Autism Awareness: Changes in DSM-V

Today is designated as Autism Awareness Day (and April as Autism Awareness Month). The goal is to increase both visibility and understanding of the "Autism Spectrum Disorders," which have also been referred to as "Pervasive Developmental Disorders" (PDD) - disorders involving severe and lasting impairment in several areas of development, most notably social skills and communication, sensory integration, and rigid/repetitive behaviors, interests and activities.

To date, this spectrum has included separate diagnoses: Autistic Disorder, Rett's Disorder, Childhood Disintegrative Disorder, Asperger's Syndrome, and PDD Not Otherwise Specified. However, this is about to change. When the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DMS-V) takes effect next month, there will be a significant change in these diagnoses. Rett's Disorder will continue to be a separate disorder, and no longer considered part of the autism spectrum (which makes sense due to its unique symptoms, including deceleration of head growth between 5-48 months of age, and loss of purposeful hand movements, replaced by repetitive, "stereotyped" hand movement [hand washing or wringing motions]). All of the other diagnoses currently classified as PDD will be be compined into a new diagnosis: Autism Spectrum Disorder (ASD).

The current (DSM-IV) criteria for Autism focus on three categories of symptoms: communication, social skills, and repetitive/stereotyped behaviors, interests, and activities. The new criteria for ASD will include only two categories: social communication, and repetitive/stereotyped behaviors (etc.). The latter category will also reportedly include recognition of issues with sensory integration/stimulation. Language delays will be removed as a criterion, since there can be many reasons for such delays, and delays are not seen universally in those with PDD/ASD. A new diagnosis is also being added for those without repetitive/stereotyped behaviors: Social Communciation Disorder.

While the DSM-IV criteria have been associated with inconsistent diagnoses from clinician to clinician (i.e., low reliability), preliminary results reportedly show good reliability. A retrospective application of the new criteria to individuals with current PDD diagnoses also shows that most continue to meet the revised criteria for ASD. Most of those who no longer meet criteria for ASD do meet the criteria for Social Communication Disorder.

These latter findings address the biggest concern within the Autism community: would those who have a current PDD diagnosis no longer meet criteria and therefore become ineligible for services they currently receive. Those with current diagnoses have also been reassured that they will automatically be able to maintain an ASD diagnosis; the revised criteria will be applied primarily to newly diagnosis individuals with ASD.

Nevertheless, advocacy groups are cautious about the changes, waiting to see results from prospective studies. There is uncertainty about how the criteria will work with very young children and/or adults. There are also some reservations from those who identify with the Asperger's community (or possibly other PDDs) about relinquishing that separate identity. Overall, while the changes seem to be scientifically sound, their actual human impact remains to be seen.

Parity

For a long time, insurance companies set a limit on the number of therapy sessions their members could receive each year, and refused to pay for additional sessions, regardless of the client's condition or need. Typically, the maximum was 24 sessions or less a year. That adds up to less than every other week - certainly less than the weekly sessions most therapists and clients prefer.

Insurance policies still specify these session limits, but thankfully, many clients are now exempt, thanks to legislation requiring "parity." Basically, the law now requires that mental health problems with a "biological" basis receive coverage equal to that provided for (physical) medical conditions. In other words, if the insurance company would not put a session limit on the number of times you could see a physician for diabetes, it cannot then limit the number of times you see your therapist for Bipolar Disorder.

This is good news for therapists - we can now see clients as frequently as they need to be seen, rather than disrupting the momentum of treatment with inconsistent session, and/or breaking off treatment when it is still needed...if they have a problem classified as "biologically based."

That, of course, raises all kinds of new issues. For example, while it is usually relatively clear that a medical condition has a biological basis, it can be harder to determine which mental or emotional conditions have a biological cause or component. Postmodern, constructionist theories suggest that diagnosis and etiology are to a large extent an extension of socially agreement rather than objective "fact." Thus, our diagnostic categories may be more about what DSM committees agree upon than about clear biological distinctions.

When we make decisions about which diagnosis to assign and/or bill for, there's often more than one that may be appropriate. Since NOT all diagnosis are covered by parity, it behooves us and our clients to familiarize ourselves with the federal and state parity laws. For example, Major Depressive Disorder is classified as a biologically-based condition, but Dysthymic Disorder and Depressive Disorder NOS are not. Diagnositc decisions therefore carry a lot of weight. Similarly, when it comes to billing, if someone has multiple diagnoses, but only one is classified as "biologically based," you would want to list that one as the primary billing diagnosis (since if you list the other, your claims will be denied after the session limit has been reached).

Overall, parity is a good thing: it allows clients to receive needed services much more consistently than before the law was passed. However, it does raise important questions about the nature of mental and emotion issues, the nature of (mental) healthcare, and the way we define diagnosis and etiology. We have many more questions to answer before we call really say that we have achieved "parity."

