Autism

An introduction to Autism, including lived

experience.
Who are Matthew’s Hub
• Matthew's Hub was founded in 2014 after a donation from Matthew’s mum
Simona to a charity called FIND.
• In October 2016 Matthew’s Hub split from FIND and became an independent
charity.
What is Autism
Autism is a lifelong neurodevelopmental difference which is present from birth
It is not a mental health problem, something you can ‘catch,’ or a learning disability
Diagnostic criteria for autism focuses on differences in social communication and interaction and
repetitive behaviours
First described by Leo Kanner (1943) and Hans Asperger (1944)
The current diagnostic term in the UK is Autistic Spectrum Disorder (ASD)
The terms Aspergers and High functioning are now redundant and no longer used

Traits of autism can feel disabling; often this is because the world isn’t designed for autistic people
and this is where a lot of the difficulties come from
Autism is much more than a diagnosis
prevalence
Around 1 in 57 (1.76%) children in the UK is on the Autistic spectrum, according to a study of more
than 7 million children carried out by reasearchers from Newcastle University in collaboration with
the University of Cambridge Department of Psychiatry and Maastricht University.

Official UK ratio of 1.1% of the population are autistic, that’s around 700,000 people.

Hull City Council (2015) estimates autistic adult population with a learning disability is ‘likely’ to be
within the region of 968 – 1597 and the number of autistic people who don’t have a learning
disability is expected to be within a range of 1062 – 1433 people … but we really don’t know

The male to female ratio is currently 3/1

 Myths
Being autistic is more than just the diagnostic criteria. Over the next few weeks, we’ll discuss aspects of being
autistic such as our senses, masking, and disclosure.

There are lots of stereotypes and myths people have about autism.

• Everyone’s a bit autistic • Autism is a learning disability

• Autistic people have no empathy • Autism only affects children
• Autistic people can’t make eye contact • Women aren’t autistic
• Autism is caused by vaccines/parents • Autistic people don’t have friends/ relationships/ jobs
• Autistic people have special talents/ abilities • Autistic people aren’t social
• Autistic people don’t have a sense of humour • Autistic people are deliberately rude

And the list goes on …..

No two autistic people are the same

Just like neurotypical people, we all

have unique strengths and challenges
Functioning labels
Autistic people are sometimes described as ‘high’ or ‘low’ functioning, or having ‘mild’ or ‘severe’ autism

This is assigned by other people based on how they experience autism, not how the autistic person actually
experiences it

This also doesn’t account for masking or our individual strengths

Environment, stress, mood, tiredness and lots of other things can have an affect functioning on a day to day basis

It is possible not to struggle with something one day but find it challenging the next

The way traits impact can change over time too

Support levels are commonly used at diagnosis

Dyad of impairments
Social interaction and communication
Social interaction and communication
• Differences in how we interact with others and how we share information and
express ourselves
• Difficulty reading facial expressions, body language, and tone of voice
• Difficulty recognising other peoples emotions and intentions
• Difficulties with reciprocal conversation
• Difficulties keeping track of multiple conversations at once
• Using conversation appropriate to the situation
• Difficulty knowing when it’s their turn to speak
• Preference for literal language
• Difficulty understanding hints, jokes and sarcasm
• Development of expressive language is often greater than receptive language
Social interaction and communication
Flat’ tone of voice and facial expressions
Appearing ‘blunt’, ‘rude’ or over honest
May go off on tangents and be difficult to re-direct
Not liking small talk, preferring to discuss topics of interest
Talks about subjects of interest ‘all the time’
Over/ under sharing information
Not making eye contact
Difficulty retaining focus during conversation
A delay in processing time
language
Is your language concrete?
• Did you actually say what you mean
• Did you expect any reading between the lines
• Did you use any slang, jargon, acronyms

How much language did you use?

• Could it have been broken down smaller

Questions
• Did you allow enough processing time?
• Have you asked the same question in different ways?
• Did you avoid open ended questions or too many options?
Literal language
Many autistic people take communication literally.
It is important to try and avoid idioms when possible.

• Eyes in the back of your head

• Get the ball rolling
• They’ve got 2 left feet
• Treading on eggshell
• He worked as if he was tending the grave of his wives uncle

Its not just verbal language that can be taken literally, written language is just as
easily taken literally
masking
Masking is essentially a camouflage to help fit in with the people around them

It involves hiding, disguising or suppressing certain behaviours in order to appear ‘less

autistic’

Autistic people can often feel a lot of pressure to mask in many different situations. This may
be to avoid stigma and judgment

Masking may involve copying and mimicking other people, this can include terminology,
accents, mannerisms and much more

Everybody wears a different mask sometimes. For example, most people act differently in job
interviews to when with friends, and many people have a ‘phone voice.’

