Language use, characteristics, severity levels, behaviour concerns, impact on families, therapies, autistic adults, social workers support families, social workers supporting adults, practice approach, screening tools.
Three sections follow:
1. Background Material that provides the context for the topic
2. A suggested Practice Approach
3. A list of Supporting Material / References
Feedback welcome!
Background Material
Preamble – a note about language
There is currently disagreement among professionals (such as teachers, therapists, researchers, and clinicians) about the most appropriate and respectful way to refer to individuals with disabilities in general, and those with autism, in particular. The disagreement revolves around using person-first language or identity-first language. Supporters of person-first language feel it is important to emphasize the person rather than the disorder or disability. These people promote the use of terms such as, "person with autism" or "a person with ASD" (autism spectrum disorder). The alternative is identity-first language, i.e. using terms such as “autistic people”. Those supporting this approach view autism as a central and important part of their identity (not an addition to it) and take pride in it. Identity-first language suggests that autism is a different way of seeing and interacting with the world, rather than an impairment or a negative thing. It highlights the strengths autistic people, e.g. honesty and loyalty, attention to detail, visual perception, creative and artistic talents, mathematical and technical abilities (Raising Children Network, 2022; Taboas et al., 2023; Wooldridge, 2023).
The material that follows uses both person-first and identity-first language, depending on the approach taken in the various articles cited. This acknowledges the different opinions and positions on autism language and recognises that people have personal preferences and individual rights on how they are described. A recent review found identity-first and person-first language are used by different autism stakeholder groups in the US, Australia and the United Kingdom (Taboas et al., 2023).
Introduction
Most of the information that follows looks at the impact of autism on children and families, although a section specifically on autism and adults is covered later. Readers will find some of the points raised about children can also be applied to adults. The topic “Neurodiversity” elsewhere on this website (check the ‘contents’ button) has more information about adults and autism.
What is autism?
Autism is a lifelong developmental disability that affects how a person communicates with and relates to other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that, while all people with autism share certain difficulties, autism will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours (APS, 2021; Department of Health, UK, 2015).
Raising Children Network (2024) expands on this definition by considering three key characteristics of autistic children together with other characteristics that may be present.
1. Difficulty interacting and communicating with others For example, children might:
not use eye contact to get someone’s attention
not use words or gestures to communicate
be confused by language and take things literally.
2. Narrow interests For example, children might collect only sticks or play only with cars.
3. Repetitive behaviour For example, children might:
make repetitive noises like grunts, throat-clearing or squealing
do repetitive movements like body-rocking or hand-flapping
do things like flicking a light switch repeatedly.
Other characteristics
Autistic children might also be under-sensitive or over-sensitive to taste, touch, sight and sounds. For example, they might:
be easily upset by certain sounds
eat only foods with a certain texture
seek vibrating objects like the washing machine
flutter fingers to the side of their eyes to watch the light flicker.
Autistic children have these characteristics because their brains have developed differently from other children’s brains. Early signs of autism usually appear before children are 2 years old. In toddler years signs of autism become more noticeable as children are expected to start talking and playing with other children. Signs of autism in older children and teenagers might become noticeable when children have difficulty adjusting to new social situations in the school environment – for example, understanding and following instructions, making friends, and having age-appropriate interests. Diagnosis involves a multidisciplinary team: a paediatrician, a psychologist, a speech pathologist and sometimes a psychiatrist. It might also include other professionals, like an occupational therapist (Raising Children Network, 2024).
Levels of autism
Until recently it was not uncommon to refer to low-functioning and high-functioning people when describing those with autism spectrum disorder (ASD). Rudy (2023) explains why these labels are no longer used, in keeping with the approach of the DSM-5. The DSM-5 uses levels to diagnose the severity of impairment and to indicate the level of support an autistic person requires:
Level 1 ASD, formerly known as high-functioning autism, is the mildest form. People with level 1 autism may be described as having "low support needs".
Level 2 ASD is the middle level of autism. People with level 2 autism require substantial support.
Level 3 ASD, formerly known as low-functioning autism, is the most intense form of autism. People with level 3 autism may be described as having "high support needs."
People with level 3 autism experience significant challenges in social communication, extreme difficulty coping with change, and other behaviors that reflect intense autism traits and impacts on function. They rarely initiate social interactions and may have minimal response to social overtures from others. These challenges make it very hard for people with level 3 autism to complete day-to-day tasks, like taking care of themselves or working.
