As we noted yesterday, the final revision was approved for publication. The DSM-5 is how clinicians and researchers diagnose mental disorders in the United States. A common language is especially important when conducting research, to ensure treatments are actually working for the symptoms people have.

One of the changes getting a lot of attention is the “doing away” of Asperger’s Syndrome. But to be clear — Asperger’s isn’t being dropped from the DSM-5. It’s simply being merged and renamed, to better reflect a consensus of our scientific knowledge on the disorder as one form of the new “autism spectrum disorder” diagnosis.

So while the term, “Asperger’s” is going away, the actual diagnosis — you know, the thing that actually matters — is not.

But you wouldn’t know it reading some of the mainstream media’s reporting on this concern.

The board of trustees of the American Psychiatric Association, who released the approved changes on Saturday, said the reason they were renaming Asperger’s was “to help more accurately and consistently diagnose children with autism.” Which I agree with, because it’s important for clinicians and researchers to have a common, logical language.¹

I wish the media could differentiate between a label or word, and the actual diagnosis though. Because from the news coverage on this change, you’d believe the actual diagnosis was going away unless you read more carefully.

CBS News screams, Asperger’s syndrome dropped from American Psychiatric Association manual:

Asperger’s syndrome will be dropped from the latest edition of the psychiatrist’s “bible,” the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5.

It’s not until the third paragraph of this article do you realize the American Psychiatric Association, the publisher of the DSM-5, just decided to rename Asperger’s. (And why do so many media keep referring to a psychiatric diagnostic manual — a scientific instrument — as a “bible?” That is the strangest disconnect I keep reading time and time again. I’m not even sure any reporter who writes those words could tell you the reasoning behind calling it that.)

Fox News announced that “Asperger’s dropped from revised diagnosis manual,” but then quickly notes that it’s just the term that’s being dropped — not the actual diagnosis.

The UK’s Guardian does a little better, mentioning the renaming in its subtitle, “DSM-5, latest revision of Diagnostic and Statistical Manual, merges Asperger’s with autism and widens dyslexia category.”

So yes, the label of “Asperger’s syndrome” is leaving the diagnostic nomenclature, as our understanding of this disorder has increased substantially in the nearly 20 years since the DSM-IV was published. But the diagnosis itself remains, with a new label — as a mild form of autism spectrum disorder.

People who are currently receiving treatment and care for this disorder will continue to do so, and insurance companies, Medicaid and others will continue to cover the costs of treating it.

1. This is a good argument to do away with the terms “dysthmia” and “cyclothymia” as well, and just call them what they are — chronic depression and chronic bipolar disorder.

Fortunately, a number of treatment practices exist that can assist an individual in adopting positive behaviors. If you or a loved one has been diagnosed with a mental health condition and has problem behaviors, consider talking to a mental health provider about the benefits of Positive Behavior Support (PBS).

What is PBS?

Positive Behavior Support (PBS) is a philosophy for helping individuals whose problem behaviors are barriers to reaching their goals. It is based on the well-researched science of Applied Behavior Analysis (ABA). A key component is understanding that behaviors occur for a reason and can be predicted by knowing what happens before and after those behaviors.

PBS interventions are designed both to reduce problem behaviors and increase adaptive, socially appropriate behaviors. These outcomes are achieved through teaching new skills and changing environments that might trigger problem behavior. Prevention of problem behaviors is the focus, rather than waiting to respond after a behavior occurs. PBS strategies and interventions are appropriate for children and adults diagnosed with a variety of mental health conditions such as schizophrenia, depression, autism, and intellectual disability.

Who is Trained in PBS? What Do They Do?

Mental health professionals, such as psychologists and behavior analysts, are trained to complete assessments and design PBS interventions. They conduct assessments, called structural and functional behavioral assessments, to determine when, where and why problem behaviors occur. For example, a mental health professional may conduct an assessment of a student who is identified at risk for expulsion and alternative school placement due to profanity and disruptive behavior in the classroom. The goal would be to learn what the student is achieving by using those behaviors.

A typical assessment would include several observations in different locations to determine which behaviors are problematic. It then would identify the environmental triggers that predict when those behaviors will and will not happen. The mental health professional would talk with the student, his or her family, teachers, other treatment providers and friends to answer questions about the problem behaviors.

From there, the professional would develop treatments that match the reason that the student is using the problem behaviors. These treatments include developing strategies to replace problem behaviors with appropriate behavior.

By learning and using new skills, an individual can stop using problem behaviors. For example, an individual diagnosed with schizophrenia may break the ceiling fan in her home because she believes that the fan is yelling at her. The mental health professional will teach her coping skills such as mindfulness, deep breathing, journaling, asking for help, or muscle relaxation. This gives her other, more acceptable behavior options to use the next time she believes that the fan is yelling at her.

While the mental health professional may lead the development of PBS treatments, the individual leads the implementation by learning and using these new skills or replacement behaviors. Additionally, key people in the individual’s life such as family, friends and co-workers learn how to implement PBS treatments to change the environment to support the individual.

Why use a PBS Approach?

PBS emerged in the 1980s to understand and address problem behaviors. As a holistic approach to treatment of mental health conditions, PBS has many attributes:

• It is person-centered. Using a person-centered approach, PBS addresses the individual and respects his or her dignity. This includes listening to the individual, recognizing the individual’s skills, strengths, and goals, and the belief that the individual can accomplish his or her goals. Treatments are developed to fit the specific individual rather than a “cookbook” approach.

