Autism Spectrum Disorder websites fully updated for 2014

I am presenting two full-day workshops this week on Autism Spectrum Disorders.  As part of my prep, I updated my list of websites with information helpful to people on the spectrum and those who care about them or are seeking more information.  I recommend each of these.
Every site below is one I have visited in November 2013, so they should be up to date, so I can guarantee no dead links if you're seeing this post in 2013, and if you comment below on any broken links or new sites for me to recommend, I'll keep it updated.  These are in the order I came across them this month, not any order of priority.
This and other information on ASDs will be at my new blog, http://autismspectra.blogspot.com/

http://www.autismtoday.com/  --trainings, conferences, resources for professionals, also lists of professionals with expertise

http://autismbeacon.com/home  --parent resources, material on lifestyle issues such as safety and hygiene, focused on younger and more severe cases but material on Asperger’s too.

http://autismwomensnetwork.org/  --descriptions, forums, although site is currently being rebuilt, only basic articles available.

http://milestones.org/ --Northern Ohio-based organization for families of people on the spectrum; offers social activities, empowerment network for parents, teen and adult services, and an annual conference in Cleveland in mid-June (I have not attended).

https://sfari.org/  -- News from a foundation supporting research on autism causes and treatment.  Alternative to Autism Speaks.

http://www.autismspeaks.org/ -- supports autism research with the hope of curing autism.   Not as sympathetic to the idea of autism as an alternative mind structure that can be part of a happy life.  Sympathetic to parents, in fact sees autism as a terrible tragedy affecting parents.  But it’s evolving, adding information for helping adults with autism.

http://www.asquarterly.com/ --Autism Spectrum quarterly, a “Magajournal” of personal stories, promotional pieces for treatment programs, and digested research information.

http://www.autismdailynewscast.com/  --News, especially science and policies

http://autism.about.com/  --general information and questions

http://www.webmd.com/brain/autism/medical-reference-index-- Widely trusted source, WebMD, assembling research information on autism, brain, and body.

http://www.autismbookstore.com --Sponsored by the Autism Society of North Carolina, but has resources for everyone, is up to date, easy to use, with many topical categories, listing new items and sale items.  Much easier to use for searching than Amazon, which includes tons of self-published e-books as 80% of search results.

http://www.snagglebox.com/ --blog related to ASDs, lots of common sense advice to parents and teachers and clinicians. 

National Institutes of Health, under their National Institute of Neurological Disorders and Stroke: http://www.ninds.nih.gov/disorders/autism/detail_autism.htm#243553082

Recommended at the above website:

Autism Network International (ANI)  http://www.ani.ac

Autism National Committee (AUTCOM) http://www.autcom.org

Autism Research Institute (ARI)  http://www.autismresearchinstitute.com

Autism Science Foundation http://www.autismsciencefoundation.org/

Autism Society of America http://www.autism-society.org 

    --links and to local resources, serves   clients, family members, professionals, advocates

Association for Science in Autism Treatment  http://www.asatonline.org

http://glennrowe.net/baroncohen/faces/eyestest.aspx

--online practice in reading emotions by just looking at the eyes.

http://www.iancommunity.org/ Interactive Autism Network

   --  Opportunities to participate in research, link to researchers

   -- participate in an online community of families of people with autism

http://researchautism.net/pages/welcome/home.ikml  --UK research org  

http://bestpracticeautism.blogspot.com/  --by Lee Wilkinson, clinician and author of a lot of articles which aid in the undestanding and treatment of ASD

The power and magic of engagement

"How can I be happy?"
"I know it's my responsibility to make myself happy, but I can't keep it up."

Clients trying to emerge from depression often seek a path toward happiness.

Sometimes they achieve a feeling of happiness, even euphoria, but it doesn't last.  When depression returns, the client may feel that they failed at the goal of finding happiness.  In my experience with seeing clients emerge from depression into well-being, the real failure might be that they were seeking an unsustainable goal.

