Autistic badges; do we need “high-functioning” or “low-functioning” labels? (ASD/ASC/ Asperger’s/PDA)
Please note, some of our older posts like this one may not reflect the latest terminology and diagnostic guidelines – click here to read them in our blog on autism diagnostic criteria!
There’s been a lot of information and discussion circulating online on the subject of autistic functioning labels, recently. A functioning label is essentially a binary diagnosis given to someone described as being autistic.
Although outdated in 2018 (at the time of updating this blog), the autstic labels still commonly heard are generally “high-functioning” or “low-functioning”, and the clinician that diagnosed the autistic person made a judgment based on the day(s) they saw the person, taking into account the person’s ability to ‘function’, e.g. whether they can live independently, hold down a job and pass as neurotypical (NT) to onlookers. Many clinicians are said to also use IQ thresholds to help aid their functioning diagnosis.
“Take Naoki Higashida for example…”
But many people, autistic and NT alike, now question the vailidity of functioning labels for autistic people. If you’re so-called low-functioning, and supposedly not able to live independently, and maybe non-verbal or pre-verbal, who has the right to label your functionality or intellect? Take Naoki Higashida for example, the Japanese poet, novelist, and essayist. He’s published more than twenty books of fiction and non-fiction, including the renowned “The Reason I Jump”, published when Higashida was 13, featuring FAQs about his autism (and since published in English with David Mitchell as ‘Fall Down Seven Times, Get Up Eight’) – we will provide a link in due course, for ease. Higashida would likely have been diagnosed as “low-functioning” as a child. “I can’t converse well, but this doesn’t mean I don’t think. It’s just that when I try to speak, the words that come to mind, disappear. Expressing what’s inside the heart and mind of my autistic self will always be problematic, I think,” he told TIME magazine.
The very eloquent Higashida is only low-functioning by other people’s standards, in terms of how he communicates. In the same article, he said: “Comparisons help [other people] evaluate their own situation. Sometimes I wonder if the human intellect can nudge us backward.”
Is it disrespectful?
A “high-functioning” label is perhaps also unhelpful – is one who is a high-functioning autistic superior to one who is low-functioning? Is the label disrespectful towards those who struggle in a different way?
Rights activist and writer Amy Sequenzia, self-described as a ‘non-speaking Autistic’, believes that the worst situation, in terms of the utilisation of functioning labels, is when parents insist on using “high-functioning” for their children to elevate their status among other autistics. “Besides being disrespectful of our accomplishments and our resolve to succeed against many odds, it is disrespectful of their own children’s existence,” Sequenzia says of this phenomenon, on Ollibean.com.
There are some sinister links to functioning labels for people with Asperger Syndrome, described by the writer Kieran on the Autistic Advocate as stemming from decisions made by Hans Asperger. “He chose to separate the intelligent from the not-so, as that was his remit from the Nazi Government, who funded and directed him. The Nazis wanted super smart children to the future leaders of The Third Reich, so Asperger found them,” Kieran writes.
Reporter Steve Silberman’s book ‘Neurotribes: The Legacy of Autism and the Future of Neurodiversity’: (described by the publisher as: ‘Up-ending conventional thinking about autism and suggesting a broader model for acceptance [and] understanding… [and] unearthing the secret history of autism, long-suppressed by the same clinicians who became famous for discovering it..”) goes into more detail.
So, what’s wrong with autistic functioning labels?
Firstly, let’s point out that when one is newly-aquiring information on autism (ASD/ASC/Asperger’s/PDA etc), the labels are somewhat helpful – and when one is given an autism diagnosis, a label can feel useful. (You’ve only just discovered WHY you had been feeling so misunderstood all these years – and now you have a LABEL!). It’s potentially useful when you’re trying to tell your family and friends about your autism diagnosis, to help them understand that autism is indeed a spectrum.
HOWEVER, as time goes on, as your friends and family are told, as you learn more about autism spectrum conditions, you wonder – do I really need a label? It all becomes a little confusing.
It’s important to also mention the issue of words and descriptions like:
“HAS MILD ASPERGER’S…”
This has very little meaning. Autism is autism. The person described as ‘borderline’ is either autistic or not autistic, and if their ‘functionality’ in society is good, then they have adapted well, and developed suitable coping strategies and mechanisms. But describing their autism as ‘mild’ could be dismissive of their struggles to get to this life-stage, and their continued struggles ‘behind closed doors’.
(A slightly different subject is autism profiles, e.g. Asperger Syndrome and Pathological Demand Avoidance (PDA) – we wrote about this in the Spectra.blog article ”What autistic traits are you born with?’. These two profiles formerly come under the label of ‘High-Functioning”. Do we need these sub-profiles? That’s a discussion with varying opinions!)
To conclude, here at Spectra.blog, we believe that each autistic person should decide whether or not they want to use the functioning badge that they were metaphorically given at diagnosis. If it helps them navigate their own personal autistic journey, then why not? But if the use of “High-Functioning” is used to separate and differentiate different autistic people in a derogatory way, then it is most certainly unhelpful.
In 2018, functioning labels for new diagnoses of autism spectrum disorders were ceased – read more below!
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism Spectrum Disorders; the information we post here is based purely on our own exposure and experiences.
Also published on Medium.