• It causes positive changes. Through environmental changes and reinforcement of adaptive behaviors, individuals can reduce problem behaviors. Coping mechanisms such as relaxation can take the place of the problem behaviors. PBS minimizes the need for punishment or restrictiveness such as restraint, seclusion, or removal of privileges.
• It is outcome-focused. PBS places an emphasis on outcomes important to the individual and to society. These behavioral outcomes, such as fewer aggressive incidents, have the ability to make homes, communities, hospitals, and schools safer.
• It provides collaborative support. PBS involves collaboration with those who support an individual, including caregivers, support providers, doctors, nurses, teachers, aides, nurses, social workers, and team leaders. This collaborative process keeps everyone involved in the individual’s treatment and allows for new behaviors and skills to be supported in all settings.

Does PBS Work with Other Treatments?

PBS may be practiced alongside other treatment interventions as part of a multidisciplinary approach to mental health treatment. For example, an individual who is prescribed medication by a physician or psychiatrist for mental health conditions such as schizophrenia, autism or impulse control disorder could benefit from PBS. An individual who sees a dietician to help with specific nutritional needs such as in Prader-Willi Syndrome, or receives occupational, speech, or physician therapy, may also benefit from PBS techniques.

PBS is consistent with other treatment approaches that are person-centered or recovery-based. This means that they can work well when used together. PBS interventions are inconsistent with restrictive or punishment-based interventions. PBS interventions are used instead of these approaches.

Since PBS is a holistic approach, and clinicians consider all aspects of an individual when assessing and developing interventions, it is helpful for a PBS clinician to become a member of an individual’s interdisciplinary team. PBS-trained professionals have experience working directly with other health care professionals to design treatments. For example, a PBS-trained professional may work with speech therapists to develop communication boards for non-verbal individuals who engage in self-injurious behaviors such as head-banging or skin-picking.

Without treatment, the consequences of mental illness are astounding: disability, unemployment, substance abuse, homelessness, incarceration, and suicide. While medication and other interventions have proven to be beneficial in many mental health conditions, a multidisciplinary approach that includes a behavioral component can offer support mechanisms critical in the treatment process.

Talk to a mental health professional about the benefits of PBS.

It is not uncommon to see a young child with ASD (autism spectrum disorder) who does not understand the “give me” gesture of an open hand or the meaning of a point. Your child may not understand the significance of an angry or sad face on another person.

Sometimes people interpret the child’s lack of interest or response to others’ expressions as a lack of cooperation, but children with ASD just don’t understand. How can you teach your child to pay attention to people and recognize what their body language means?

Here are three easy steps:

• Step 1: Exaggerate your gestures.
• Step 2: Add predictable steps.
• Step 3: Provide needed help.

And here are five simple exercises you and your young child can do today to help with paying attention to people and better understanding body language.

1. When dressing, show and label each piece of clothing before you put it on.

When you involve your child in helping or giving, use big gestures like holding out your hand for your child to give.

2. When diapering, show the diaper and name it before giving it to your child to hold.

When you ask for it back, use a big gesture to get it, and give a big “thank you” afterward.

3. At mealtimes, give your child a few bites of food on the high chair try, and then point out one for him to eat.

Help your child follow your point to get it. If he doesn’t, then next time, just give one and point to that one before your child gets it. That way, your child has to be following your point.

4. At bath time, ask for a hand or foot to wash by pointing, asking, and holding your hand out.

Ask for the bath toys at the end, and point to them to be put away one at a time.

5. When playing, exaggerate the gestures for chase, tickle, swing, and spin.

Sing “Itsy Bitsy Spider.” Get down on eye level, face your child, make a big, excited smile, position your hands dramatically, and then start the game with big energy. Help your child anticipate what is going to happen from your face and body posture.

Excerpted with permission from An Early Start for Your Child with Autism by Sally Rogers, PhD, Geraldine Dawson, PhD, and Laurie Vismara, PhD.

Navigating social situations can be difficult for anyone, but for people on the autism spectrum, it’s not just difficult — it’s a minefield.

People with autism or Asperger’s don’t pick up on social clues that seem obvious to most people. There are unwritten social rules that they can’t fathom. Things blow up on them when they have no idea what they’ve done wrong.

To put it mildly, that’s stressful.

High anxiety is often the silent partner of people with autism, even those who are high-functioning. That anxiety can be paralyzing in social situations. Not just deer-in-the-headlights frozen, but full-on engulfed in fear. For people with autism, it compounds their already difficult challenges.

Emotions drive our physiology, including our brain function. Stressful emotions drive our brains into chaos, making it difficult to focus, remember things, perceive what’s in front of us, and think of what to say. But there’s a flip side — positive emotions drive our brains into coherence, improving attention, memory, perception, and communication. This is true for all of us, whether we’re on the autism spectrum or not.

It is encouraging to learn that when researchers at the Yale School of Medicine gave young people with autism the hormone oxytocin (called “the love hormone” because of its role in maternal bonding), there were measurable increases in brain function in areas associated with processing social information.

This opens new possibilities for treatment of autism. However, we can produce beneficial hormone levels and improve brain function naturally through the power of positive emotions.

3 Tips to Help Someone with Autism

In my stress coaching for people with Aspergers and ADHD, I use simple and powerful ways to put the biochemistry of love to work.

1. Start small, go slow, think big.

Autism is a developmental delay, not a life sentence. Expect that they can go beyond their limitations, but never push them there. Don’t fight small battles; let them be where they are, and just take time to look for small victories. Each one is a big deal.

2. Fill your own positive, emotional gas tank.

Stress is also a huge problem for parents of autistic children. Put this power to work for you first. Practice self-care. Give yourself lots of empathy. Then let love fill you and radiate to your child. It will be the power their emotional muscles will grow into.

3. Teach them that positive emotions are our greatest source of power.

Our real power comes from the heart. That’s where we become the person we can be and learn how to connect with other people. Reflect their feelings to help them learn to do the same. If your child has a special interest, help them distinguish the positive feelings it gives them. They can learn to self-generate those feelings and use that power to overcome challenges.