After the impulse to flee from depression into buying stuff, love affairs, entertainment, reassurance, deep insights about better ways to think, sometimes clients actually latch onto a new activity or interest that they like pursuing in an of itself, not as a psychotherapeutic intervention.  Or they may drop habits that were part of the depressive lifestyle and adopt new ones, by choice rather than routine.  Or they may take a fresh look at the people and roles that are part of their daily lives, and take initiative in those roles and interactions.

Ironically, these acts of engaging with the world may lead to more lasting contentment than seeking happiness itself.  Waiting to find the happy place can leave you feeling lost and disappointed, and back into depression.

If depression includes an element of learned helplessness, then actively making choices and initiating changes in behavior creates an intuitive experience of learned involvement, purpose, mastery, control.

As I found myself saying to a client this week, in my inspiration for making this post:  Sometimes, for some people, the opposite of suicidal feelings (or apathetic resignation, for a client earlier in the week) might not be happiness, it might be: engagement.

Addendum:  this idea of seeking engagement rather than happiness has worked for an anxious client too: it was a relief for her to drop the agenda of figuring out how to discover some ideal place called happiness, and instead just decide what action she wanted to take next, even if that was to simply drop her simulated happy face, be silent, and rest.  Even rest can be a form of being more actively engaged:  instead of putting on a fake smile to be "strong," lie down and really let your head nestle into that pillow.

How will clinicians do DSM-5 diagnosis with no Axes?

Okay, these are not the Axes in the DSM, but this is the kind
of Axes we're talking about; various dimensions that can
describe an object, or person.  Axes work best for dimensions
that can be counted, like levels of severity of different
symptoms; doesn't work so well to make a picture based
on diagnostic labels.  Another reason to drop "Axes."

That’s “Ax-eees”, plural of ‘axis,’ not “Ax-iz,” plural of ‘ax.’

Clinicians are faced with using the first major revision to the diagnostic manual in 19 years.  Here’s a behind the scenes look at the changes in how they’ll manage writing down a diagnosis.  Actually choosing which diagnosis is correct will be a matter of mastering the new and changed diagnostic criteria; I’ll be posting about that, category by category.

The most burning question at my last presentation on the DSM 5 was:  How do I “diagnose,” which meant in part, “what do I write on the form now that there won’t be 5 Axes to fill out?” 

Here’s a crosswalk from the old process to the new process: 

Until summer 2014 (or later, depending on when agency paperwork is updated) “Diagnosing” used to mean filling in information in five “Axes” on a form:

Axis I:  Clinical disorders and other conditions (“V” codes) that are a focus of clinical attention

            à  The primary and secondary conditions being treated by the person filling out the form, and other diagnoses also present but not as much the focus of treatment

Axis II:  Presence of personality disorder or cognitive disability/”mental retardation”

à Conditions that might not necessarily be the subject of treatment, but that affect how treatment proceeds.

Axis III:  Medical Conditions

à Especially those which may affect mental health problems and treatment

Axis IV:  Psychosocial Stressors

            à A list of conditions outside the individual which affect mental health problems and treatment

Axis V:  Global Assessment of Functioning (GAF)

            à  a number from 1-100 (0 used only if there is no information) describing the impact of the mental health condition on the person’s ability to successfully manage the tasks of everyday life.   This number was used as a comparison point to show progress in treatment. 

BUT THE FIVE AXES ARE GONE!  WHAT DO WE DO NOW?

Basic answer:  Just list the diagnosis you’re focusing on, and others that might be important to mention.

When I say “basic” I don’t mean “easy”; you do have to use the revised manual and find out what’s a match for your clients; more guidance on that for a variety of different conditions in upcoming posts. 

First, we have some Axes to mourn.  

Where will we put that important information that was in the Axes?

Axis I:  mental health diagnosis will still be there.  There will be some more writing here than in the  past:  The codes will not be enough to clarify all the “specifiers” that must be written our verbally, such as the course, severity, and associated features that can go along with a condition.  More about specifiers soon.

