What is Autism?

What Is Autism:

Up until recently, the definition of autism, a medical condition, diagnosed by medical practitioners was the only lens though which the neurology was understood. A medical specialist’s role is to discover what is wrong with people and hopefully to try and fix or ease any symptoms. So autism was defined as a disorder – currently called Autism Spectrum Disorder (ASD) in the medical manuals. However, there are no medical tests for autism, and it has only been described from the outside, by how these specialists observed autistic people to behave.

While the definition of autism has changed over the years, two main areas were considered “disordered” in the manuals so to be assessed as autistic, people still need to show the assessing team that they have:

Persistent deficits in each of three areas of social communication and interaction
Restricted, repetitive patterns of behaviour, interests, or activities (DSM, 2013)
(Hyper- or hypo reactivity to sensory input or unusual interest in sensory aspects of the environment is currently included in the category of “Restricted, repetitive patterns of behaviour.”

As the only way autism was described was by the person’s behaviour, specialists thought that by teaching autistic people to behave differently, that would be the end of their autism. Certainlys some autistic people did learn different behaviour, but they are still autistic.

We now understand that autistic people have a different neurology. Autistic brains operate differently in the first place. We don’t know why this is though there are some theories around this. But we do know that (neurodiversity- link) is a fact – the world is made up of all kinds of minds.

So knowing that autistic people have a different neurology, families and schools can support autistic young people to thrive by learning about and supporting the differences an autistic brain brings.

Thanks to dedicated parents, teachers, researchers, but especially to the inclusion of autistic people in the discourse, we are reaching a better understanding of autism, and neurological differences generally.

So let’s look at some of the differences you might expect to find in autistic people.

Sensory Processing Differences

Everything we notice in the world arrives through our senses, or our memory of sensation, and so each and every environment is a sensory environment.

No two people experience the world in exactly the same way. What we perceive in our environment is different from person to person. For example some autistic people can hear electricity, or have a heightened sense of smell. Or when completely absorbed in an activity a person may be oblivious to environmental sensations. Differing sensory responses are part of neurodiversity.

There are the five senses we learn about in school- hearing, seeing, tasting, touching, smelling.

Other senses are also important- such as proprioception (the body’s ability to sense movement, action and location), vestibular (balance) and interoception (internal body sensations e.g. need for toilet, hunger, tiredness etc.)

Autistic people’s senses tend to operate differently to what is typically expected, feeling certain sensations more strongly than others, some more weakly or some not at all. At its best this can lead to some environments being experienced as incredibly joyful, and to great creativity. (e.g. Diary of a Young Naturalist, Dara McAnulty). At worst, it can mean some environments are completely intolerable and exhausting.

How anyone experiences sensations can change throughout their lives, even during the one day. If a person’s emotions are heightened, their sensory experience is likely to be heightened too.

How to support sensory experiences:

It’s helpful for each autistic person to have an individualised sensory profile, noting their responses to various stimuli, any input they like or dislike and when that might happen.

The profile can list what raises or reduces the person’s energy and thus attention levels. This helps the person to regulate throughout the day. Regulation means having a body and mind that are in the right state for whatever activity is happening- e.g. listening, running, sleeping, even escaping a lion!

www.autismlevelup.com has resources for creating an individual profile with personal regulation strategies. Another example is listed in the resources below.

The Interoception Curriculum is a resource to learn more about out our internal body states. This in turn helps with understanding our “gut feelings” about our emotions. It can assist students with alexithymia. https://www.kelly-mahler.com/what-is-interoception.

Middletown Centre for Autism run frequent live and online training courses on Sensory Processing in Autism.

It’s important to support autistic children to understand and work with their sensory profile and to develop as much independence as possible with this self-understanding. It can be very helpful for busy parents and teachers to know their own regulation state too!

Sensory breaks should never be used as a reward – they are an accommodation related to individual needs that are necessary to help a child get through the school day.

Autistic people often find their own unique ways to regulate their system. They may move their bodies, make sounds, listen to or watch things in a repetitive way. This is called “stimming”. Its important to understand and learn to respond to respectfully to each child’s individual stims and personal “stim language”.

Autistic people need access to their stim items– e.g. headphones to reduce noise when moving class, frequent movement breaks, or fidgets at their desk. Certain times, such as the start of a new term, or coming to end of term when people are more tired, can cause autistic people to need their stims and regulatory routines more than usual.

The medical system places such regulatory movements in the category of “Restrictive Repetitive Behaviours”, thus turning something that can be very helpful for the autistic person, into a negative.

