“The drowning out of autism reality under a sea of euphemisms obscures my son’s needs”
An autism nonprofit in the UK asks journalists to blot out an an entire glossary reflecting realities of severe autism. (Stock photo)
By Jane McCready
A prominent autism research nonprofit in the UK has issued a “Media Communications Guide” asking journalists and content developers to use what it calls “the right language” in stories about autism. Terms associated with severe autism or hardship are to be avoided. Autism is no longer a “disorder” but instead a “condition,” or maybe at a pinch, a “disability.” Reporters are asked to avoid phrases like “low functioning,” “non-verbal,” or “severe.” Any negative language like “suffering from” is to be shunned.
Such language policing erases half of the autism picture. And it’s the half with my son in it. He’s 16 like Greta Thunberg, the autistic climate activist, but there the similarities end. Language that applies to Greta surely does not apply to him.
Around 30-50 percent on the autism spectrum have a learning disability (called an intellectual disability in the US), an IQ measuring below 70. Some 25-30% of autistic people will remain non or minimally verbal. Around a third to a half of autistic people will be self-injurious or aggressive. Autistica, the very charity which writes this style guide, tells us in another document that “autistic adults with a learning disability are 40 times more likely to die prematurely.” (1,2,3,4,5)
It’s not just about the co-occurring conditions. Autism traits themselves range from moderate to severe, as per the DSM-5 chart (6). Autistic people at Level 3 will require “very substantial support.” They have a disorder, their conditions are severe. This is not a value judgment, of course. It is to say nothing of how deeply they are loved, nor is it in the year 2019 any indication of “shame,” as in the bad old days of attitudes to disability and children hidden away in institutions. But it is a measurable, objective reality. Does whitewashing autism’s language force our children into a new sort of hiding, lest they tarnish the modern autism “brand”?
The Media Guide also defies logic. To actually get a diagnosis of autism you need to demonstrate not ‘superpowers’ but clinical impairments in key areas of functioning, eg communication, social interactions and restricted/repetitive behaviours. There is nothing in the actual definition — whether in the ICD-11 here in the UK, or the DSM-5 in the US — of autism about strengths. While all people with autism surely have some strengths, this is not what qualifies them for a diagnosis of autism.
To be diagnosed autistic under ICD-11 you need to have shown: “deficits … sufficiently severe to cause impairment in personal, family, social, educational, occupational or other important areas of functioning … usually a pervasive feature of the individual’s functioning observable in all settings.”
What’s needed for an actual autism diagnosis (in our case, a 30-page diagnostic report filled with supposedly offending terms) is what the Media Guide would like to throw away. The Orwellian doublespeak of it makes the head spin.
So what is a poor reporter to do? Between Thunberg giving world-changing speeches at the UN, and my son who is still working on phrases like “go outside play”? (And that phase, by the way, is a huge triumph for him — his UN moment— given his starting point.) What versions of autism are they allowed to share? Clearly, not my son’s.
Clarity matters. My son will need 24/7 care for life, and is not safe to cross a road or be left alone for even five minutes. He has strengths, yes, including a capacity for pure joy which lights up the faces of all around him. But he will never live independently, or have a job, or marry or do so many of the things we all take for granted for our children. It does him no favours — overshadows his profound needs — to “concentrate on his strengths.” Actually it does no favours to the very real needs of all on the spectrum to language-police autism. I don’t downplay the host of problems faced by higher cognitively functioning autists, and others should not downplay my son’s.
The drowning out of autism reality under a sea of euphemisms obscures my son’s needs. It obscures the needs of autistic folk who are severe (not allowed to say that), the ones who are low functioning (not allowed to say that), the ones whose families are financially and emotionally devastated (not allowed to say that), and a society facing serious social support demands from a growing population of severely autistic (not allowed to say that) adults. And out of sight, out of mind has devastating real-world consequences for those at the severe end of the spectrum. As has been shown by the uncovering of serial abuses in residential ‘care’ homes for autistic adults here in the UK.
The style guide authors at Autistica no doubt meant well, wanting to remove what they see as negativity from autism discourse. But the real “right language” to use about autism is the truth about what their difficulties are, and therefore what services society needs to step up and provide.
Notes:
(1) Learning/intellectual disability
An estimated 50 % of autistic people also have a learning/intellectual disability according to UK and World Health Organisation figures. US figures now put this closer to 30%.
https://www.autism.org.uk/about/what-is/myths-facts-stats.aspx
https://www.who.int/features/qa/85/en/
https://www.autismspeaks.org/autism-facts-and-figures
(2) Non or minimally verbal
People with ASD commonly also have language difficulties, and around 25% to 30% of children are unable to use verbal language to communicate or are minimally verbal (use fewer than 30 words).
https://www.cochrane.org/CD012324/BEHAV_are-communication-interventions-effective-minimally-verbal-children-autism-spectrum-disorder
(3) Self injury
Self-injurious behaviors (SIB) have been reported in more than 30 % of children with an autism spectrum disorder (ASD)
https://www.ncbi.nlm.nih.gov/m/pubmed/27565654/
(4) Aggression
Aggression is a particularly impactful and limiting co-occurring behaviour. Reported prevalences of aggression in ASD are 35–50% (Kanne and Mazurek 2011; Mazurek et al. 2013).
https://link.springer.com/article/10.1007/s10803-019-04129-3?utm_source=Copy+of+Spectrum+News+%28Daily+Report%29&utm_campaign=92510b6953-EMAIL_CAMPAIGN_2019_07_19_03_55&utm_medium=email&utm_term=0_5d6f652fd5-92510b6953-168433881
(5) Mortality
Autistic adults with a learning disability are 40 times more likely to die prematurely due to a neurological condition, with epilepsy the leading cause of death. Autistic adults without a learning disability are 9 times more likely to due from suicide.
https://www.autistica.org.uk/downloads/files/Personal-tragedies-public-crisis-ONLINE.pdf
(6) Severity levels in autism: levels 1-3, DSM-5
https://www.autismspeaks.org/autism-diagnosis-criteria-dsm5
The author with her son Johnny, who is 16, severely autistic, brings pure joy to all who meet him, and will require 24/7/365 care for life.
Jane McCready is a mum and stepmum of four, including a severely autistic son and a high functioning stepdaughter. She lives in London, UK with her husband and two of the children. Jane runs the ABA Access4All campaign and sits on the Leadership Council of the NCSA.
