Autistic Spectrum Disorders – an invisible disability?

Autistic Spectrum Disorders – a spectrum of visibility?

Since my son’s diagnosis a few years ago, I have come across sources of information that have described autistic spectrum disorders as an ‘invisible or hidden disability’.  In some ways it is.  Many people with ASD do not have an obvious physical impairment that requires a wheelchair for example or a broken bone that requires a plastercast and yet I am uneasy with ASD being described as an invisible or hidden disability for this suggests that ASD cannot be seen.  But is this really the case?

ASD is a spectrum where the presentation of autism varies from those who are mildly affected to those who are more severely affected.  For those mildly affected such as my daughter, there are no immediate and obvious symptoms of her aspergers.  It is only over time and getting to know her that people can start to observe and ‘hear’ the more subtle signs of her aspergers such as her verbal struggles with communication and language.  For someone more severely affected such as my son his presentation of ASD is not only audible by the way he talks and responds to various situations but it is also visually obvious through his physical behaviours.  From the distant look in his eyes, to his tiptoeing and hand flapping to his difficulty in walking and meltdowns, my son’s autism can be immediately evident to those who know what autism is.  To those who have no understanding of autism then what they may see is a child who is antisocial, rude, aggressive, out-of-control, weird, lazy, the result of bad parenting or poor mothering - these are indeed some of the words used to describe my son (and us) over the years.  Such words have the power to crush an individual and strip away their self-esteem and confidence which is indeed what happened to my son when he was constantly bombarded with negative language at school. 

What then, do you ask, has this got anything to do with my criticism over the ‘invsible and hidden disability’ narrative?

Well, if we continue to describe the autistic spectrum as an invisible or hidden disability, then surely wider society will then expect all forms of autism to be just that, something that can’t be seen.  If they assume that ASD is invisible, how are they likely to respond to children like my son when he behaves in what they deem to be ‘unsociable’ or ‘aggressive’ ways in public spaces?  At the very least their response is likely to be one of confusion or curiosity, at worst blame or name-calling or even bullying - just the attitudes that I have described above in peoples’ responses to my son and my family. 

Do we not, therefore, have a duty to reflect in our writing that autistic people are as diverse as the rest of the population and that while some autistic people may show few or no signs of their autism some people such as my son do?  With this in mind, we need to rethink the use of words such as ‘invisible’ and ‘hidden’ and consider how autistic disorders can be better understood by the wider population.  In this regard, perhaps our responses to autism should not just be judged on what we instantly see but also on what we hear and what we observe through our interactions with others.

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5 Responses to Autistic Spectrum Disorders – an invisible disability?

  1. Aspie in the family says:

    >Thanks for your comments Fiona. You are right about how people's ideas are affected by what they read and watch in the media and I do agree that we have a long way to go before educating most ordinary people. I am probably more shocked at the insufficient understanding of ASD within some of our professional organisations. I have met too many people in education & health with an inadequate understanding of ASD – they just don't get the diversity of the spectrum and how it affects people differently.

    Thanks for popping in and leaving a comment too Casdok. Language can be very powerful, I think, in creating the wrong images of people and starting off stereotypes. I agree we should be more careful of how we use words.

  2. Casdok says:

    >I think we should be more careful of the words we us.

  3. Fiona says:

    >Very interesting and thought provoking post. My take on this is that the use of such terms tends to be driven and perpetuated by the media in particular who like to use convenient labels and trundle them out whenever required. The Motivation behind and context for the use of such inaccurate and almost sensationalsit terminology depending upon the target audience. Therefore educating the uninitiated becomes a challenge which is virtually impossible to overcome. 'They heard about autism on the news, through a documentary or in the paper.' Yes, we absolutely can and should explain the nature and variety of autistic spectrum disorders when the opportunities present but when we daily face TV, press and even some ASD organisations using such terminology I fear litte will truly alter. I've got to the point where I expect to do battle with the world every time I leave the house with J. The stares, comments etc., It hurts and exhausts. I fear we have a long way to go to achieve the understanding and tolerance that our children deserve whilst most peoples understanding of autism comes through such sources.

  4. Aspie in the family says:

    >Hi Lucewoman – thankyou for your valuable contribution to this post. I agree with you about the negative language about ASD and ignorant comments. They can be very hurtful and damaging to someone's self-esteem. I have found that such comments are usually made by people with no understanding of ASD. Its time people started to embrace difference rather than condemn it but to do that people need educating about ASD. This is why I think we ought to be careful how we describe ASD; it isn't always hidden.

  5. LUCEWOMAN says:

    >I think back to my school days, there were 2 brothers. Every day these boys were bullied because they were 'weird'. Teachers offered little support to them, the boys were misunderstood, undiagnosed ASD sufferers. My eldest son didn't get a diagnosis of Asperger's. I believe he has mild Asperger's, but I am just his mother. I continue to tolerate people calling him 'rude' 'odd' 'aloof' 'strange'. My middle son is in the middle of a complex difference of opinion between professionals and family members. Being 3 and a half, it could go either way. I tolerate him being described as 'obsessive' 'shy' 'quick tempered' and 'strange'. What angers me most, is when ignorant comments are made such as 'they are too quick to diagnose Autism'. It is a complex, drawn out process involving many agencies.
    I hope one day my sons can be described in a positive way, with or without a diagnosis. I have worked exceptionally hard to instil good manners, a well-structured yet varied life and they have always been my priority.

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