Living and working with people with autistic disorders is not like living and working with anyone else with or without disabilities. Past experiences of social interaction and a desire to help are not sufficient guides. It is essential to understand the nature of autistic conditions. People with these disorders, because of their social impairments cannot meet you half way. You have to make an imaginative leap into their world and try and see things from their point of view. (Lorna Wing, 1995)
From early childhood John didn’t speak, he was obsessed with spinning objects and he preferred to spend time alone away from other people. John has autism, and his story is not an unusual one in the context of adult disability services in Ireland. Difficult behaviours described in early childhood and adolescence exacted a heavy toll on John’s family life, and well-intentioned disability services guided decisions for him to move away from his family home and into institutional care. Unfortunately, 30 years ago autism spectrum disorders (ASD) were almost unheard of in Ireland, and people like John were largely misunderstood. Life in a large congregate setting for the next 30 years only served to validate his identify as someone who was severely challenging. Responses to his distress were often paternalistic and usually consisted of negative consequences, including: limited access to the things he enjoyed, limited opportunities and choices, restrictive practices, and high rates of anti-psychotic medications.
In the past decade there have been reports of a dramatic increase in the prevalence of ASD from .25 cases in 1000 (DSM IV, 1994) to 1 in 110 people (CDC, 2009), with the rate increasing by 10-17% per year. More children being diagnosed with autism can be partly attributed to a broader concept of ASD, and to better identification and understanding of autism. Though prevalence rates are somewhat controversial, it is generally accepted that more people with ASD will be entering adulthood, and that there will be increased demand for appropriate supports and services. This presents a significant challenge to services, and requires greater attention to the specific needs of adults with autism if we are to plan and provide for effective supports and services. The quality of their lives will be determined by how we, as a community, understand and respond to them not just as people, but as people with an Autistic Spectrum Disorder.
We have learned from first-hand accounts of people like Temple Grandin and Donna Williams and a growing number of online blogs from people on the spectrum, how people with ASD might experience the world differently to us ‘neuro-typicals.’ Autism can be considered as a different way of being. Autism is referred to as a spectrum disorder to signify a diverse group of people who share the same core characteristics. People with ASD have difficulties with social communication, flexibility in thinking and behaviour as well as sensory processing difficulties. Approximately 75% of individuals with autism also have a learning disability. The diversity of those on the spectrum is captured well by Stephen Shore’s famous quote: ‘If you meet one person with autism, you’ve met one person with autism.’
Many people will experience challenging behaviours while living with or supporting individuals with autism. Challenging behaviours can refer to self-injurious behaviour (such as head banging, biting), behaviours directed towards others (such as hitting out, kicking etc), property damage (e.g. breaking furniture) or restricted and obsessive interests (e.g. fixing or collecting objects) that impact on ordinary community living. People with autism are more at risk for a variety of challenging behaviours and can experience the full range of mental health disorders. The emotional and physical impact on the people supporting an individual with challenging behaviour can be enormous. Outcomes for the individual can include: serial crises, placement breakdowns, admission to specialist units, and use of high levels of psychotropic medications to manage behaviours. However, these consequences can be managed and reduced if we develop a greater level of understanding of the unique perspectives that accompany autism.
There may be many reasons why there is a link between autism and challenging behaviours. There is a strong association of stress and anxiety across all ages of people with a diagnosis of autism (Davis et al 2011). Indeed many of the behaviours associated with autism may be expressions of anxiety: repetitive, ritualistic behaviours, strong desire for routine, obsessive interests, hoarding, lining items up, sleep problems, gastro.intestinal problems, eating problems, avoidance, self-isolation, self-stimulatory behaviours etc. Autism is associated with levels of anxiety similar to that of people with a diagnosis of clinical anxiety. Understanding fear, anxiety and stress can help us understand why someone might engage in challenging behaviours. Many people with autism have difficulties interpreting their emotions, and may express and respond to their emotions disproportionately. Resultant challenging behaviours can be explained as panic or stress reactions.