Superstitions

People, as a species, seem to be prone to superstition - an irrational belief that something mundane has supernaturally significance. We often see it with athletes, who tend to develop elaborate superstitions about what will help them win. Examples include eating specific things, wearing specific objects or jewelry, not shaving, etc.
While reporters talk about such superstitions leading up to big games, nobody considers them particularly odd or unusual. Sure, they may make little sense and have no evidence to support them, but we understand because we all have had some kind of superstition at some point in our lives.

Two things strike me about superstitions: they illustrate the fact that all of us sometimes believe irrational things, and beg the question of how we distinguish between "normal" irrationality, and "abnormal" irrationality - i.e., mental illness.

First the "normal" side: I think people tend to revert to superstition, and other forms of irrationality and magical thinking, when they can't make sense of events using more rational explanations. For example, superstitions may be a way to cope with the reality that something is unpredictable, or beyond one's control, by imposing a system of logic and control not based in reality. The difference between such thinking and delusion is that most of us know that we're being superstitious or irrational - we know, for example, that not shaving during the playoffs probably has very little bearing on the outcome. However, nobody wants to be the one to break the superstition, just in case it somehow changes the outcome. After all, we know from placebos that believing something can cause real change.

In contrast, mental illness tends to be characterized by the lack of awareness of irrationality, or belief that the irrational is actually rational. While most of us accept and respond to data that contradicts our irrational thinking, delusions tend to be impervious to contradictory data, and distort facts so that they are perceived as supporting evidence.

Another difference is the degree of upset caused by threats to an irrational system of thought or behavior: challenging delusions or interfering with compulsive behavior may produce intense anxiety or anger, in contrast to mild anxiety or irritation when we're prevented from following a superstition. Similarly, while superstitions tend not to take up much of our time and energy, the irrational beliefs characterizing mental illness tend to take up a great deal of one's time, energy, and thinking, thereby interfering with functioning.

Lastly, it's worth noting that what is considered irrational, and what distinguishes "normal" versus "abnormal" irrationality, is influenced by one's cultural context and related worldview. Just because we consider something false doesn't mean it's not widely believed in another culture, and definitely doesn't make it delusional!

How do you think about "normal" irrationality, and how would you differentiate between "normal" and "abnormal" degrees of irrationality?

Psychosis from the Inside Out

It used to make me very uncomfortable to work with clients who were psychotic. In the act of empathy, I would find myself trying to follow their thought processes. My mind, however, pulled back from the experience of insanity with a sort of primal anxiety - as if my brain feared that, by understanding or empthazing with the experience of psychosis, it could lose its own equilibrium.

At the beginning of Surviving Schizophrenia: A Manual for Families, Patients, and Providers(which I consider an absolute must-read), Dr. Torrey talks about how schizophrenia is a tragedy that elicits little sympathy because people can't imagine (or can't tolerate imagining) it happening to them. The first, best thing we can do to help clients with psychosis is to understand, and help their families understand, what they're experiencing internally.

To that end, Dr. Torrey offers us a glimpse into the inner experience of people with schizophrenia, in their own words, highlighting the changes that occur as a result of the illness:

