There are so many misunderstandings about autism and there are many different opinions. Over the past couple of years I have read a significant amount of material, been on courses and spoken to people about autism and I have now pulled together my thoughts on what autism is.
I have been reluctant to list typical traits related to people with autism, because every person with autism is an individual and presents very differently to the next . Having said that I know when the first professional mentioned that my son may be autistic I found all the information very overwhelming, so I want to try and pull together the more helpful information I have found. The last thing I want to do is offend anyone and I would welcome your comments if there is anything unclear or unhelpful here.
So here we go …
Autism in a nutshell
Autistic people are effectively wired up differently to everyone else, they are neurologically different, they think differently and see the world differently. Evidence using MRI scans has shown that there are subtle structural differences in the make up of autistic people’s brains in comparison to those without autism (Lange et al 2010).
Autism is a spectrum condition that affects people very differently- while one person with autism can struggle with loud noises another may enjoy loud noises. Many people on the autistic spectrum have a very visual mind but this is certainly not the case for all, there are many traits that are common amongst people with autism which I will explore below but there are no universal traits.
Autism is not an illness and I personally don’t believe people should be looking to cure it, however it is recognised as a lifelong developmental disability. There is lots of evidence to suggest that early diagnosis and intervention (of the right kind) can make a huge difference to an autistic person reaching their potential. Autistic people have many very positive traits such as a fantastic ability to look at very fine detail, concentrate on a task or do something very repetitive in addition to often very innovative thinking. It is recognised that pretty much all autistic people face difficulties of some kind with social communication, social interaction, rigidity of thinking and sensory processing difficulties.
There is lots of terminology associated with autism and I have tried to get to grips with this in a glossary on my site. Autistic people came up with the term neurotypical to describe those without autism. In addition some people can be offended if told they have autism (seeing it as something given to them or an addition) and prefer to say they are autistic as it is part of who they are.
History of Autism
Historically autism was often referred to as childhood schizophrenia and many people would be institutionalised. In 1943 Leo Kanner described classic autism and in 1944 Hans Asperger published very similar accounts yet with a focus on children with more superior abilities. There is much debate over the relationship between Kanner’s Autism and Aspergers syndrome, both are recognised as having the ‘trio of impairments’ as described by Lorna Wing and Judith Gould (1979).
There has been many changes to how people are diagnosed with autism and what terms are used for the diagnosis. In the UK a move has been made to diagnose people as having an autistic spectrum disorder (ASD) this is an umbrella term that covers all types of autism, it is beginning to be referred to as autistic spectrum condition (ASC) which is more appropriate wording. This has been to avoid labels such as high or low functioning and other historical diagnosis that may not be particularly appropriate. There has been a surge in diagnosis of people with autism but this is likely to be impacted by improvements to diagnosis processes, a broader criteria along with a better understanding and acceptance within society.
Diagnostic terms now included under or replaced by the umbrella of Autistic Spectrum Disorder:
- SPD – Semantic pragmatic disorder
- Asperger Syndrome OR Asperger’s.
- PDA – Pathological Demand Avoidance
- PDD – Pervasive developmental disorders
- PDD–NOS – Pervasive development disorder not otherwise specified.
What is the autistic spectrum?
I often get asked ‘where is your son on the spectrum’ or is he ‘high or low functioning’. Historically people may have defined a person as sitting in a specific place on a spectrum between high and low function but I think people now recognise it is not that simple. An autistic person may be non-verbal in early childhood and later on have no issues with verbal speech.
Wikipedia describes: ‘A spectrum … is a condition that is not limited to a specific set of values but can vary, without steps, across a continuum….autistic spectrum …. uses, values within a spectrum may not be associated with precisely quantifiable numbers or definitions. Such uses imply a broad range of conditions or behaviours grouped together and studied under a single title for ease of discussion.’
Essentially each autistic person is affected differently and sometimes may have additional learning difficulties or conditions such as dyslexia or epilepsy.
What Causes Autism?
I have very little to say on the causes of autism, it has been widely proven that it is not caused by MMR injections, upbringing or Peppa Pig (don’t get me started on that theory it made me very angry). Unfortunately there has been far more focus (with very little outcome) on the causes of autism than there has been on supporting autistic individuals and their families.
It is widely accepted that autism is a genetic condition that may have some environmental factors. Personally I think energy should be focused on understanding autism better than trying to eradicate it, with better understanding I have come to accept my son as an autistic individual. Furthermore the neurodiversity movement is helping society to understand the huge value of people who think differently.
How many people are Autistic?
According to the National Autistic Society 700,000 people are on the autistic spectrum in the UK. Whilst there is no official count of people with autism this is a well-recognised figure and if anything is likely to be conservative. This figure represents more than 1% of the population in the UK, to give you some context 2% of the population aged 16 and over identified themselves as lesbian, gay or bisexual (ONS 2016) and 0.5% of the population are Jewish (Pew research centre 2010).
