a while, write down when they started before your appointment. Likewise, if you’re having any gynaecological problems, write down details of your last period, the length of your cycle etc. It may sound obvious, but at least half my patients promptly start rummaging around in their diaries when I ask

· If you have a tooth problem, please don’t come to see me. Doctors are not dentists – dentists are dentists. I know no more about dental problems than you do, but it doesn’t stop many patients.

· If you have any urine symptom, always bring a sample – you can get a specimen bottle from the GP reception.

· Finally, don’t save all your problems up and bring a list to a 10-minute consultation. If you have several problems, ask the receptionist if you can book a double appointment. Your doctor and you will both feel less rushed – and you’re more likely to get all the answers you need.

With thanks to ‘My Weekly’ where this article was originally published.

Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.

Robin William’s Suicide and Connection with Dual Diagnosis

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I have been deeply impacted emotionally by the news of Robin William’s suicide and have found myself shedding tears as I think about the pain that he must have been experiencing and if the outcome could have been different.  By nature, I try to find meaning when there is difficulty, and find inspiration from existential concepts—specifically the Viktor Frankl quote “suffering ceases to be suffering the moment that it finds meaning”. 

So what meaning can we make from this tragic death of Williams?  Newsweek.com reported that the actor had been suffering from anxiety, depression and recently was diagnosed with early stage Parkinson’s Disease http://www.forbes.com/sites/danmunro/2014/08/14/robin-williams-and-the-devastating-diagnosis-parkinsons/.  It appears that Williams had dual diagnosis—meeting diagnostic criteria for both a substance addiction (either active or abstinent) and a mental health diagnosis.  Dual diagnosis requires more than abstinence from drugs and alcohol, it requires addressing BOTH addiction and mental health symptoms.  If mental health issues are untreated, this can lead to addiction relapse and if addiction issues are neglected this can lead to an escalation in psychological symptoms—the worst case scenario being self-harm or suicide.  The latest information revealed by his wife is that Williams suffered from Lewy Body Dementia, and that he had been previously misdiagnosed with Parkinson’s Disease. Life stressors can increase mental health symptoms for those with dual diagnosis even when they are sober from drugs and alcohol.  Therefore, ongoing care is recommended and can include: individual therapy, self-care (regular sleep, healthy nutrition, moderate exercise), social support (group therapy, support groups), spiritual pursuits and as needed medication management with an addiction specialist prescriber.  Which leads me to wonder if Williams had reached out for additional support for worsening mood symptoms since finding out about his medical diagnosis? 

The part of me that is searching for answers regarding William’s suicide continues to ponder what he or others could have done differently?  When I move beyond my sadness about this story, I experience the dialectic of both the fragility of the human psyche and the continued strength needed for individuals to increase awareness about dual diagnosis symptoms and treatment. 

When we are afraid and we do not reach out for personal or professional support, power is given to our fear and darkness takes over.  I admire that Williams maintained his sobriety, however his silent suffering emphasizes the need for those who are recovering from an addiction to obtain necessary psychological and medical care.  Addiction and mental health diagnoses and treatment are “grey” areas and those who are close to and have been touched by the life of Robin Williams may never obtain the resolution that they may be seeking.   Instead, we can use his story as a reminder that despite fame, success and talent, we are fundamentally human and need to reach out for help when darkness sets in. 

For resources or information about high-functioning alcoholics, please visit www.highfunctioningalcoholic.com

Do You Need a Diagnosis to Get Some Help?

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“Hi, we’re doing a quick survey on mental health and the community. Can you take a moment?”  

Not exactly what those enjoying Harlem Week on a slightly overcast but very warm Sunday in August expect to hear. Now in its 40th year, Harlem Week is a seven-day celebration of Harlem’s rich cultural, economic and political history. Festivities include over 100 events and, by week’s end, over 2 million people from throughout the New York metropolitan area as well as tourists will experience the dynamic mix of African, African-American, Caribbean and Latin culture that is Harlem.

