Monday, September 17, 2007

A Member of the Hidden Horde?

It is one of the great ongoing debates within (and without) the autism community - the so-called 'epidemic' of autism over the last 10-15 years.

Were I to point you to all of the excellent posts and articles on this topic, the list would be unbearably long. Suffice it to say that this topic has been rehashed over and over by lots of people with all kinds of agendas. In the final analysis, to me anyway, it appears that there may be a somewhat higher prevalence of ASD individuals than there were a couple of decades ago, but that the increase, assuming there actually is one, is nowhere near the what the commonly accepted prevalence figures from then and now would indicate.

The reasons that there seems to be higher prevalence are well-documented. First, the diagnostic criteria used now are tremendously broader than what were used in the past. Autism Disorder itself has been redefined into a "spectrum disorder", indicating by definition that it now encompasses a large spectrum of individuals with varying presentations of diagnostic criteria.

Beyond that, awareness has increased dramatically. In circumstances ranging from pediatrician visits to casual play-dates, autism is talked about openly and regularly. This most certainly has an effect on parents who may be concerned about their child's behavior and may seek additional information or a diagnosis, as well as on those who take part in the referral process (pediatrician to speech therapist to pediatric neurologist to developmental psychologist, or some variation).

Add to that the increased level of acceptance of autism as a legitimate diagnosis and the result will be even higher prevalence numbers. 20 years ago, if a psychologist settled on autism as a diagnosis, it was an extremely rare evaluation with tremendous implications for the patient and his/her family. Nowadays, for the reasons listed above, it is a less mysterious and abstract diagnosis. Increased levels of understanding lead to a mutual and synchronous increase in acceptance between clinicians and patients' families that make it 'easier' to settle on ASD as a diagnosis.

Another factor is the way services are doled out. Many families will push for the autism diagnosis over others for the simple reason that they are more likely to receive services either from the government or from their school systems. It may easier in California, for example, to receive behavioral therapies for a child Dx'd with Autism Disorder than it is for a child with a combination of Dyslexia and ADHD. Therefore, the parents of this theoretical child may push for an Autism diagnosis to receive what they consider to be the most appropriate services.

Also included in this category are younger siblings of children who have been diagnosed with Autism, who may receive funding for early intervention because they fall into a higher risk category (not because they have been officially diagnosed). Once these kids are on the books, so to speak, if they develop typically are they ever removed?

Considering that we have had changes in definition, changes in reporting, changes in diagnostic criteria, changes in the way society views and understands autism, is it even possible to have a discussion comparing prevalence levels now to then? It is all pure speculation at this point, though the arguments I have grouped together above certainly lead one to believe that any increase that may have occurred is less than what the 'numbers' would indicate.

One interesting question on this topic is: If you think back throughout your life, can you think of one or more people who, in retrospect, knowing what you do now, may be someone who today could be diagnosed as being on the Autism spectrum? Personally, I can think of 1 who I think would almost certainly receive the diagnosis today, as well as a few other possibilities.

Those who argue for the existence of an epidemic have a refrain, "Where is the Hidden Horde of autistic adults?" In my opinion, the (offensively monikered) Hidden Horde is all around us if we know what to look for.