Axis II:  Personality Disorders and Intellectual Disabilities (moving on from the old term “mental retardation”) are just listed like any other diagnosis, though it’s still likely in many settings that there is some other condition that is the primary focus of treatment.

Axis III:  Medical conditions are sometimes the direct cause of the mental health symptoms and should be listed separately as a medical diagnosis, and then listed as part of the diagnosis, as the example on p. 181 of the DSM-5:  244.9 hypothyroidism; 293.83 Depressive Disorder due to hypothyroidism.

Axis IV: Psychosocial stressors are included in the expanded list of V codes, “Other Conditions that may be a Focus of Clinical Attention.”

Axis V:  GAF rating scores for the client as a whole are gone, but we are increasingly rating severity as part of the diagnostic process.  For many diagnoses there are guidelines for rating severity of symptoms and/or severity of the impact on functioning. 

What has changed most in the process of writing down a diagnosis:  The loss of the Axes.  Separating this kind of information into five Axes has been… given the Ax. 

Coming up:  how to search for the right diagnosis,

How to correctly diagnose using the criteria for the brand new diagnoses found in the DSM-5

Important changes to the criteria for existing diagnoses,

Preventing overdiagnosis and misdiagnosis,

Changes in thinking about some diagnoses reflected in the new categories and chapters.   For example, OCD and PTSD are moved out of the category of Anxiety Disorders, but Selective Mutism is moved IN to the category of Anxiety Disorders,

And more, including responses to questions about the DSM or some of the other realms of Mental Health Knowledge. 

That controversial diagnostic manual DSM-5

It has been popular in the blogosphere to critique the criteria for diagnosing mental health disorders.  Some writers criticize the whole diagnostic establishment of the American Psychiatric Association, claiming that this is an effort to push drugs and stigmatize people.  Other critics* are focused on the newest version of the APA's diagnostic manual, the DSM-5.
    I'd like to take a different approach to talking about the new diagnostic manual.  It's here.  It's what we will be using.  Let's talk about how to prevent stigma rather than saying that the manual has the power to create it.  Let's talk about how to prevent overdiagnosis and thus overmedicating rather than saying it will automatically happen. And when we get into specific controversies, let's look at the facts and details rather than just echo slogans from yet another blogger who hasn't read it.   I will address some of the main controversies head on (as I did in a post already, exerpted from material on several DSM controversies that I've written for an upcoming edition of a textbook on mental health disorders).
    I welcome comments on my take on these controversies, but we all would benefit more if you comment with a DSM-5 open in front of you rather than echoing what you've heard about what's inside its 900+ pages.  Over the summer and early fall of 2013, after teaching a college course about mental health diagnosis,  I've paged through the entire manual side by side with the previous edition of the manual, in preparation for training people about mental health diagnosis in general and for specific diagnoses.  So, we can disagree in our predictions about the impact of the new criteria, but I will make sure we base our discussion on some agreement about what the manual actually says.  I'm stunned that after 11 solid months of researching the DSM, it is very hard to find comments on the internet based on actual information rather than speculation and echoes.  So I'm putting this together myself.  I want to simply lay out the facts and get mental health clinicians back to work helping clients rather than alarming them, and getting clients and patients back work trusting clinicians (psychiatrists, clinical social workers, and other psychotherapeutic professionals) rather than fearing them and the scary blue books.

*I find it interesting that the two main critics of the new version, Allen Frances and Robert Spitzer, were the coordinators of the publication of the previous versions of the manual and began their criticisms, years before the manual were produced, based on the new DSM task force being too secretive, even though subsequent criticism of the criteria, starting years before the manual was published, were based on proposed versions made available for public comment.  Is this a case sour grapes that they weren't in charge any more? That's speculation on my part, and they know the internal politics of the process much, much better than I do. But some of the alarming pronouncements by Frances and others about the Bereavement Exclusion and DMDD and other diagnostic topics are just simply wrong, or at least disconnected with the facts except the distorted, selected, neglectful version of the facts that fit a preconceived notion.
 