This is the second year the East Side Institute for Group and Short Term Psychotherapy and the Social Therapy Group

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teamed up to conduct a survey on mental health at Harlem Week. A team of more than a dozen therapists and other mental health workers, educators, clients and students is out on the final Sunday afternoon, their table just one of hundreds that line both sides of three long city blocks. Vendors offer a variety of colorful wares, a multitude of services and a dazzling array of food to eat. Music—gospel, jazz, Motown, R&B—is everywhere, which can sometimes make it hard to hear the people they’re speaking with, but it doesn’t stop from having lively conversations.

Over four hours, hundreds of people pass by the table, with over 100 stopping to talk and take the survey. Ranging in age from teenagers to grandmothers, those who stop are from all races and ethnicities, and include a number of families, with mothers and fathers able to offer thoughtful opinions on diagnosis even as their children tug at them, eager to get to the games, ice cream and other excitements that await.

Six weeks later, the team will be at the annual Atlantic Antic, known in New York City as “the street festival to end all street festivals.” Spanning four neighborhoods in downtown Brooklyn, it’s the city’s largest one-day street festival, and draws tens of thousands of people to Atlantic Avenue where they celebrate Brooklyn and enjoy free performances, storytelling, face painting, an abundance of food and, more often than not, cool and crisp autumn weather. Those who stop are black, Latino, and white, from all walks of life and a variety of professions, all concerned to share what diagnosis, and the lack of easy access to quality mental health care, means for them, their children, and their communities.

The East Side Institute is in the process of reading and analyzing the survey results and will have a comprehensive report after Atlantic Antic. Until then, here a (mostly impressionistic) sneak peek at some of what Harlem Week folks told the survey takers. 

  • When we asked if people need to get a diagnosis to get help, nearly 50% said flat out, “No.” We asked why, and they told us that everyone is different, people need support, and they need to talk to someone.
  • Of those who said “yes” to diagnosis, more than half gave pragmatic reasons—without a diagnosis you won’t get someone to see you and talk to you; it gets you help, but doesn’t tell anyone how to help you.
  • The remaining  “yes” responses indicated more of a buy-in to psychiatric diagnosis and the medical model (“You wouldn’t know how to help without it.”)..

While making no claims that these data show anything conclusive, I find these responses very interesting and even hopeful. There appear to be plenty of ordinary people who haven’t completely bought the pseudoscientific claims of the psychiatric and mental health establishment.

Seinfeld Recants Autism Diagnosis

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So now Jerry Seinfeld isn’t autistic after all.  When asked about his controversial self-diagnosis by a reporter from Access Hollywood last week, Seinfeld said definitively, “I don’t have autism. I’m not on the spectrum.”

I completely respect Seinfeld for not being afraid to reverse his position once he realized his previous statement was being taken literally when it seems he was speaking metaphorically:  “I just was watching this play about [autism] and thought, why am I relating to something?” he clarified. “I related to it on some level. That’s all I was saying.”

Seinfeld is far from alone in his casual use of strictly defined terms from the mental health arena. Advocate Rebecca Fuoco recently posted an article on Huffington Post about this very issue. “Using names or acronyms of mental illnesses to hyperbolize innocuous idiosyncrasies and experiences has become pervasive in our cultural dialogue,” she observed.

Fuoco didn’t include autism in her list of examples – focusing instead on OCD, PTSD and schizophrenia – but she very easily could have. In 2012, New York magazine published a piece by Benjamin Wallace about exactly this, how “Asperger’s” and “autism” have become a “one-stop shopping shorthand for the jerky husband, the socially inept plutocrat, the tactless boss, the child prodigy with no friends, the remorseless criminal…some murky hybrid of egghead and aloof.”

But as tempting as it is to toss around diagnostic labels, it’s a dangerous game – as Seinfeld discovered when he faced an onslaught of criticism from parents whose autistic children suffer devastating impairments. Fuoco agrees:  “It is important we end this trend…because making these flippant references (1) trivializes how devastating the illnesses can be and (2) perpetuates myths and misunderstandings.”