People with level 1 autism have low support needs. They are often able to function far more independently than those with more intense autism traits. They too have challenges with social communication, but typically have strong language skills. These difficulties with social communication, or narrowly focused / repetitive behaviors, can cause significant interference in day-to-day functioning. They can be rigid or inflexible and have difficulty with transitioning between activities. By definition, autistic people with low support needs still require support. Without support people with level 1 autism can have noticeable challenges, including problems with organization and planning, that hamper their ability to be self-sufficient.
Rudy (2023) concludes: “Regardless of the autism level, the person's need for support can vary for many reasons and may be inconsistent from one day to the next. For example, the same child may need minimal support in the home, significant support at school, and a great deal of support in a new, unstructured social situation. Functioning labels do not recognise this and often lead to discounting the abilities of people with level 3 autism while overlooking the need for support for people with level 1 autism … Autistic adults say functioning labels are misleading and harmful and increase the stigma and misperceptions of autism.”
Common behaviour concerns
Children with ASD demonstrate delays and differences across two main areas of functioning (APS, 2021):
Social interaction and communication Some children with ASD have little if any speech. Those who do have language skills often find it difficult to communicate effectively, e.g. they may say odd or inappropriate things, make blunt or impolite comments, talk about a specific topic for long periods of time with no awareness that others have lost interest, or say things that are not relevant to the current conversation. Non-verbal communication can be difficult, such as making eye contact and understanding facial expressions and hand gestures. People with ASD often tune out when others are talking to them, or appear not to listen, especially when the conversation does not involve their favourite topic of interest.
Behaviour and interests People with ASD can have a very narrow or unusual set of interests, or they may play in a repetitive way. They may know everything about a certain topic and talk about it constantly, want to watch the same television show over and over, or focus their play on a single toy. Some children with ASD engage in unusual behaviours, such as hand-flapping or rocking, which is usually a sign of excitement or agitation. Many experience difficulties coping with change but do better when they are prepared ahead of time for changes in routine.
The Raising Children Network site (2024) suggests the following are common behaviour concerns for those interacting with autistic children (link: https://raisingchildren.net.au/autism/behaviour).
Aggressive behaviour Autistic children sometimes express their emotions through aggressive behaviour, sometimes directed towards objects or other people. For example, they might hit or kick people or throw objects. Sometimes the aggressive behaviour is directed towards themselves. An example is head-banging.
Appointments Many autistic children and teenagers have social and communication difficulties, a preference for routines and sensory sensitivities. This means that appointments with unfamiliar people in unfamiliar, busy or noisy places are often challenging for them
Meltdowns Meltdowns happen when autistic children and teenagers feel completely overwhelmed, lose control of their behaviour, and find it very hard to calm themselves. Meltdowns are a sign of distress and might include behaviour like rocking, crying, hitting or withdrawing.
Bullying Autistic children and teenagers are particularly vulnerable to bullying, especially in mainstream schools. This is because neurotypical peers can struggle to understand autistic children’s ways of communicating and interacting.
Stimming Stimming is repetitive body movements or noises, e.g. hand and finger movements, body movements, posturing, visual stimulation, repetitive behaviour, chewing or mouthing objects, and listening to the same song or noise over and over. Stimming seems to help some autistic children and teenagers manage emotions and cope with overwhelming situations.
Wandering Many autistic children wander or run off, even when being supervised. They might want to avoid noise, go to a favourite place, avoid something they’re scared of, seek a sensory stimulus like water, feel in control, be chased.
Impact on families
The literature highlights a number of family stresses associated with raising children with ASD (McCafferty & McCutcheon, 2020).
Behavioural issues Inappropriate, challenging and disruptive behaviours impact on families, e.g. parents report stress and psychological symptoms such as anxiety. This can have a long-term impact on families comparable to PTSD. Morris et al. (2018) suggest families can find hospital visits especially difficult behaviour-wise because of the slowness with which diagnoses of problems occur and the extended time they have to spend waiting.
Feelings of loss and grief It is “usual” for the family to grieve the loss of the “normal” child while coming to terms with it both emotionally and practically. Therefore practitioners need to consider the complex emotions and processes of grief, which will be unique to each individual and potentially different for mothers and fathers.
