Media perceptions of autism – On booting up my laptop this morning and doing my usual research into all of those autism stories of interest I happened to find an article, posted on the BBC Northern Ireland website that read as; Cinemas help make films accessible for autism sufferers.’ Now this made me stop in my tracks, as what grabbed me was the headline itself and the use of the word, ‘sufferer‘.
Now the article itself is wonderful. It describes how the family of a young child on the autistic spectrum enjoy going to watch Autism Friendly Screenings at their local cinema. So the article is therefore helping to spread autism awareness and share that cinemas are now partaking in such schemes. So this is an extremely positive article and one which I applaud.
But why add a title with the phrase, ‘autism sufferer’ to such an uplifting and positive story? Why the obvious juxtaposition? I don’t get it, shouldn’t the headline read something such as, Children with autism can now experience the delights of the cinema‘ or something of that nature?
Why add the word sufferer at all?
Why not simply emit this word? A part of me believes that headlines such as this are needed to grab the attention of readers, as it did me, but for totally the wrong reason. Another part of me also believes that the media and indeed the general public, believe that to have autism is to also suffer, and this is what angers me the most. This association and indeed stigma needs to stop. The media are helping to fuel such associations of suffering and misery with having an Autism Spectrum Disorder with headlines such as these.
The use of the word ‘sufferer’ when attached to autism is not helpful.
It is not helpful to the individual, the families who care for that loved one or indeed to the autism community as a whole. What this word does is once again label and define those individuals who are on the autism spectrum as sufferers.
I dislike the phrase ‘autism sufferer’ as when I read this phrase, what is instantly conjured up in my mind are images of bleakness and despair, that the person whom the story is based upon lives a life of misery. More importantly I also feel that the phrase creates a link to the medical model of health, making autism appear as a disease, which it is not.
My little boy has Autistic Spectrum Disorder, and although I cannot truly speak for him, as only he knows how he feels, I do know that he is a happy, energetic and fun-loving little boy. We have our daily challenges it is true, but so do a lot of other people who are not on the autism spectrum. We all have our daily challenges in our lives. My little boy enjoys life, he is a little boy who just happens to be on the autistic spectrum; he is not an ‘autism sufferer.’ This pigeon holes my little boy, this is not his life, autism is one aspect of it.
We have adapted and made changes and I continue to learn in order to make life easier and happier for him, but to read such headlines on a daily basis is really not helpful. Life can be tough, yes, as already stated but you know what, we have fun, just as the little boy in this article from the BBC, so why haven’t they stated that in the title?
This article though is not alone, other such headlines that have been read include those along the lines of, ‘Mum of autism sufferer’; ‘mum in tears of joy after autism sufferer‘ and ‘therapy helps autism sufferer‘. Just do a quick Goggle search and you will see what I mean.
I know that some people will disagree with my comments here, and that’s ok, we all have our differing opinions. Some will say that their child does suffer, that they are on the severe end of the spectrum, or that it is different for those who are on the high functioning end of the spectrum. Those comments will appear. But my little boy is not high functioning, he attends a specialist ASD school and I still say that he doesn’t suffer and I wish that the media would stop using this term.
So dear journalists of the world, instead of writing these all assuming headlines, just state the facts. State that an individual has autism or is autistic ( there yet again is another heated debate) but please leave out the adjectives, those on the autism spectrum and those who care for them can do that themselves.
Comments are welcomed and encouraged.
Posts like this one only illustrate to to me that the differences between those with milder autism,and those who are more severely disabled are so great,that we will never be able to get along,and understand each other.The higher functioning types may or may not be in the majority,but they seem to be shaping the way autism is shown in the media all over the world.
My autism diagnosis was a little unusual,I had all the features of severe,classic autism,except I had no problems with speech or language.In every other area,I was considered intellectually disabled.Science now knows this is very typical of mitochondrial autism.I have had more developmental,behavioural,and medical problems than most autism families could ever imagine.I lived until I was in my late 40s with all sorts of mysterious medical problems,that no doctor could figure out.I had frequent episodes of head banging,and blackouts that led to wanderings.I would eventually find out this caused by treatable seizures.
In the last few years,I have gotten three medical diagnoses,Severe MTHFR Deficiency,an inborn error of metabolism common in autism,Cerebral Folate Deficiency Syndrome,and a fairly rare type of mitochondrial disease,that has only been discovered in the last few years,and only in low functioning autism.I am also the first adult to be found with this type of mito.This is a medical profile that is pretty much unique to autism.If you read the medical literature about these conditions,it talks about this as a particular subtype of autism.It does not separate the autism from the medical issues.In the case of Cerebral Folate Deficiency,treating the CFD treats the autism as well.I realize this is a scary idea to those who see autism as a difference that should be accepted,and that treating autism erases one’s identity as a person.
Just as I accept the fact that there are those on the spectrum who are less disabled,and higher functioning,I cannnot understand why it is so difficult for higher functioning adults,or parents of higher functioning children,to say “I am not suffering,nor is my child,but I realize there are those who have an autism diagnosis who are.”This does not just include those who have serious medical problems,like mito,it can also include those adults and children who have intellectual disability,or serious mental illness as well as autism.
as an aspiring journalist on the spectrum, I agree that the term “autism sufferer or victim” is unhelpful and honestly really just bad journalism. Implying that someone’s existence is pure suffering due to a disability simply is incorrect- yes there are very difficult aspects of being autistic but it does not make your life instantaneously miserable. At the same time, autism and disability in general should not be glorified either- we should not replace sufferer with superhero. Why not simply use “autistic people” instead- that term doesn’t imply anything