It’s also fundamentally dishonest. “Having Asperger’s-like syndrome does not give you Asperger’s,” argues a therapist quoted in the New York essay.  And although the Diagnostic and Statistical Manual of Mental Disorders no longer recognizes Asperger’s as a separate diagnosis, the diagnostic criteria for autism spectrum disorder are very clear, requiring that symptoms “cause clinically significant impairment in social, occupational, or other important areas of current functioning.” In other words, those who argue that autism is just a difference, not a disability, are wrong by definition. If a person’s symptoms aren’t disabling – which I think is a fair synonym for “clinically significant impairment” – then s/he doesn’t meet the criteria for an autism diagnosis.  That’s not to say there aren’t high-functioning individuals with autism, because of course there are many. Their symptoms may be less obviously disabling than those on the severe end of the spectrum, but they are often isolating, resulting in limited social and employment opportunities. One 2013 study found that over 80% of autistics aged 21-25 still lived at home.  

What to do? Unfortunately, I don’t think there’s much we can do to redeem the word “autism.” The general public is much more likely now to associate quirkiness, even brilliance, with autism than the profound challenges more typically faced by those with the disorder, who are often intellectually disabled (40%), non-verbal (25%), aggressive and/or self-injurious (50%) and prone to dangerous wandering (50%).  But the Seinfeld controversy did raise a cry I’ve heard before, to undo the work of DSM-5, which merged Asperger’s, PDD-NOS and Rett Syndrome into the larger autism diagnosis. “What I am proposing,” wrote Marie Myung-OK Lee in Salon, “is separating the high-functioning end of the spectrum – perhaps calling it something else – so that we can focus on the urgent and looming issue at hand.” Alison Singer, president of Autism Science Foundation, believes it’s severe autism that needs a new name: “If autistic self-advocates are so proud of their autism, they can keep the term. We could then choose a new word to describe the type of autism that is relentless, aggressive, abusive, painful, constant and overwhelming.”

This type of classification is used in other disorders, especially those that, like autism, fall along a broad continuum. Many people have varying degrees of visual impairment, but only those at the tail end of the spectrum are blind. Those individuals who meet clinical definitions of deafness or obesity certainly have some things in common with those who are hard of hearing or overweight, but the severity of these cases necessitates greater support and intervention, and everyone easily appreciates those differences.

Not only would this change clarify matters for the general public, but I really believe it would bring peace to the enormous and deeply divided autism community. Autistic self-advocates and parents of severely autistic children are constantly at war over whether or not autism should be cured and the best types of treatments, educational strategies and accommodations we should pursue with our always limited local and federal budgets. Separating out these diagnoses would let those most affected by each pursue the most appropriate agenda, which seems like it would be a win-win for everybody.

Asexuality is Not a Diagnosis

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“DSM isn’t a bible.”

No, but it is created by psychologists, who base what to put in it on scientific investigation. I personally don’t believe textbooks OR bibles “prove” anything, but you’re the one who’s obsessed with authority (considering your first comment sought first and foremost to convince me I don’t have any business writing anything in Psychology Today), so I figured you might respect it. Apparently even if scientists collectively agree on something–scientists in this field, whose work you still refuse to read while laughing at me for agreeing with them–you will reject it if it serves your own agenda.

Let’s make no mistake: you have a really unfortunate personal problem with asexuality, which you are irresponsibly trying to hide behind extreme desire to defend science from people whose experiences you believe threaten it. You kept going after me on how I’m *just a writer*, but aren’t you *just a person in some sort of undisclosed science whose biased views also aren’t a bible*, and aren’t you *just a human*? You go on and on about how you’re ever so important and ever so unable to waste time on this nonsense, but here you are, day after day, comment after comment, claiming MY continued responses here are indicative of mental illness. (Again, it’s disgusting that anyone claiming to care about the sanctity of science would weaponize diagnosis, psychology, and mental illness this way.) It’s pretty clear that I have a reason to be invested in this topic. I don’t know what you’re pretending your excuse is, though. Your opinions are all the more vile because you’re pretending they aren’t opinions, but you couldn’t even mask your personal disgust long enough to keep from ruining your “logical” facade by making broad generalizations about Tumblr users and mocking me for my supposed association with an entire group of people you believe are self-evidently ridiculous.