Of course if “stims” harm the autistic person or others, then alternatives that have similar regulatory effects need to be found.

Point to remember

The availability of sensory supports that meet individual needs is a necessary accommodation to enable children to access education and everyday life to the best of their ability.

Some useful resources:

Short video: Chris Packham talks to Luke Beardon:

https://padlet.com/redirect?url=https%3A%2F%2Fyoutu.be%2F-1aTVfKstrs

Ideas for Sensory Products:

Cheap Sensory Products You Might Already Have – Autism Chrysalis

Interoception Curriculum:

https://www.kelly-mahler.com/

Katie Kerley- Sensory Processing:

https://www.youtube.com/watch?v=v-YKwfNFNEQ

Workbook to create an individualised sensory kit: https://padlet.com/spectrumgaming/epic-autism-resources-e9k3m18miqwgiy1w/wish/2413548864

Interoception webinar:

Free Webinar: Interoception and Co-regulation With Kelly Mahler & Rachael Thompson – YouTube

Communication Differences

Communication is the imparting or exchanging of information by speaking, writing, body movement or using some other medium.
Part of the medical definition of autism includes differences in social communication.
Statistics vary widely, but some research shows that roughly 25-30% of autistic children are non-speaking. Autistic adults describe losing the ability to speak when stressed, exhausted, burnt out or very anxious. (http://www.selectivemutism.org.uk/)
Likewise, the ability to understand communication, whether visual, written, spoken, or some other means, varies among autistic individuals. People who do not speak and do not understand what is said to them may be described as non-verbal. People who do not speak but can understand some, or all speech, are described as non-speaking.
Even among speaking autistic people, there are differences from non-autistic communication in areas such as topic choice, conversational flow, intonation, body language (e.g. eye contact) that non-autistic others may not understand or appreciate.
Therefore, it is important to learn how each individual autistic person communicates and to support their right to access effective communication.
The UN Convention On The Rights Of Persons With Disabilities (CRPD) Article 21 states that “Parties shall take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice”.

Supporting Communication:

Possible modes of communication to consider include

Spoken
Text
Speech-to-text and text-to-speech
Use of objects
Use of photos
Use of pictures
Use of symbols
Body language
Sign language
Assistive technology device (AAC)

When introducing new forms of communication it is very important to respect the child’s existing repertoire.

The way in which autistic people learn language in the first place is different to non-autistic learners. They tend to repeat key words and phrases which have meaning to them, before breaking them into words and grammar and this needs to be considered in any program to develop communication
There are programmes – often social-skills programmes designed to teach autistic people to imitate non-autistic communication styles and to mask their natural style. The use of such communication or social skills training needs to be considered very carefully. By undermining an individual’s natural way of being and encouraging them to copy what they don’t fully understand, mental distress and great damage to self-esteem can be caused.
Remember autistic people will always be autistic, although they may learn to mask and to mimic non-autistic communication expectations. However, this is a performance, not natural, and so uses up a lot of energy.
Autistic people’s conversation tends to centre around interests. Linking students with similar interests, topic tables at breaktimes or asking the students to create presentations around their interests all encourage the development of communication.
Lightning talks- where students give short presentations on topics of interest can be used to develop many communication skills- summarising, gauging interests, listening to others, asking and responding to questions etc.
Middletown Centre for Autism offer various training modules to help with understanding and developing autistic communication.

Point to remember

All forms of communication are valid and worth exploring. Find out the way(s) the autistic person in your life communicates and use that to connect with them and expand interaction.

Some useful research and resources:

An older autistic adult explaining how they learned about communication: http://annsautism.blogspot.com/search?q=communication

What Do New Findings About Social Interaction in Autistic Adults Mean for Neurodevelopmental Research?

Research into Communication

Research into eye tracking and autism:

Eye-tracking reveals agency in assisted autistic communication

https//asiam.ie/wp-content/uploads/2023/05/Autism-Tenn-resource-digital.pdf

https://www.autism.org.uk/advice-and-guidance

Social Differences:

Autistic people can stand out for appearing different to others, sometimes in obvious ways like stimming with the body or not making eye contact, sometimes in more subtle ways that can cause other people to feel uneasy although neither party can pinpoint why!
Generally autistic people were considered faulty for these differences and non-autistic people thought it valuable to teach autistic people to appear more non-autistic.
Although autistic mannerisms, interactions and reasons for their actions don’t always make sense to non-autistic others, mutual incomprehension works both ways. This is known as the double empathy gap.
As autistic people are in a minority, a lot of time is spent working out what is going on around them. Non-autistic people generally seem to pick up on social nuance much more easily. This uses up energy and may lead to the autistic person masking themselves and their needs to fit in.
Sometimes explaining what is going on can be supportive for the autistic person; and sometimes autistic people may want to know the accepted social norms for behaviour- e.g to order a burger, to ask for a break, to go dating.
There are many resources and skills programs that explain non-autistic behaviour to autistic people. Choosing programs that will respect the autistic person’s neurology while also developing their skills is not easy. Care must be taken to ensure the person’s self-esteem is not harmed. The best programs are informative, work with the person’s neurology and help the person to self-advocate for their needs.