      Controversy generates viewership.  I wouldn't mind readership (though I have no books to sell nor any other benefit I can think of), but I'd rather generate knowledge and agreement than alarm and controversy.  If you're interested in the same, keep visiting; I'll be hitting the major controversies and then going diagnosis by diagnosis to talk about what's new in the first change in diagnostic criteria since 1994, affecting nearly every diagnosis you'll encounter.  I hope this will be helpful.

Panic attacks and Panic Disorder: Fearing the false alarm

People with Panic Disorder have a complex experience of suffering that is sometimes misunderstood.

A panic attack, as I define it, is not just a moment of severe anxiety, but comes with a lot of physical symptoms, such as heart racing and pounding, hands tingling and sweating, feeling like you're going to have a heart attack.  Some of these symptoms are caused or worsened by hyperventilation.  Together, they feel like you're going to die if the symptoms continue.

For people with frequent panic attacks, they may have a "fight or flight or freeze" threat response system (mainly involving the ironically named sympathetic nervous system, as well as some hormones and parts of the brain) that is on overdrive, that can be set off randomly, or set off by a tiny trigger or action that elevates heart rate.  In other worse, our body reacts as if there is a threat when there is none.

For people with Panic Disorder, the real misery happens in between the panic attacks: worrying about the next one, and altering one's life in attempts to avoid an attack.  Worrying, and being hyperaware of any symptom related to panic (say, rapid heartbeat after climbing the stairs), can turn ordinary symptoms and situations into a panic attack about the fear of a panic attack.  Avoiding situations that might trigger an attack can escalate into Agoraphobia if the person seeks 100% certainty of never having an attack.

With my clients who are prone to panic attacks, I describe  an analogy to a smoke detector that is oversensitive, and goes off even when there is no smoke. There is a loud annoying alarm sound when there is no real threat.  Obeying the alarm just interrupts your life unnecessarily.  Avoiding the alarm means avoiding part or all of your home!  The key to dealing with a false alarm is to find it annoying rather than finding it threatening.  The key to dealing with a panic attack is learning to wait for the symptoms to pass rather than escalating them by worrying about them.
      Sometimes treatment includes intentionally raising your heart rate or making it hard to breath (breathing through a straw) to practice finding the symptom uncomfortable instead of finding it as proof that there is a danger that we need to run away from.   Treatment can also include gaining master over the symptoms by learning to slow down and deepen one's breathing (rapid shallow breathing messes with the body's O2/CO2 balance and can lead to tingling palms, palpitations, dizziness, and more).

In between panic attacks (for some people with severe panic disorder, there has not been an actual panic attack in a year, but still daily misery worrying and avoiding life):  The key to getting better is to realize that there never was real danger from outside; the real threat to a happy life is the worrying and avoidance itself.

Reversing this escalation of worry and avoidance is the key to treatment; trying to avoid panic attacks themselves is not treatment, it's the problem, it's what stresses people out and distorts lifestyles and relationships in between attacks.  If you've practiced handling symptoms of an attack itself, you can then practice not giving in to the alarms, not trying to avoid something that is just going to happen randomly, gaining confidence that if the sympathetic nervous system "burp" happened, you'd be able handle it, by waiting it out, not letting it gain power over you, not worsening it by shallow/hyperventilating breathing.

Panic Disorder, and its treatment, varies from person to person.  I hope that what you take away here is that full Panic Disorder is much more complex and troubling than a single panic attack itself.

One of the big Aha! moments of treating this or any other anxiety problem is realizing that the real problem, the misery that fills up the day, is the anxiety itself, and worse, the attempts to avoid anxiety.

The liberating "Aha" moment in Panic Disorder  Realizing that, although it's annoying to deal with, we don't have to fear, or obey, a false alarm.  We can occasionally be annoyed, and the rest of the time, freely live.

