A-Z of Autism by Fixers Design

A to Z of

An introduction

“It’s as if everybody is playing some complicated game and I am the only one who hasn’t been told the rules.” *Martian in the Playground by Clare Sainsbury

A to Z Autism

Introduction My name is Lewis and I have worked with Fixers to create this book. I wanted to create the A-Z of Autism book, after going through school and finding pupils and teachers didnâ&#x20AC;&#x2122;t really understand autism and Aspergerâ&#x20AC;&#x2122;s Syndrome. I think this book is a great introduction for people who want to understand how vast and diverse the autism spectrum is. I have worked with Fixers, the charity which gives young people a voice, to make this book. I want to stop the stigmatism that is associated with autism, and create better knowledge and understanding by people who do not have autism.

A to Z Autism

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Autism “Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.” (autism.org)

Asperger

It usually affects at least one of your five senses if not, all five. I would say autism is a spectrum; it can affect people a little (Asperger’s) or profoundly, but I’ll talk more about that later. As far as I am aware there is no cure for autism, however with interventions and therapy, some people can learn to cope better with their autism. I would say that everybody has some little autistic traits within them, such as carrying out routines, rituals and compulsions.*1

As someone who is a very high functioning autistic, I have noticed that people like me can be labelled as having Asperger’s Syndrome. It’s almost impossible to distinguish the difference between high functioning autism and Asperger’s; I think it can just come down to the person who has carried out the diagnosis. But you might be surprised that there are a lot of celebrities who have high functioning autism or Asperger’s; Susan Boyle, Temple Grandin, to name a few. This might help to break down a certain stereotype of people.

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A to Z Autism

Anger

Some people on the spectrum can find it hard to communicate their anger and to deploy their anger in an appropriate manner. Sometimes they may lash out, shout and hit to release their frustrations.*2

Balance

Poor motor skills can leave some people on the spectrum with poor balance.

Behaviour Sometimes autistic people can have challenging behaviour.

I have seen this at my school and I think this can be because they can find it hard to communicate; therefore this is their way of saying that something is wrong. I have seen behaviours that can range from hair pulling, self-harm, biting, jumping up and down, spitting, swearing, kicking and punching as well as others. But I find once you to get to know an individual you can understand these things. Sometimes people can assume that everyone on the spectrum is the same, which couldnâ&#x20AC;&#x2122;t be further from the truth.

Learning new motor skills depends on the brainâ&#x20AC;&#x2122;s ability to form connections. For example, controlling movement, including the ability to use sensory information from the environment and from the body to predict what is going to happen next, to plan actions and adapt the actions as needed. Postural control refers to the ability to keep the trunk and head steady as well as make small adjustments to align the body and maintain balance.*3

Biting

As mentioned in behaviour, biting can be a way of releasing pent up frustration or trying to tell somebody something is wrong; sometimes those on the lower functioning side of the spectrum can bite as a coping mechanism, as their communication skills might be less developed.*4

A to Z Autism

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Communication As someone who is on the spectrum, I know it is quite common that people on the spectrum will struggle with social skills, but the degree can range from having some to having virtually none to others being affected very little.

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“It’s as if everybody is playing some complicated game and I am the only one who hasn’t been told the rules.” ‘Martian in the Playground: Understanding the Schoolchild with Asperger’s’ by Clare Sainsbury.

They can be affected by not understanding jokes, taking things literally and not understanding sarcasm; just to name a few. I have witnessed some autistic people talk about one thing repetitively or just be totally uninterested in what you have to say. I have noticed that a lot of people, even high functioning on the spectrum, will lack variation in tone of voice and they can sound monotonous. Sometimes people won’t use any facial expressions and won’t understand different gestures. Sometimes social situations can be overwhelming, predominantly in an environment where people don’t understand their condition. A person on the spectrum has said:

A to Z Autism

But not everyone on the spectrum is affected; sometimes people can socialise fine or have very little impediment. But from my experience an awful lot of people on the spectrum will socialise online as it’s easier than doing it in real life. A lot of people have a preconception that everybody on the spectrum is like ‘Mr Bean’, ‘Roy Cropper of Coronation Street’, ‘Sheldon Cooper of The Big Bang Theory’ or like ‘Raymond in Rain Man’. But everybody is an individual. There are some who practically can’t socialise at all. TEACCH approach includes a focus on the individual with autism and the development of a programme around this person’s skills, interests and needs.*5

Discrimination Different If you ask anybody on the spectrum what they want, I’m sure nearly everybody would say that they just want to be accepted and classed as ‘normal’, whatever that may be.