Nothing will fill your heart with joy like when your autistic child, teen, or young adult lovingly expresses what is in their heart to others. Help them past their anxiety, and they’ll find the way.

The critics were worried that these new diagnoses would label millions of Americans with a mental disorder — and offering them subsequent treatment — that today wouldn’t qualify for such diagnosis or treatment.

For instance, while anxiety mixed with depression is actually quite commonly seen in the wild of clinical practices, there is no specific diagnosis for this mixed mood state. The DSM-5 sought to correct this problem — that clinicians are treating millions for a problem the DSM says doesn’t technically exist. But critics worried the new criteria were too lax and might result in over-diagnosis.

The same was true for attenuated psychosis syndrome. The proposed diagnosis was an effort to get children and young adults into treatment sooner for experiencing weird thoughts or hallucinations. But people worried that it would lead to unnecessary treatment of kids for a potentially temporary problem.

The DSM folks responsible for these changes emphasized that they were the result of scientific data — not just people’s subjective opinions:

Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and the chairman of the task force making revisions, said the changes came in response mainly to field trials — real-world studies testing whether newly proposed diagnoses are reliable from one psychiatrist to the next — and also public commentary. “Our intent for disorders that require more evidence is that they be studied further, and that people work with the criteria” and refine them, Dr. Kupfer said.

Allen Frances, resident curmudgeon and the editor of the DSM-IV — the prior revision of the DSM that caused a lot of the over-diagnosis of disorders we see today — was jubilant, “At long last, DSM 5 is correcting itself and has rejected its worst proposals.”

Really? Was there really any doubt that as the data came in from the field trials, the DSM-5 — which is under active draft revisions and has yet to be published — would also be updated? Of course there wasn’t, yet critics like Frances raised the straw man argument and constantly suggested the DSM’s new criteria were already set in stone.

Autism Disorders Will Continue to Undergo Reorganization

One set of disorders that will continue to undergo their proposed reorganization are autism spectrum disorders, according to the NY Times. The current mishmash of diagnoses simply aren’t very well organized or well thought-out:

The proposed definition of autism, which would eliminate related labels like Asperger’s syndrome and “pervasive developmental disorder,” came under fire in January, when researchers at Yale University presented evidence that about half of the people who currently have a diagnosis on the higher functioning end of the “autism spectrum” would no longer qualify under the new definition.

At this week’s annual meeting, researchers presented data from an unpublished study of some 300 children, finding that the proposed definition would exclude very few who currently have a diagnosis of autism or a related disorder.

And last, the DSM committee will try and ensure clinicians and physicians don’t misdiagnose grief as depression, with a prominent note stating that, in most cases, normal grief does not qualify for a major depression diagnosis. However, since the note won’t take place of the actual diagnostic criteria, professionals will still be able to give people experiencing a severe grief reaction a diagnosis of depression — allowing them to access needed treatment to help them with their depressive feelings.

All of this is good news and demonstrates that the DSM process is working according largely to scientific data, not loud-mouthed “experts” who believe their subjective judgment should override the research.

Read the full article: D.S.M. Panel Backs Down on Diagnoses

Who made this diagnosis? His mom.

His mom was so convinced that her then 17-year-old teenage son had this disorder, she put in him in an educational video about Asperger’s. Asperger’s is usually diagnosed in childhood or as a young teenager, and is characterized by a severe degree of social impairment, isolation, and what others might see as eccentric behavior.

While I commend Mr. Nugent for sharing his story with the world, I have to really question his understanding of how mental disorders are diagnosed by mental health clinicians.

Here’s his story…

Benjamin Nugent appeared in an educational video about Asperger’s, created by his mom, apparently an expert in Asperger’s:

The film was a research project directed by my mother, a psychology professor and Asperger specialist, and another expert in her department. It presents me as a young man living a full, meaningful life, despite his mental abnormality. [...]

Both my mother and her colleague believed I met the diagnostic criteria laid out in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition.

First of all, it’s highly unethical to go around diagnosing your family members — much less your children. Any first-year graduate student knows this.

Nugent was apparently only “diagnosed” by these two academicians — his mom and his mom’s colleague working alongside her in her own department.

I don’t care if your mom was the equivalent of Einstein in Asperger’s research — it’s just not ethical for a mental health clinician to diagnose someone they know (at least not in any official capacity). It’s also not very ethical for researchers or academicians to make clinical judgments about people they know.

That’s what licensed clinical psychologists do. I wonder if Nugent ever saw one of those?

You also can self-diagnose according to the DSM criteria as much as you’d like. But such self-diagnosis is also not valid or equivalent to a clinical diagnosis from a mental health professional.

I’m sorry to be the bringer of bad news, but the only person who could objectively diagnose Nugent — a mental health clinician — never did (at least according to the limited information he provided in his blog entry).

Mental disorder diagnoses are not simple things. An experienced clinician brings all of their wisdom and years of seeing similar children and young adults into play when deciding whether a mental disorder diagnosis is appropriate. So while you can indeed screen yourself to see if it’s something that you should go see a professional about (for instance, using one of our screening quizzes), it’s not something you can do to yourself — or your family members — with any degree of accuracy or objectivity.

Asperger’s, like most mental disorders, must also cause significant distress and impairment in at least one area of your life. In other words, YOU have to actually feel like this is a serious problem. If you are you, and you’re okay with whatever “you” is, it is virtually never appropriate to diagnose a mental disorder (there are some exceptions to this, but for most people, it’s the general rule).

