The “Autism Spectrum” And Umbrella Labels: Is This The Right Direction?

When a word comes to have too many meanings, it runs the risk of losing meaning at all.

I am starting to wonder if the word “autism” is in such danger.

We’ve used this word to describe a bunch of people with very different needs, from those who just need a little help with sensory regulation and picking up on minor nonverbal social cues to those who need constant and wide-spread care.

Thus arises a potential problem: when we describe somebody as “autistic,” one is not sure if that person is verbal or nonverbal, if they are intellectual gifted or disabled or somewhere in between, if they have minor or severe sensory needs, if they need help with getting a career or need help with basic self-care or anything in between.

Not that everyone with one “type” of autism has the exact same symptoms as each other–everyone has their unique needs and traits, and how one best helps a specific individual varies between even individuals with similar presentations–but there does seem to be a greater chance of commonality within those “types.” Diagnoses rely on these commonalities to establish a “baseline” from which symptoms can be assessed and treatments can be offered.

Now, I do agree with the general consensus that the DSM IV classification of Pervasive Developmental Disorders has its flaws. It has been consistently proven that there are no major differences in functional outcomes between those who are diagnosed with “high functioning Autistic Disorder” and Asperger’s Syndrome–those who have speech delays as young children often catch up to those who do not (*cough*I’ve been asked to join a speech and debate team in college *cough*), and even then, speech isn’t the major determining factor in one’s level of well-being or “functioning.” The label of Pervasive Developmental Disorder: Not Otherwise Specified, while, at the time, a necessary way of ensuring that those who need services related to the same services that those with diagnoses of Autism or Asperger’s need but who do not quite qualify for those diagnoses get those services, is prone to its subjectivity–what counts as “influenced enough” to be diagnosed with PDDNOS but not with another form of Pervasive Developmental Disorder?

Also, people who appear to have one “type” of presentation at one point in their lives may appear to have another at a later point in their lives. It’s not uncommon for people to appear “less autistic” as they get older, nor is it terribly uncommon for a person to appear “more autistic” (as I’m finding out myself). The number and type of symptoms, as well as their intensity, do not stay constant throughout a lifetime, nor do they always change in the same direction.

In fact, psychologists may give the same person several different diagnoses (Asperger’s and PDD-NOS here), either in a short period of time or over a lifetime.

The DSM 5 attempts to solve these problems by streamlining the Pervasive Developmental Disorders into one diagnosis: autism.

While this has its perks–for one, it tends to be a bit easier to get services for “autism” than for Asperger’s or PDD-NOS, and, secondly, it reduces the subjectivity between the different diagnoses–many are unsure that everyone with these different diagnoses have differing gradients of the same underlying condition.

Some studies have shown differences in the brains between those diagnosed with Autistic Disorder and those diagnosed with Asperger’s Syndrome.

And thought must be given to the fact that somewhere between a third and a half of all people with the intellectual-disability-comorbid presentation of autism have seizures where this is only the case with 10-20% percent of those without intellectual disabilities.

When it comes to the mildest cases of autism, the “oddballs” and the “eccentrics” who have and keep jobs and who do not get into legal or financial trouble and who have at least a few meaningful relationships, it is sometimes wondered if these people really need a diagnosis at all.

I’ve come up with an analogy that I think might explain some of my thought processes on this issue. There are ways that the analogy doesn’t work, however, and those are also central to this discussion.

The Shortness/Dwarfism Analogy

As someone who has an adult height of 5 feet and 0 inches ( 152.4 cm/ 1.524 m for those using the Metric System), I am “different” from many people around me, and this does influence my everyday actions.

I more often have to use chairs and stools to help me reach stuff that is much higher than I am than do most people, and I more often have to climb shelves. When I drive, I have to adjust my vehicle so that my feet can reach the pedals and so that I can see the road in front of me. I have to be towards the front of a standing crowd if I have any hopes of seeing what the crowd is gathered to see. I often stand on my tip-toes to view things that are far away from me and/or that are behind structures. I sometimes find it difficult to find specific items of clothing that fit me appropriately, and I occasionally have to spend money and gas to get pants and dresses hemmed so that the bottoms do not drag along the ground.

People also perceive me in a specific way due to this difference. I am often compared to a child and, in fact, sometimes outright mistaken for one. I am often adorned with diminutive terms such as “cute” and “adorable.” I am seen as physically weak, and while this is true to an extent (although not entirely due to my height), people are often surprised that I am not as weak as they initially assume me to be.

It is useful to have some framework by which this difference in height can be understood and communicated so that “accommodations” can be made, such as having me towards the front of crowds or reaching items for me when I cannot.

