Autism Awareness – How Donald’s story shows attitudes are changing

In the 1930s a young boy called Donald Grey Triplett was the first person to be diagnosed with autism. Now in his 80s, he is regarded in a celebratory fashion, and not as a curiosity or a statistic. He drives a car, a Cadillac no less, and is well-liked by those who know him. His autism has not gone away, but he is part of the community, looked-after and cherished, living in his own house.

I was thinking, all these years on, , whether the general population, like those in Donald’s hometown, are more aware of autism – and its challenges.

There are numerous campaigns and callings to increase public and professional awareness of autism – but what does this really mean? Is this what the autism population needs? People with autism are often said to take language ‘literally’ – or, a fairer way might be to say ‘accurately’. It is, perhaps, ironic then that the Cambridge dictionary definition of ‘awareness’ seems rather ambiguous:

Awareness – knowledge that something ​exists, or ​understanding of a ​situation or ​subject at the ​present ​time ​based on ​information or ​experience.

From an autism perspective there is massive disparity between ‘knowledge that something exists’ and an ‘understanding of a situation or subject’.

Back in 1998 The National Autistic Society (NAS) produced a study identifying levels of awareness of autism in the UK (Beyond Rainman) – perhaps unsurprisingly the results make for somewhat depressing reading. More recent research, however, paints a very different picture; in 2015 the NAS statistics refer to a staggering 99 per cent of the population claiming to be ‘aware’ of autism.

As is so often the case, though, statistics may be misleading. Delving deeper into the issue, the NAS identify that of those proclaiming awareness, nearly one in five first heard about autism via a fictional TV show, film, book, or documentary. Only just over a quarter knew, or knew of, an individual on the spectrum. Most tellingly of all, however, in a separate survey, the NAS report that a huge 87 per cent of those with autism agreed or strongly agreed that the general public do not have a good understanding of autism. It would seem likely, then, that ‘awareness’ in this instance leans more towards knowledge of existence, rather than an understanding of the situation.

Being aware of something and having knowledge about that something should be seen in very different lights, certainly when relating to autism.

The dismay that can be caused by a teacher proclaiming to a parent – “I have a good understanding of autism because I taught an autistic child last year” is something that is still too prevalent in today’s education system. The concept that autism is some generic state that impacts on children and adults in the same way is false; indeed, one could not hope for a more individual set of people.

Logically, what might follow the erroneous conceptualisation of autism as an homogenous group, is a generic response as to how to support individuals; e.g. parents being offered general parenting classes clearly placing the ‘problem’ with the parents.

This response indicates that the issues relate to the individual and/or family, rather than provision and that very often there is a lack of individualised support available. National guidelines call for personalised plans, but the reality for some people is still far from this goal.

What is crucial in terms of understanding is very simple indeed: there is no ‘one size fits all’ approach to any person on the autism spectrum. Each person will have their own identity, formed by their experiences, intellectual ability, personality, and of course the way in which autism impacts upon them.

Their needs may change from one environment to the next, and may even change from one day to the next. Therefore, it is vital that an in depth understanding of any given individual is sought prior to any kind of support being offered – what will be of huge benefit to one person may be dramatically detrimental to another.

In a sense the golden rule might be ‘no single rule applies’; autistic authors refer to seeing life ‘through the autism lens’, in other words understanding life from their perspective and adapting accordingly. I am lucky to see examples of how successful this can be in children and adult provision – it can, literally, be life changing. A depth of understanding can be attained by engaging with those on the spectrum, to learn from their experiences, to develop participatory research relationships, and identify how support needs might differ from one person to the next.

It is absolutely clear that services have improved hugely over the last decade, both in education and beyond. What can’t be done, though, is building a bright future without a good understanding.

It’s very heartwarming to see that, in Donald’s case, he was treated as an individual, and has prospered as a result.


Dr Luke Beardon

Luke is a Senior Lecturer in The Autism Centre at Sheffield Institute of Education.






2 responses to “Autism Awareness – How Donald’s story shows attitudes are changing”

  1. Rachel Stone Avatar
    Rachel Stone

    Great article, very thought-provoking. It’s like saying ‘I have a good understanding of boys because I taught a boy last year’. Everyone is individual. Everyone is different. More representation of diversity in all its forms and manifestations in the media, in the arts, and not in a tokenistic or stereotypical way as Steve suggests, but in a way that reflects the world as it is, would help considerably in this respect.

  2. Steve Thomas Avatar

    The question that still remains unanswered is ‘but what do people actually know though’ and is it feasible for so many to actually have a friend, relative or parent that ‘has autism’ – stereotypes and ‘traits’ perhaps?
    What I sometimes consider ‘the rain-man/Big Bang Theory effect’ – see a representation enough and people become hyper aware of quirks and rapid-fire fact recall (the male stereotype acccentuated until ‘lack of emotionality’ and accumulating sports stats is seen as a ‘bit autistic’).

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