Autism training and perceived misconceptions about autism in support workers

Introduction

Autism Spectrum Disorder (ASD) is a life-long condition characterised by some degree of difficulty with social interaction and communication, which may be accompanied by atypical patterns of activities, interests and/or behaviours (World Health Organization: WHO, 2023). Autism, as a spectrum, may present in individuals in different forms. Not all autistic individuals require support, and some don’t receive a diagnosis until later stages in life. Autism can be a primary diagnosis for some individuals, but for others, autism may be an additional secondary diagnosis, such as an individual with an intellectual disability and autism.

In Ireland, as in other countries, there are gaps in the prevalence data available on autism. However, the Health Service Executive (HSE) 2023 report highlights the significant increase in autistic school-leavers applying for adult disability day service places, with an increase from 35% to 53% of applicants with an autism diagnosis in four years (2019 – 2023). HSE reports also depicted autism as the most common recorded disability in children (Department of Children, Equality, Disability, Integration and Youth, 2024), some of whom might need adult day services and/or residential services. These significant increases have created a need for more specialised/tailored services (autism specialist services) or a wider range of services (autism supports within intellectual disability services)  that could support these individuals and meet their needs.

With an increase of individuals with different needs being referred to established adult disability day service organisations, there is a corresponding shift in the training requirements for staff. The aim of this author is to reflect on the current training available to staff in an adult intellectual disability service who are expected to support these individuals.

Despite the received training, through experience working as a support worker, team leader and assistant psychologist in adult intellectual disability settings supporting autistic people, this author has identified that when supporting autistic individuals some supporters may have a biased perception of the autism diagnosis that can limit their ability to support autistic individuals.

Discussion

Each human is a unique being. No two individuals think or behave in exactly the same way. As humans with a shared autism diagnosis, you will not find two autistic people with the same experience or set of strengths or needs. In practice, people supporting autistic individuals need not only an understanding of autism, but also an understanding of how autism presents in each individual. In order to ensure this understanding, support staff should receive adequate training prior and/or during their employment.

In 2021, the Irish government announced their intention to address the challenges that autistic people face. Since then, the Irish government has developed the Autism Innovation Strategy (Department of Children, Equality, Disability, Integration and Youth, 2024). Part of this strategy included:

1. The development and promotion of an autism training framework for professionals working with autistic people in Section 38 and Section 39 organisations;

2. the development of autism modules and modules for relevant co-occurring conditions;

3. sourcing and facilitating bespoke training on autism;

and

 4. the development and launch of a knowledge Hub on HSELand.

Even though the Autism Innovation Strategy (Department of Children, Equality, Disability, Integration and Youth, 2024) stresses the importance of developing and providing autism training for professionals working with autistic people, it is still not mandatory for staff to complete it. This means that some autistic people can be supported by untrained staff, who might not understand their diagnosis and/or their needs.

People from all different public sectors might interact with autistic people. Within the health and social care services, depending on the role, staff might need different skills and knowledge to support the autistic individual. In the United Kingdom, the Core Capabilities Framework for Supporting Autistic People (Health Education England, 2019) describes the required staff training for different settings ranging from basic understanding of autism to knowledge and skills required by professionals providing care and support in complex situations and/or leading services for autistic people. Based on these expected competencies, the National Health Service developed the standardised Oliver McGowan Mandatory Training on Learning Disability and Autism, which is provided in two tiers, one for general awareness and one for people who provide care and support for autistic people (elearning for healthcare, 2024)

In Ireland, health and disability organisations, public and private, will see an increase in the number of autistic adults requiring support, as the increase in reported autism diagnosed children will naturally become of age and transition into adult services. In practice, organisations supporting autistic people might refer their staff to external training or might develop and facilitate their own autism training.  In general, autism training is developed between multidisciplinary professionals, including psychologists, speech and language therapists and occupational therapists, with each professional bringing expertise in a specific area of autism difficulties. These trainings generally include a description and explanation of the autism diagnosis, a more in depth exploration of different communication and sensory needs, and a provision of generic communication strategies and environmental adaptations to support the autistic person. Depending on the professionals’ preferences or the organisational focus, the support strategies can be based on different evidence-based frameworks, such as SPELL framework (Beadle-Brown & Mills, 2010) or the SPACE framework (Doherty, McCowan, & Shaw, 2023). Whilst these trainings tend to be informative and provide good understanding of autism, they might oversimplify the autism difficulties, lack a person-centred or individualistic perspective of the autism presentation in each autistic person, and they might not meet the knowledge and skills required for staff who support people with more complex needs. 

Through experience working as a support worker, team leader and assistant psychologist in adult intellectual disability settings supporting autistic people, this author has identified that when supporting autistic individuals, the most noticeable biases have been:

1. yes/no view of the presentation of autistic traits

2. assuming everyone with autism has the same autistic traits  or believing that the support strategies are one-size-fits-all strategies;

and

3. continuity in autistic traits, this is the perception that autistic traits stay invariable throughout the lifespan.