Over time autistic masking can become exhausting and contribute to a loss of self identity
emotions
• Intense emotions
• Difficulty reading emotions
• Alexithymia/ difficulty recognising own
emotions
Double empathy
It is important to consider that social communication and interaction is a two way street

It is known that Autistic people struggle with social communication and cues that are used instinctively by
Neurotypical people

However neurotypical people can have similar difficulty understanding and interpreting autistic
communication, culture and behaviour.

It is considered that neurotypical people understand each other better, as do Autistic people; that there is
better empathy than in mixed groups of people.
Restricted/ Repetitive patterns of behaviours
Restricted/ repetitive patterns of behaviour
Often known as an ‘insistence of sameness’ or ‘Dislike’ of change

Need/ preference for routine

Repetitive motor behaviour/ speech

Highly focused areas of interest

Sensory differences

Difficulty understanding cause and effect and predicting what might happen next

Routine can become quite complex

Restricted/ repetitive patterns of behaviour
Always using the same routes to get places

Intense areas of interest

Lack of awareness of personal safety

Wearing the same/ similar clothing all the time

Restricted/ limited diet

Stimming

Echolalia

Change can be difficult to manage and can be anxiety provoking

What is stimming
The word “stimming” refers to self-stimulating behaviors, usually involving repetitive movements or sounds

Stimming can become such a habit that you’re not even aware you’re doing it

Stims can help to relieve and manage anxiety

For most people, stimming is positive as it can help us regulate and show emotions

Some stims can interfere with your quality of life and be disruptive to others

But stimming should only be stopped if the person or others are in danger or if in a dangerous environment
stimming
Lots of stims go unnoticed as many people do them

These can include:

• biting your fingernails • Rocking

• twirling your hair around your fingers • Staring at lights or rotating objects such as ceiling fans
• cracking your knuckles or other joints • Licking, rubbing, or stroking particular types of objects/ materials
• drumming your fingers • Rearranging objects
• tapping your pencil • Repetitive blinking
• jiggling your foot/ leg • Repeating words or phrases
• Whistling • Rubbing the skin or scratching

Sometimes, stimming might be more obvious. This may be because it begins to impact on the world
around us, goes on for longer periods of time, or is something considered unusual or age
inappropriate.
Why does stimming help?
Overstimulation: Stimming can help block out excess sensory input

Under stimulation: Stimming helps provide extra sensory input when needed

Pain reduction: Repeated banging of the head or body actually reduces the overall sensation of pain. One hypothesis is
that stimming causes the release of beta-endorphins in the body, which then causes a feeling of anesthesia or pleasure

Management of emotions: Both positive and negative emotions may trigger a burst of stimming. We’ve all seen physical
reactions to joy or excitement, such as jumping or hand-flapping. Frustration or anger may intensify a stim to the point
that it becomes destructive

Self-regulation: Some stims serve the purpose of soothing or comforting. Many infants learn to suck their thumbs to
relax themselves
sensory
Autistic people are commonly 'hypersensitive' (more sensitive) or 'hyposensitive' (less sensitive) to sensory input.

We can be hypersensitive to one sense and hyposensitive to another, or can experience both in the same sense.

There are 8 main senses:

•Sight (Visual)
•Sound (Auditory
•Smell (Olfactory System)
•Taste (Gustatory System)
•Touch (Tactile System)
•Balance (Vestibular)
•Internal body awareness (Interoception)
• Body awareness (Proprioception)
sensory
Sometimes we experience sensory overload- this happens
when there is too much sensory input

It can feel painful, upsetting and distressing.

What can you do to reduce negative sensory experiences?

Our sensitivity to sensory input can be a positive too - we

can get lots of joy from our senses, and use them to help us
regulate our emotions
Other common traits
The diagnostic criteria talks about differences in social interaction and communication and repetitive behaviours.

But there are lots of other common autistic traits, or things associated with being autistic

• Black and white thinking

• Attachments to objects
• Strong sense of justice
• Executive functions
Things to consider
environment
Autism + environment = outcome
environment
• How loud is the setting? How quiet is it?
• How busy is it?
• Does the person need additional stimulation?
• How bright are the lights?
• How many interruptions are there?
• What has been asked of the person? How many steps are there?
• Is there a way to keep track of time?
• How many tasks is the person juggling?
• Are there any additional expectations?
• Is the environment the cause of the distress/ meltdown?
It’s not just a boy thing
Behaviours are often more internalized within females

Language development is less likely to be delayed

Seemingly fewer restricted/ repetitive behaviours

Girls may be better at reciprocal conversation

May be better at sharing interests and adapting their behaviours to the situation

Autistic females tend to more effectively ‘mask’ their traits

Female friendships can look more like that of other neurotypical females rather than their autistic male
counterparts
It’s not just a boy thing
Autistic females typically begin masking at an earlier age and tend mask more frequently (but males mask too)

This may contribute to lower diagnosis rates and later age of diagnosis

Often highly adept at masking – people may assume that they are fine

Masking is not always a conscious effort – when an autistic person has learnt to mask, it can be difficult to
unmask

A lifetime of masking can make it difficult to recognise their true identity

May appear to be ‘more autistic’ on occasion

Coke bottle kids
For many children and young people a day in education spent masking means
managing and processing:

• Demands/ instructions
• Transitions
• Interactions
• Social norms/ rules
• Environmental concerns – noise, light temperature etc
• Sensory issues – clothing, textures, food etc

So when they get home after another transition and to somewhere they
consider a ‘safe’ place or people, they demask and let it all out.

