Autism Training Is Important
This is a long article, but I hope helps service managers and commissioners recognise the importance of autism training for their teams. I also hope it shows the passion I have for improving the lives of autistic people, which is the reason I started my business
I have outlined my views on the range of difficulties that can arise when staff are not trained. It is not at all meant as a criticism, people enter supportive and caring professions because they want to support and care. The point I want to make is that without understanding, the support that is provided may be not appropriate.
Anxiety, frustration, despair…these are some of the feelings experienced by staff working with autistic people.
Why do people feel this way? Why do many people who support autistic people find it so stressful?
Of course, just like some non autistic people, some autistic people have complex needs and supporting them can be challenging. But often much of the anxiety and frustration comes from not understanding autism, and attempting to support an autistic person in a neurotypical way.
Many staff have not been appropriately trained to understand and support autistic people, there is a service assumption that support needs are the same. This is frequently not true.
Being supported by somebody who does not understand causes the autistic person to also feel anxiety, frustration and despair, often leaving them with distress that lasts a lifetime.
Poor understanding causes difficulties for staff and the autistic people they support. Autism understanding is essential.
Recognising and Admiring Strengths
A long time ago, I was part of a team in an inpatient unit. We had a 5 year old autistic boy with us, who had complex difficulties and was extremely anxious. I remember him as if it were yesterday. He was non-verbal, and spent a large proportion of his time stimming and his anxiety was very high. With many sensory issues, and severe communication problems he often became aggressive to his parents, siblings and staff. We all understood he was distressed, but with no social interest we were struggling to find a meaningful way to help him. As a team, over many weeks we tried many activities in the hope of sparking an interest. We did find a film he enjoyed, I watched it so many times I swear I can still remember the script! One day, we made a request and he ran away down the corridor. There was a therapy ball laying about, he jumped on it and proceeded to walk on it all the way down the corridor. We had never seen anything like it, his balance was unbelievable. And in that moment we saw his gift, found a gymnastics club and he went from strength to strength. For the first time in his life, he found something he enjoyed and was good at. He was in the zone. His anxiety decreased dramatically and shortly after speech began to develop.
The moral of this story? Sometimes what we perceive as difficulties are actually strengths. The young boy had huge sensory processing issues, and whilst his acute hearing often led to aggressive outbursts, his strengths actually lay within these sensory processing issues. His proprioceptive and vestibular senses were so acute, his ability to move and balance were astounding.
Without a proper understanding of autism, it is very difficult to see strengths. As with every person, strengths need to be nurtured, not criticised and diminished. You see for the person who hasn’t received training in autism, or who understand autism as a list of difficulties and impairments, their focus remains on ‘difficulties’. They may perceive an autistic person as a neurotypical person with extra difficulties, and are clouded by this perception.
A commonly described characteristic of autistic people is that of ‘making comments without realising they are socially inappropriate’. This describes things like asking someone why they are fat, or telling someone they have a spot on their face. (Now, I won’t go into the complexities of understanding the concept of social appropriateness and why autistic people often find the concept illogical and frustrating here, that’s what training is for). On the simplest level, comments like this cause offence because staff don’t understand autism. They may perceive them as intentionally rude, or said with vengeance, and this causes resentment. Flipping this characteristic from a difficulty to a strength gives us a new perception. We might call it ‘honesty’, but only if we understand it’s not being said with the intention of offending.
Without understanding, we see deficits, impairments and difficulties. With understanding we see strengths and difficulties, the same as we see with neurotypical people – just in a different way. In supporting autistic children and adults to reach independence and achieve their potential, it is essential that we understand and nurture strengths.
Without an appropriate understanding, there cannot be acceptance. Without understanding and acceptance, staff will instinctively interact with autistic people as if they have a typical neurology (i.e. are neurotypical).
Autism is not ‘being neurotypical with a few added difficulties’. This is very difficult for neurotypical people to understand.
Autism is not something that comes and goes, it is not an ‘add on’ or something that is switched on or off.
Autistic people have a different neurology, perceiving, processing and interacting with information in a different way to those with a typical neurology.
Some autistic people need lots of support, others merely need understanding and acceptance and to be allowed to be their brilliant selves.
When supporting autistic children or adults, the desire to care is nowhere near enough. To be able to help, you have to understand autism.
We don’t know what we don’t know. This old adage is particularly significant when thinking about supporting autistic people. Staff may have read something about autism, or shadowed other people. They often think they know, and don’t realise they misunderstand or are still working from a neurotypical standpoint. Without appropriate autism training, how will they ever know?
It matters, it really matters. It matters because providing the wrong support has two possible outcomes, either it simply does nothing to help or it causes issues that can last a lifetime.