Even though a black-or-white/all-or-nothing thinking is an autistic trait, ironically, autistic traits in the autistic individual may be perceived as present/absent. However, the reality is that the different difficulties present at different levels of severity in each autistic individual. The individual state, mood and coping capabilities of a person in a specific moment depend on many variables, such as being more or less tired, having had other stressors, being hungry or even the environment they are in. An autistic person’s capacity to make small talk or sensory difficulties presentation might change depending on the person’s state or mood

As part of someone’s social communication difficulties, staff might learn that some autistic people have difficulties starting and maintaining small talk. When staff observe that an autistic person does reply to small talk, they might assume this person does not have this difficulty. However, they may not realise this is not an all-or-nothing difficulty. Some autistic individuals appearing to reply to small talk, may not like small talk; may view small talk as pointless or unnecessary communication (communication that lacks clear and practical purpose), or might be able to hold a conversation they perceive as pointless for five minutes; but after that time it becomes a struggle for this specific autistic person to respond and engage in that conversation, even if they are aware that it is considered socially rude to not reply. 

In relation to commonality, many staff might wrongly apply similar practical strategies to support the same need. This may be seen when a support strategy has efficiently worked to meet another autistic person’s need, staff assume this strategy will also be successful in meeting the needs of another person with autism. Unfortunately, sometimes this is not the case, and different strategies need to be explored. For example, staff working with an autistic individual who has higher sensitivity to noise. In the past, this staff has supported other autistic individuals with similar auditory sensitivities by providing noise-cancelling headphones. So, staff offered or prompted the individual to use these headphones every time they are in a noisy environment. Even though staff’s supports are coming from a good place, they are failing to take a person centred approach in understanding the individual's needs. This individual may find zero auditory input or the headphone’s sensory sensation on their head too overstimulating or uncomfortable.   

All humans evolve; we go through better and worse times, and our preferences and needs change as we grow and age. This author has identified a tendency to perceive autistic needs as static and never changing, where staff may claim they have already tried specific supports some years ago and were ineffective. Similarly, some staff may report that a strategy worked at one point in time, and as a result they keep implementing it, even if it is not effective in the present. As an example, staff may have supported an autistic individual for more than 10 years. Initially, at age 15, staff explored different exercises to provide proprioceptive sensory feedback, such as supporting the person to engage in running or going to the gym. At this time, the autistic person did not seem to like these exercises and did not want to engage. This person might now be aged 25. They are no longer in puberty, but in early adulthood. Their living arrangements and staffing might have changed. They might find themselves in a stable routine with stable staff, so they might now be in a position where trying these exercises and engaging with them is of their liking.

Conclusion and Recommendations

Autism can present in multiple ways, with different traits being present or not. The traits that are present can be present in different degrees or severity, as a spectrum. Autism can be accompanied by other diagnoses or not. All this makes autism a complex diagnosis to understand and support at times.

Staff working and supporting autistic individuals should receive training not only in autism, but also in other areas of support, such as low arousal approach or positive behaviour support planning.  Supporting an autistic person and meeting their needs requires the supporter to know the person well, but also to see them as they are, a human. Autistic people, as every person, are not all or nothing, are not all the same and do evolve and change through time. It is crucial that this is understood, not only by supporters, but by everyone so their needs are met and they can have a good quality of life.

Even though the Autism training is not mandatory or standardised, there is an increase in training being offered by private or charity organisations, as well as training provided by the HSE, such as the Irish Health Service's national online learning and development portal (HSeLanD) module on autism. Most of these trainings provide enough knowledge for staff to meet the needs of some autistic clients, but when more complex cases arise, this training might not be enough. The team supporting a person with a complex presentation will need a more person-centred training tailored to the presentation and needs of that specific client. Through this training, the staff team will be able to gain further understanding of the individual presentation, reflect on the supports and determine what needs to be changed in the approach and supports. 

This author proposes three actions to ensure that all staff have the appropriate training to support autistic clients.

Firstly, to promote the evaluation and standardisation of current available training to assess their efficacy and based on a basic knowledge for specific workforce to be able to demonstrate.

Secondly, making compulsory the provision of autism training for organisations that support autistic individuals.

Thirdly, the autism training provision should follow a tier model system. This would ensure that there is basic knowledge across organisations and employees, so that those who support autistic individuals have a common knowledge of autistic characteristics. For those who support autistic individuals with more complex needs, an individualized training specific for the client, taking into account their unique strengths and needs is necessary.

Having a standardised, mandatory training will facilitate ensuring that all employees, such as social care workers, have the same knowledge and skills across the board. By evaluating the training, organisations would be able to assess the changes in staff needs and accommodate them.

Finally, ensuring that each member of staff has the level of knowledge and competencies required to support individuals with different needs. This would translate into better supports and quality of service provision.

This author believes that it is not only the autistic individual’s right to have people supporting them that has the required level of training to meet their needs, but staff also have the right to receive training that provides the competencies required to fulfil their role.