Like the lid being taken off a coke bottle that’s been shaken all day!
Autism & Anxiety
Anxiety is extremely common for autistic people, this can occur as a result of
trying to live in a world that is not designed for the Autistic brain

All of these things can add to that anxiety:

• Every contact with environmental stimuli
• Social interaction
• Everyday demands
• Change to routine/ plans
• New places/ people/ experiences

There is things that can help such as stimming, taking time out to ‘re-set’ and
using strategies that help and support

But if things go into the bucket faster than can be taken out, this is when
overload can happen including meltdown/ shutdown/ burnout
Mental health
Autism isn’t a mental health condition but it is common for autistic people to have mental health difficulties such as
depression and anxiety, and to struggle with low self esteem and confidence.

• Almost 8 in 10 autistic adults experience a mental health problem

• Autistic people are 9 times more likely to take their own lives than the general population

• Autistic females are 12 times more likely to take their own lives than the general population

Autistica (2019), Lever and Geurts (2016), Tromans, et al. (2018)

Mental health
Mental health can suffer as a result of many things but common causes are:

• Masking
• Feeling judged, facing stigma or discrimination
• Struggling to fit in or make sense of the world
• Struggling socially
• Delays in accessing mental health support
• Getting an inaccurate diagnosis

Lots of autistic people receive their autism diagnosis after struggling with mental health and report improvements
when gaining

• Self knowledge
• Awareness of traits
• Self acceptance
• Accessing appropriate support
General health
So, what are the health implications for autistic people

• Diet
• Digestive issues
• Substance misuse
• Sleep, disturbances/ patterns
• Access to exercise

This is not helped by a general lack of accessing GPs and other support
Employment
16% of autistic people are in full time employment in the UK

In Hull & the East Riding a study of 241 Autistic adults who are eligible to work and who don’t have a learning
disability:
• 5.81% were in full time work
• 7.47% work part time

Which means that in total 13.28% were in paid employment compared to 32% nationally suggesting a big difference in
regional employment rates for autistic people

Another study found that 27.5% of autistic people were earning less the £10,000 a year

Autistica, 2020; Cameron C and Townend A 2021; National Autistic Society 2016
Executive functions
Difficulties in executive functioning are common in autistic people as well as for those with an ADHD diagnosis

They can struggle with:

• organizing and planning

• cognitive flexibility
• working memory
• may be interested in the ‘local detail’ of information, interaction and may not see the bigger picture
• ability to pay attention, may be limited but highly focused

It has been suggested that this may contribute to the social difficulties with reading body language and facial
expressions
Executive functions
Spoon theory
Life can often be exhausting for neurodivergent people, the effort put into activities
can’t always be seen or understood by others
A metaphor Christine Miserandino used to explain what it was like living with lupus
helps us to understand
Lots of neurodivergent people use this metaphor to describe why they experience
burnout and meltdown
Everyone wakes up with a certain number of spoons, or units of energy
All of our daily activities and tasks take up spoons. For some people, some activities
and tasks use more spoons than they would for others
We can borrow spoons from the next day, but this means we start that day with fewer
spoons
When we run out of spoons, we need to replenish them through rest and recharging
Spoon theory
Person 1 Person 2

Today I woke up with 12 spoons: Today I woke up with 20 spoons:

Getting up - 1 spoon Getting up - 0 spoon

Getting showered - 3 spoons Getting showered - 1 spoon
Getting dressed - 2 spoons Getting dressed - 1 spoon
Breakfast - 1 spoon Breakfast - 0 spoon
Work - 2 spoons Work - 2 spoons
Cooking tea - 2 spoons Cooking tea - 1 spoon

I only have 1 spoon left for the evening I can be social, do activities etc

What if something unexpected happens?

Spoon theory
How can this help:

Prioritise
Decide which tasks are essential and which could wait for another time

Ration
Don't waste spoons on unnecessary activities

Borrow
Ask for help when you need it, let people help you

Plan
By planning ahead you can look at when or where you might need your spoons more
Any questions
Do you have any questions about what we have discussed in these
sessions?

This could be:

• Anything we have not covered
• Clarification of information
• Covering something in more details