Post 3: How do we describe autism?

Welcome to week 3.

Last week I touched on the terminology used to describe the autism spectrum.  This week's blog will explore the topic a little more.

There are many terms used to describe those on the autism spectrum. Leo Kanner first introduced the term autism in the 1940's, and until the early 1980's this was the term used by the small minority of people who knew about the condition.  Then Lorna Wing & Judith Gould introduced the idea of the autism spectrum and used the term Autistic Spectrum Disorder (ASD) to describe those on it.  This included people with a diagnosis of classic (Kanner's) autism and Asperger Syndrome.  Since changes to the main diagnostic criteria in 2013 ASD is the term now generally used in a diagnosis.

Results of a recent study

In 2015 a study was carried out by the National Autistic Society and 2 other organisations looking at the terms used to describe autistic people in the UK. Almost 3500 people were surveyed from the autism community, including people on the autism spectrum, their families and professionals who support them.  Surprisingly, the study found that there is not one single preferred term.  

What the study did highlight is need to move away from negative terms such as 'disorder', which belongs to the medical model of disability - looking at what is 'wrong' with a person and searching for a cure.  Many people who are on the autism spectrum see their autism as a difference, just part of their personality rather than something that is wrong with them.  This is one of the responses from the survey:

“Autism is just another way of thinking, not some sort of disease that one can catch”

You may have heard the term 'neurodiversity', well, the neurodiversity movement follow the social model of disability.  They see autism as a form of diversity found throughout human society for example, differences in race, sexuality, gender, ethnicity or culture.   Have a look at this video in the 'Ask an autistic' series which explains neurodiversity as well as another term you may have come across, neurotypical.

There are also lots of discussions going on about whether to use people-first language, for example 'person with autism', or put the diagnosis first as in 'autistic person'.  You can learn more about this by listening to a podcast which discusses the research, and there's an interesting summary of the study here.  The reference for the full article is in the Useful Resources section below.

The study did find that most groups surveyed accept the term on the 'autism spectrum' and this is the term generally adopted by the National Autistic Society. This will be used throughout our training and in the blog, but remember that to provide a person-centred approach to supporting someone on the autism you should ask them their preference.

Useful resources

As a Cumbria student you can click here to access the full article mentioned above 

Kenny et al. (2016) 'Which terms should be used to describe autism? Perspectives from the UK autism community', The International Journal of Research and Practice, 20(4), pp.442-462.

There's also a book available in the library which I found useful to dip in and out of:

Silberman, S. (2015) Neurotribes: The legacy of autism and how to think smarter about people who think differently.  London: Allen & Unwin.  Next week I'll share an excellent TED talk by Silberman.

Another TEDx Talk I came across explains neurodiversity brilliantly.  It's by Elizabeth Wiklander called 'Neurodiversity - the key that unlocked my world'.

Contact

If you have any queries or concerns over the Summer you can contact me directly at lesley.english@cumbria.ac.uk 

For general queries relating to the peer mentoring scheme contact peermentoring@cumbria.ac.uk

Post 4: Portrayals of the autism spectrum in the media

Welcome to week 4.

Last weekend I went over to Liverpool to watch the touring production of the Curious incident of the dog in the night time.  This is the theatre version of the book by Mark Haddon and is a story told through the eyes of a boy on the autism spectrum who sets out to investigate who killed his neighbour's dog, Wellngton.

It's an amazing, and very emotional, production - if you get the chance to go I highly recommend it. My only hesitation is, while it raises awareness of the autism spectrum, it may result in people believing that Christopher (the main character) represents all people on the autism spectrum.  Back in 1989 when the film Rain Man was released, autism was very much an unknown condition.  While the film, which was a massive box office hit, raised the profile of autism, it also led to the general public having a stereotypical image of a savant, someone with special abilities.   Raymond, the character on the autism spectrum, had the ability to instantly count hundreds of objects at once, far beyond the normal range of human abilities.

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Think about the other films and TV programmes that potentially have a character with AS.  Not always explicit, for example Saga Noren in the Swedish/ Dutch series 'The Bridge' (recommend this for so many reasons) or   Sherlock Holmes.  These are programmes which, while fictional, show people with AS in a more positive light, they are not held back by their difficulties and their strengths are highlighted.  There's an interesting article from the Telegraph titled 'Sherlock Holmes is autistic, leading charity claims' which expands on this.