I’ve often heard people who have Asperger’s or autism say that they feel different or socially excluded. Everybody is unique; people on the spectrum just want to be accepted for who they are, just like everyone else.

Developmental & Disability People can have physical and learning disabilities. I have witnessed somebody, having been classed as having as a learning disability, being able to play any song on the keyboard after hearing it. Yet the same boy struggles with other seemingly simple tasks.

Just because somebody is labelled as having a disability, it doesn’t always disable them from everything. There are non-verbal people with autism who have written books.*6

A to Z Autism

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Emotions

Even ‘normal’ people can struggle to cope with their emotions at any time. However people with autism can find it extremely difficult; they can struggle to communicate and become frustrated and angry. They can be agitated, upset or annoyed at things a ‘normal’ person would be fine with. And for non-verbal people it can lead to an eruption of frustration. But then other times they can be unemotional, lack empathy and have no concept of selflessness. This can sometimes make them hard to understand. They can find coping mechanisms for their emotions but we’ll go more into this in ‘outbursts’.*7

Echolalia

Echolalia is where people repeat repetitive noises or phrases. Nearly all children have echolalia when learning to communicate as it is part of learning a language. However it is also common with people who have lower functioning autism. They may repeat the question instead of answering it; it can also be a sign of feeling irritable, anxious or frustrated.

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Extreme

If a situation makes somebody with autism upset, their emotional reaction can seem very over the top even for something that might seem trivial, like spilling their coffee. They can act in an extreme manner such as lashing out or crying. If somebody has a favourite football team, they could probably name the squad. Somebody with autism could possibly tell you all their names, ages, where they are from and what their previous clubs were. These examples are to help you relate to people with autism, and understand they can often be overwhelmed or underwhelmed.

A to Z Autism

Frightened

While I was putting this list together, somebody said that people with autism always appear frightened, nervous or fearful of something. It made me think how true that was. A ‘normal’ person could be in a situation that doesn’t concern them at all, while somebody with autism would be extremely fearful or nervous, for example of encountering a new person, environment or task. This can often lead to people with autism being on guard, which can make them harder to connect with.

Fidgety

When people are feeling anxious, unable to cope, nervous or trying to soothe themselves, they often get fidgety or use repetitive behaviours to stimulate themselves. This can be anything from playing with their hands, rocking from side to side, moving their legs or biting their nails. This is known as ‘stimming’, and it acts as way of relieving nervous energy. Think of it as a radio dial; a normal person’s dial could be at 3 and all they need is a foot tapping. Where as a person on the spectrum could be at 9, and ‘stimming’ helps with this anxious energy*8

A to Z Autism

Friendship

I would say that some people with autism, and a lot of people with Asperger’s, struggle with friendship. They can find it incredibly difficult to make or maintain friendships. Some have social skills so severely affected they find it hard to interact at all, yet they can still be very intelligent people. One of the things that people on the spectrum would really like is to have acceptance and inclusion in social situations.

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Guarded

Sometimes people with autism can be guarded and have reservations about people making suggestions. This can also appear as rigid thinking, particularly about going to certain places, or not wanting to let people know their emotions. I’ve seen that bottling up a lot of things can lead to people having problems later and can result in a need for therapy. They often try to cut the world out in any way that they can so they don’t have to struggle to understand other people, as this isolation can feel comforting.

Gender

Genetics

People with autism may have somebody else in their family on the spectrum too, as it can be genetic. If you already have children on the spectrum then it can be likely that further children might also be on the spectrum, but perhaps to a different degree.