Appreciation of strengths Loss and grief can be offset by reflecting on the strengths autistic people can bring to society: honesty and loyalty, attention to detail, visual perception, creative and artistic talents, mathematical and technical abilities.
Bi-directional nature of attachment Children with ASD are more likely to experience higher levels of stress, anxiety and attachment insecurity. Mothers of children with autism need support in improving their mental health and parenting practice.
Future related worries Mothers of children with ASD usually present with clinically significant levels of stress. Future-related worry can be a significant factor. Interventions should focus on the socio-emotional impact of parenting a child with ASD rather than focusing on behaviours. Taking a strengths-based approach when working with families with autism has been identified to be crucial in promoting positive coping strategies and encouraging resilience
Social isolation Research identifies mothers of disabled children to be on the edge of society, with many experiencing isolation, loneliness and poor physical and mental health. The marginalization of both mother and child becomes amplified.
Stigma There is an ongoing negative stigma associated with ASD. Pressure comes from family and others believing that a child’s behaviour simply requires more effective discipline. (Morris et al. (2018) point out this is a particular problem in hospital waiting areas.) Older people in particular can question the autism diagnosis. Practitioners need to be aware of these “blame narratives”. Being mindful of this “relational power” underpins anti-oppressive practice. Skills of empathy are essential to convey an understanding of the lived experiences of the families. On the other side, parents of children with autism often report a positive outlook, one that is important in life and an increased understanding of themselves. Kinnear et al. (2016) elaborate on the impact of stigma on families in their article. They examine its impact on behaviours, rejection, isolation, as well as the public perceptions of autism.
Impact of role specialisation Caregiver demands can increase stress, especially for mothers. On the other hand, employment can have a positive impact on mental health as it is seen as offering respite from caregiving. Recent studies show that mothers of a child with autism are more likely to experience higher levels of stress than any other group. Morris et al. (2018) suggest this stress can be both physical (exhaustion) and financial.
Therapies and services
Therapies and supports for autistic children include behavioural, developmental, family-based, medical and alternative therapies. Some therapies and supports are based on or combine with others. Behavioural and developmental therapies and supports seem to help the most, especially when there is family input (Raising Children Network, 2024: in particular see https://raisingchildren.net.au/autism/therapies-services).
Behavioural therapies and supports Behavioural therapies and support for autistic children use specialised, structured techniques to help children learn new behaviours and skills. These therapies and supports are generally referred to as Applied Behaviour Analysis (ABA) approaches. Examples include Discrete Trial Training (DTT), Early Intensive Behavioural Intervention (EIBI), incidental teaching, Pivotal Response Treatment (PRT), and Positive Behaviour Support (PBS). Note, however, that there has been recent discussion (e.g. Leaf et al., 2022; Zawisz, 2022) suggesting ABA approaches may not be suitable for everyone and should be considered in a context of person-centred practice.
Developmental therapies and supports Developmental therapies and supports work on autistic children’s skills for forming positive, meaningful relationships with other people. They also help children learn social, communication and daily living skills in everyday and structured settings. Examples of developmental therapies and supports include the Developmental Social-Pragmatic (DSP) model, DIR/Floortime, and responsive teaching.
Combined therapies and supports Some therapies and supports combine elements of behavioural and developmental therapies and supports, e.g. Early Start Denver Model, SCERTS Model, TEACCH.
Family-based therapies and supports Family-based therapies and supports for autistic children emphasise the idea that families should be involved in deciding on and using therapies and supports for their children because autistic children do best when their families are supported. An example of a family-based therapy is ‘More Than Words’ (https://raisingchildren.net.au/autism/therapies-guide/more-than-words-)
Therapy-based supports Therapy-based supports focus on specific skills or difficulties. They can include speech pathology, occupational therapy, psychological therapy, psychiatric therapy, and physiotherapy. It is important to choose therapists who are experienced in working with autistic children.
Medical therapies and supports Medicines can sometimes help autistic children, particularly when children have behaviour, emotional and learning challenges that interfere with their health and wellbeing, ability to learn and progress, daily life and the daily lives of their family. Medicines might help with aggressive behaviour, anxiety, obsessive behaviour, hyperactive behaviour or overactivity, seizures, sleep problems and tics.