So while I’m sorry to hear of Nugent’s young adult Asperger’s diagnosis — and I agree, such diagnoses should be made more conservatively — I think this story best illustrates the dangers of unqualified (or biased) professionals making mental disorder diagnoses. If your mom or dad thinks you might have a problem, go see a clinician who is experienced and a specialist in the area of your concern.

I would include most family physicians and general practitioners in this category of professionals who shouldn’t be diagnosing mental disorders as well — the folks responsible for prescribing the majority of anti-depressants in the U.S.

The best person to get a mental health diagnosis from? A qualified mental health professional, preferably a psychiatrist or psychologist.

Learn more about Asperger’s Syndrome.

Read the full blog entry: I Had Asperger Syndrome. Briefly.

I mean, even those who claim they are normal may, in fact, be the most neurotic among us, swimming with a nice pair of scuba fins down the river of Denial. Having my psychiatric file published online and in print for public viewing, I get to hear my share of dirty secrets—weird obsessions, family dysfunction, or disguised addiction—that are kept concealed from everyone but a self-professed neurotic and maybe a shrink.

“Why are there so many disorders today?” Those seven words, or a variation of them, surface a few times a week. And my take on this query is so complex that, to avoid sounding like my grad school professors making an erudite case that fails to communicate anything to average folks like me, I often shrug my shoulders and move on to a conversation about dessert. Now that I can talk about all day.

Here’s the abridged edition of my guess as to why we mark up more pages of the DSM-IV today than, say, a century ago (even though the DSM-IV had yet to be born).

Most experts would agree with me that there is more stress today than in previous generations. Stress triggers depression and mood disorders, so that those who are predisposed to it by their creative wiring or genes are pretty much guaranteed some symptoms of depression at confusing and difficult times of their lives.

I think modern lifestyles — lack of community and family support, less exercise, no casual and unstructured technology-free play, less sunshine and more computer — factor into the equation. So does our diet. Hey, I know how I feel after a lunch of processed food, and I don’t need to the help of a nutritionist to spot the effect in my 8-year-old son.

Finally, let’s also throw in the toxins of our environment. Our fish are dying… a clue that our limbic systems (brain’s emotional center) are not so far behind.

Maybe the same amount of people have genes that predispose them to depression as in the Great Depression. But the lifestyle, toxins, and other challenges of today’s world tilts the stress scale in the favor of major depression, acute anxiety, and their many relatives.

Of course we can’t forget today’s technology and cutting-edge research of psychologists, neuroscientists, and psychiatrists. Because of medical devices that can scan our brains with impressive precision and the arduous work of scientific studies done in medical labs throughout the country, we know so much more about the brain, and its relationship with other biological systems within the human body: digestive, respiratory and circulatory, musculoskeletal, and nervous. All of that is a very good thing, as is knowledge and awareness.

A few years ago, psychiatrist and bestselling author Peter Kramer penned an interesting article for Psychology Today rebutting the claims of popular authors — spawning a new genre of psychological literature — that doctors are abusing their diagnostic powers, labeling boyishness as “ADHD,” normal sadness and grief as “major depression,” and shyness as “social phobia.” Because of their rushed schedules and some laziness, doctors are narrowing the spectrum of normal human emotion, slapping a diagnosis on all conditions and medicating people who would be better served with a little coaching, direction, and psychotherapy.

As I explained in my piece, “Are We Overmedicating? Or Is Our Health Care System Inadequate?,” I believe the problem is far more complicated than overmedication. I’d be more comfortable labeling it “really bad health care.” And if I had to pick a culprit, I’d point my finger at our health care insurance policies, not the doctors themselves. But I don’t even want to get into that, because it causes my blood pressure to rise and I’m trying really hard lately to live like a Buddhist monk.

What I liked about Kramer’s article is that he doesn’t deny that there are more diagnoses today, and yes, some people may feel the damaging effect of stigma. However, more often than not, diagnosis brings relief and treatment to a behavior, condition, or neurosis that would otherwise decay certain parts of a person’s life, especially his marriage and relationships with children, bosses, co-worker, and dare I say in-laws? Kramer writes:

Diagnosis, however loose, can bring relief, along with a plan for addressing the problem at hand. Parents who might have once thought of a child as slow or eccentric now see him as having dyslexia or Asperger’s syndrome—and then notice similar tendencies in themselves. But there’s no evidence that the proliferation of diagnoses has done harm to our identity. Is dyslexia worse than what it replaced: the accusation, say, that a child is stupid and lazy?

People afflicted by disabling panic or depression may fully embrace the disease model. A diagnosis can restore a sense of wholeness by naming, and confining, an ailment. That mood disorders are common and largely treatable makes them more acceptable; to suffer them is painful but not strange.

Then Kramer asks this question: What would it feel like to live in a world where practically no one was normal? Where few people are free from “psychological defect?” What if normalcy was a mere myth? He ends the article with this poignant paragraph:

We are used to the concept of medical shortcomings; we face disappointing realizations—that our triglyceride levels and our stress tolerance are not what we would wish. Normality may be a myth we have allowed ourselves to enjoy for decades, sacrificed now to the increasing recognition of differences. The awareness that we all bear flaw is humbling. But it could lead us to a new sense of inclusiveness and tolerance, recognition that imperfection is the condition of every life.

Amen to that.

The excerpt below is from the book, Living Well on the Spectrum by author Valerie L. Gaus, Ph.D. The book is a self-help book that helps a person with an autism spectrum disorder identify life goals and the steps needed to achieve them.

Read on for the excerpt…

April is the month when most high school seniors receive their college acceptance letters and begin to plan the next phase of their lives. The transition from high school to college can be very difficult for people on the spectrum. All too often I am referred a young person who is suffering the aftermath of what I have come to call the “freshman crash-and-burn” — an academic, social, or emotional crisis that occurs by winter vacation of the student’s first semester at college.