Autism seems more prevalent in boys than girls. According to different studies, males are up to 16 times more likely to have autism than females. There has been a lot of research and many different studies but, as yet, there is no conclusive evidence as to why it’s more prevalent in boys. Wing (1981) found that among people with high-functioning autism or Asperger’s syndrome there was as many as 15 times as many males as females.*9

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A to Z Autism

Hyper & Hypo

Hyper and hypo sensitivity is something that can be common in young people and children with Asperger’s Syndrome and with Autism. They can often change from being hyper-sensitive (over sensitive) to hypo-sensitive (under sensitive) to unexpected stimuli in the environment. For example, a touch or noise could startle a child and make them scream, but at other times they may remain unresponsive as their parent calls their name and act as if the world is non-existent, as they will have closed their senses to the world around them to a degree.*10

For a ‘normal’ child, their stimulus is quite predictable and anticipated. For example, they expect a variety of different loud sounds when they see builders using a drill, but not when a cushion falls on the floor. They expect a tactile gesture such as a hug or a kiss when their grandparent is approaching them with open arms. Even when they don’t notice someone approaching their front door, the first knock may startle them however the subsequent knocks don’t because they expect more than one knock. When someone starts using the vacuum cleaner, the noise may at first startle them however they expect it to go on, and they adapt to it. However for children on the spectrum, it isn’t always so predictable to them and can be quite frightening.

High Functioning Some people on the spectrum are classed as high functioning and I would include myself within this. It is incredibly hard to distinguish the difference between Asperger’s and high functioning autism which is why people are now trying to abolish Asperger’s from their terminology when they’re discussing diagnosis. High functioning is where you can function within the level of a neurotypical person but you still may have some issues either socially or with sensory reactions.

A to Z Autism

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Individuality

Everybody is different yet some people seem to see autism as one category which fits all when that couldn’t be further from the truth. Just as personality and interests differ from person to person, you can get huge variations within the autism spectrum. Some people are profoundly disabled with a low functioning level of autism and some, like Carly Fleischmann or Temple Grandin, have their own difficulties and yet have found voices and talents which some might have found totally unexpected. People are individuals; they don’t want to be defined by a label.

Intelligence

Although people on the spectrum who have lower functioning levels struggle cognitively, people with high functioning autism or Asperger’s often have average or above average intelligence. In my class, I have seen people who are exceptionally talented musically and artistically but they struggle with what would be considered basic academics. “One way I like to define myself living with autism is that I’m closed on the outside, and open on the inside. I may come across as not listening or paying attention, but trust me, I am.” - Russell Lehmann.*11

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Intervention

There are a variety of different interventions which can be put in place from a young age that will help a person with autism cope better with their difficulties; these can range from psychological interventions such as CBT (Cognitive Behavioural Therapy) which has helped manage aspects of my anxiety. Another intervention that I have experienced is being prescribed medication to regulate my mood; medication does vary depending on individual needs. Sensory intervention is a common therapy for people affected by autism. I am highly sensitive to different fabrics and sensory intervention helped me deal with it. I have seen other therapies offered from assistive and adaptive technology, augmentative and alternative communication, motor and sensory interventions, behavioural and developmental interventions as well as others, all of which have helped people with hyper- and hypo-sensitivities.*12

A to Z Autism

Jumping

When people are quite distressed, anxious or overwhelmed they can resort to jumping as a coping mechanism which will calm them down. They also may feel under-stimulated by their surroundings. I have seen people jumping vigorously, pacing and rocking in order to stimulate their senses. It can look quite extreme; however neurotypical people do it on a lower level, such as tapping their feet, rocking, clicking and biting pens as well as other things.

Jittery

People with autism may come across as jittery due to anxiety or uncertainty of an unfamiliar environment. There have been situations where I have felt nervous and jittery from being in a room with lots of people in a social situation. Self-reassurance and reassurance from others often helps me when Iâ&#x20AC;&#x2122;m feeling this way.*13

Jobs

Just because somebody has autism, it doesnâ&#x20AC;&#x2122;t mean that they canâ&#x20AC;&#x2122;t hold down a job. I have studied at school and currently at college, I have also worked full time in a local pub being a bartender, working front of house as well as working as a KP (Kitchen Porter). There are many different skills and talents that individuals with autism can bring to the workplace.

A to Z Autism

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Knowledge

People with autism can have a vast amount of indepth knowledge on a specific subject that they’re interested in. Savant syndrome is where people can store and recite an immense amount of information. I have seen this in a classmate of mine who is extremely knowledgeable around a particular subject.

Kicking can be a way of releasing frustration, anger and annoyance as well as a way of stimulating your senses and calming yourself down. I have seen this type of behaviour in various different situations. There’ll be more of this in ‘outbursts’.