“You clearly love being outraged to play Damsel”

I know you keep bringing this up and that it appears to be your personal Issue right now, but damsel in this context does not make sense. I saw you try it above claiming that Tom could not “white knight” against you because you’re a woman, so clearly anyone who disagrees with you is actually swooping in to save me instead of, you know, disagreeing with you. Quick distract everyone by pretending this is about gender dynamics! And then you did it again and a third time, claiming this is all about me needing attention and crying about my victimhood . . . except that the only person, literally the only person here, who is attacking me over this is you. You don’t merit outrage. Your comments are whiny and groundless and mildly incoherent, but they are not outrageous. They are actually exactly what I wrote about above–poorly reasoned, specious, and grounded in personal hatred of what you don’t understand. I’m not crying persecution and screaming for rescue and pretending to be helpless just because I point out the biases, compulsory sexuality, and preconceived notions that people taken for granted when approaching sexuality-related subjects in their lives. I’m the one actively taking the steps to stop these things from hurting more vulnerable people. It’s pretty entertaining to see my actions portrayed as anything even remotely passive.

“Misquoting my replies to other people doesn’t make you look good, it makes you look insane. On some level, you must understand this because you daren’t link to me.”

. . . I do not know what or where you think I should be linking you. I’m not “misquoting” whatsoever, and I am discussing your words in the exact same place that you’re putting those words, so it is not obscured what you’re really saying. (But I guess if you’re that determined to believe I’m out to get you, go for it.) I’m sarcastically rephrasing what your comments sound like to me, and despite that you are appealing to the masses claiming they would all unanimously agree with you, everyone else in this thread disagrees with you too. So do my followers on Tumblr and the people who saw what you said on Twitter. Not a single person has come here to say “hey, that scientist person, they’re the one that has a point!” And it’s easy to see why.

“You aren’t that special, nobody objects to you personally because you simply aren’t on their radar of those important enough to notice. You’re hiding behind other (scientific) people I would much rather read by the sounds of it (maybe they chose you because you’re free or some such)”

Keep telling yourself that. I would actually appreciate it if you’d go read some of those folks, but I did not quote them because I was “hiding behind” them. You’d already made it clear that I’m a woman talking about my feelings on a blog and that’s not scientific (even though it was an entire article about how sexual orientation is not a description anyone proves through scientific inquiry or experimentation), so I did not recommend my own book to you (the first book on asexuality that was published by a mainstream publisher for layperson audiences), nor did I suggest the multiple other asexuality-related pieces I’ve sold or the interviews I’ve done. You appeal to authority over and over again, calling out this magazine to shut me down because you deserve better, but when I recommend a source you would theoretically trust if you were not biased (e.g., the DSM), you of course have reasons why that isn’t enough either.

As for not being on the radar enough for *anyone* to notice me, well, you do seem to be a fan of evidence, as well as a fan of authority, so maybe it will make a difference if I tell you exactly who has respected my work in this field enough to give it a platform (though it is, explicitly I say, not scientific work I am doing; I am DESCRIBING this community and my experience as part of it, and that is not a worthless thing).

My book was excerpted in TIME Magazine. It was featured in the New York Times. I was interviewed in the Washington Post because of my work. The book was given a starred review in Library Journal. I have been interviewed on the BBC twice, on international television twice, and have done guest lectures about asexuality at various events and places of higher learning, including University of Virginia, Creating Change in Atlanta, and Princeton University. I have had extensive interviews published in Marie Claire, Salon, the Daily Beast, and the Huffington Post (plus more than a dozen smaller publications). I was quoted liberally (no, not mocked by the researchers) in an academic examination of asexuality that was published in the journal Contemporary Sexuality, and I was cited several times (again, not mockingly) in a law paper that was published in Stanford Law Review. I was in a documentary on this topic that has been rated on Netflix over 125,000 times (so who knows how many hundreds of thousands more have watched it without rating). And my book is now a finalist for the Lambda Award, the most prestigious book award in the LGBT world. But it doesn’t really matter that I trotted all this out, because when people who say the things you’ve said demand evidence that anyone important cares and I give overwhelming examples of people in high places who do not think I’m a blubbering woman with a persecution complex and multiple mental health issues (you know, since that is something logical and truth-driven people routinely mock) . . . they always say it does not matter. Because it is never actually about who respects me, even though people in your shoes frequently do go on like this:

“Your writing cannot stand alone and would never pass peer review scrutiny in a million years in academic publication.”