• Alterations of the senses
• The most common change, especially early in the course of illness, is heightening of the senses, which become overacute
• "noises all seem louder to me than they were before....it makes it difficult to keep your mind on something when there's so much going on that you can't help listening to."
• "Colors seem to be brighter now, almost as if they are luminous painting. I'm not sure if things are solid until I touch them."
• As a result of heightened senses, the person may experience their senses as being flooded with stimuli
• "Sometimes when people speak to me my head is overloaded. It's too much to hold at once."
• Stimuli may become distorted
• "suddenly the room became enormous, illuminated by a dreadful electric light that cast false shadows....voices were metallic, without warmth or color. From time to time, a word detached itself from the rest. It repeated itself over and over in my head, absurd, as though cut off by a knife."
• The person may also be flooded by internal stimuli - thoughts and memories. At times these thoughts are experienced as if they have been inserted into the person's head by someone else.
• "a local pharmacist was tormenting me by inserting his thoughts into my head and inducing me to buy things I had no use for."
• While heightened senses are often an early symptom of schizophrenia, the opposite often happens later in its course, and people find their senses blunted (this can include the ability to perceive physical pain - a definite health risk!)
• "However hard I looked it was as if I was looking through a daydream and the mass of detail, such as teh pattern on a carpet, became lost."
• Inability to sort and interpret sensations, and consequently, to respond appropriately
• Normally, the brain sorts through incoming information, interprets it using logic and past experiences, and provides an appropriate (often learned) response. In schizophrenia, this process breaks down
• "If I look at my watch, I see the watchstrap, watch, face, hands, and so on, then I have got to put them together to get it into one piece."
• It can be particularly hard to integrate two different types of stimuli
• "I can't concentrate on television because I can't watch the screen and listen to what is being said at the same time."
• Incoming information is often connected with inappropriate responses - such as laughing when told a loved one has died. Such responses interfere with the ability to relate to other people.
• Thoughts become disorganized or disjointed
• "My thoughts get all jumbled up, I start thinking or talking about something but I never get there."
• The person may also experience periods of thought blocking
• "Sometimes I commit brief disappearances - my mind pauses and closes down for a short while, like falling asleep suddenly"
• Altered sense of self - specifically the sense of where one's body stops and the outside world begins
• The person may experience somatic perceptual distortions
• "Hands, arms, adn legs soemtimes feel an inch to the side of where they really are at. Fingers at times feel and look longer or shorter than usual. My face can feel twice as long as it is."
• They may have difficulty distinguishing themselves from another person, or their reflection
• "several of the patients having breakfast were me. I recognized them by the way they held their knives and forks."
• Different body parts may seem to take on lives of their own
• "The arms and legs are apart and away from me and they go on their own. That's when I feel I am the other person and copy their movements, or else stop and stand like a statue."
• Changes in emotions
• Early in the illness, depression, guilt, fear, exaggerated and rapidly fluxtuating emotions are common
• "I sat in my basement with a fear that I could not control. I was totally afraid - just from watching my cat look out the window."
• Later in the illness, emotions flatten (further hampering relationships by impeding empathy on both sides) - the person may feel "nothing," or they may have emotions but be unable to show them.
• Changes in movement
• Movement may speed up, slow down, and/or become clumsy
• Spontaneity decreases, and repetitive movements may occur
• Some may become catatonic, with the person not moving for an extended period of time
• Changes in behavior
• Other symptoms may cause the person to withdraw and become immobile at times, often to moderate the incoming flood of stimuli.
• Movements are slower due to difficulties with integration
• "If I do something like going for a drink of water, I've got to go over each detail - find cup, walk over, turn tap, fill cup, turn tap off, drink it. I keep building up a picture."
• The person may also engage in ritualistic behaviors - which have a meaning and purpose to the person but seem bizarre to others
• The person may repeat whatever is said to them (echolalia) or mimic behavior (echopraxia)
• Decreased awareness of illness (what we professionals euphemistically call "insight")
• In the early stages of schizophrenia, the person is usually aware that something is going wrong with their brain (which is the most tragic element of the experience, from my perspective). When the disease is fully manifest, however, most lose this awareness as a result of damage to specific parts of the brain.
• Decreased insight results in decreased depression and suicide, but increased involuntary hospitalization and medication refusal.

Dr. Torrey recommends trying to understand schizophrenia by going to an art museum and imagining what it might be like to live inside the paintings. Others have invented a virtual reality machine that mimics hallucinations. However you go about it, I recommend doing what you can to develop your understand of and empathy for this debilitating illness.

For more information, check out the rest of Dr. Torrey's book:                     

  

Practicing Wisdom

If you're in the field, you've heard the term "Practice Wisdom." It's used to describe the intuition clinicians develop through experience - a sixth sense or "third ear" that can't be learned in books and is hard to put into words.

It's interesting to note the differences between how professional organizations and third party payors have tried to "manualize" (i.e., standardize) treatment, and what experienced clinicians know and do in practice.

Take the Diagnostic and Statistical Manual of Mental Disorders, for example, soon coming out in its 5th edition. The purpose of the DSM is to standardize diagnosis so that we can communicate about clients (in research/academic arenas, and treatment collaborations) with some confidence that we're speaking a common language. But, the "standardized" diagnoses really vary widely - an individual has to have a minimum number of symptoms to qualify, but many different combinations of symptoms may all qualify for the same diagnosis.

In contrast, experienced clinicians recognize the "feel" of various diagnoses, and sometimes subtypes of commonly-combined symptoms. For example, depression can be characterized by neurovegatative slowing (increased sleep, increased appetite, psychomotor retardation, avolition, anergia, and so on), or the less common "agitated depression" (decreased sleep, decreased appetite, psychomotor agitation).

Even more tricky, how does one differentiate between psychosis that is part of a mood disorder (e.g., depression with psychotic features) and a primary psychosis (schizophrenia or schizoaffective disorder)? For me, it's a "feel" I get from the person: how present they feel in the room, how distressed they are by the psychosis, how aware they are of other people...and a certain look around the eyes.

How do you find yourself relying on specific practice wisdom to clarify what the DSM doesn't?