Close to 50% of people with autism have a learning disability and around a third of people with learning disabilities have autism.
More men are diagnosed as autistic than women, this is more likely due to diagnostic measures being based on males. It seems that women with autism can present very differently to men and have a much better ability to hide social impairments, and as such are likely under represented in diagnosed individuals.
In Bath and North East Somerset where I live, the estimate is that 1 in every 89 people are on the autistic spectrum.
Is Autism a Disability?
‘You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.’ (gov.uk)
Autistic individuals are different to the majority of people and therefore find it hard to fit into a society set up for neurotypical people. Autistic people can find very basic tasks for most people impossible or incredibly difficult and as such are substantially impaired by normal daily activities.
When my son was first diagnosed we were told to apply for DLA (Disability living allowance), if I’m honest I was very uncomfortable with this. Why was I uncomfortable? Well I thought I was doing that same as most parents with young children and although some things are difficult to manage, your average toddler is particularly difficult at times. I now realise that this benefit is there to support those with additional needs and help to improve things. The additional costs I have related to my autistic 4 year old:
- His specialist pre-school is 7.8 miles away so we have to drive there are back twice a day three times a week, this is so that he can receive music therapy, speech and language therapy and specialist teaching.
- I have numerous meetings, appointments and therapies, specialist play groups to attend on a regular basis – most at least 6-10 miles from home so I spend lots more on petrol. This also makes it hard to hold down a full time job for me and I work part time in the evenings instead.
- I have had to pay for training, therapy and courses to support my son. This is not cheap an hour with a therapist can be between £50-£200, courses are often upwards of £100 for a day, that’s not mentioning the cost of childcare and transport.
- I have had to buy a laminator, communication books, lots and lots of Velcro / laminating pockets and the amount of printing I have to do all so that I can communicate with my son visually is enormous.
They are all small things individually but when you add it up there is significant financial impact, the amount we receive in DLA barely even covers my additional weekly petrol costs.
Autistic traits / behaviours
As previously mentioned it is accepted that autistic individuals are effected by a triad of impairments as identified by Lorna Wing, these are:
- Social interaction
- Social communication
- Rigidity of thinking
It is also now recognised that sensory processing should sit alongside the trio.
Below are some behaviours / difficulties that autistic individuals have, however please remember that this will be different for every individual.
Social issue can include:
- Difficulty understanding social rules and conventions and can even seem totally unaware they exist. Can be seen as a lack of common sense.
- Can relate more to objects than people
- Can find it difficult around people they don’t know well
- May not want comfort – natural instincts to comfort may be wrong
- May see people as means to get something
- Can have inappropriate behaviour often due to a lack of understanding
- Empathy can be difficult
- May struggle to predict others behaviour
- Difficulty forming friendships, how to do small talk
- Not understanding others feelings and emotions and sometimes struggling to read their own emotions.
Social rules are usually just absorbed by kids but this needs to be taught to autistic individuals and will become a learnt behaviour rather than natural. Young autistic children will often ignore other children and seem as though they are not aware of them, by playing alongside and using narrative of what they are doing we can begin to teach social rules / norms. Things that often need to be taught include: how to share, tolerance of others, turn taking, waiting and how to make friends.
Some autistic individuals are non-verbal and others have exceptional language early on, however most people with autism have some form of difficulty with language be it speech or comprehension. Communication issues include:
- Can have no or limited verbal speech / this does not mean they have a lack of understanding or ability to communicate just they do not use speech to communicate. Many autistic children take much longer to speak than their peers.
- Can have very good speech and very early but may lack understanding of the language used.
- Can struggle with words that have more than one meaning for example meet and meat, flower and flour.
- May be a very literal thinker and therefore struggle with sarcasm, jokes and meaning.
- Can have Echolalia where they repeat what is said or repeat language / verses.
- Can use words incorrectly or out of context
- Can not respond when spoken to
- Particularly in young children words can be used then seem to be lost (regression of speech)
- Struggle with social communication – eye contact, body language, tone of voice, gestures.
- Can have a lack of ability for shared experience – e.g. understand someone pointing to something and both sharing the experience of seeing something.
Speech and language support and time can help with much of these issue and again will often need to be taught to autistic people, many may also use alternative methods of communication such as Picture exchange communication (PECs). Visual confirmation of things is often very useful. The use of consistent language is important, if a question is rephrased rather than repeated it can be seen as a new instruction and can cause confusion / delay. Some autistic individuals need a long (much longer than feels natural to most) processing time for language, this can mean a conversation has moved on before an individual has been able to process it or reply.