Supporting social differences:

Consider the reasons for the person’s social differences and provide training to support those differences
Sensory Regulation Differences Autism Level Up allows for recognition of regulation differences and the creation of an individualise program to help the person’s state match their activity
Choose social activities enjoyed by the person – they may be more motivated to interact with others around such activities.
Choose activities that match the person’s energy-if they need a lot of movement or heavy pressure, then interacting in a gym or during a walk may be helpful.
The person may find some people’s perfume or tone of voice to be intolerable.
Boredom
Autistic people are generally not interested in “chit chat”. They may not be interested in the latest trends for people their age.
Letting the person choose the activity is important

Not knowing the “rules of engagement”

Pr0vide advance information of what situations will look like – videos, photos, or written information. Discuss what others might do and how the person might respond.
Roleplay different scenarios
Teach about neurodiversity and acceptance of all kinds of minds including autistic ones.
Use activities of interest to teach double empathy – pointing out what the autistic child is enjoying or not, and likewise the other children, and non-judgementally arriving at compromises.
Teach “rules” of sharing, back and forth in conversation, team roles via activities of interest.

Point to remember:

Autistic people generally like to socialise. It may look different to what is typically expected. Socialisation in ways that don’t come naturally can be exhausting all round!

Useful resources:

“I never realised everybody felt as happy as I do when I am around autistic people!” : A thematic analysis of autistic adults’ relationships with autistic and neurotypical friends and family.

Research article:

Autistic Relationships

Autistic relationships Research as a video

Double empathy:

Dr Damian Milton Double Empathy

Rethinking ‘social skills’

Attention and Focussing Differences

For all of us, attention is a limited resource. Autistic people tend to devote all their attention to one or a few things at a time. This means that autistic people tend to be focussed thinkers. Non-autistic people’s attention can spread more widely, but also more thinly. So non-autistic people tend to be more general thinkers.
Some people consider that autistic focussed attention is the defining feature of being autistic- the thing that distinguishes autistic people from others. This use of focussed attention is called monotropism.
The theory of monotropism was defined by non- medical autistic scholars and has continued to be refined over the years. If we consider that autism is defined by focussed attention it explains a lot about autistic people

Social differences
Sensory differences
Inertia or difficulty stopping, starting or changing task
Intense interests

Autistic intense interests can be experienced in a deep and compelling way. Sometimes people can consider that autism in academically bright people is completely different to autism in people with learning difficulties. However, monotropic thinking, taking in the world through intense interests is what seems to be common to all autistic people.
The intense flow that autistic people can feel when absorbed in their interests is a quality of autism that non-autistic people can find difficult to appreciate.

Supporting Attention in Autism:

Social differences and sensory differences are discussed elsewhere. Inertia is tied in with Executive Functioning differences. So below, we consider the use of intense interests to support attention.
As a monotropic thinker, an autistic student’s concept base is completely tied up in what they pay attention to and their interests. So its really important for teachers to know the student’s interests and to relate it to their teaching. Otherwise the student may have no means to connect to the topic being presented.
Allowing students time to enjoy their interests in break times
Teaching through special interests (though take care not to kill the interest)
Using the students interests on timetables, worksheets, task schedules.
Having topic tables at breaktimes so students can choose to sit where the conversation will be of interest.
Using regulation breaks, individualised by activity and by scheduling as needed by the student so that attention can be maximised.
Arranging for presentation of interests to the class as an individual presentation or in “Lightning Talks”. This may also provide opportunities for supporting communication across neurotypes.

Point to Remember:

The world needs all kinds of minds, but our school system is set up for generalists and not specialists. We need to nurture specialist minds too!

