The language used to describe autism is currently the subject of intense and passionate debate. Our primary goals in this work have been to:
- Use language that is respectful to people on the autism spectrum and to those who support them.
- Recognise the very real challenges experienced by autistic people and their families, without portraying autism as a problem to be fixed.
- Ensure that the language we use recognises autism as a lifespan condition experienced by people of all genders and ages, from all walks of life and all around the globe.
For this reason we have not used any functioning labels in the text, and minimised any use of medical and deficit-focused terminology. However, we have included some person-first language (e.g. person with autism), although we know this will not be the preference of many autistic people. Our reasons for doing so include the fact that, historically, person-first language was part of the early disability rights agenda – this was not a language construction imposed by the neurotypical/non-disabled community. Gernsbacher recently pointed out that language can be stigmatising when different constructions are used to describe people with and without a disability – as in the phrase “typically developing children and children with autism” – and we have tried to avoid this throughout by using matched constructions as far as possible. An oft-cited online survey shows that about 60% of autistic respondents approved the use of the identity-first construction “autistic” to communicate about autism, and just under 40% endorsed “autistic person” specifically. Thus identity-first language receives strong support in the community, and many have written eloquently about the importance of this kind of language for their well-being and identity. We have no desire to over-ride this wide-spread and well-articulated preference, and the majority of language here is identity first. However, in the same survey, more than 30% of the autistic group surveyed approved the use of the person-first phrase “has autism” to communicate about autism. Moreover, about 25% of respondents on the autism spectrum selected either “has autism/Asperger’s syndrome” or “person with autism/Asperger’s syndrome” when asked to pick only one preferred language option. It is very clear from the data that, even within an autistic group, there is diversity in opinion, and we have chosen to reflect that diversity in our choice of language in this book. To readers of the future, we can only apologise if this choice seems to have been retrograde.
Source: Happé, Francesca; Fletcher-Watson, Sue. Autism (Page viii). Taylor and Francis. Kindle Edition.
I’m heartened when autism researchers respect and promote identity-first language and eschew functioning labels. Make it a trend.
I updated the functioning labels section of “I’m Autistic. Here’s what I’d like you to know.” with selections from “Uniquely Human: A Different Way of Seeing Autism”.
When mothers and fathers hear the term low-functioning applied to their children, they are hearing a limited, piecemeal view of their child’s abilities and potential, ignoring the whole child. Even when a child is described as “high-functioning,” parents often point out that he continues to experience major challenges that educators and others too often minimize or ignore.
When professionals apply these sorts of labels early in a child’s development, it can have the effect of unfairly predetermining a child’s potential: if “low,” don’t expect much; if “high,” she’ll do fine and doesn’t need support.
Source: Uniquely Human | Dr. Barry M. Prizant
I updated “I’m Autistic. Here’s what I’d like you to know.” with selections from “THINKING PERSON’S GUIDE TO AUTISM: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies” on functioning labels.
Function labels are what others use to try to control us and act as gatekeepers to the things we need to survive and thrive. Functioning labels are weapons used against us.
Source: THINKING PERSON’S GUIDE TO AUTISM: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies
More on functioning labels from that piece:
I do agree with Sheffer that sorting autistic people into “high-functioning” and “low-functioning” bins carries echoes of Nazi ideology. Under the Reich, being branded as ineducable or low-functioning meant you were expensive ballast on the ship of state, and worthy of a death sentence. But let’s not forget that in America for most of the 20th Century, a diagnosis of ‘“classic” autism meant life-long institutionalization on a lockdown ward where patients were routinely beaten, restrained, and subjected to the horrible experimental treatments. That’s barely better than a death warrant, and it was mainstream American psychiatry for most of the 20th Century.
There is a long history of functioning labels being used to divide the Autistic community, both externally and internally. Externally, function labels get leveled at us from the autism community. (The Autistic community is the community of people who are actually Autistic. The autism community is a larger community comprised of everyone with any stake in autism at all: Autistic people plus non-autistic parents of Autistic children and adults, doctors, researchers, teachers, and so on.)
The thing so many Autistics have pointed out about functioning labels is that we are called “low-functioning” by those who choose to ignore our strengths and “high-functioning” by those who choose to ignore our challenges. There is no official definition for these functioning labels. I’ve noticed researchers defining what they mean when they say they are studying a low functioning or high functioning population, and the chosen definitions vary from study to study, complicating meta-analyses. The labels are meaningless in an objective, scientific sense.
Several years ago I was looking for some help and was rejected by one agency, which said I was too high functioning and referred me to another agency. That second agency rejected me for being too low functioning. I concluded that function labels are what others use to try to control us and act as gatekeepers to the things we need to survive and thrive. Functioning labels are weapons used against us.