The myth of getting motivated

"Motivate me!"
   Some of my clients know of a change they want to make in their behaviors, relationships, thoughts, or ways of managing feelings, but ask "how can I get motivated to change?" 
   There are three related and often-confused concepts here:  Incentive,  Motivation, and "Should's" (often disguised as "goals"). 
     "I know I should exercise... I know I should work harder... I know I should be more supportive... I know I should get out of the house instead of brooding..."  I sometimes tell my clients that my office has a No-Should policy.  The main impact of these statements is often that we feel bad, incompetent, discouraged, knowing that we're not doing what we know is good for us.  "Shoulds" are shaming, not motivating.  For some people, shame can motivate change, just as anger can do so.  For people who are depressed, strongly anxious, or otherwise stuck in unhealthy habits of mind, behavior, and relating, these feelings of shame or anger at one's current state don't feel a "kick in the pants" of motivation, they only feel kicked while they're down. 
    "Incentive", I'm defining as: the payoff for changing, or the penalty for not changing.  Incentives don't work very well as motivators for any entrenched mental health problem.  The fact that life would be easier and more peaceful if you stopped your addictive or avoidant or vengeful behaviors doesn't make you magically able to do so, in fact doesn't do much to make you want to change. It can be easier to stick with the short-term reward of avoiding discomfort even if there is a potential payoff for change.  Avoiding punishment does not lead to increased positive behaviors.  Payoffs do sometimes increase desired behaviors, but are often ineffective in the long run, especially if the involve the efforts of well-intentioned people to reward your improved behaviors, because they don't usually build intrinsic motivation, the desire to change for my own sake. 
   "Motivation," in the sense meant by my clients seeking this feeling in psychotherapy, I'm defining as:  the the anticipatory excitement about carrying out an upcoming change or action.
     While it is true that having an incentive to change can help get you started, the emotion we call "motivation" doesn't usually show up until we are already having some success that feels good. Motivation is sometimes felt in a moment of insight when a change makes sense, when we've had a perspective shift; I've had clients leave sessions excited by a new way of thinking about their actions that leads directly to changes in their actions.  But in most cases, like the one we started with here where they change is obvious but seems foreboding, emotion isn't an emotion we can create out of faith that change will work; it is something that comes from already taking action and finding out what works.  Motivation comes more often from momentum than from contemplation.  
    Waiting for motivation, ironically, delays action, and thus delays your chance to feel that great feeling of motivation.  Find a small change in your pattern of behavior that you can rehearse mentally and then carry out.  Plan for how you'll manage the forces that will pull you back into your current habits, reactions, sequences of thought and action.  Then just get started first even though you're not feeling it yet; motivation will come later.  
     There's a reason they say "Fake it 'till you make it." You can act confident and later acquire confidence; similarly, you can act in other new ways and then acquire motivation to continue.  To get started, you can use incentives, incremental change, habit analysis as in the book The Power of Habit.  However you start, don't wait around for motivation to come first; be committed enough to change that you'll start even if it feels hard, uncomfortable, unnatural, almost not worth the effort.  Then, once you're started, if you want a bit of that motivation feeling, pay attention to your success, not just the road far ahead.  Then keep rolling, keep building momentum.  
     Enjoy the change after it happens, rather than expecting to always feel excited before you start.  Want an emotion to feel before you start?  How about anger, just enough anger at the way things are, to motivate you to act.  Anger can even emerge from depression; that irritability can be channeled into change.  Or anxiety, just enough worrying about the future to get you to strategize.  Or love, just enough to commit you to something outside of your current stuck state.  But motivation:  if the excitement isn't there at the beginning, it might come later, or you might not need it at all, you may simply change, and keep things going in a new way, because it works better. 

Welcome to MHK with Jim

Well, Through the magic of Google, my post on DMDD got a few page views without any action on my part to link other people here.

Now I'm committed.