This lack of understanding does not just impact the autistic person of course. To return to where I started, it causes anxiety, frustration and despair for staff too. Investing in autism training not only helps to improve the lives of autistic people but improves the working lives of staff, improves service reputation and increases staff retention. Stressed staff avoid or leave; training can break this cycle.
Autistic children, young people and adults need to access services. How can staff in these services provide an appropriate response when they haven’t received appropriate autism training?
Service Effectiveness and Efficiency
Autism understanding and acceptance can improve service efficiency drastically. Without proper autism training, staff are not going to be able to provide the support autistic people need in an effective manner. ‘Trial and error’ is time consuming, and not pleasant for the autistic person. Proper training means that the right information, advice or support can be delivered from the start, reducing staff time. Of course, there can be larger consequences for not delivering support in an efficient manner. Problems may escalate, distress can increase and the autistic person who could have initially been supported at a low level now needs high levels of support. Maybe because they weren’t supported or maybe because the support they were given has increased their problems rather than helping them.
Let us take a 4 year old autistic girl who starts mainstream nursery as an example. Nursery is a big challenge for her, made worse because the staff don’t understand autism. The girl is anxious, and struggles to understand her environment. Staff think they know about autism, they provide extra instruction around tasks, but they still expect her to complete the same tasks as her peers. The girl becomes very distressed, she can’t do the things they expect her to do. She becomes frustrated, hits out and shouts. Staff decide to use a sticker reward system to encourage her to comply. They don’t understand a) that the social reward of stickers has no motivation for her and b) she can’t do the task so will never earn the sticker.
After 6 months of distress and very few stickers, the school decides they have tried everything they can and that the girl obviously needs special support. The girl is eventually moved to a special unit 12 miles away, it takes months to settle in because school has been such a distressing experience for her.
In this case, the staff wanted to help – but they weren’t trained to support an autistic child. They therefore tried to help the girl in the same way they would help a child with typical neurology. They didn’t know what they didn’t know. There were significant emotional and financial implications as a result.
Nobody likes failing. Nobody likes failing at work. So many staff are placed in position where failure is the only option because they simply have not been trained to be successful when working with autistic people. When well intentioned attempts at providing support or fixing a problem are met with failure or even hostility, staff become frustrated, disheartened and anxious about their jobs. Disheartened staff are not productive. Frustration and anxiety lead to stress, which in turn causes work absences or even resignation.
Autism training can help staff provide more efficient support, and but can also ensure more effective service models. There are many barriers to accessing services, and these are well documented. Whilst dubious eligibility criteria and gaps in provision is certainly one of the biggest barriers, other barriers are created from the way in which services deliver their support.
I will reiterate that if support can not be accessed at a lower level, problems will likely escalate leading to increased support needs and unnecessary distress for the autistic person.
In many cases, the people who commission, develop or manage services accessed by autistic people have had very little training or experience in the field of autism. How can effective services be developed if autism is not understood?
Understanding autism can help make services more accessible, small changes can make a big difference for all.
Appointment letters that are unclear, confusing or have lengthy ‘ifs and buts’ may not be understood or disregarded. This will result in high numbers of missed appointments and help not being received. Telephone lines that have multiple options and answer services are not helpful, this prevents people making or changing appointments.
An autistic person is 5 times more likely to have social anxiety than a neurotypical person. This is highly significant when thinking about developing service models, and decreasing barriers. We may ask whether a telephone advice line or drop in clinic really is helpful for a population with such high levels of social anxiety? There are far more efficient, autism friendly ways of providing support if we can move away from a neurotypical way of thinking.
The assessment and diagnosis process can be streamlined with a greater understanding within primary care providers, but I will come to this later.
Many autistic people have experienced difficulties with others recognising that they are autistic, whether it is getting a diagnosis or having their diagnosis accepted. There are historical issues with diagnostic assessment services for children and adults, either they are not available or services are backlogged with referrals leading to long waiting lists. These issues are being addressed in many areas, but what happens before that referral is made?
For many, the journey to that referral stage is a huge battle because the staff who need to refer for assessment aren’t trained in recognising and supporting autistic people.
The DSM V provides us with an outline of the characteristics that must be observed in order for an autism diagnosis to be made. Those of us who have worked in clinical environments are more than aware of these, however it is not a book that is on most people’s reading list.
How do frontline professionals recognise autism if they haven’t been trained to do so?.
What is autism?…type the question into a search engine and you will be greeted by pages upon pages of associated impairments, lists of symptoms and platitudes.
A description of autism as a condition is necessary to align the diagnostic process and ensure that the correct diagnosis is made. Autism has a set of core characteristics or differences, but the observable behaviours seen as a result can be wide ranging. They may be obvious, or they may be difficult to see and even purposefully hidden.