Resources:

Monotropism:

www.monotropism.org

Monotropism Research

“Attention, Monotropism and the Diagnostic Criteria for Autism”

Attention and Monotropism Research

Executive Functioning Differences:

Introduction to Executive Functioning:

Executive functions are all the skills needed to get things done e.g. planning, scheduling, organising, handling change.
They involve mental skills such as working memory, flexible thinking and self-control.
While autistic people can often have advantages in areas such as flexible thinking in areas of interest and creative problem solving, in general executive functioning skills can need additional support.
We need executive functioning skills for many aspects of school and everyday life. Problems can lead to difficulties in areas such as
Paying attention
Organising, planning & prioritising
Starting tasks and staying focussed on them to completion
Understanding different points of view
Regulating emotions
Self- monitoring (keeping track of what you are doing)
Time management
Remembering what is to be done.

How to support Executive Functioning:

Care needs to be taken when planning support for autistic people. For example, everybody’s emotions can be dysregulated when they are under extreme stress- so it is important to check areas such as sensory and communication needs before assuming someone has a problem with emotional regulation.
Visual supports for timetabling and for task sequencing can be helpful for students to know what is expected.
The use of TEACCH structures to arrange areas in both classrooms and home can help with whole class organisation and clarity of structure.
Most aids for executive functioning can be helpful to everyone in a classroom, including the teaching staff! It can be useful to train students to create their own schedules and structures based on their individual talents and needs.

Point to Remember:

Most supports for executive function are to compensate for brain differences, not to teach the skill. They may change as the person develops but they are likely to always be needed

Some useful resources:

Support with Executive functioning:

Executive Function Supports

Teaching Strategies

Learning Differences:

Introduction to Learning Differences:

Autistic people can have both learning differences and learning disabilities though there is overlap between both categories.
Learning disabilities are usually identified by psychological testing
If someone’s intellectual and social ability is below the norm for their age then they may have a General Learning Disability(GLD). However testing is culturally based, for example, the norms have never been set for distinct groups such as Travellers or Autistic people. So information from those who know the person is also needed to ascertain their true ability.
Autistic people don’t often see the importance of doing their best at tests unless the topic is of particular interest. They may also tire easily, be put out by an unfamiliar environment or different way of presenting information. So psychological tests can often underestimate an autistic person’s learning ability.
Autistic people often have “spiky profiles”. In general, in psychology tests, people tested have roughly the same results across all subtests. Autistic people tend to have very varied results across the tests. While this makes it harder to determine the person’s overall learning level, it shows which are the person’s strongest areas which can be useful when teaching them. This is where the explanations and recommendations provided by the testing psychologist can be helpful.
GLD is divided into categories- Borderline Mild General Learning Disability, Mild General Learning Disability, Moderate General Learning Disability and Severe/Profound Learning Disability. How these categories are divided is different between the UK and Ireland. So assessment reports from the opposite jurisdiction need to be read with care.
When one area of a student’s ability doesn’t match what would be expected given their overall ability, then they may be assessed as having a Specific Learning Disability. For example a student with a reading ability below their overall learning ability might be classed as having dyslexia.
It’s not known how many autistic people also have GLD. Ratios vary from 40-60%. This is likely to be an over-estimate as the assessment of autism is increasing while the assessment of learning disabilities is not.
As the definition and understanding of autism is evolving, a clearer picture is emerging of learning differences in most, if not all, autistic people
Attention differences
Sensory differences
Executive functioning differences
Gaps in knowledge: Often autistic people miss the “hidden curriculum”, the assumptions, social rules, generalisations of themes that come automatically to others. Therefore, explicit teaching and explanations are often needed.
Answering questions: many autistic people do not perform well on tests even though their teachers and families know they have the information. The person may not do well due to anxiety but they may also struggle to know exactly what is being asked of them. Practice identifying main points, summarising, putting together an essay, analysing the meaning of marking schemes, working through rubrics, time management will all need to be explicitly taught.
Autistic people tend to focus keenly on certain topics and are likely to have formed most of their concept bases around the topics that attract their attention – be it something as complex and detailed as Egyptology or as seemingly simple as shiny things. It’s important to creatively use the topics that interest the person when teaching them, otherwise they may not have any idea about where the subject might fit into their lives.

Some useful resources:

Autism and Learning Differences:

https://www.autistica.org.uk/what-is-autism/signs-and-symptoms/learning-disability-and-autism

General Resources:

Spectrum Gaming Padlet:

Padlet

Ideas for Teachers :

https://www.youtube.com/playlist?list=PLi1RQR58BHnW5LtJfD0Ph-RIH7EhnrP3t

What is autism?

About Autism – Autistic Self Advocacy Network

Talking About Autism:

https://captapnetwork.wordpress.com/