Post 7: Routines and managing change

Welcome to week 7.

This week's blog will focus on the need for routine for people on the autism spectrum, as well as the challenges that any unexpected change to that routine can have.  This seems particularly important as we will be supporting students who are transitioning to University.  They will be faced with a new routine - new setting, new people, perhaps they are moving away from home and into student halls, many of their routines will change.  While some changes can be prepared for there will always be unexpected changes that may cause increased anxiety and can cause a meltdown.  For some this may present itself in challenging behaviour.

Think about the day-to-day changes to routine that we all face at University - cancelled lectures, room changes, different lecturers.  These sorts of changes are not something we can prepare for.  This quote by Jolliffe goes some way in explaining the need for routine as a way of controlling events in an otherwise unpredictable environment:

"Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds and sights... Set routines, times, particular routes and rituals all help to get order into an unbearably chaotic life.  Trying to keep everything the same reduces some of the terrible fear"  

Jolliffe (1992) cited in Howlin (2004), p.137

For some the routine may consist of walking to college the same way, eating the same food, sitting in the same seat in the lecture theatre.  Some people become ritualistic in their routine, with timings needing to be precise.  Others are rigid in their preferences for the clothes that they wear (perhaps one type of fabric) or the colour of the food that they eat (Christopher in 'The curious incident of the dog in the night time' doesn't like anything that is yellow or brown).

Have a look at this National Autistic Society's video in the 'Too Much Information and us' series to hear a group of young people on the autism spectrum talk about their experiences on coping with unexpected change,

Another useful resource is the transcript of an interview with Paula Johnston, an adult with autism, on her experience of coping with change available here.  There's also a short video showing how a person on the autism spectrum might react to a change to their routine such as a delayed train.

As we begin to think about meeting up with our mentees for the first time it is important to ask where they want to meet, and if the place is a comfortable sensory environment for them you may want to continue meeting in this place.   Ensure that you meet at the time that you agreed, and avoid being late.

Further resources

Michael, a colleague on the autism module, and who has Asperger Syndrome has recommended the TV series 'Community'.  He says it is written by an Aspie  "and has one of the best representations of an autistic character I've found, it's also very funny".  You will meet Michael at the training day in September.

Another resource that is available as an ebook through the University library is called 'Lives with autism' by Steve Mee, a former lecturer at the University.  Each chapter shares a personal experience of someone whose life has been touched by autism - people on the autism spectrum, parents, siblings and professionals.  Definitely worth a read.  It's available here.

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 6: Difficulties with social communication & interaction

Welcome to week 6.

Over the past few weeks we have explored some of the background information relating to the autism spectrum, such as it's history and causes, as well as focusing on the importance of using a person-centered approach and the language we use.

Over the next few weeks I will share with you some information about the difficulties people with autism may face in everyday situations.  We will look at these again when we meet, and this understanding will help us in our communication and meetings with students who are on the autism spectrum.

This week will focus on difficulties with social communication and social interaction.  Many people on the autism spectrum find  social situations challenging, and while they want to have friends and relationships they can find it difficult making and maintaining friendships.  Starting University can be challenging for anyone, and can be particularly difficult for someone on the autism spectrum - meeting new people, managing social events, coping with shared accommodation, group work etc. They may come across as insensitive or as behaving socially unacceptably.   Sometimes they may need time alone if they are feeling overloaded.      For some, these factors can result in feeling socially isolated.

"Raining cats and dogs"

Social communication and interaction

People on the autism spectrum may have difficulties with verbal communication, such as taking what people say literally, as well as non-verbal communication, for example, understanding tone of voice or facial expressions.  This can mean that they don't understand jokes or sarcasm, and are unable to tell when people are angry or upset.  Think about some of the phrases used in everyday society "pull your socks up", "use a bit of elbow grease" or "it's cool" (when we are not talking about the temperature!)

While some people may have learned how to understand facial expressions by learning through visual cues such as Picture Exchange Communication Systems (PECS) they may still have difficulties understanding the expectations others have in a conversation.  They may want to talk about their own interests without following the 'social rules' of conversation, for example, asking about the other person's interests.  Have a look at this short video on anxiety in social situations from the National Autistic Society's (NAS) 'Too much information and us' series which shares the experiences of a group of young people on the autism spectrum.