Autism and adults
To date research on autism has focused predominantly on children, and the paucity of adult-focussed research means that little is known about the experience of autistic adults. The small, existing body of research investigating autistic adults’ experiences identifies specific, on-going needs which may require social work support and access to adult care services throughout a person’s life course. Society assumes that as children progress towards adulthood, they become more autonomous and less vulnerable; however for some autistic people, this is not the case. For young people education provides support and meets some of their needs, but beyond school age the level and immediacy of support changes significantly. There can be an expectation of independence and autonomy with which many adult people with ASD find difficulty (Rodgers et al., 2019).
Worries and experiences of adults with ASD
Uncertainty about the future The main concerns related to non-specific worries about what may, or may not happen in the future, and whether individuals will be able to cope with any change or periods of unpredictability. Not knowing can be distressing.
Support Support reduces in adulthood, with many adults receiving most of their support from family members, rather than external social care agencies. This support may change with change in family members’ circumstances. This was compounded by a fear of having to seek professional support because it can be difficult for people with ASD to share their difficulties with someone else. This partially arises through fear of not being believed or treated seriously by professionals.
Diagnosis A diagnosis may enable self-awareness, but it raises questions about whether to share the diagnosis with others as it may influence access to opportunities either personally or professionally.
Living circumstances This theme includes work, finances, residence, independence and government policy, e.g. worry about maintaining a house to the standard expected by others, change in income as one ages, finding and fitting into employment.
Relationships—romantic, social, familial and professional Negotiation skills are necessary in relationships. This raises concerns around the ability to communicate effectively and worries about misinterpretation of what is said. Autism also makes relationships more difficult because individuals are aware of differences in their social abilities which may make it difficult to form new relationships, leaving them concerned about possible future isolation.
Health Mental health is a concern (depression and anxiety), as it places pressure on the person and loved ones. Future deterioration in health is a concern (Rogers et al., 2019).
Employing individuals with ASD
In 2017 Scott et al. conducted research on 59 individuals with ASD who did not have an intellectual disability and were working in open employment. (The individuals do not represent the entire ASD spectrum.) The findings suggest that an adult with ASD provides benefits to employers and their organisations without incurring additional costs.
The study set out to confirm or challenge previous findings around employing autistic adults. Previous research suggested that adults with ASD face specific difficulties including promoting themselves in an interview, difficulty adjusting to new work environments and routines (including sensory sensitivities in the workplace), remembering and following instructions, planning and multi-tasking, communicating effectively and socially interacting with co-workers. In contrast, findings also suggested adults with ASD may perform well in tasks that require systematic information processing, a high degree of accuracy in visual perception, precise technical abilities, increased concentration for long periods of time and a high tolerance for repetitive tasks. Employees with ASD may also possess other qualities attractive to employers, including trustworthiness, reliability, integrity, attention to detail and low absenteeism (Scott et al., 2017).
The findings from the Scott et al. study (2017) indicated a gap in remuneration ($1.65 less, likely attributable to underemployment or part-time work for employees with ASD) but no significant difference between people with ASD and their colleagues in regard to weekly employment, supervision and training costs. This contradicts the oft-quoted employer concern that hiring people with a disability will lead to increased costs for supervision, training and accommodation.
Employees with ASD demonstrated above standard workplace performance when compared to their counterparts with regard to increased attention to detail, work ethic and quality of work. These outcomes point to qualities which are attractive to employers and common among people with ASD, such as reliability, integrity and consistent accuracy in performance. Findings from this study revealed that the employees with ASD were at least as productive as employees without ASD, challenging the assumption that hiring an individual with ASD, results in an employee with lack of work skills and reduced productivity. Challenges that arise with individuals with ASD can be ameliorated by structuring and adapting work tasks, direct communication, and understanding individual support needs. Moreover employers noted the positive impact employing an adult with ASD had on the workplace culture, particularly through the addition of new and creative skills, the increase in ASD awareness and a conscious positive shift in workplace inclusion (Scott et al., 2017).
Social workers and autism
Knowledge and training
A review by Corden et al. (2022) found only moderate levels of autism knowledge, training and self-efficacy among healthcare professionals. The authors suggest this lack of knowledge impacts on providing appropriate healthcare for autistic individuals, e.g. referring autistic people for diagnosis and ongoing support, both relating to autism itself and co-occurring conditions. This potentially puts autistic people at risk of not receiving adequate healthcare. This finding is of concern, as many autistic people across the lifespan report significantly lower physical- and mental health-related quality of life than their non-autistic counterparts.