. . . Good thing I am not and never have claimed to be submitting academic papers for publication, but I digress. My writing, however, does seem to be standing alone, as my book just by itself went into its second printing very soon after it came out and continues to sell reasonably well for a book on a niche subject and, I say again, has been designated a finalist by the Lammy authorities. It is funny that you think your baseless comments about no one listening to me have any basis in reality, though. More bullying tactics from a person who knows they are not coming from an evidence-based position, but are determined to claim that good old stump for logic and science.

“You’re trying to turn this into something it isn’t, doubtless to profiteer later. Without asexuality, you wouldn’t have a job, unless you count writing books about fairies (that is more your level of expertise).”

Writing about asexuality isn’t my job, though I’ve made plenty of nice side money doing so. I’ve been employed for all of my adult life, so trying to rub my face in my failures is shockingly low as well as untrue. And the attempted insult about *writing books about fairies* is funny too. Who knew that also being a fantasy novelist would be something a clueless person with a vendetta would attempt to spin as evidence of my being unfit to write other things? Ah, the straws people like you grasp at–anything to turn your blatant personal attacks into veiled condescension that you think works to subtly undermine my credentials.

“your anti-science approach (personal emotionality>medical evidence from fields like endocrinology, which you predictably ignore), take everything personally when you’re supposedly discussing the medical human body, plural, and berate skepticism in a field trying to shed liberal arts-level pandering to anecdote over evidence.”

See, you’re seeing what you want to see, not what I wrote. “Personal emotionality” was not even on the radar, and it was not what I said–even though I and the other commenters pointed it out to you explicitly, you couldn’t stop with your hatemongering for asexuality (“that doesn’t exist!”) long enough to understand that sexual orientation isn’t an ~emotion~. It is a description of who you feel attracted to. And I don’t think it’s unscientific to say that when you name a feeling, it’s actually supposed to be based on your feelings.

If you believe that *endocrinology* and other biologically based fields are able to create tests that would be the sole arbiters of what sexual orientation is, you are not even listening to the basic thesis statement of this piece. Occam’s Razor notwithstanding, sexual orientation is not determined by a biological reaction. Pretending otherwise is not “scientific.” It is one-dimensional oversimplification. First of all, asexual people *have been tested in a lab* in one of the studies I mentioned above (which you again refuse to read because you are already sure that asexuality doesn’t exist–very scientific of you–but it doesn’t matter much because one of the people who administered the study was instrumental in getting the current DSM to recognize asexuality as not a sexual aversion disorder based on what she found through research on our community, and in your world that probably ruins her credibility). Their sexual response to stimuli was the same as the non-asexual people in the study. They identify as asexual because they don’t find anyone sexually attractive. Not because their bodies or minds have a dysfunction (at least, not by definition). I’m assuming you did not even know that asexuality means people who don’t find anyone sexually attractive, given that you won’t stop harping on how biological reactions are what proves someone has a sexual orientation.

But secondly, hey, let’s go with your oversimplified black and white view and say that if someone has the ability to become aroused and you test them with various stimuli, you can definitively say what sexual orientation that person is. I guess if a man becomes aroused while watching a guy-on-guy film and yet insists he is not gay, there is no possible explanation for why he would get an erection except that he is lying. Same with sexual arousal that seems to come out of nowhere, or when someone gets aroused when they’re nervous. We can just oversimplify and pretend sexual arousal is sexual attraction, that endocrine systems and stimuli and biological normals are all we need to examine, and that variations like asexuality are far more likely to be fairly rare diseases than to be an asexual orientation.

And, if your example is any indication, the correct way to react to people whom we think have disorders, mental health problems, and diseases is to repeatedly urge them, with condescension, to “get help,” offer them pity, compare them to children having tantrums and also to teenagers behaving inappropriately, gaslight them by asserting that their reality is wrong, post multiple strongly worded statements about how broken you think they are, and tell them they are immature. (The preoccupation with “maturity” here is pretty typical with folks like you too. Anything you can desperately grasp at to weaponize. It generally doesn’t work very well with people who aren’t insecure about their maturity. I am honestly surprised that you did not add on the usual accusation of my probable childhood abuse or suggest that no one loves me, “explaining” my supposed need for validation. But none of you can hit all the bingo card squares by yourselves.)