If you are still considering school or you are the parent of a child on the spectrum who is in middle or high school, take into consideration the following tips about transition for yourself or any student you are supporting:

• Become a self-advocate. This means you need to learn how to articulate your needs to others. If you’re used to having your parents speak for you regarding educational needs, assume they can no longer do that when you are in college (even if they are continuing to provide you with emotional and financial support).
• If you had an Individualized Education Program (IEP) in high school, make sure you know what it said, what your diagnosis (classification) was, and what accommodations were written into it (e.g., extended test time, a scribe to take notes for you). Do not rely on your parents to communicate these issues on your behalf anymore.
• Don’t assume you have to go to college, even if you are very bright and got good grades in high school. There may be technical or trade schools offering programs that will be of more interest to you.
• When you are choosing colleges, make sure you schedule visits to the campuses and always include an appointment with the office that handles services for students with disabilities. These centers vary in name and extent of supports. Even if you don’t think you need it, it is important to know what would be available to you if you were to hit some unexpected problems. Take along a copy of your IEP if you had one in high school.
• If you are already at school, get connected with the office of student disability services on your campus. Once again, you may not think you need it, but having the name and phone number of a person you have already met can be a real lifeline if you encounter some trouble spots during a semester.
• Find out where the campus mental health center is located. As a proactive measure, make sure you learn what the protocol is for making an appointment so you will have it on hand if needed. It’s a lot easier to find out about such things when you are not upset, which is why the proactive research can be so helpful; you will have the information on hand to use if you do become upset by some college-related problems.

Interested in learning more about living with autism? Check out the book on Amazon.com, Living Well on the Spectrum by Dr. Valerie Gaus.

Reprinted here with permission.

One of the concerns I often hear from people with an autism spectrum disorder is about work and their career. In fact, just last evening while hosting our weekly Q&A on mental health issues here at Psych Central, the question came up whether a person should tell a potential employer about their Asperger’s (the mildest form of autism).

While I am not a lawyer, my suggestion was that it probably wasn’t relevant for many jobs and not something that I personally would share with a potential employer during the interview process (while you’re trying to put your best foot forward). But as I said last night, it all depends on the situation, the specific job and its responsibilities, and how comfortable the person is talking about these concerns with a stranger and potential boss. It’s something that I feel like can always be shared later, after the job is obtained.

Read on for the excerpt…

Work is one of the greatest sources of pride and fulfillment for adults. Making an important contribution to others and maintaining financial independence are crucial to health, happiness, and self-confidence. Yet the majority of adults on the spectrum are either unemployed or underemployed. This is one of the most devastating issues for my patients and their families.

If you are on the spectrum, you may be having difficulty finding or keeping a job, or dealing with the multiple stressors that come with work life. Many of my patients ask me if they should disclose their ASD (autism spectrum disorder) diagnosis to their employer. Depending on your diagnosis and the extent to which your ASD differences have affected your work life, you may be considered a member of the class of people protected by the Americans with Disabilities Act. Employers are required to make “reasonable accommodations” for any employee with a disability who is otherwise qualified to do the job.

This law covers all types of disabilities, but disclosure and accommodation can be a very delicate issue for people with ASDs. ASDs are not obvious, like visual or other physical disabilities. Also, the needs of employees with ASDs will vary greatly from one person to the next.

Because this is a legal issue, I advise you to consult an attorney specializing in disability law before disclosing to an employer. I always advice my patients to ask themselves the following questions and make sure they can come up with clear answers before moving forward on disclosure to any person. If you have any difficulty answering these, you may want to discuss the issue with a trusted person who knows you well.

• Why do you want your employer to know about your diagnosis?
• How do you think disclosing your ASD diagnosis to your employer will improve your work life?
• Are you prepared to ask your employer to support you in a different way or to accommodate you in specific ways?
• What are the risks involved in telling your employer?
• If you are not sure about the risks because you do not know the person well, could you ask for an accommodation (such as a modified workday) without revealing your diagnosis?

If you want to learn more about living with autism spectrum disorder, I recommend checking out Dr. Gaus’ book on the publisher’s website or from Amazon.com.

Excerpt reprinted here with permission.

The problem with the original study came when nobody — and I mean, nobody — could replicate the research. Not Wakefield. Not other researchers. Science demonstrates a strong finding when data is replicable. When nobody can replicate your research, it’s considered an unreliable or extremely weak finding.

And in this case, it’s not even that. The BMJ today claimed that Dr. Andrew Wakefield allegedly engaged in deliberate fraud in his original study.

“The MMR [measles-mumps-rubella vaccine] scare was based not on bad science but on a deliberate fraud,” Dr. Fiona Godlee, editor-in-chief of the BMJ, which published details of the new investigation on Jan. 5, said in a statement. “Such clear evidence of falsification of data should now close the door on this damaging vaccine scare.”

Yeah, it’s that bad. But you know? It gets even worse — Wakefield was allegedly in the pocket not of big pharma, but of a law firm that was raring up to sue vaccine makers:

According to the new BMJ report, Wakefield — a gastroenterologist, not a pediatrician or neurologist — identified the new “syndrome” before he even began to collect data. By his account, the MMR vaccine caused both gut problems and regressive autism in children.

The BMJ investigation alleges that this hypothesis only emerged after Wakefield had been retained, with compensation, to work on a lawsuit to sue the maker of the vaccine.

In the Lancet study, Wakefield described the experiences of 12 children who supposedly had regressive autism, where a child seems to be developing normally but then regresses.

However, according to the BMJ report, only one child in the sample was diagnosed with this form of autism, and three of the 12 didn’t have any autism diagnosis at all.