Supporting families with an autistic child
It is important to understand the impact on parents that care for a child(ren) with ASD, so as to better appreciate how to respond in a more integrated, targeted, cost-effective manner and in a way that best supports parents. Three themes are central to improving the mental health of parents (McCafferty & McCutcheon (2020).
1. Access to social support with similar parents Support groups have been identified as crucial in providing a refuge from the “otherness” which families experience, providing parents with a safe place to reframe their ideas of ASD, family and identity. They can empower parents to see they, not necessarily others, have the resources to best support their children. However, practitioners should look to expand social support beyond support groups to the natural social network.
2. Professional training in skills development
3. Gaining knowledge regarding ASD Strategies are needed to teach parents to effectively cope with the stress as well as the daily challenges of managing the family as well as managing the behaviours. A common barrier is created by healthcare providers’ inadequate knowledge of ASD and misconceptions. Yet social workers should have this knowledge and should be taking a systemic approach to encourage all family members, including extended family, to make use of educational resources about autism.
Expanding on point 2 above, APS (2021) suggests the following as ways parents can support children with ASD:
Use the child’s strengths Harness the child’s skills (e.g. honesty and loyalty, attention to detail, visual perception, creative and artistic talents, mathematical and technical abilities) to motivate and stimulate learning and communication with others by showing interest in their activities. It will help foster interaction and communication.
Use the child’s special interests to increase motivation in other areas Use the often-small number of intense interests as a springboard for strengthening parental engagement with the child, for expanding the child’s interests and increasing the child’s motivation for other activities.
Share their interests—play alongside the child, make observations about what parent and child are doing, encourage taking turns and sharing delight.
Gradually include minor variations in the play to help expand your child’s imagination and tolerance for minor changes.
Incorporate their special interest, toy or game into other activities, e.g. counting, learning colours, social stories.
Use visual aids and reminders Create activity boards or step-by-step reminders, use written words, photos or pictures to describe the steps.
Where possible prepare the child for changes to daily routines, different teachers, anything out of the usual.
Involve the child in social activities Consider a range from social skills groups specifically developed for children with ASD through to social- and activity-based groups such as Scouts and Guides.
Supporting autistic adults
A greater level of awareness is beginning to unfold for adults with autism, so now more than ever social workers need to know how to assist people with autism to access different types of support and to stay well in their communities. The recommendation is for social workers to adopt a person-centred, strengths-based approach. It is important not to make any assumptions with autism (Department of Health, UK, 2015). The Department of Health, UK (2015) has a number of suggestions for supporting an adult with ASD. These are included in detail in towards the end of the Practice Approach section immediately below.
Practice Approach
Introduction
Considering the increasing rise of children diagnosed with ASD and the rising number of parents experiencing stress, a number of parents clearly need support. Early intervention is a globally recognized framework, and social work practitioners are ideally placed to identify the potential stresses and respond quickly and effectively. This presupposes a knowledge of the stressors involved and supports that are available. Training in ASD, the associated stresses, and available interventions should be available to all social work practitioners (McKenzie & McCutcheon, 2020).
Letlhakwane and Smit (2018) suggest ecological and strengths-based perspectives are relevant when supporting people with ASD. The ecological perspective looks at the individual and how they interact with their environment, i.e. how they adjust to be more comfortable in a given situation, how needs match with available resources, how the person fits into different hierarchies they experience, and, more specifically, how comfortable the person is where he or she lives, works, recreates, etc. It is important for social workers to help family members to locate and utilise the resources available in their communities; such resources will help the family to cope and manage the situation they are in.
The strength-based approach is a process whereby a clients’ abilities or capabilities are perceived as resources which can be used to help them move forward towards problem solving and growth. Although people with children living with autism are constantly faced with enormous challenges and difficulties, they should be seen as people who carry the solutions to their problems or have an idea of where to begin in trying to solve those problems. The social worker should always work with them and not for them, so the person and parents are empowered and well informed (Letlhakwane & Smit, 2018).
Morris et al., (2018) suggests social workers with a background in autism can provide quality patient and family-centred care by:
Building a therapeutic relationship.
Providing individualised support.
Facilitating communication between the child/family and the medical team.
Advocating for the person’s/family’s needs.