I think it is time for you to reply to my comment by reminding me how little of your time I deserve as you give it to me anyway.

Day 5: Paula Caplan on Bias in Psychiatric Diagnosis

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TFOMHIS%20Image 4 - Day 5: Paula Caplan on Bias in Psychiatric Diagnosis

Source: Eric Maisel

The following interview is part of a “future of mental health” interview series that will be running for 100+ days. This series presents different points of view about what helps a person in distress. I’ve aimed to be ecumenical and included many points of view different from my own. I hope you enjoy it. As with every service and resource in the mental health field, please do your due diligence. If you’d like to learn more about these philosophies, services, and organizations mentioned, follow the links provided.

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Interview with Paula Caplan

Activists in what is variously called the critical psychology, critical psychiatry or antipsychiatry movement tend to agree that what is called “psychiatric diagnosis” is more a linguistic game and a power play than anything scientific or medical. Here researcher and activist Paula Caplan shares her views on the unscientific nature of so-called psychiatric diagnosis.

EM: You’ve written on the subject of bias in psychiatric diagnosis. Can you share some of your headlines on that subject?

PC: Despite what is widely believed, psychiatric diagnosis (1) is unscientific, (2) almost never leads to reduction of human suffering, and (3) carries a wide array of risks of harm, including death. If they do not diagnose you, they cannot “treat” or treat you, but once they diagnose you, they can justify just about anything on the grounds that they are treating a mental illness. Psychiatric diagnosis is entirely unregulated, making it even less regulated than the financial institutions that so damaged the U.S. economy. As a result, those who are harmed have no recourse.

I organized the filing of nine complaints with the American Psychiatric Association (because it publishes and massively profits from the Diagnostic and Statistical Manual of Mental Disorders), and they dismissed them on totally absurd grounds and with no attention to their merits. The U.S. Department of Health and Human Services’ Office of Civil Rights did the same with the five complaints I helped file there. This provides a paper trail proving that no one is regulating psychiatric diagnosis or providing redress from harm or trying to prevent future harm, and no one with any power intends to do so. Lawsuits must be filed to stop this.

EM: You’ve also written about mending the mother-daughter relationship. What in your view can help heal that relationship?

PC: Understanding that in our still sexist society, mothers and daughters are often set up against each other by a set of myths about mothers, and understanding those myths can help lead to healing of rifts between them. Mothers and daughters are often, and have the potential to be, each other’s advocates.

EM: You take a special interest in veterans’ issues. What are your thoughts on the emotional and mental health of veterans?

PC: Active duty military people and veterans—like many people who have not served in the military—are overwhelmingly often diagnosed as mentally ill when in fact their suffering is actually the manifestation of understandable responses to trauma (often war trauma or rape trauma) or other upsetting, disorienting experiences such as the huge culture shocks of going from civilian life to the military and back again … with the many changes and losses that that can involve. I believe it is unconscionable for therapists to classify such reactions as mental illness, because (1) psychiatric diagnosis is unscientific and almost never leads to reduction of suffering, (2) psychiatric diagnosis often leads people in wrong and harmful directions to try to alleviate suffering, leading them away from the huge array of alternative, non-pathologizing approaches that are low-risk or no-risk (such as those shown in the brief videos at the Harvard Kennedy School conference, “A Better Welcome Home,” that I organized in 2011), and (3) classifying someone as mentally ill adds to their burden, because now they are given the message that there is something strange or inappropriate about their reactions. That is one reason I created The Welcome Johnny and Jane Home Project, in which someone who is not a veteran simply listens in total, respectful silence with 100% of their attention and their whole heart to anything that a (combat or noncombat) veteran wishes to say.

EM: What are your thoughts on the current, dominant paradigm of “diagnosing and treating mental disorders” and the use of so-called “psychiatric medication” to “treat mental disorders” in children, teens and adults?