Last year the BBC ran a series called 'The A Word' about the family of a 5 year old boy, Joe, who is diagnosed with autism.  The programme focused on the emotions that the family went through while coming to terms with Joe's diagnosis, and while the programme was moving and again, brought the autism spectrum to mainstream television, I struggled with some of the finer detail.  For example, Joe's parents were able to immediately get an appointment with a paediatrician who, within a week, gave a diagnosis of AS.  Most families have a really long wait from first voicing their concerns to seeing a professional such as an educational psychologist, pediatrician or Child & Adolescent Mental Health Service (CAMHS) before a diagnosis is made.  In fact a study carried out in 2016 showed that parents wait, on average, 3 1/2 years before receiving an autism diagnosis for their child (a summary of the research is available here, or see the link to the full article below).  I guess the programme would not have worked as well if Joe had to wait that long, but to me it felt like such a major part of the journey to diagnosis was skimmed over.

There are also an increasing number of documentaries being aired which highlight the diversity of the autism spectrum, some of which I've linked to in the Useful Resources section below.

Finally for this week, in April Sesame Street introduced a character called Julia, who is on the autism spectrum, and this feels like a positive step to introduce autism to children at a young age.  It's just a shame that many of the characters we see in the media portray a stereotype.  Alaina Leary writes in her article 'Autism on Television':

"Because while I'm happy that people have a character they can relate to on screen, I'm also disappointed that it's always via the same traits, namely trouble understanding sarcasm coupled with an intense, bordering on obsessive, love of science.  The best autistic characters would mirror real people, not a set of diagnostic criteria.  They would be as diverse and different as the real life autistic community is".

Useful Resources

Crane, L. et al. (2016) 'Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom', Autism: The International Journal of Research and Practice, 20(2), pp.153-162. (Universiy of Cumbria students can access the full article by clicking the link).


Documentaries:

Channel 4 (2015) Born Naughty?

ITV (2017) Girls with autism

BBC (2017) Richard and Jaco: Life with autism


Contact:

If you have any queries or concerns over the Summer you can contact me directly at lesley.english@cumbria.ac.uk 

For general queries relating to the peer mentoring scheme contact peermentoring@cumbria.ac.uk 

I look forward to meeting you all in September.

Post 2: If you've met one person with autism...

I hope you found the blog for week 1 useful. This week I started, and deleted, the blog post quite a few times as I couldn't decide which was the most important topic to write about next.  Eventually I decided to start by sharing a quote by Stephen Shone:

"If you've met one person with autism, you've met one person with autism".

As you probably know, autism is a spectrum condition.  It affects individuals in different ways, so we can't assume just because we know one person who is autistic and know their difficulties and the way to support them that this will work for another person we meet who is on the autism spectrum.

Some people, who have what is known as 'classic autism',  have no language, others may have echolalia (where the person repeats words or phrases, but may not understand the meaning).  Sensory processing difficulties are common in people on the autism spectrum, some may be hyper (over) sensitive to sound - they may find the noise from a strip light unbearable, while others are hypo (under) sensitive, they may have a need to bang doors or be in noisy places.   Any of the senses may be affected.  The National Autistic Society (NAS) have an informative page on their website on sensory differences , and how this can affect behaviour and may lead to sensory overload, sometimes resulting in a meltdown.

Have a look at this very short video created by the NAS to imagine how it may feel to be hyper-sensitive to sound:

I find the videos in the NAS "Too much information" series really relevant, and will refer to these again over the Summer.  They focus on a group of young people on the autism spectrum who sit and discuss their experiences of life on the autism spectrum.  This one is called "Experiencing sensory overload":

We'll look at sensory difficulties and sensory overload more when we meet up in September.

Developing a person-centred approach

Going back to the original quote, one of the most important lessons I have learned is to develop a person-centred approach when working with and supporting people on the autism spectrum.  That can start with something as simple (yet really important) as how they would like you to refer to their autism - do they refer to themselves as autistic, as having autism, as being an 'aspie' or being on the autism spectrum (we'll look at terminology a little more next week).  When you first meet a student that you are supporting you might want to ask what they find difficult, how you can support them best in that situation?  For example, if they find noisy, crowded places uncomfortable ask them where they would like to meet (but remember it needs to be a 'safe place' - more on this in the Peer Mentoring training).  Don't think that because you had a "tool-box" for one person that the same tools will work for another.

Useful resources

A really good way of learning about autism is to read books or watch documentaries by people who are themselves on the autism spectrum.  They are the 'native experts'.  My lovely work colleagues are also following this blog and have been suggesting some useful resources, which will appear in this section over the summer.  Please comment on the blog if you want to share any resources that you have found useful.

One recently published book is by Chris Packham, the Sping watch presenter, who was diagnosed with Asperger's aged 44, called 'Fingers in the sparkle jar: A memoir'

Another recommendation is 'Fall down seven times, get up eight: a young man's voice from the silence of autism' by Naoki Higashida.

This TED talk feels like a good way to round up this week's blog: Rosie King 'How autism freed me to be myself'


Contact
If you have any queries or concerns over the Summer you can contact me directly at lesley.english@cumbria.ac.uk 

For general queries relating to the peer mentoring scheme contact peermentoring@cumbria.ac.uk