Astounding that a researcher could come out with such a controversial finding, and then not think this conflict of interest would surface — a conflict he apparently never disclosed to The Lancet.

If this doesn’t put the final nail in the coffin of the autism-vaccine link, I don’t know what will. This was a link many people want to believe, but the science simply doesn’t back up. I like it when science also cleans up its own messes. Too bad The Lancet had to rely on rival journal BMJ to conduct and publish this investigation.

Please, if for some reason you had been holding off getting your child the MMR vaccine, get your child vaccinated. There is no credible evidence linking this vaccine to autism.

Read the full article: Doctor Behind Autism-Vaccine Link Study Accused of ‘Deliberate Fraud’

This unique listening ability is called selective listening and most people can do it. It’s our ability to tune out one conversation and have our brains hone in on another. And despite this fairly common phenomenon, neuroscientists still have little idea of how we do it.

It seems to come down to understanding the neural pathways and circuits that underlie our attention skills. In understanding simple attention skills like how we can selectively listen, neuroscientists believe it could also help in our understanding of disorders like autism, which can be seen as largely a disorder of neural circuits according to Tony Zador, Professor of Biology and the Chairman of Neuroscience at the Cold Spring Harbor Laboratory:

“So we’re very optimistic that by understanding how autism affects these long range connections and how those long range connections in turn affect attention that we’ll gain some insight into what is going on in humans with autism.”

Read the full article and watch the video: The Neuroscience of Cocktail Party Conversation

Last week, The New York Times covered the story of Kyle Warren, a boy who began risperidone (Risperdal) treatment at age 2. Yes, you read the right — age 2.

He was rescued from this unbelievable prescription by Dr. Mary Margaret Gleason through a treatment effort called the Early Childhood Supporters and Services program in Louisiana. Dr. Gleason helped wean young Kyle off of the medications from ages 3 to 5, and helped understand that Kyle’s tantrums came from his stressful and upsetting family situation — not a brain disorder, bipolar disorder, or autism.

Imagine that — a child responding to a family situation that is stressful and involves his two primary role models — his parents.

After carefully reviewing the limited amount of research in this area, Psych Central recommends that parents should never accept an atypical antipsychotic medication prescription for a child age 5 or younger. If your doctor makes such a prescription, you should (a) look for another doctor and (b) consider filing a complaint with your state’s medical board against the doctor.

There is an astonishing lack of empirical or clinical data that suggest prescribing these kinds of medications to such young children — age 5 or younger — results in any significant change in mood or behavior. Lacking such data, it our opinion that it is simply irresponsible and inappropriate for medical professionals to prescribe such medications to young children.

There have been virtually no longitudinal studies conducted on children younger than 13 on these medications. We have no idea what the long-term effects of prescribing risperdal to a 2-year-old has on their long term cognitive and personality development. What few studies have been conducted and use the term “longitudinal” measure results and side effects at time periods like 6 months or 12 months (the maximum time of study we could find in a literature search). Yet few children are prescribed these kinds of medications for only 6 or 12 months. There’s continues to be a serious disconnect between how medications are prescribed in practice, and how they are researched.

The amount and number of tiny studies done on young children — those younger than 13 — for most of these medications is equally heart-stopping. They are few and far between, with typically small sample sizes (often in the 20 to 30 person range).

What brought this on was a recent article in The New York Times about a 3-year-old who was on an atypical antipsychotic. He was eventually diagnosed as simply having attention deficit disorder later on, but who knows what damage was done by the medication to his young, developing brain in the meantime.

It’s time to put a stop to this out-of-control prescription of atypical antipsychotics off-label. The American Academic of Child and Adolescent Psychiatry apparently agrees:

Dr. Lawrence L. Greenhill, president of the American Academy of Child and Adolescent Psychiatry, concerned about the lack of research, has recommended a national registry to track preschoolers on antipsychotic drugs for the next 10 years. “Psychotherapy is the key to the treatment of preschool children with severe mental disorders, and antipsychotics are adjunctive therapy — not the other way around,” he said.

So why do doctors continue to prescribe clearly inappropriate medications to younger and younger children? Costs and time. Medication is cheaper than psychotherapy in most cases. And psychotherapeutic interventions require a time and commitment on the family’s part to embrace change. Changing the family dynamics, changing the nature and quality of the parenting relationships, and changing how a parent copes with stress and the behavior of their child. Many parents fear a therapist will also be more judgmental — telling them that their parenting styles may have led to the child’s current problematic behavior. Some parents just aren’t able to hear that (even if therapists are usually far more tactful than looking to place blame — therapy is about helping produce beneficial changes, not blame).

But it is cheaper to medicate children than to pay for family counseling, a fact highlighted by a Rutgers University study last year that found children from low-income families, like Kyle, were four times as likely as the privately insured to receive antipsychotic medicines.

Texas Medicaid data obtained by The New York Times showed a record $96 million was spent last year on antipsychotic drugs for teenagers and children — including three unidentified infants who were given the drugs before their first birthdays.

In addition, foster care children seem to be medicated more often, prompting a Senate panel in June to ask the Government Accountability Office to investigate such practices.

In the last few years, doctors’ concerns have led some states, like Florida and California, to put in place restrictions on doctors who want to prescribe antipsychotics for young children, requiring a second opinion or prior approval, especially for those on Medicaid. Some states now report that prescriptions are declining as a result.

A study released in July by 16 state Medicaid medical directors, which once had the working title “Too Many, Too Much, Too Young,” recommended that more states require second opinions, outside consultation or other methods to assure proper prescriptions.

In a followup to the main article, Dr. Gleason responds to some readers’ questions, in an article entitled A Child Psychiatrist Responds. She confirms our reading of the research:

There is no scientific support for the use of psychiatric medications in infants and toddlers and limited support in preschoolers. However, parents know better than anyone else that there few available resources for families worried about their young child’s emotional or behavioral well being.