Without training, staff either have no understanding or autism or a misunderstanding stemming from viewing autism as a ‘check list of symptoms’. The knock on effect….autism remains hidden, people are not referred for assessment and more significantly aren’t supported or are incorrectly supported.
Autism training can help staff to recognise the various ways autism can present, and understand that some (especially females) ‘mask’ their symptoms by copying others. Let’s look at a checklist characteristic ‘Restricted, repetitive patterns of activities’. For one person this may mean engaging in the same activity over and over again throughout the day, and severe distress if stopped from doing so.
For another person it may mean undertaking a range of activities when others suggest or request, but when they have the choice they choose to do the same thing. The first presentation is easy to see, the second less so, especially if the activity is something ‘usual’.
Without training and understanding staff may question whether the first person is autistic but disregard any possibility of the second person because they ‘appear’ to be engaging in a variety of activities.
With this in mind, staff members may refer the first person for assessment and not the second. They may realise that the first person needs adapted support but not the second. They may assume the first person is experiencing difficulties and the second is not. This is likely to be untrue.
Conversely, many of the characteristics of autism can be observed in neurotypical children and adults. A child who insists on having things done their way, isn’t necessarily autistic. An adult who finds social interaction difficult isn’t necessarily autistic. Greater understanding can ensure that people who need to be assessed for autism are, and those who aren’t receive different support. This will in turn reduce waiting lists because it will eliminate unnecessary referrals.
In fact, if staff and services were able to recognise and respond appropriately to autistic children and adults the urgency for diagnosis would be hugely decreased. Of course, having that formal diagnosis is still important if wanted . It is important for identity and self understanding to many, and can be the key to additional support in the form of benefits, extra care or adjustments in the workplace.
A lack of understanding can also cause people to doubt an autism diagnosis, even following a professional assessment. A limited understanding can mean that a preconceived image of an autistic child or adult is held, and accepting a person who appears to have fewer symptoms or a different presentation can be difficult. Maybe the image has been created from knowing a single autistic child or adult, seeing a character on TV or merely created from a limited understanding. However created, this distorted perception can lead to a lack of belief about someone’s autism diagnosis. I have heard ‘he’s not really autistic, he’s doing that on purpose’ on more than one occasion in my career. This belief can cause personal grievances, and a resistance to providing adapted support.
Autism training is essential. It helps staff recognise and respond to the individuality of autistic people, and help ensure that support is provided at the earliest opportunity.
Support and Interventions
How do you help an autistic child, young person or adult? One of the most popular questions typed into google does not have a straightforward answer. I would argue that one of the most useful approaches would be to develop some knowledge and understanding, and use that to develop something that meets their individual needs. I would argue that there is no one size fits all approach, but personalised support plans can be easily developed if you know how.
Of course, we are back to the importance of training again.
I’ll go back a step. ‘How do you help…?’, the first thing staff need to be clear about is what they want to help with. It is at this point that an understanding of autism is key. Autistic people have a different neurology to non-autistic people. If staff don’t understand this, one of their foremost ‘help goals’ is usually to help become ‘more neurotypical’. This approach is fraught with ethical issues, and likely to cause distress to staff and the autistic person they are supporting. Staff need to accept autistic differences, and help those they are supporting to achieve autistic wellbeing and not neurotypical wellbeing. This is a concept not easily understood by neurotypical people, who are often inclined to transfer their own needs and beliefs onto others, all be it with good intention.
Every person has the right to be accepted and respected for who they are. As a principle, I don’t think many people would argue. In trying to help an autistic person appear non autistic, staff will often inadvertently request them to hide who they really are and pretend to be something they are not.
Not being accepted and respected has significant personal impact. Low self esteem, feelings of worthlessness, negative self talk are all consequences of negativity, criticism and rejection. These can lead to stress, anxiety and depression.
Staff need to understand this issue, and to do that need more than a written description of autism to help them.
There are a range of formal / structured interventions aimed at supporting autistic people. I know through experience that some work well for autistic people in certain circumstances and I would champion their use. Others make me cringe, and some should land their pioneers in prison. How do you know what interventions work with which people if you don’t understand autism?
The approaches that help, undoubtedly have their routes in understanding and respecting autistic people. They have their place, when implemented in certain situations for particular people.
Autistic people need to learn, develop and face new challenges just as non autistic people do. They may experience difficulties such as anxiety, depression, physical illness or tragedy just as non autistic people do (and may be more likely to experience some of these difficulties).
They may have other diagnoses such as learning disability, ADHD or Tourette’s just like non autistic people do.
They may experience relationship breakdowns, be placed in foster care, be struggling with parenting just as non autistic people do.
There is no single intervention that I am aware of that can help in the huge range of situations that life presents with. However, understanding autism and how to support autistic people means that creative approaches that take into account strengths and difficulties can be developed. Respectful support can be provided. Autistic people can be supported to learn, develop and cope with challenges. They can be supported to manage and overcome anxiety and depression.