In English, this word is “short.”

I am sometimes also called other things due to my height, such as “midget” and “munchkin” and “dwarf.”

But while there are some ways in which a person with a form of dwarfism and I share common experiences–the difficulty in reaching or seeing certain things, the diminutive perceptions–my shortness is not the same phenomena as is their dwarfism.

For one, there are major differences in everyday adaptability between someone who is 5 feet and someone who is 3-4 feet. I almost never need help reaching light switches, and the seat-adjustment already present in vehicles is sufficient–I don’t have to make any additional modification to vehicles to allow me to drive them. I don’t have to bring a stool or a reaching tool with me into public spaces. I can walk into a room and have a decent chance of finding another person close to my height. The extent to which I am infantilized for my height isn’t nearly the same extent to which people infantilize those with dwarfism. People mistake me for being 12-15; adults with dwarfism are sometimes mistaken for toddlers and very young children. People don’t stop me to take pictures of me, and only a handful of times have I, as an adult, been audibly “squeed” or “awwwed” at in public.

Additionally, dwarfism isn’t just shortness.  By definition, there’s an underlying medical/genetic component. There are different types of dwarfism that present with different symptoms–primordial dwarfism is a different condition-state than is achondroplasia–and, as such, what “else” a person with dwarfism has may very.  In general, though, dwarfism presents with the increased risk of spine and joint issues, often with additional organ problems as well due to the compression caused by this stature.

I, and most people who have my same height, don’t share those issues. I have some challenges due to my tininess, but my short stature doesn’t “disable” me in the sense of limiting my daily activities.

And now, to extend this analogy into I-might-get-myself-in-trouble-with-several-communities-territories:

The treatment and cure of shortness and dwarfism.

There are some environment influences on height, and, thus, some environmental ways to possibly control height. Receiving good nutrition, for one, will usually cause one to be a bit taller than one would be if one was malnourished. Preventing and treating bone conditions such as scoliosis can also influence height.

Occasionally, one might go to the extreme of using growth hormone treatment or bone-lengthening surgery.

But, outside of that, if you’re still short, well, you’re short. It’s in your genetic code to be short. And, at present, there’s not much that we can do about it.

There are some who advocate for genetic engineering, and some of those people support selecting embryos in such a way that they have the genetic code for tallness, thus “preventing” shortness.

Some short people would be all for this–some, especially men, see their shortness as an inconvenience and as something that holds them back professionally and socially.

But many short people would give a sideways glance to the notion of shortness being something to “cure” or “prevent.” Sure, shortness has some disadvantages, but, for the most part, it doesn’t severally affect one’s quality of life. In fact, there are even some advantages to having a short stature. I can more easily reach things that are low to the ground, and I can more easily squeeze into tight spaces. Playing with children and their toys hurts my back less than it does those who have to bend and squat.

Also, shortness is considered “adorable,” and some see adorable as a good quality.

The issue of treatment and cure becomes a much different matter when talking about dwarfism.

Because shortness and dwarfism are different things, the reasonings behind wanting or not wanting certain cures or treatments would differ between these two groups.

Now, as I neither have dwarfism myself nor am intimately close to someone who does, I can’t exactly say how that community and the individuals within it feel on the matter.

I do know that there are some actual and proposed treatments for many of the symptoms of dwarfism.

There are also some with dwarfism, though, who see their dwarfism as a notable part of who they are as a person.

The Little People of America organization has this to say about genetic testing for dwarfism-causing conditions:

“LPA’s discussion of these possibilities brought forth a strong emotional reaction. Some members were excited about the developments that led to the understanding of the cause of their conditions, along with the possibility of not having to endure a pregnancy resulting in the infant’s death. Others reacted with fear that the knowledge from genetic tests such as these will be used to terminate affected pregnancies and therefore take the opportunity for life away from children such as ourselves and our children. The common thread throughout the discussions was that we as short statured individuals are productive members of society who must inform the world that, though we face challenges, most of them are environmental (as with people with other disabilities), and we value the opportunity to contribute a unique perspective to the diversity of our society.”

All this considered, one can easily see many arguments against having short stature as a “mild presentation of the Dwarfism spectrum.”

As I’ve said above, though, this isn’t a perfect analogy for the autism spectrum, and the ways in which it fails as an analogy are very important to this discussion about the autism spectrum. 

For one, there is much more fluidity when it comes to one’s presentation of autistic/Asperger’s symptoms than there is when it comes to stature and dwarfism.