While the latter may be true, that’s little excuse for what’s happening with these kinds of crazy young prescriptions. Doctors, of course, should know better. But parents too have a responsibility to read up and become educated about the treatments a doctor is recommending for their toddler or preschooler.

The program Dr. Gleason is associated with sounds ideal — I wish we could replicate it across the country:

In our program, we also do consider the role of medication as part of the treatment plan in older preschoolers whose severe symptoms persist after therapy and who have a diagnosis that has been shown to respond to medications. We try to use all available research to guide these considerations. It is important in psychiatry — just like in other medical specialties — that we make treatment recommendations based on careful assessment and understanding of the child’s symptoms, relationships and life stressors. We also need to track how treatment is working and stop medications that are not improving a child’s functioning or are causing side effects that interfere with the child’s optimal functioning. Our goal is to help children and families enjoy each other, function at the highest level they can, and maintain physical health.

In my mind, a treatment approach that uses comprehensive assessment, and considers biological, psychological, and social factors in the patient’s life and uses treatments supported by the strongest evidence is far from anti-psychiatry. It is the best kind of psychiatry we can offer.

I understand the problems parents face when dealing with an out-of-control 2 year old. But the answer is not an atypical antipsychotic medication. The answer lies in gaining better parenting skills, and getting the child into a child psychologist or other early intervention child care program that understands the value of examining a family’s dynamics to get the whole story.

Because a 2 or 3-year-old should never be prescribed an atypical antipsychotic psychiatric medication.

Read the original article about Kyle and his family’s ordeal: Child’s Ordeal Shows Dangers of Antipsychotic Drugs

To start with, however, I want to congratulate the American Psychiatric Association for reaching this milestone and embracing the ability for the public to comment on the proposed changes. We first called for such an option back in December of last year and it appears somebody at the APA was listening. Kudos for being willing to take the barrage of criticism that is coming your way, APA. However, we wish it was an open commentary model, where the comments appears online for all to read (it appears to be a closed model, where your comments disappear into cyberspace with the hope that someone is actually reading them).

Some may criticize the draft for reasons relating to how “popular” a proposed diagnosis may become. I find such logic shaky at best. You can’t suggest diagnoses not be included on the reasoning that too many people may be diagnosed with them if they make it into the final revision of the DSM-5. Also, I’m not a big fan of folks who try to predict the future. We’re supposed to be professionals here, not fortune tellers.

The Good in the DSM-5 Draft

Before I review some of the concerns I have with the DSM-5 draft, let me also note some of what I view as beneficial changes.

1. Inclusion of Binge Eating Disorder

While some may decry the inclusion of this disorder in the draft, I can’t see how it can be any other way. This diagnosis has been in the current DSM for 16 years (in the section of disorders needing further study), and has undergone a lot of research during that time. On behalf of millions of Americans who have long suffered from this problem but couldn’t be diagnosed with it, I think folks will be thankful this is finally being recognized as a legitimate disorder.

2. Suicide Risk Assessment

It’s nice to see the manual embrace a slightly more formal process for assessing suicidal risk. Suicide remains a tremendously difficult problem to address, so I find anything that helps a clinician review their client’s risk a potential positive.

3. Combining of the Two Categories: Substance Abuse with Dependence

To me, this has always been a confusing distinction without a difference, that seemed to make little difference in the proposed treatments. The proposed change — which combines the abuse category with the dependence category — brings these kinds of disorders in alignment with how other mental disorders are diagnosed. For example, we don’t differentiate between someone who has brief, episodic manic episodes and someone who has longer-term manic episodes. It’s enough to note the differences in the specifiers that accompany the new proposed disorders (e.g., Substance Use Disorder or Alcohol Use Disorder). Seems like a long-needed change.

4. Aligning Autism Disorders

While some people may disagree with the proposed change of bringing in Asperger’s disorder within a newly named Autism Spectrum Disorders (to encompass all autistic behavior disorders), I see this as a positive change. Nobody who has a disorder likes it when these kinds of name changes occur to their diagnosis. But it helps clarify and properly categorize the disorder, which is what the diagnostic manual is all about.

5. Inclusion of Self-Injury

We’ve seen a significant rise in the number of people who use self-injury as a means of coping with their lives, that it turns into a behavior that can become difficult to control. There’s no good diagnosis for a person today who has self-injury behavior, but few other symptoms. The inclusion of self-injury as its own disorder is likely to help people who currently do this to seek out help.

The Bad in the DSM-5 Draft

1. Behavioral Addictions

As long-time readers know, I’m no fan of the term “behavioral addictions.” I believe such a term leads us all on a slippery slope that knows no bounds which could end up classifying virtually any human behavior that can be overdone. Watching TV, reading books, heck even talking to your friends and socializing could all become “behavioral addictions.” Clearly, this new category was meant to someday include addictions like “sex addiction” and “Internet addiction,” but for now only includes the existing disorder, Pathological Gambling. This is a bad change and we would recommend the workgroup revisit.

2. New/Updated Sexual Disorders for Legal Reasons

It seems like some of the updates — like one for pedophilia expanding to include teens — and new disorders — like Paraphilic Coercive Disorder — are being proposed more for legal or pragmatic reasons, not based upon clinical research data. While the DSM has always been a slave to the politics and realities of the world it tries to accurately reflect, these changes seem poorly conceived. They would give criminals additional opportunities to claim “mental incompetence” and face a different (and often lighter) sentence because of it.

