I’ve learned something today. The terms “High-Functioning” or “Low-Functioning” are not acceptable. The use of these terms has not been an intentional act to cause harm or insult, nor should be confused with those purposefully intending to insult (a different category altogether). Learn, with me, that using a functioning classification of terms now is offensive to the very audience we work so hard to assist. Let’s get educated together.
The broad term “Autism” is now used world-wide and text-booked by the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5-TR) which is the standard classification of mental disorders used by mental health professionals in the United States. When my son Samuel was diagnosed over 20 years ago, the term was Asperger Syndrome or High Functioning Autism. These terms are still on his medical papers, however, he has Autism and now states so when asked.
We’ve Evolved and that’s a Good Thing!
As the saying goes, “we’ve come a long way baby”. I think we should first look at the motive behind using a word that is not longer acceptable. Know there is a period of transition, we just have to look how far we’ve come. Many good people have spoken out on behalf of those whose voices have been unheard. I’ve known many heroes of this sort in my lifetime, those on the spectrum and neurotypicals alike. By looking back, we may ‘cringe’ at previous words used but we must also look at the motive. Such a clip that ran national from Barbra Streisand, who in the early 70’s spoke out in a PSA on behalf of others but used the “R” word to do so. Her motives were and still are good but she, along with everyone else, had a big learning curve at how to address those with Autism.
Johnny Cash did something similar, also in the 70s and brought attention to those who were institutionalized, he even sang about them for awareness. The intent was good, fortunately times keep changing and the verbiage is no longer used, but we still had further to go with labels. The video PSA below may be difficult to watch, but it is posted as a reference of a timeline how how far we’ve come with our terminology, but also to show an example of someone with good intent apart from purposeful bullying. There is a huge difference.
Thankfully Progressing Forward
It was the 90’s and Asperger Syndrome was just now making it’s way to the public conscience though medically recognized in the late 50’s. Doctors began to study it, educators were enlightened, and parents began to realize how many Autistic people had sadly gone undiagnosed, never receiving any help as they didn’t “look” different.
Our Personal Journey
My son was one that had been lost in the system. After his diagnosis, it was a relief not only to me as his parent, but to the educators who began to look at him and other students with a better understanding. Sleepless nights on behalf of those, like my son, who were overlooked or worse, categorized and treated as those with behavioral problems changed the trajectory of our lives and so forward, began our quest to enlighten and inform those in the dark on Autism, specifically those undiagnosed and lost.
Dr. Temple Grandin, who used the term “High Functioning Autism” to describe variations on the spectrum, made perfect sense at the time. The term was used to better explain and define those like my son who otherwise might get overlooked, but as mentioned in the opening statement, the term is no longer used and has transitioned into the umbrella term…Autism.
So Here We are Today. Learn More Here
The Feedback to ‘labels”: Functioning labels are not a diagnostic tool and are not a part of the DSM-5. Support levels are but are also disliked by many in the Autism community. Functioning labels are inaccurate and are said to be harmful for Autistic people. The labels can be contradictory and may have a significant impact on the lives of autistic people and how they are perceived by others.
In terms of medical descriptions, the DSM-5 no longer specifically identifies Autistic Disorder, Asperger’s Syndrome or PDD-NOS, and instead now lists them all under ‘Autism Spectrum Disorder’. The DSM-5 now offers three severity levels which are identified during diagnosis that better help identify an individual’s need for support.
Level 1: Requires support
Level 2: Requires substantial support
Level 3 Requires very substantial support
Why are these labels harmful? Some of the articles I’ve research on the topic offer these insights: They invalidate the needs of autistic people, they discredit or over-simplify a person’s diagnosis, expectations and confinements cause shame and labels create a divide in the autistic community.
So what ARE we suppose to say?
As defined in the DSM-5, use the umbrella term “Autism” and don’t describe Autism at a functioning level. Each person is unique, (I think we all know that) and the challenges or hurdles defined as comorbidities separate the challenges person to person. I love a quote from Dr. Chris Johnson Plauche, “It is not the Autism, but the comorbidities that are the true challenge”. Identify the one, two, three or more comorbidities ,(ADD,ADHD, Anxiety, Sensory Disorder, OCD, ODD, and truly the list goes on) and from there, devise the treatment(s) plan.
In addition, to say “a person with autism” offends those with autism. I didn’t know this! I thought this was how to address an autistic individual but I learned that is much better identify as Autistic as in, “my son Sam is Autistic” verses, my son Sam “is a person with Autism”. They are proudly Autistic and first person language is offensive to many and that most prefer identify first language. This is because, “for us, autism is inextricably tied to who we are – it’s not possible to separate us from the autism. We wouldn’t be us without the autism. We would be someone else. We don’t see being autistic as a bad thing (most of us prefer it), so we don’t see a need to pussyfoot around it.” This makes sense once pointed out, I have some practicing to do!
Lose the Terminology
Losing the terms “High Functioning” or “Low Functioning” is a lesson learned. Sam has Autism and a list of comorbidities that he addresses and hurdles daily. I am attempting to remove all of these terms that offend however, the message and efforts on behalf of those diagnosed, especially supporting/equipping the parents and educators with support tools who surround them, has and will never waiver.
Transitioning Today
And so we progress forward in how we speak of those uniquely and beautifully wired with Autism. I am ready to learn and to adjust to the new terminologies that do make great sense, but be patient, we neurotypicals are trying. Please learn the vast difference of those intending to inflict harm and those just ignorant of the facts and are dedicated to their work. We need them!
I would like to thank an Autistic person, who informed me of these terms on our Aspergers101 Facebook page, so we learn together! As long as you have a team fighting and working on your behalf, speak kindly, educate softly, and decipher if the person is being purposefully derogatory or is truly in the dark on changing terminology. Team work is just that, work together and much will continue to be accomplished and propel further on behalf of those with Autism Spectrum Disorder.
A graduate of Abilene Christian University, Jennifer had a long career in TV Broadcasting. Upon learning her oldest son Sam had a form of Autism called Asperger’s Syndrome, she left her career and became a full-time mother to both of her sons. Jennifer elicited the participation of her family and together they produced several independent programs including a children’s animated series titled Ameriquest Kids, as well as a documentary and book titled, Coping to Excelling: Solutions for School-age Children Diagnosed with High-Functioning Autism or Aspergers Syndrome. She formed the nonprofit Asperger101 to provide on-going free resources related to ASD at Aspergers101.com and has implemented the Texas Driving with Disability Program and continues to grow the statewide initiative today. She and her husband have recently retired to their property in the Texas Hill Country.