Last week I attended a several-day-long business conference in another part of the state. Over dinner, I was having a conversation about autism with a few business colleagues. All of them, of course, were of the belief that there is, indeed, an epidemic of autism and believed, of course, that vaccines or environmental toxins probably caused it. Of the 5 people, however, only one knew someone who was autistic or had an autistic family member. Interestingly, here are 5 adults who all believe in an autism epidemic but who do not know any autistic people. So anyway, I explained some of the reasoning against the belief in the epidemic. I then asked "the question" that I mention above, and explained some of the behaviors one might observe in an undiagnosed autistic adult, just giving a general idea to help them think it through.
So one guy pipes up and says, "Oh, you mean someone like my Uncle." After further questions and explanations, here is the description of his uncle:
He works in the family business, at a supervisory level. He has had the same set of responsibilities for over 25 years - he performs them with absolute unflagging precision. At the same time, he has no interest in any goings-on outside his sphere of responsibility. He is friendly and outgoing, but has no long-term friendships outside his own family (where he is cherished for his loyalty and eccentricity). He tends to make acquaintances uncomfortable with his social behaviors. For example, he speaks in a tone just a little too loud for the atmosphere, regardless of whether the atmosphere is quiet or loud to begin with. He makes fleeting eye contact, and 'flicks' his eyes to and away from whomever he is speaking with. His first question for a new acquaintance is always "So where are you from?" When he receives his answer, he immediately responds with "Buffaloes!" or "Gamecocks!" or "Huskies!" The significance of this response is that this is the mascot for whatever NCAA football team is most closely located to where that person is from. He knows all of them. And then, for the duration of the acquaintanceship, he will repeat that mascot name each and every time he sees that person, no matter how frequently. It's like his way if saying "Hi". He "lives independently" (my colleague's choice of terms) in a family-owned rental property. His brothers help him manage his household finances (not by giving him money, as he earns a nice income, but just by helping get bills organized and paid and helping organize insurance and retirement plans and whatnot). He drives, but only a little because he does not like to.
So, readers, what do you think? Is he autistic? Is he a member of the Hidden Horde? If he were born today, would he be diagnosed with Autism Disorder or maybe Asperger's? Or perhaps most interestingly, if he had been diagnosed as a child, would his life look different today?


Camille said...

Nice autiespotting on your part and on the part of your acquaintance. Sure sounds autistic to me.

My ex husband's uncle was first described to me in terms that made me think the uncle was mentally ill, that was in like 1979. Around 1998 or so when I started reading extensively on autism related stuff, I was able to call him on the phone and talk to his family members and put it together that the guy is quite obviously autistic. He lived alone for a while but a coworker robbed him by "borrowing" lots and lots of money without repaying it. The uncle was so naive he just kept giving this guy hundreds of dollars.

My ex's uncle didn't have any desire beyond a few little things that he bought and so he stashed all this money and no one was protecting him...

after this was discovered he went to live with family members, first, my sister in law then with one of his sisters then another one.

When he was a kid he and his sister (my mother in law) were put in the Idaho State School and Hospital, where they put so many of the autistic and low IQ (MR) type folks and the handicapped for years... He and my mother in law weren't there for very long, though, they were rescued by their stepmother who had been told that they were going to a nice school where they'd learn to read and write. I don't think my uncle ever learned, but I know my MIL could read fine when I met her. Her handwriting was better than mine, that's for sure.

Joseph said...

I can think of a couple classmates from high school (two different schools) who were almost certainly autistic.

Let me nitpick this part though:

it appears that there may be a somewhat higher prevalence of ASD individuals than there were a couple of decades ago

You must mean "higher prevalence of diagnosed ASD individuals". (That detail is important IMHO because it's the root of the whole confusion).

You might have seen my posts on the prevalence of autism in adults, e.g. this one.

Steve D said...

Nitpick away, Joseph - that's why we love you.
Actually, though, I meant what I said, but meant to offer it strictly as an opinion. It seems to me that prevalence has indeed gone up. For example, though I can think of at least one kid I grew up with who almost certainly fits the diagnostic criteria, nowadays it seems like I can 'spot' autistic individuals with some regularity. Again, I would repeat that this is strictly my opinion, and not one I would defend too fiercely either.
It occurs to me that prior to my son;s Dx, I had never spotted an autistic person before, so obviously some of my newlyfound skills are based on the fact that I am more aware of and have a better understanding of autism (more support for those arguments, to be sure). But I still just can't help but think that there may be more people being born with autism today than there were 20 years ago.

Chuck said...

As long as we are being nitpicky, then the correct statement would be:

"higher prevalence of currently diagnosed ASD individuals"

Individuals may not have been diagnosed because they did not meet the then diagnosis criteria and so were not mis-diagnosed at that time. They are only determined to be mis-diagnosed in retrospect to the current diagnosis criteria.