3. The Medicalization of Grief

Do we really need this? Dr. Ronald Pies predicted this one a year and a half ago and it appears to have come true. Grief is a highly individualized and personal experience and it seems to make little sense to call it a disorder just because it’s severe.

4. Minor Neurocognitive Disorder

On the fence about this one, but am leaning toward seeing this as an attempt to further medicalize normal aging. The proposed criteria do nothing to differentiate this from normal aging, where it is normal for many to have difficulty with or even lose the ability to do things one could normally do even just a few years earlier. Knowing that the recommended formal neurocognitive testing would rarely be carried out in real world settings, this seems like a new disorder ripe for being misused.

The Ugly in the DSM-5 Draft

1. Temper Dysfunctional Disorder with Dysphoria

I could probably just stop at the name and you would see how wrong this is. This is for a tiny slice of childhood (you have to be between ages 6 and 10 to receive this disorder; what happens if, at age 11, you still have the symptoms is a mystery). It is characterized by “temper outbursts are manifest verbally and/or behaviorally, such as in the form of verbal rages, or physical aggression towards people or property.” So, in other words, a temper tantrum. Something children have been doing for centuries is apparently now a serious enough problem to warrant its own disorder? No, I don’t think so.

2. Dimensional Assessments

Dimensional assessments are simply measures that allow a clinician to gauge a wide range of symptoms that “cross cut” across many disorders. While well-intended, they are complex (the description of them alone is longer than this entire article!) and add another level of work to already over-worked clinicians. The benefits of this kind of assessment largely remains unknown, and without a clear benefit, insurance companies are unlikely to require their use. Meaning they will be relegated to the bin of “good ideas badly implemented.”

We’ll have more thoughts on specific changes in the days to come, so stay tuned. Check out the DSM-5 Draft on their website, where you can also register to submit your own comments.

Want another take? Check out Opening Pandora’s Box: The 19 Worst Suggestions For DSM5 in the Psychiatric Times by Allen Frances, M.D.

And check out our original article commenting on the DSM-V draft changes.

It was just over two months ago we and other news agencies reported on a study published in the journal Pediatrics that found that autism was now in about 1 in 91 children. So I was scratching my head when I started seeing news reports late this past week stating that autism was in 1 out of every 110 children.

After a little digging, I see it was spurred by the U.S. Centers for Disease Control and Prevention issuing a press release on the findings of an analysis of actual 8-year-old child health records, published in the CDC’s Morbidity and Mortality Weekly Report. The Pediatrics study was a structured phone survey of parents (not an analysis of actual child health records).

While it’s great that we now have two datasets that are in basic agreement that indeed, there has been a “jump” in the rates of autism from its previous estimated rate of 1 in 150, it wasn’t the same kind of news that the October study was. Why confirmatory data for autism got such widespread media coverage is beyond me, as confirmatory data in nearly any other health concern is most often just ignored (“Oh, we already covered that story, and this doesn’t change anything”).

In fact, if there’s anything newsworthy here, the news is that the rates of autism are actually better than we thought. We had thought that autism was occurring in every 1 out of 91 children. Now we know it’s 1 out of 110, a 20 percent difference! The news here is that autism rates aren’t as bad as we thought they were two and a half months ago, but still worse than they were from the original years-old 1 in 150 CDC estimate.

But I couldn’t find a single mainstream news outlet that actually put the numbers into context compared with the last round of numbers published — the October numbers, not the numbers from a few years ago. Every news story I read simply stated that the two sets of numbers were in basic agreement. Not untrue, but not the whole story either.

How can you just delete an entire diagnosis and do away with a diagnostic label that hundreds of thousands of clinicians use everyday and millions identify with? If you’re the American Psychiatric Association, the folks behind the latest DSM revision, you can pretty much do anything you want.

Before I get to Asperger’s, I have to note what’s really cringe-worthy in this article — how it completely misrepresents how mental disorders are diagnosed in practice today. Take this explanation, for instance:

Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.

Historically, [Dr. Darrel A. Regier, research director at the American Psychiatric Association] said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.

Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.

I’m not sure if this is a bad translation of what Dr. Regier was trying to say or what, but the suggestion that a person is only diagnosed with a single diagnostic label (and can only be treated for a single disorder at a time) is simply untrue (and a ridiculous assertion). People are diagnosed — and treated — every day with more than one disorder. Indeed, there are thousands of children who carry both an ADHD diagnosis and an autism diagnosis — the two are not mutually exclusive (nor have they ever been). So while maybe back in the 1970s the DSM was used in the manner Dr. Regier describes, it hasn’t been used in that manner in modern practice for decades.

But getting back to the core reason why Asperger’s Syndrome, as a diagnosis, may be going away is because the new DSM is apparently going more toward a continuum approach for disorders. It actually already has this capability in the current edition, but it’s not a part of every diagnosis (for instance, you’ll find it for major depressive disorder, but not for things like ADHD). I believe the new DSM will ensure that every disorder is treated equally in this way — you can have mild ADHD, moderate ADHD, or severe ADHD.

In the same manner, you can have a mild form of autism and it’ll just be called “mild autism” — not Asperger’s.

I think the effort to make the diagnostic manual of mental disorders more internally consistent is a needed change. But doing away with well-used labels like “Asperger’s” is perhaps prematurely unnecessary; why couldn’t we use both labels to describe this form of mild autism? Certainly exceptions to the consistency can be made (and will have to be made anyway, since not every disorder will fit nicely into any classification system one could design).

While not ideal, allowances should be made during the transitional edition of this mainstay of mental disorder diagnoses to ensure that everybody embraces it — both patients and professionals alike. It could be as simple as including the phrase, “(also known as Asperger’s Syndrome)” next to the “mild autism” diagnostic criteria.

Read the full article: A Vanishing Diagnosis for Asperger’s Syndrome