Assisting the family/person with service navigation.
Consulting with experts to improve service delivery.
Strategies
Become educated around autism: readings, short courses, webinars, discussion with other social workers; become aware of misconceptions.
Where possible utilise the person's strengths: honesty and loyalty, attention to detail, visual perception, creative and artistic talents, mathematical and technical abilities
Be aware of the behaviours that are of concern to others and be able to make suggestions to deal with them (Raising Children Network, 2024):
Aggressive behaviour – stay calm, use few words (e.g. ‘sit down’), move the person to a safe place, distract with another activity, use praise, ultimately seek professional help especially if restraint is necessary.
Attending appointments – prepare the child, uses social stories, gradual introduction to the area.
Meltdowns – discuss what overwhelmed feels like and what to do (e.g. take a break, breathing exercises, leave early to avoid crowds, use headphones).
Bullying – talk to the person pointing out what is happening and why is should not happen; talk to the school/employer about their approach; reward positive behaviour.
Stimming – understand why stimming occurs and accept it as necessary for the person.
Wandering – put strategies in place to manage wandering, e.g. holding hands, physical barriers, tracking app, alarms on doors. Establish an emergency plan and share it with friends, neighbours and relevant community organisations.
Be aware of the ways autism can impact on families and, using an ecological and strengths-based approach, problem solve with family members around ways to manage the stresses that occur as a result of ASD behaviour.
Behavioural issues – see the dot points immediately above as well as
o Use the person’s strengths and special interests
o Use visual aids and reminders
o Prepare the person for changes
o Encourage involvement in social activities
Loss and grief – this will be unique to individuals; see the topic “grief and loss” on this website, available via the “Contents” tab
Attachment issues – education around attachment may be appropriate; see the topic “attachment” on this website, available via the “contents” tab
Socio-emotional impact – approach this using a strengths-based model, discussing coping strategies that are working and building on these
Isolation, loneliness and physical/mental health issues – use an ecological and strengths-based approach to address these issues; the topics “loneliness” and “mental health” elsewhere on this website may help; access via the “contents” tab
Stigma – demonstrate empathy and convey an understanding of the lived experience of families; explore strategies to use when people experience stigma and stereotyping
Stress – this topic is discussed elsewhere on this website; access via the “contents” tab.
Prepare a brief summary of the therapies listed above that can be used with autistic people (behavioural, developmental, combined, family-based, therapy based and medical). Find specialists in the local area who use these therapies.
Be aware of the worries and experiences of adults with ASD; feel confident one can work through these with the person:
Uncertainty about whether they will cope in the future
Concern about support structures changing or stopping
Impact of a diagnosis on others and employment
Able to maintain employment, financial security, a place to live, independence
Maintaining relationships – romantic, social, family and professional
The Department of Health, UK (2015) suggests five strategies to use when supporting adults with ASD.
1. Communicate clearly
Advance contact and setting People on the spectrum like the feeling that events are well planned: contact them to ask where and when to meet; ask them to set an agenda or to pre-plan the meeting—make a list of the things they want to discuss. Have a clear cut-off time to end the meetings. Ensure the meeting place is quiet / calm, avoiding sensory overload.
Build trust Be punctual. Be consistent in dress, meeting place, appearance, and perfume. Do not sit face-to-face. Check with the person about pace—too much information can result in anxiousness. Be open, honest, realistic about what is achievable and what is not.
Communication styles Consider processing time. Avoid jargon. Ask questions using short sentences; too many open questions may make the person feel overwhelmed. Take time to get to know how the person understands.
Talking and listening Be comfortable with silence; this allows the person time to think and consider. Do not paraphrase too much as it can cause confusion. Let the person dictate the flow of conversation. Offer to write things down, to make a summary of the meeting. Do not provide too many options. Keep conversation factual. Body language (e.g. facial expressions) may not be understood.
2. Support Caregivers (including family members)
Identity There can be stigma attached to the word ‘carer’ and to family members. Carers of those with autism may have autism themselves and they may be parents too—sometimes of children who have autism. Carers must be included in the assessment of those eligible for care.
Recognition, validation Recognise any pre-existing support carers have been supplying, consciously or otherwise. By doing so, the carer of an adult with autism can have their own needs taken into account, rather than vicarious needs via the person with autism. The future of their loved one when they are no longer able to care can be a very significant anxiety for carers. It is important to emphasise that it is best to put these plans into place while they are still around to input and provide their expertise. Some carers will have had negative experiences of services—acknowledge this and work towards building trust.