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A to Z Autism

Literal

Due to people with autism processing information very differently, they can take things very literally. Phrases such as “Pull your socks up”, “Keep your head up”, “Stop dragging your heels”, “Strange Egg”, “Don’t take it to heart”, “Head over heels”, “Chip on his shoulder” and “Break a leg” might be taken very literally. Sarcasm can also be hard to understand and interpret.*14

Low Functioning

This is the opposite of high functioning individuals with autism. If somebody is low functioning, they may be non-verbal, or be physically disabled. People with low functioning autism find it particularly hard to process information. For example, you might have to break instructions right down into manageable chunks such as ‘Pick up your rubbish,’ then ‘Stand up’ and ‘Go to the bin.’

Loud

Due to people with autism having hypo- or hyper-sensitivity to certain noises, some might chose to wear ear defenders or headphones. Somebody who is hyper-sensitive to sound can struggle with different sounds in general, whereas somebody who is hypo-sensitive is likely to seek out different sounds and enjoy the sensation of different noises. I’ve been at school with people who have used ear defenders on a daily basis as well as people who wear headphones. On a personal level, if I’m concentrating I like complete and utter silence.

A to Z Autism

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Mental Health My experience of autism is that people who are on the autistic spectrum often have other mental health problems too, such as anxiety and depression. Obsessive Compulsive Disorder (OCD) and autism often overlap which can make it very hard for psychologists to recognise the main problem. For example, when my OCD was at its worst I wouldn’t eat food if somebody else had spoken over it as I hated the thought of people spitting when they spoke. People with autism like structure and routine and if they start collecting things, it can become an obsession. I personally had OCD around cleaning rituals, but other people might feel the need to tap certain things or become fixated with something. All of this is OCD but also can be a trait of autism. Self-harming can be a mental health issue which people with autism experience. If people self-harm it might be to feel a release of stress and anxieties. They say it makes them ‘feel’ something.*15

Mental Health Unit

I have been in a mental health unit and noticed a lot of people’s problems can be exasperated by the use of drugs, alcohol and behaviour issues.

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A to Z Autism

Non Verbal Some individuals with autism are unable to communicate through speech. There are many methods of communication which non-verbal people can use such as PECS (Picture Exchange Communication System), Makaton (a language programme using signs and symbols) and assisted computer technology systems, for example you may have seen Stephen Hawking using a computer based communication system.*16

Normal

What is normal? Everybody is good at something and not so good at other things.

A to Z Autism

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Outbursts

There are various different forms of outbursts such as tapping, jumping, yelling, jumping, clicking and rocking as well as many others. This can be caused by an inability to communicate and frustrations of not being understood. This can be prevalent right the way through from low functioning to high functioning.

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Obsessions

These can be routines, rituals, repetitive behaviours and compulsions and can be coping mechanisms for people with autism. People with autism often have the need for routines and things to remain the same; this can be from getting up at a certain time, sitting in the same place for dinner or drinking out of the same cup. Due to my co-morbidity of OCD, I would often have to carry out my compulsion to wash myself a certain amount of times on each body part and it had to be the same product. At dinner time, there might not be allocated seats however there can be an unspoken rule where everybody has to sit in the same place so as not to cause disruption.

Outreach

Outreach can be a useful intervention by getting people out in the community and communicating with different people as well as learning how to be social. I had some support when I was severely struggling with my OCD and I went out for a walk to break the cycle of being reclusively stuck in the house.

A to Z Autism

PECS

PECS â&#x20AC;&#x201C; Picture Exchange Communication System This is a system that is sometimes used to help those that have severe social skills and find it very difficult to communicate. It is where pictures are used to aid communication. It is especially important for anyone who is non-verbal autistic.*17

A to Z Autism

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Quirkiness High functioning people on the autism spectrum can have fairly good social skills and their habits can seem like quirks, which they are.

But it is always good to understand that these routines and quirks are pretty ingrained and not amusements for those watching.

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A to Z Autism

Quiet

We can come across as aloof, but we like quiet and peaceful surroundings. This is because we can be over stimulated if there is too much going on around us. For instance in a classroom, if people are talking and I am trying to listen to a teacher, I can find it difficult to ignore all the other voices and even noises. It can feel like white noise and really grate on my nerves and distract my attention, to the point where I will become quite anxious.

Routine

People on the autism spectrum can feel comforted with routines and habits and like to know what to expect and what is about to happen. It is the unknown that can make people on the spectrum feel anxious.