Practising turn taking and understanding the importance of a listeners needs are good skills to be taught. Be clear with language and your meaning, subtle hints will not necessarily be picked up. If asking a question try to be clear what you are asking and avoid broad open questions. Also some autistic people find it very difficult or even impossible to look at a person and listen at the same time – just because someone is not looking at you does not mean they are not listening.
Rigidity of thinking can mean:
- Can become distressed when routine changes or expectations not met. Finds security in routine and relies on them.
- Can struggle with imaginative / pretend play
- Can resist new things, hard to deal with new situations
- Can get stuck in repetitive behaviour
- Problems with generalisation
- Can struggle with attention
- Can get lost in detail that others may see as irrelevant, can be described as not seeing the bigger picture.
- Theory of mind can be an issue – for example may not see others points of view or even understand that people have different thoughts.
Again much of this needs to be taught, for example teaching a young autistic child how to play. Ensuring you have clarity. Visual aids, social stories and routines can all be helpful.
Many negative behaviours can be a direct result of the above and an inability to communicate needs, wants and or emotions effectively. Common issues include:
- Meltdowns – extreme behaviour
- Physical harm to themselves or others i.e. biting, hitting, running away, head banging.
- Poor danger awareness
- Anxiety – often builds up
- Dietary issues
- Sleep problems
As you get to know an individual and their needs or things that may trigger behaviour it is much easier to be pre-emptive to avoid negative behaviours. It can sometimes be very difficult to identify triggers and understand root causes of behaviour but taking the time to do so makes a huge difference in the long run. Is the behaviour to avoid or escape something, a lack of understanding or anxiety?
I plan to look at sensory processing in more depth at a later date but most autistic individuals have some form of sensory processing issues. Some will be hypersensitive to things like touch, sound, taste, light or smell, whilst others can be under-sensitive to the same things and actually seek out sensory input from their environment. An individual can also switch between being hypersensitive and under-sensitive.
It is good to be aware that individuals may have a lack of awareness of pain or temperature. There can also be issues around spatial awareness, balance (vestibular), body awareness (preopeoception). Sensory processing is where the Occupational Therapists (OT) come in, This is a therapy to assess and assist people to carry out everyday activities that are essential to health and wellbeing which they may otherwise find difficult. In the case of autism OTs may focus on fine motor and daily living skills to help create independence for that individual.
Stimming (or stim) is a typical behaviour in autistic people. Self stimulating behaviour, usually the repetition of sounds or physical movement. It is someone doing something to give themselves sensory input. There are many different types of stimming and many reasons for why people stim. Examples of stimming include:
- Flapping hands
- Making loud noises
There are many techniques from physical therapies and occupational therapy to messy play that can assist with sensory processing.
Alongside the negative behaviours there are some amazing abilities that many autistic people have, for example
- Great ability to focus and concentrate for long periods of time
- Some have talents for facts or figures
- Visual thinking
- Being very direct / frank honest with language can be a positive as well as negative issue
- Sometimes only need to see something once to fully understand it, very different ways of learning.
Many autistic individuals have special interests (can be seen as obsessions) if developed and encouraged this can lead to great expertise in specialist subjects.
I could go on and on as autistic individuals are as diverse as everyone else but hopefully some of the above can help you to understand autism a bit more. The most reliable and informative place I can advise you to go for more information on autism is the National Autistic Society.
If someone in your life is autistic get to know them personally, make sure you listen and pay attention to them – it is likely they will approach things differently but getting to know them is the best way to understand their needs. Steve Silberman rightfully points out that ‘above all, society needs to listen to the views of people with autism… that’s how the really big shifts for other minorities came about… Gay people for example’ . It has been said many times but every autistic individual is different, simply being aware of peoples differences being kind and accepting of this goes a long way.
Finally I am going to leave you with some great quotes about autism or from autistic people.
‘Autism is part of who I am’ Dr Temple Grandin
‘There needs to be a lot more emphasis on what a child can do instead of what he cannot do’ Dr Temple Grandin
‘We need to understand autistic people better, not try to change who they are.’ Chris Packham
‘As soon as children find something that interests them they lose instability and learn to concentrate’ Dr Maria Montessori
‘If you’ve met one person with autism, you’ve met one person with autism’ Dr Stephen Shore
‘I don’t really understand why it’s considered normal to stare at someone’s eyeballs’ John Elder Robinson
‘The most interesting people you’ll find are ones that don’t fit into your average cardboard box, they’ll make what they need, they’ll make their own boxes’ Dr Temple Grandin
‘When I was small, I didn’t even know that I was a kid with special needs. How did I find out? By other people telling me that I was different from everyone else, and that this was a problem,’ Naoki Higashida
‘Instead of seeing the children in his care as flawed, broken, or sick, he believed they were suffering from neglect by a culture that had failed to provide them with teaching methods suited to their individual styles of learning.’ Steve Silberman