We know that people with autism also experience the physical world differently than others do. Many people with autism have unusual responses to sensory stimuli; first-hand accounts of people on the autistic spectrum describe hypersensitivity to certain sounds, touch, smells, tastes or movements. Particular fascinations or aversions to certain sensory stimuli in the environment may explain some of the more ‘bizarre’ behaviours associated with autism, such as resistance to eating certain foods, extreme reactions to background noise, or fascination with movement. Some people with autism may find it difficult to process sensory information from more than one channel at a time— for example, they may be able to either ‘look’ or ‘listen’, but not both together. We also know that certain types of environments may be a source of stress for individuals with autism. There is evidence that sensory hypersensitivity is associated with higher levels of anxiety (Baker et al 2007), and a heightened perception of visual sensory input in the environment can be exhausting:
Trips to the supermarket are always a chore. There’s too much mental stimulus. I have to look at every shape and texture. Every price and every arrangement of fruit and vegetables.… I’m just really uncomfortable
Part of the social communication difficulties that occur with autism include difficulties interpreting other people’s behaviours and intentions. Having difficulties inferring meaning from social cues can make social situations terrifying. If you can’t properly judge how another person is feeling, or understand how they might behave, then this makes other people constantly confusing and unpredictable. Temple Grandin, writing of her experiences as a person with autism, likened trying to understand the social world as comparable to being an anthropologist on Mars. Difficulties processing language, including delays in being able to process what others are saying can further contribute to this confusion and anxiety. Consequently, difficulties developing relationships can then lead to loneliness and isolation, further diminishing a person’s ability to cope with stress.
Simon Baron-Cohen describes how people on the spectrum have a strong drive to systemise, to find patterns or rules in the social and physical environment. This extreme need for sameness may be a way for people with autism to make sense of the world. It is common for people with autism to make strong associations between things; people become associated with specific places or activities; conversations are scripted; objects stay in certain locations etc. Identifying rules and patterns allows you to predict what is going to happen or how people might behave. Change or variation from these rules or patterns can be stressful, and may result in high levels of anxiety. For someone who finds the social world puzzling, this need to organise, classify and impose structure might be greater; possibly as a way of regaining some of the sense of control and predictability which is missing from their interactions with others.
Supporting individuals with Autism/DD in community settings
Our job is not to fix people but to design effective environments. (Rob Horner)
All people with developmental disabilities, including those with autism and challenging behaviours, must be recognised and treated as equal citizens, have equal access to services, and be supported to live in a manner that best meets their needs. This involves getting to know the person, their unique qualities, building on their strengths and providing opportunities and choices that help each person lead a fulfilling life.
In the last number of years we have had the opportunity to support families and staff working with adults with ASD/DD transition from unsuitable congregate settings into individualised community homes. This was an opportunity to set up individualised wraparound services that catered for the unique needs of each individual. Most of these transitions involved either single occupancy homes or small group homes, and outreach individualised employment/day programs instead of centre-based day services. The aim has been to set up Person-centred individualised services, to reduce individuals stress and their challenging behaviours, and fundamentally to improve their quality of life. The subsequent benefits have been significant reductions in challenging behaviours and stress, improvements in health, reduction in psychotropic medications, improved family contact and relationships, more opportunities and choices, positive interactions with carers—and the subsequent development of positive perceptions of individuals beyond the label of challenging behaviours.
A substantial evidence base in Positive Behavioural Supports (PBS) emerged in the 1980s, demonstrating effective strategies for people with challenging behaviours. Rather than seeing challenging behaviour as a trait specific to the person, functional assessment, the cornerstone of PBS, addressed the question ‘What is the person trying to communicate?’ This approach recognised that without understanding the function or role that behaviours play in communicating the person’s needs, supports are unlikely to be effective. A functional assessment analyses the complex interplay between behaviours, possible underlying medical and organic factors, psychological and mental health factors, communication and social environmental factors. The purpose of a detailed comprehensive functional assessment is to understand the factors causing the person’s distress. Challenging behaviours always happen for a reason and are usually signs that the person is stressed and not coping in their environment.