There's a great page on the NAS website called Communicating and interacting which gives some tips on how to communicate more effectively with people on the autism spectrum.  Remember, they may need time to process what you have said to be able to answer you, they may feel that they are getting too much information and need to filter what is relevant or irrelevant.  In this situation you can give use the 6 second rule - be quiet for 6 seconds and then repeat the question.

Have a look at this video from the most recent NAS campaign, 'Too much information' which gives you an idea of how it might feel when you are being asked lots of questions without having time to process the information:

Another useful video from the 'Too much information and us' series' shows the group discussing the topic of processing information, which includes communicating through email, following verbal instructions

Useful resources

This week I am sharing some resources that my colleagues and peers on my course have shared with me.

In an earlier blog I mentioned the brilliant book by Steve Silberman called Neurotribes.  apparently you can get a free audio book through Audible, available here. All you need to do is set up a 30-day free trial.

Here is the link to a 30 minute documentary created by Artvelde University College, Ghent.  In it 6 former students with AS talk about their experiences in the transition to Higher Education and during their sttudies.  While the documntary isn't in English it does have English subtitles.

There's a new series on Netflix which is getting mixed reviews.  It's called Atypical and the main character is an 18-year old American high school students who is looking for a relationship, have a look at the Netflix link here.

The Guardian have reviewed the series here.   The Child Mind Institute have also blogged about the series 'Netflix's'Atypical' splits autism community'.   I'm going to give it a go while I'm on holiday!

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 5: What does (and doesn't) cause autism?

Welcome to week 5.  

This week's blog will look at the causes of autism.  Actually, it will look more at what doesn't cause autism, as according to NHS Choices 

"the exact cause of autism spectrum disorder is unknown"

OK, so lets look at the theories that have emerged over the 80 years since the term autism was first introduced, and rule some of them out...  an excellent place to start is by watching the TED talk by Steve Silberman 'The forgotten history of autism'.

Refrigerator mothers

One of the first myths about the cause of autism was the 'refrigerator mother' which was introduced by Bettelheim in the 1950's.  He was a child development specialist in the America who believed that the mothers were to blame.  He said that autism developed because thy were cold, distant and unable to show affection therefore the child was unable to bond.  Obviously, his theory had a negative effect on the mothers who were already struggling to support their child, and were then made to feel that they were to blame. Unfortunately as there was no other bio-medical explanation at the time the theory was supported by other health practitioners until the mid-1960s when it was challenged by Rimmer, the father of an autistic child and a psychologist.  Even today there are still some who believe that autism is a result of poor parenting, particularly in South Korea and some areas of Europe.


The MMR vaccine

Back in 1998 an article was published in a world-renowned journal 'The Lancet'.  The article gave the results of a study by Dr. Andrew Wakefield that claimed that autism symptoms appeared in 8 children within 1 month of having the Measles, Mups & Rubella (MMR) vaccine.  These claims were reported in the media and resulted in parents choosing not to let their children have the jab.  The number of 2-year olds who were vaccinated fell from 92% in 1995 to 79% in 2003, and in 2013 for the first time in 10 years there were serious outbreaks of measles in the UK.  Following the release of the article a number of large-scale studies were carried out which proved there was no link.  The original research was discredited in 2010 and Dr Wakefield was struck off the medical register, yet there are still people who believe that the MMR vaccine is to blame.

Mercury in vaccines

Another theory is that its the mercury in vaccines that cause autism.  Those who advocate this theory claim that while most people are able to secrete the mercury we come into contact with, some children aren't able to do this and the mercury ends up in their blood stream and is carried into their brain causing autism.  They believe that the levels of mercury found in the hair of people on the autism spectrum is much less than is found in neurotypical people.  This is another theory that has been discredited.

Leaky gut theory

Have a look at this article in the National Geographic magazine Autism's gut-brain connection which suggests that gut bacteria is different in people who are on the autism spectrum.  Scientific studies do not, however, validate these claims.