Reserved

Our personalities can come across as reserved. Depending on where you are on the spectrum, your social skills can vary. A person with autism might come across as reserved but that might just be because they are struggling to pick up on the social cues.

A to Z Autism

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Spectrum

The autism spectrum is so diverse! It describes a range of conditions classified as neurodevelopmental disorders.

Sensory

People with autism can be over- or under-reactive to stimulation (hyper and hypo) and problems with sensory skills may be the reason for particular behaviours. Some people with autism are very sensitive to noise; wearing ear defenders can help with this.

Sleeping disorder

Sleep problems are very common, reportedly as high as 80% in children with autism spectrum disorder (ASD). Naturally, a lack of sleep can result in learning problems, daytime tiredness, behavioural issues and aggression. There are many reasons for poor sleep in people with autism including neurological, behavioural, and medical issues.*18

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A to Z Autism

Tactile

Sometimes people with autism can be overly sensitive (hyper-sensitive) to fabrics. This is a bit like someone hating the feel of cotton wool or paper, but more extreme.

TEACCH

The TEACCH approach includes a focus on the individual with autism and the development of a program around this personâ&#x20AC;&#x2122;s skills, interests and needs.*19

I used to hate wearing natural fabrics and would only wear man-made fabrics. But I had help to get used to these and nowadays I am not as sensitive. However, at the time it would make me feel extremely uncomfortable.

Therory of Mind

This refers to the idea that many autistic individuals do not understand that other people have their own plans, thoughts, and points of view. Furthermore, it appears that they have difficulty understanding other peopleâ&#x20AC;&#x2122;s beliefs, attitudes and emotions.*20

Therapy

There are many therapies that people with autism receive and take part in. People with autism work very closely with speech and language therapists, for example.

A to Z Autism

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Unique

Everyone is unique and individual!

Understanding

A little understanding goes a long way in helping and supporting someone with autism! There are various websites you can visit to find out more about autism.

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A to Z Autism

Visual

Visual tools and prompts can be great for people with autism to use. Common visual aids that people with autism use are things like PECS (Picture exchange communication system), TEACCH (treatment and education of autism and related communication handicapped children) and daily planners.

Verbal

People on the autism spectrum communicate in various ways - verbally and non-verbally. Some children with autism may never develop verbal language skills.*21

Violence

Some people with autism demonstrate violent acts. This could be for various reasons. It could be due to anger and frustration, or it could be because of pain. For others, it is a way of communicating or seeking attention.

A to Z Autism

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Withdrawn Some people with autism can be very withdrawn depending on levels of anxiety and communication methods. People with autism can communicate in many ways, not always through verbal communication.

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A to Z Autism

X Xylaphone

We can be very musical!

A to Z Autism

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Y Yelling

Again, this is a behaviour trait. Sometimes people with autism will yell out of frustration at not being able to communicate and not being understood, but also people sometimes yell as they enjoy the audible sound as it can be stimulation to them.

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A to Z Autism

Z Zzzzzzz

Like everone,

We love sleeping!

A to Z Autism

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Websites we used for our research

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autism.org.uk -search “autism cure”

autismhelp.org -search “autism anger”

autismprograms.com -search “autism movement”

autism.org.uk -search “autism biting”

autism.org.uk -search “autism communication”

carlysvoice.com

autism.org.uk -search “autism communication”

autism.com -search “autism stimming”

autism.org -search “autism and gap”

*10

autism.org -search “austims sensory sensitivities”

*11

aweinautism.org -search “Russell Lehmann

*12

autism.org -search “autism CBT intervention”

*13

autism.com -search “autism stimming”

*14

autismkey.com -search “autism literal”

*15

autism.org -search “autism mental health”

*16

autism.about.com -search “autism non verbal”

*17

nationalautismresources.com -search “autism PECS”

*18

autismspeaks.org -search “autism sleeping disorders”

*19

autismuk.com -search “autism TEACCH”

*20

autism.com -search “autism theory of mind”

*21

autism.com -search “autism communication problems”

A to Z Autism

If you would like more information on the things we have covered in this book, try these websites:

Autism autism.org Autism autism.org Autism Speaks autismspeaks.org

I also found this forum a good place to discuss autism:

wrongplanet.net

A to Z Autism

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Fixers is a campaign that helps young people ‘use their past to fix the future’ and is part-funded by the National Lottery through the Big Lottery Fund.

FixersUK

fixers.org.uk