They can access the treatment for their illnesses and support for their disabilities.
It all starts with understanding and acceptance.
Ironically, one of the areas of difficulty described as a characteristic of autism is ‘difficulty empathising’. I would argue the biggest difficulty autistic people experience is neurotypical people not being able to empathise with them.
When a member of staff attempts to support an autistic person without appropriate knowledge and understanding they have no option but to default to a ‘neurotypical’ approach. After all, they don’t know what they don’t know. The impact of this well-meaning but inappropriate response can be wide ranging for the autistic person, and can leave staff bewildered as to why their approach is not working.
How can someone empathise when they don’t understand the other person?
At minimum impact the support maybe ineffective, the bigger impact can be extreme distress, trauma or a blow to self esteem that can last a lifetime.
Now,consider the support assistant who gives a child ‘time out’ for not using their ‘little feet’ in the corridor. Without appropriate understanding and acceptance of differences the support assistant cannot empathise with what the child is experiencing. To her, the child had ignored numerous requests to walk calmly in the corridor and needed a ‘time out’ to help enforce the request. She did not understand the significance of using the phrase ‘little feet’.
To the child, he was being punished because he didn’t have little feet to use and had no way of getting little feet. He had no idea he was being told to stop running. He was punished for being autistic.
A small incident yes, but imagine small incidents like these happening all day long. Can you imagine the impact on a child’s self esteem?
Was the support assistant being purposefully cruel? I don’t think so. She simply couldn’t empathise with the child because she did not have enough knowledge or understanding of his needs. In her mind he was ‘neurotypical with a few extra difficulties’.
Imagine how that situation could have snowballed, as it often does.
What if the child became so confused and anxious at his punishment that he had a meltdown? What if during that meltdown he lashed out at the assistant? His parents may have been called, He may have been sent home. His parents may have extended the punishment in the house, preventing him from playing his games console or watching TV.
Whose fault was it?
Autism training is important.
Who Needs Autism Training?
The number of children and adults being diagnosed with autism is exponentially increasing, with supporting autistic people being the role of every service and most professionals. Thankfully, we are becoming better at recognising and responding to autistic people.
Autistic people do not exist within a vacuum and support is not limited to the remit of specialist autism services.
Just like non autistic people, autistic people will need to access schools, colleges, pharmacies, dentists, hospitals, transport, careers advice and countless other services.
Sometimes autistic people get depressed, experience anxiety and develop behavioural difficulties. Sometimes autistic people get toothache, broken legs and cancer. Autistic people may want to play sports, join clubs or go to the cinema. They need to travel to places, they need to buy things and they need to eat.
Every professional working in health, social care or education needs who supports autistic people should be trained to appropriately do so. After all health and social care staff have a duty of care to keep their knowledge up to date and not practice outside of their professional limitations. Education staff have a duty to ensure they have a thorough understanding of the different needs and developmental attributes of learners in their care.
All staff have duty to make reasonable adjustments to ensure that autistic people are not disadvantaged because of their disability, in accordance with the Equality Act (2010).
Staff working in other organisations who provide support to autistic people should also be trained to do so.
Is Autism Awareness Enough?
As the number of people being diagnosed with autism has increased, so has public autism awareness. News stories about autistic children and adults are now commonplace, as are autistic characters in films and TV shows. There have been many autism awareness campaigns. There is no doubt in my mind that this increased awareness and challenged public preconceptions of autism. There is more awareness of the individuality of autistic people, the range of difficulties experienced and maybe even some recognition of strengths. This is great news, but is it enough?
I believe that autism awareness, as the basic concept of making people aware that autistic people exist and have varying strengths and difficulties should be reserved for those who are assisting and not supporting people. It also has a place as a starting point for training. For those who are charged with supporting others, simply being aware of autism is not good enough.
Autistic people are as complex as non autistic people. The way in which both neurologies perceive and process information, interact, become motivated and respond to various situations is the result of the activity of millions of neurones. Neither neurology is straightforward.
By default, most people with a typical neurology relate to others based on a map of their own internal processes, influenced by their experiences. For those who are trained in their profession, their training will most likely be based on a similar neurology and aimed at supporting neurotypical people. Neurotypical interactions are usually based on empathy, that is guessing and feeling what others are thinking, planning and feeling. Without autism training to help understand autism, how can staff empathise?
And finally a note about those who support autistic people at home…
We should also not forget the needs of parents, partners, family and carers. We should not assume that having an autistic child, friend, partner, brother or sister means family and carers understand how to understand or support an autistic child or adult. Many have learned all they need to know. For others, the opportunity to learn and develop the skills they need is not available or not accessible. Autism training is important for families too.