You may remember the hype. Almost one year ago, the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was published. Unless you are in the field, it may not ring a bell. However, what you most likely DO remember are the thought-provoking (yet incredibly uninformative) news headlines that read something along the lines of, “Autism Diagnosis Reduced by a Third!” No, unfortunately, there was no overnight cure for autism or even a sudden dramatic decrease of those who are affected by it. What happened was a change in diagnostic criteria, and I’m going to tell you why this matters while sparing you a ton of reading. You’re welcome.

Here is what happened. Many psychiatrists and other like professionals were uncomfortable with there being such a broad range of standards comprised with testing “on the spectrum”; they were too vague. Therefore, a team of psychiatrists, or the DSM-5 committee, created what they considered to be clearer and more precise diagnostic criteria, hoping that these new standards would effectively translate to those who are involved with screening for autism. Categories contribute to mutual understandings and psychiatrists love categories. Lo and behold, instead of three categories of ASD symptoms, which were previously lumped into one key diagnosis, there are now two – social-communication impairment and repetitive/restricted behaviors. However, here’s the “but”, and it’s a big “but”… Now, a Social Communication Impairment without at least two repetitive/restricted behaviors (think here of the odd fascinations, awkward body movements, inflexible routines, etc.) are no longer considered autism, but are now categorized as Social Communication Disorder (SCD).

Stay with me, because this part is important. Although the DSM-5 committee recommended the contrary, many schools and health insurers are asking that children be rescreened under the new guidelines, hence losing their diagnosis. As a result, several children are losing crucial services because they are now identified as having SCD instead of ASD. Automatically one would assume that these children would simply apply for services related to SCD and begin to receive relevant methods of intervention and therapy, right? Wrong. How about this for a caveat:  SCD is a newly refined disorder and there are no formal guidelines for treatment. Talk about putting the cart before the horse, eh?

Autism Speaks wants to ensure that autism services are provided to all who need them. Currently, they are conducting a survey and study for those whose services have recently been revoked as a consequence of reevaluation under the DSM-5. Please share your DSM-5 experiences.

A good read: Why are Children Losing their Autism Diagnosis?


April Should be Autism Action Month

According to the Centers for Disease Control and Prevention, it is estimated that 1 in 88 children in the United States have an Autism Spectrum Disorder.  That means that as many as 1.5 million Americans today are believed to have some form of autism, including in excess of 90,000 Virginians.  At this time, autism is not a reportable health condition in Virginia, so the only data available is that provided by the Virginia Department of Education (VDOE).  In 1998 VDOE reported 1,521 children identified with ASD.  This number increased to 14,624 students as of 2012.

When I started working with children with autism nearly 20 years ago, people were not aware.  Remember that great scene in “Rain Man” when the nurse asks Charlie Babbit if his brother is “artistic”? It seems funny now, but even many medical professionals were clueless back then.  Thankfully, those days are gone and virtually everyone knows that autism exists.  So here at Families of Autistic Children in Tidewater (F.A.C.T.), I’m advocating Autism Action month. Whether you “light it up blue” for autism speaks, run a 5K, attend a seminar, make a donation, or read a book to enhance your understanding; I urge you to do something!

Super-Human Abilities

As humans, most of us have a tendency to daydream about what it would be like to be someone else or to have certain abilities. For example, so many of us moms often wish we had the ability to clone ourselves. Meanwhile, our sons are busy fantasizing about having super-hero abilities, like flying or disappearing. But what would it be like if you did have super-human abilities, like an extremely acute sense of smell or fine-tuned hearing? Furthermore, what would it be like if your abilities were considered disabilities? Think about how often we take advantage of simply existing in an everyday environment. Whenever we need to go to anywhere in particular, we typically just go. If we need to see something, we simply open our eyes and examine it. If we have to take a different path to get to a place we’ve been a dozen times before, we easily take the detour-no problem. And what about all of the smells in the air? There are tons of them around us, but the only scents we normally pick up on or are bothered by are the extreme ones. This is what we’re accustomed to; these are the types of things that make us, well…ordinary. Think about how you would cope if you weren’t ordinary.

Imagine having those super-human abilities; imagine being extraordinary. Focus on each and every detail that surrounds you and amplify everything that you can see, hear, and feel. Your brain panics because there is too much to take in visually and all of the clamorous sounds are maddening. All of your senses are jolted and your everyday environment suddenly becomes harsh and antagonistic.  While most of us cannot begin to empathize with how this must feel, this is the type of sensory overload that is persistently experienced by many of those with autism. These types of sensory integration disorders occur because of a dysfunctional sensory system, which is controlled by the brain. Sensory integration is basically how our brains instinctually choose to interpret the environment. Therefore, any type of interruption or connection error among this delicate neurological process will cause either an over or under reaction to stimuli. Thus, the brain interprets the environment dramatically more or less than it truly is, essentially granting these individuals with super-human abilities.  But their most extraordinary ability may their ability to cope when they can.

For more on sensory integration, visit this link. 

For more information on the autism-specific struggles visit this link.

Volunteering Pays: My Favorite Oxymoron

When I tell other non-profit organizations that Families of Autistic Children in Tidewater (F.A.C.T.) attracts more than 250 student volunteers each year they are envious and they should be.  I could not be more proud of our volunteers. Some enter our programs innately able to engage and mentor our campers with autism.  Others need more training and guidance.  But in the end, they all learn so much about autism and the satisfaction that comes from serving others. They gain empathy and leadership skills. They become advocates for individuals with disabilities. Hopefully they go out into the world and share the point of view they developed while volunteering for F.A.C.T.

Of course I’m not so naïve as to believe all this volunteerism is strictly philanthropic.  First of all our programs are fun and interesting.  Because we are community focused, our social programs and camps involve lots of outings to places like the Virginia Aquarium, Laser Quest, and Ocean Breeze water park.  Volunteers can earn community service hours and an awesome recommendation for college or job applications.

My timing for this blog is not coincidental.  March is typically the time of year when parents and children begin planning their summer activities and schedules.  When I was a kid, the sum total of that plan was to be outdoors from dawn to dusk. Today, kids are involved in so many activities that careful advanced planning is necessary.  So for all my would-be student volunteers, let me officially announce that applications will be available on this site on May 1st and they will only be available for 2 weeks.  Camp will be in session from July 7 through August 15.

Each year camp receives more than 300 applications for only 200 positions, so not everyone will be able to participate in camp.  However there are many other volunteer opportunities and I’m sometimes disappointed at how few come forward to fill those year round programs.  Teen night, tween time, bowling league, and bike camp all need student volunteers so please consider taking part in one of these programs.