PC: This one is partly answered above but feels too huge to answer adequately in a brief space. Let me just say the following. So-called psychiatric medication has been shown—most notably in Robert Whitaker’s excellently researched book, Anatomy of an Epidemic—to help some people sometimes, at least for awhile and maybe for longer but far more often to cause more harm than good. As Whitaker showed with World Health Organization and National Institute of Mental Health data, if one compares the rates of remission and of long-term disability between the time before each class of such drugs went on the market and the present time, one finds that the rates of remission have plummeted and the rates of going on long-term disability have skyrocketed.

EM: If you had a loved one in emotional or mental distress, what would you suggest that he or she do or try?

PC: I would recommend that for anyone in emotional or mental distress, I would want to know if they are living and/or working in unsafe places and if they are, to help them get out. If they are poor or are victims of violence or sexism, racism, homophobia, ageism, classism, or mistreatment based on their appearance, I would want to make sure they know that their upset is not a form of mental illness. Consider any of the 28 different non-pathologizing, low-risk or no-risk approaches shown in these brief videos…or others not included there, such as gardening, singing, playing music, or having friends, a job, or a good place to live. (These 28 approaches were presented at our conference about veterans and their families but all are certainly helpful to anyone.)

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Paula J. Caplan is a clinical and research psychologist, activist and advocate, award winning nonfiction writer, playwright, and screenwriter. She is currently Associate at the DuBois Institute, Harvard University and blogs at paulajcaplan.net and Psychology Today. paulajcaplan.net, psychdiagnosis.weebly.com, whenjohnnyandjanecomemarching.weebly.com

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Eric Maisel, Ph.D., is the author of 40+ books, among them The Future of Mental Health, Rethinking Depression, Mastering Creative Anxiety, Life Purpose Boot Camp and The Van Gogh Blues. Write Dr. Maisel at ericmaisel@hotmail.com, visit him at http://www.ericmaisel.com, and learn more about the future of mental health movement at http://www.thefutureofmentalhealth.com. To learn more about The Future of Mental Health: Deconstructing the Mental Disorder Paradigm visit here.

To see the complete roster of interview guests, please visit here:

Interview Series

Sam Thompson on the Diagnosis Debate

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TFOMHIS%20Image 30 - Sam Thompson on the Diagnosis Debate

Source: Eric Maisel

The following interview is part of a “future of mental health” interview series that will be running for 100+ days. This series presents different points of view about what helps a person in distress. I’ve aimed to be ecumenical and included many points of view different from my own. I hope you enjoy it. As with every service and resource in the mental health field, please do your due diligence. If you’d like to learn more about these philosophies, services, and organizations mentioned, follow the links provided.

**

Interview with Sam Thompson

EM: You used to work in a “think tank.” Can you tell us a little bit about what a “think tank” is and specifically how think tanks can help us “shift the paradigm” with respect to the current, dominant paradigm of “diagnosing and treating mental disorders”?

ST: These days I spend most of my time as a clinical psychologist in the NHS, but for a number of years I worked in academia and in the policy world, mostly for nef (the new economics foundation).

“Think tanks” come in many different shapes, sizes and political persuasions! At their best they can bridge the gap between academia and policy. Academics too often assume that once they’ve published their research in a journal, that dissemination is taken care of. Meanwhile, policy-makers often work under multiple, competing pressures and don’t have time to trawl academic journals looking for evidence. Thinks tanks can play a useful role in drawing out key messages from the academic literature, making arguments publicly and therefore – to some extent – influencing the terms of debate.

At nef, colleagues and I tried to connect social and economic policy with findings from positive psychology about what makes life go well. In the UK, at least, I think we had a hand in helping to broaden understanding of mental health away from just a focus on disorder. For instance, the UK has led the way in developing measures of national wellbeing, something that we had argued for extensively.

EM: You’ve written about the “diagnosis debate.” Do you have any thoughts about “alternatives to diagnosis” and what might improve upon or replace the current DSM/ICD model?

ST: My views on the DSM/ICD model have been strongly shaped by my practice as a clinician. Put simply, I’m yet to come across a clinical situation where a psychiatric diagnosis has helped me understand what’s going on, or what to do about it.