Sure, people change in height throughout their life span. Children and teenagers have growth spurts, and, sometimes, children who are in a lower percentile of height “catch up” to be teens and adults in the middle percentile or higher (and, sometimes, children who start out in the middle percentile miss out on a growth spurt or do not continue to receive appropriate nutrition and fall behind in percentile). When I was about nine years old, I was in the bottom fifth percentile for  height. As an adult female living in the United States, I’m now at about the tenth percentile. People also tend to lose inches as they age due to changes in spine compression and bone density.

But a person with general short stature is never going to develop the genetic condition that leads to a form of dwarfism, and a person with dwarfism, even if they undergo treatment to make them taller, is never not going to have that genetic tendency. Thus, a person in one group will never become a person of another group.

This isn’t exactly the case with people with autism spectrum conditions.

There are many people who have a childhood presentation of autism that presents with very notable difficulties with speech and cognition who grow to be adults with much fewer challenges in these areas.

There are also people who, at one point of their lives, have a relatively “mild” presentation that looks like what we call “Asperger’s Syndrome” but who become so burned out that they lose skills and functioning and have challenges with speech and cognition that more closely resemble “classic” autism.

You do have people who remain “Asperger’s-like” and “classic-like” throughout their entire lifespans. But you also have people who do not.

There is also the matter of genetics and heritability.

A person who is short is more likely to have a child who is also short than does a person who is of average or tall stature. But said person is no more likely to have a child with achondroplasia  or primordial dwarfism or any other form of dwarfism than someone who is taller than they are. There is always a chance, sure, but this chance isn’t any higher because they have a stature that more closely resembles those with dwarfism conditions than those with taller statures.

Again, this isn’t exactly the case with people with autism spectrum conditions.

The science hasn’t yet reached a definite statistic, but it’s generally agreed upon that those with “autistic traits” or a form of autism are more likely to have children that are autistic. In fact, some people who are diagnosed with Asperger’s were not diagnosed with such until they have children with autism and proceed to seek services for such .

These two matters illustrate that there is definitely a strong relationship between the Asperger’s-like presentation and the “classic” presentation.

Is this relationship enough to then claim these two things to be one in the same?

My honest answer: I don’t know. 

I don’t know whether it’s best to group all presentations of what we now call “autism spectrum conditions” as one condition with varying presentations or to break them up into different conditions. The DSM IV approach had its strengths and weaknesses, and the DSM 5 approach has its strengths and weaknesses.

It’s very possible that one day, we will have advances in medical science that allow us to differentiate between different biomedical conditions like we do with dwarfism: we already have some advances, such as Fragile X Syndrome and some genetic variations that are linked to autism. Maybe we will one day find that those with intellectual disabilities and serialize disorders have something in common that those without do not.

But this won’t be for a decades, at the very least.

For the time being, I (and, again, keep in mind that this is just some random Comments From The Pecan Gallery) think that it is useful to focus on and treat the co-morbids. Even though many people with autism spectrum disorders are diagnosed with co-morbid conditions, it is thought that some are still not getting certain co-morbid diagnosis (particularly when it comes to depression and anxiety and the like). Knowing what specific learning/cognitive difficulties one has (executive functioning problems, non-verbal learning disorder, dyslexia, hyperlexia, dysgraphia, dyscalculia, dyspraxia, general intellectual disability) can be useful in improving one’s ability to function academically and occupationally regardless of one’s current “place” on the “autism spectrum.” Perhaps diagnoses like social communication disorder, sensory processing disorder, and stereotypic movement disorder have their place in recognizing and treating specific symptoms (not that stimming needs to be treated unless it causes injury or unless it gets in the way of performing needed tasks). And of course, mood disorders need to be recognized and treated as soon as possible. It’s not a perfect solution–each of these diagnoses have their degree of subjectivity, and it can get complicated having people diagnosed with a chain of different disorders–but as far as The Books go, it may be the best that we have.

In an ideal world, of course, we wouldn’t need diagnoses at all to get help. A person would be able to go to a healthcare provider/therapist and say “I am/my child is struggling with [insert challenge here]” and get help for that challenge, whether that be through one of the multiple forms of therapy/training, through accommodations, or through medication, if need be. This is the case to some extent, but, as of present, having the diagnoses does make the receiving of services a bit easier.

I suppose that as long as this help is given, it doesn’t really matter what labels and what categorization schema are used. My use of earplugs and my need to occasionally withdrawal from social stimuli is the same regardless of whether I can myself autistic or an Aspie or anything else.

I don’t know the best way to proceed from here, and I’m not going to pretend that I do.

All I do know–all I’ve ever known about autism and Asperger’s and developmental conditions and disability and human society and, well, anything–is that it warrants further discussion and thought.

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