After 25 years of helping people as a psychotherapist, counselor, teacher, supervisor, organizer, I've picked up a few things about mental health conditions, learning and developing some strategies for mental healh diagnosis/understanding and treatment.  I've been leading workshops, writing articles, and teaching courses for ten years, and have been doing some writing and editing for a psych textbook publisher.  I've been answering people's questions on .

I'd like to help you understand yourself and other people, and what happens in a therapy office.

Questions are welcome, but after answering a lot of questions for clients, people at my workshops, and on Quora, Academia.edu, and ResearchGate, I've got some insights and information to offer that hopefully will be useful to someone.

Topics coming up:  Anxiety, autism spectrum disorders, anger, bullying, teamwork, ADHD, psychotherapy,  ethics, supervision, sleep and sleep disorders, stimulants, hoarding, OCD, Body Dysmorphic Disorder, adolescence, the brain and body, and the mind-body interaction (including the science of embodied cognition, why holding a warm cup makes you feel more "warm" toward people).

So it begins!

Will tantrums be overdiagnosed as DMDD?

There are many controversial changes to the Diagnostic and Statistical Manual of Mental Disorders, which recently had its first full revision in 19 years.  One of these changes is the new diagnosis of DMDD, Disruptive Mood Dysregulation Disorder.
     DMDD is one of many changes that has generated alarming statements based on inaccurate information.  I cannot claim that I know the alarming predictions are wrong, but on this and other issues I can at least help the discussion start with important information we can agree on, such as what the diagnostic criteria actually say.  Whether people will misuse the manual and ignore the criteria and overdiagnose tantrums as a mental disorder depends on getting accurate information out there.

The work below is based on my summary of the criteria; others have posted the full criteria but I will choose not to violate APA's copyright nor use more words than necessary.  The words below will be published in a different form in one of the "Controversy Boxes" I wrote for Abnormal Psychology by Robin Rosenberg and Stephen Kosslyn (Worth/MacMillan, 2014).  I have more material available about how to differentiate DMDD from ODD, ADHD, Bipolar, Intermittent Explosive Disorder, if anyone is interested.

Disruptive Mood Dysregulation Disorder:  Overlabeling of tantrums?

Disruptive Mood Dysregulation Disorder, or DMDD, is a diagnosis designed to be a more accurate description of kids who have out of control rage episodes and were getting inappropriately labeled as having bipolar disorder.

The criteria for using this diagnosis, which is brand new in the DSM 5:

A.       Temper outbursts, including verbal or physical aggression, with a duration or intensity that is out of proportion to the situation and inconsistent with developmental level.

B.       These outbursts happen 3 times a week or more.

C.       Even between outbursts, mood is persistently irritable or angry.

D-H.  This pattern starts between ages 6-10 in at least two settings, continue for at least a year with no 3 month break, and does NOT include more than a day of mania, nor does it happen exclusively as a function of Major Depressive Disorder or other mental disorder.

The controversy, the critique:   Just as bipolar disorder diagnosis was overused to describe these kids with out of control rage episodes, this diagnosis might be used to label kid who merely have a lot of tantrums, including those with tantrums that are just manipulation of adults.  Or, it might focus blame on kids when the problem is in the family. This diagnosis might give those kids an excuse for their behavior or lead to overmedicating the kids.

The other side of this issue:   The severity, duration and frequency criteria are designed to prevent diagnosing kids who are sometimes grumpy and tantruming. To apply this diagnosis, there must be a persistent daily irritable mood that exists even when there is no reward as there might be for a tantrum.  The rages must also show up at school and home and not be an expected response to a home or school situation.  This diagnosis will theoretically lead to FEWER kids being medicated, since they will no longer be considered to have bipolar disorder unless they have the symptoms and duration of a true manic episode.

Critical thinking questions:  Even with narrow criteria designed to prevent overdiagnosing, won’t some people just associated this diagnosis with a grumpy tantruming kid and overuse it?  How can we prevent this? Was there a better solution to the problem of overdiagnosing bipolar besides adding another diagnosis?