Genetic factors
Research has proven that autism runs in families, with studies showing that if there is one child in the family on the autism spectrum then the likelihood of having another child with AS is about 5-10%.  There have also been a number of studies looking at twins that show in identical twins there is a 60-90% chance if one twin has autism that the other will too.  In non-identical twins this number drops to 5-10%.  It doesn't mean that one or both parents themselves are on the autism spectrum, but that both parents are carrying the autism 'risk' genes and may show echoes of autism, for example, being an introvert, mildly obsessive etc.

There is currently no prenatal screening test for autism, and while a blood test may soon become a possibility there are many ethical implications against this (have a look at the article in the Guardian newspaper below 'Are we ready for a prenatal screening test in autism?').  With the introduction of a screening test for Down's Syndrome with 99% accuracy in Denmark abortion rates rose to 98% in pregnancies where Down's Syndrome was detected.  More on this in the BBC article below 'A world without Down's Syndrome?'

Environmental factors

For those who are genetically 'at risk' of having autism research has shown that certain environmental factors can increase (or reduce) the risk.  For example, one study in Norway claimed that taking folic acid before conception and during pregnancy can decrease the risk, however, another study in Denmark found no link between the two.  Studies have claimed (and disclaimed) that the following factors all increase chances of having a child on the autism spectrum:

• Depression & use of anti-depressants
• Premature birth
• Birth by ceasaran
• Older parent (either parent)
• Parents who are overweight
• Pregnancies spaced less than 1 year apart
• Exposure to chemicals, pollutants or pesticides.

So, what does cause autism?

Many in the field believe that autism is caused by a combination of genetics and the environment.  NHS Choices states:

"It's a complex condition and may occur as a result of genetic predisposition (a natural tendency), environment or unknown factors"

Further reading:

Cox, D. (2014) Are we ready for a prenatal screening test in autism? Available at: https://www.theguardian.com/science/blog/2014/may/01/prenatal-scrrening-test-autism-ethical-implications (Accessed: 6 August 2017).

Gee, A. (2016) A world without Down's Syndrome?' Available at: http://www.bbc.co.uk/news/magazine-37500189 (Accessed: 6 August 2017)

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 1: Introduction

Welcome

Welcome to the first blog post for Autism Spectrum (AS) mentors at the University of Cumbria.

AS mentoring is new for the 2017/18 academic year and if you are reading this then you are part of the pilot scheme!  Don't worry, there will be training and support along the way, and we hope that you will find this an enjoyable and rewarding experience.

Introductions

Let me introduce myself.  My name is Lesley English and I will be managing this branch of peer mentoring at the University.  I'm a library and academic adviser and you will find me in the library at the Lancaster campus.  Here's a picture of me!

So, you may wonder what experience I have in supporting students with autism?  Well, I'm studying for a postgraduate qualification here at the University titled 'Working with individuals on the autism spectrum' and I'm mum to a 17 year old son who is autistic.  I like to think that I'm an advocate for autism both in my work and my personal life.

In the comments section below, you may want to introduce yourself and why you have chosen to volunteer for the scheme.

Why use a blog?

In September I will be running a day's training for AS mentors which will give you some guidance on how to work with and support your mentees.  I thought you may find it useful to get regular blog posts over the summer to get you thinking about autism: what it is (and isn't), terminology, the difficulties that students with autism may face (and their strengths).  This will be great preparation for when we get together in September.  Please feel free to comment on the blog posts (in fact I'd love it if you did!), & share resources and we can start to get to know with other a little before we meet up.

Getting started

Here is a great little video by the National Autistic Society (NAS) called What is autism? (the NAS have lots and lots of great resources and signposts to support - click here to find out more).


Useful resources

Another good starting point is the NAS leaflet What is autism? which is available as a PFD file.

The University library has a number of books and ebooks on autism and Asperger syndrome.  I recommend having a look at the title below, which is available both in print and as an ebook.

Baron-Cohen, S. (2008) Autism and Asperger syndrome: The facts.  Oxford: Oxford University Press.

Throughout the summer I will share other useful resources with you.


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 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.

. 

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.