The Language of Autism – A Rant

Language provides us the means to communicate ideas, build and share a common vision, and grow and expand our knowledge and understanding. It can also limit our ability to do all these things.

Some of the language we use in discussing Autism Spectrum Disorders drives me nuts. The topic is too important for us to settle for such lousy words and terminology. The language that really bugs me is listed here. I generally try to be positive on-line, but this is a rant, so don’t expect me to offer up any suggestions.

Autism – The difficulty with this word is figuring out whether someone is using it to describe the spectrum of disorders or the particular disorder that has been called autism for many years. While it’s a great term to describe the spectrum to someone who doesn’t know it, it also dilutes the meaning of the specific diagnosis of autism. We need two terms here, not one.

Pervasive Developmental Disorder – This term may have very specific clinical meaning, but it’s a terrible phrase for a layperson. The words carry the connotation of “this is complex, you won’t understand.” Its likely to cause eyes to glaze over.

Asperger’s Syndrome – This one works for me even though most people can’t get the pronunciation or spelling down. It’s at least identifiable as a general ‘place’ on the spectrum. By naming it after a key researcher, it at least follows a convention that’s recognized in many fields.

Atypical Autism – I hardly no where to start with this one. I have yet to hear of any case of autism that seems ‘typical’. Since we often refer to non-autistics as ‘typical’, this term could also be represented as Atypical non-typicalness. Since we’ve made the spectrum broader (by changing diagnostic criteria) over the past 20 years, this term really doesn’t have much use any more.

High Functioning Autism – I have a love/hate relationship with this term. On one hand, its simple, easy to understand, and an attempt to represent something much more important than diagnostic criteria. From that standpoint, it’s one of the few ‘common-sense’ terms that we have. On the other hand, it also leads us to ranking autistics relative to one another in a very subjective way. That’s not helpful when dealing with the multi-faceted presentations of autism. It can lead to overlooking abilities that are not obvious or easily measured.

Pervasive Developmental Disorder – Not Otherwise Specified – There’s no love/hate issue with this one! Here’s a term that is incredibly specific, but only at describing what it’s not. It’s like asking What color is the sky? And getting an answer of: It is a deep color that is not brown, red, or purple. I’ve met quite a few parents that have had professionals arrive at this diagnosis for their child and they’ve felt that it’s not a ‘real’ diagnosis. A different name would make this diagnosis much more acceptable. It would also keep us from using even less meaningful terms like PDD-NOS.

Autistic vs. ‘has autism’ – The difference between these words means a lot to some people. While the difference doesn’t particularly resonate with me, I respect and understand how these phrases can subtely shape our perception of autism. I try to choose which words to use based on the listener or reader. Or, more likely, I’m clueless and don’t pay attention to which word I’m using and likely offend people that favor either term.

Neurodiversity – What a wonderful word! Maybe it’s because diversity has been such hot topic in the work place, but I just knew what this word meant the first time I saw it. This term even speaks to ideas that go beyond the autism spectrum. All of our interactions with others are driven by how our own brains are wired and how we react to how other peoples brains are wired.

Biomedical – OK, you’ll need to figure out on your own whether I included this term to be fair or just to stir things up! It’s really a pretty good word. Sure it encompasses controversial things like chelation, but it also includes pharmacology, genetics, and other physiological aspects of autism and treatment. This word is very worthy of inclusion in our dialogue on autism.

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3 Responses to The Language of Autism – A Rant

  1. Valerie Harlow says:

    Our son was not properly diagnosed until he was around 11 years old, and until then nothing we as parents told these so-called doctors from the school districts as for his “symptoms” which most in our family said were of “autistic behaviors” these quacks simply ignored us. They told us that since our son made eye contact and had a sense of humor there was nothing autistic about him. They said he is ADHD (if this were the case how would you explain to these people how an ADHD child of age 6 could sit still for an entire 20-30 page bedtime story or even afternoon story? How could an ADHD child sit through a game of chess or concentrate on a 500+piece adult style jigsaw puzzle? It was his “behaviors” that we now know as “symptoms from anxiety” such as repetitive words or sounds, rocking, tapping hands, HAVING to-a MUST HAVE object-he had a NEED to carry an object around and it had to be the SAME object such as a particular yellow crayon, or a special small toy, and if you left this object behind he would go into a panic and you could not simply go to a store to get a new one, even a new yellow crayon-it HAD to be the one he had. He would panic for hours repeating the object, “Yellow, yellow, yellow” and this would go on until he had that yellow crayon back in his hands. He would repeat things incessessantly over and over, like if we were going to go to the donut store, he had to know exact time and the closer we came to the time, the more he would panic and repeat, “Roll, roll, roll, roll…”On and on until he got the roll. Also, he did not really begin talking until about four years of age, and he had a pronounced speech issue where you could barely understand him as well as the inability to prounce certain sounds. Speech therapy has helped to some degree but the R sound still very hard for him. So, from about 5 years of age until he was properly diagnosed at age 11 (yes it took this long)but you can read my comments in another topic ” Refrigerator Mom’s and Geeky Dads”. Our son has come a long way, and we as parents have learned a great deal. Thank you for sharing these “words” as they are something I can pass onto some of my family so to help them realize that our son truly does have an Autistic like disorder and is not simply a “behaviorally disfunctional” child and that this is no fault of our as parents, it is that he is simply “different with different learning needs.” Has an AutisticSpectrum/Asberger’s Disorder with anxiety.

    You are right to add Biomedical, as it also means the “biomedical” chemistry going on inside a child’s head such as the way the brain fires it’s signals from sensory input; how a child may react to certain sounds, smells, even the touch of certain clothing on the skin. Our son HATES shirt tags and only likes to wear tag-free 100% cotton t-shirts, NO buttons nor zippers. The clothing must be free of any seems that touch the skin and MUST be soft. This is part of biomedical as it effects the way the brain interprets the touch to the skin. Sounds, the way some sounds can be very irritating and same for some types of lights. How our son responds to some types of meds to treat his anxiety, definetely biomedical. Anyway, again thank you for sharing this info, that I am sure to pass along.

  2. Valerie says:

    Just read this article and thought to share it with you all here. I think very important that people know that the pharmaceautical companies pay LOTS of money for advertising of their drugs and rarely will they tell the public about the serious side-effects and even permanent damage that can be caused by long-term use of their drugs. Oftentimes their drugs are tested on children then the findings of side-effects are then reported…only after being tested on our children? This is a fact as I know people in the industry of pharmaceautical and they are looking for work elsewhere as they do not like the lack of ethics that goes on. Anyway, here is part of the article and a link to it shall follow. By the way, our son was on this drug and it did nothing to relieve his issues. He began small facial tics that only became worse with the use of this Ritalin. The doc only told us that this was not a side effect and he would need to increase the dosage. We took himn off the drug and went to another doc. The “so-called NOT side effects” went away after about a month after the drug left his system. Gee, guess they must have been a side-effect after all! Anyway, our son was misdiagnosed and such but I already mentioned this…until years later when we finally got proper tests and a diagnosis. Anyway, the article in part…Ritalin may help with autism
    Stimulant targets hyperactivity in autistic children, study finds….Here is the link to the article:
    Whatever treatment options people choose, they must take the initiative themselves and do as much internet research as possible and if they choose the drug option (any drug actually) then to be sure to get regular blood tests to ensure no damage to heart, liver and kidney functions.

    Best to everyone in their quest to help their children with any disorders/issues.

  3. Pingback: Along the Spectrum » Full Disclosure - Revisited

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