As a psychologist I focus on formulation – that is, collaborating with clients to work out what causes and maintains their problems. In my experience, a thoughtful and lightly-held (in the sense of being flexible and open to revision) formulation renders diagnosis completely unnecessary. Indeed, I work mostly with children and families whose needs are complex; in this context a diagnosis can be actively unhelpful because it locates the “problem” so firmly within one individual (usually the child), shutting down alternative avenues for exploration.

That said, I try to meet people where they are. Some people find medical explanations helpful, and if that’s the case I don’t see it as my role to argue them out of identifying with the diagnoses that they have been given by others. But I always hope to create space for multiple ways of understanding problems.

EM: If you could wave your magic wand, what would you like to see changed with respect to the current UK mental health care system?

ST: The National Health Service is unique in the world and is a source of great pride for many people in the UK. Historically, however, NHS mental health services have been poorly funded compared to their physical health counterparts. In recent years there has been growing recognition of the social and economic costs of mental distress and calls for a renewed focus on mental health, but true parity is still a long way off.

Whilst more funding would help, ultimately I would like to see greater emphasis on primary prevention. We actually know a good deal about how to reduce the incidence of mental health problems: providing early years parenting support, increasing opportunities for secure employment, tackling discrimination and stigma, reducing personal debt, reducing isolation of the elderly, and so on and so on. The difficulty is that intervening in most of these areas is not within the remit of mental health practitioners!

So, I would like to see psychologists and other mental health professionals become more politically engaged. Recently, for instance, I’ve been involved with Psychologists Against Austerity, a group of psychologist and therapists who are concerned about the mental health impact of recent social and economic policy in the UK. We’ve had some success in putting mental health onto the political agenda.

EM: You have a background in music and a love of music. Do you have the sense that music can perhaps “heal” emotional and mental distress?

ST: I read music as a first degree but (fortunately, with hindsight) realised pretty quickly that I wasn’t going to be good enough to make a career playing, and so I got stuck into the academic side. In fact, that was my route to psychology! I took a couple of courses with Professor Ian Cross and got interested in how we listen and make judgements about what we hear, and ultimately went on to write a PhD on the psychology of performance evaluation.

I haven’t been involved with music professionally for a decade or more, but I still play regularly and find making music with others incredibly energising. On the other hand, when I need comfort and space there’s nothing better than a few hours alone with my guitar (hand-made for me by the wonderful Brook Guitars). So music certainly has a big part in managing my emotional distress! Whether there is anything special about engaging with music compared to, say, art, or poetry, or dance, I’m not so sure. From a psychological perspective, I suspect the common ingredients have to do with active participation, sharing experiences, and gaining a sense of mastery.

EM: If you had a loved one in emotional or mental distress, what would you suggest that he or she do or try?

ST: There’s a role for therapy and medication, but I think the foundations of good mental health are more basic and everyday. Years ago, colleagues and I were asked to contribute to the government’s Foresight Project on a Mental Capital and Wellbeing. This “horizon-scanning” exercise reviewed research on mental health and wellbeing to make predictions about the challenges facing the UK over the next 50 years. We took the academic reviews and developed some simple, evidence-based messages about how to stay mentally well, the Five Ways to Wellbeing: Connect, Be active, Take notice, Keep Learning, and Give.

In the West we often tend to think of mental health as something that happens inside people’s heads. What I like about the Five Ways is that they invite action in the world, rather than retreating into introspection. If a loved one was struggling, I’d encourage them to look at the Five Ways and be curious as to what they could do differently in their lives day-to-day, not just how they could think differently.

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Sam Thompson is a clinical psychologist in a specialist child and family service at the Tavistock Centre in London. As an academic and policy analyst, Sam has published on public mental health, wellbeing and critical approaches to psychology.

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Eric Maisel, Ph.D., is the author of 40+ books, among them The Future of Mental Health, Rethinking Depression, Mastering Creative Anxiety, Life Purpose Boot Camp and The Van Gogh Blues. Write Dr. Maisel at ericmaisel@hotmail.com, visit him at http://www.ericmaisel.com, and learn more about the future of mental health movement at http://www.thefutureofmentalhealth.com

To learn more about and/or to purchase The Future of Mental Health visit here

To see the complete roster of 100 interview guests, please visit here:

Interview Series