Self-help, having a life Carers want and need to gain or maintain the ability to be employed outside of their caring role. Assist carers to initiate their own support groups and activities/pastimes/employment.
3. Intervene in a crisis
Prepare and pre-empt Try to get to know the person in advance: read their file, check they agree with consulting other professionals, carers, etc. Look for positives in their history. Research/ask about the person’s coping strategies and what works in a crisis. This will help them move through the current crisis.
Finding solutions, acknowledging aims Put into practice quick problem-solving skills when a person with autism isin a perceived crisis. With autistic people, this will probably involve working together and slowly breaking down the problem into different parts. Uncertainty, the unknown, unplanned things that are not part of an autistic person’s routine can, for some with autism, feel terrifying. Follow through on joint plans and be very clear about what has been agreed upon. Be committed to the things planned with the person and be open about contingency plans in case what has been planned does not eventuate. Planning for uncertainty is essential, for example, if a respite option falls through.
4. Work to reduce stress
Day-to-day stress Autistic adults may feel stressed a lot of the time. Social workers need to have a grounded appreciation of the person’s (sometimes constant) stress levels and not be dismissive of these. Remember to recognise that change and uncertainty can cause trauma for a person with autism.
Do not assume anything about the person Plan multiple, short and focused visits to gather information to build a profile of the person and what keeps them well. Be comfortable with a strengths-based approach through this. The challenge is to access their knowledge about themselves on their terms. Ask the person what they love doing, what really motivates them. Be prepared to navigate your way around unusual and diverse issues.
Planning with the adult Plan with the person and/or their main carer to put into place what will act as a stress reducer in the situation ahead—‘prepare for the worst, and hope for the best’. Make two or more plans simultaneously so that if plan A fails, plan B has run alongside it concurrently and will kick in.
The person’s hobbies, interests Some adults have a particular interest or hobby that can be a source of comfort and can be utilised if the person is or may experience anxiety. Tailor such interests for when the person is out and about, planned or otherwise.
5. Advocate when necessary
System navigation Adults with autism have varying degrees of ability with reading and writing. Some may struggle to interpret and process letters or things in writing. Consequently, on some occasions, social workers will need to support them to process information to do with appointments, services, systems, and be a navigator through some systems for them. Systems can be structurally discriminatory, and workers should overcome these barriers on behalf of the person.
Challenging Challenge many things as part of advocacy. Abilities of diplomacy and overcoming discrimination will be necessary to challenge in a positive way. Part of the advocacy role is to encourage the involvement of people with autism and their carers in the shaping and commissioning of support services.
Representing the person If the autistic person is unable to represent themselves, in order to give a true picture of them and their views the social worker will need to be able to explain their personality and character, their desires, and how autism may affect them (positively and negatively), whether they have other associated issues or additional (dis)abilities that are relevant. Be up-to-date on national and other relevant policy. Be aware of the perceptions and politics of autism that are present in the community and among professionals.
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The topic “neurodiversity”, located elsewhere on this website - locate via 'contents' tab - refers to autism from time to time and may be worth reading if more information is required. The slide on the left is a brief summary of the some of the material covered in that post.
Supporting Material / References
Resources
Screening tools
The following sites offer information about instruments that will provide further information and screening for autism. The list is not meant to be exhaustive.
Social Workers Toolbox: https://www.socialworkerstoolbox.com/category/disability-disorders/autism/
This site is a list free social work tools and resources (with links) across multiple areas. The resources for autism include the following:
Live journey through autism: A guide to safety
Autistic spectrum disorder
Brothers, sisters and autism
Sensory strategies: Teenager information pack
Sensory processing and self-regulation
Understanding and managing difficult feelings in autism
References
APS: Australian Psychological Society. (2021). Autism spectrum disorder in children. https://psychology.org.au/for-the-public/psychology-topics/autism-spectrum-disorder-in-children
Bishop-Fitzpatrick, L., Dababnah, S., Baker-Ericzen, M., Smith M., & Magana, S. (2019). Autism spectrum disorder and the science of social work: A grand challenge for social research. Social Work Mental Health, 17(1), 73-92. doi:10.1080/15332985.2018.1509411
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