It was clear from his behaviours that John was unhappy in his service. He lived in a crowded, noisy environment and attended another loud, crowded group service during the day. There were high rates of severe challenging behaviours at busy meal times, when things didn’t happen on time, when others around him were stressed, when people didn’t respond to his requests, when activities were cancelled and staff rosters changed. John wanted peace and quiet, help when he needed it, more of the activities he enjoyed, and more time with the people with whom he had built relationships. Therefore, rather than focusing on fixing problem behaviours, positive behaviour supports focused on the need for the people around him and for the physical environment to change to meet John’s needs.
Recommendations to support John included rescheduling to avoid problem contexts, finding out what made life worth living for John and giving him more of this, helping him cope with the sensations his emotions caused and understand why he felt that way and teaching him alternative ways to communicate his needs. These strategies were designed to reduce stress and replace or make the need for challenging behaviours obsolete. But changing existing supports can be particularly difficult in the context of autism and in the context of large institutional settings. John had rules and patterns that were strongly engrained in the existing context of his living environment. Moreover, what John really needed was a better life. To reduce his stress and improve his quality of life he needed an individualised service that embraced an autistic viewpoint particular to him.
The philosophy of inclusion and community participation are accepted ambitions for individuals with developmental disabilities. However, community settings are often the very settings in which people with autism find it difficult to cope. John’s advocates proposed that change was only possible if he could live in his own home, in the community. But there were plenty of excuses why it wouldn’t work: what would happen if he hurt a member of the public, what if staff couldn’t cope working alone, what if he became upset in the car, what if…Some of the concerns from family and staff were paternalistic, but others were real. The challenges and complex needs sometimes associated with autism/DD can make the reality of inclusion and community participation difficult to realise. Thankfully John’s advocates were resolute—but making it work would involve some essential ingredients:
1) A shared vision and an ongoing process of training and support
A lack of understanding of autism can lead to a variety of problems, including the use of inappropriate supports. The wrong supports may lead to ever increasing levels of stress and can ultimately end in crisis situations. Because working with people with autism is so different from working with others with a disability, Autism Awareness training is essential. This training should give carers a better understanding of what the world feels like from the perspective of autism. In addition to generic training there should be a focus on the idiosyncratic needs of the person in the context of their autism. PBS is less about addressing behaviours that challenge per se, and more a process of building a vision for what a good life would be for the person. All of the key stakeholders in John’s life had a shared vision of what a good life for John might look like: what made life worth living, what kind of relationships worked for John, what didn’t work for John. Another goal of PBS is improving coping skills for the individual and the people who support them. People’s perceptions of the causes of challenging behaviours and the impact of using poor behaviour management skills are linked to burnout (Hastings and Brown 2002, Mitchell and Hastings 2002), while self-efficacy or the belief that we have the skills and abilities to manage is linked to better coping skills. On.going training and staff and family supports can have a positive impact on a carer’s perception of effectiveness and therefore self-efficacy.
2) A consultation model that views families and staff as the agents of change
Challenging behaviours occur in real life settings, and so interventions need to focus on building supports in these natural settings. For effective and enduring positive outcomes it is critical the people who already live with and support the individual understand and deliver these supports. Clinical behavioural interventions have a strong evidence base, but can be technically complex, sometimes counterintuitive and often inaccessible to families and carers. In order to be effective therefore, clinical inputs are challenged with translating these strategies so that they can be delivered by an individual’s natural supports in ordinary community settings.
Training staff and families to implement support plans has shown enduring behavioural improvements (McClean et al. 2009). Ongoing collaboration with all stakeholders to review and revise strategies, with an emphasis on evidence based practice, can help maintain supports and prevent crises.
3) Flexible funding and a range of flexible supports and services
Large institutional settings are associated with less choice, less community participation, and a poorer quality of life. A new appreciation for individualised funding within disability services will de-centralise services and enable the development of tailored individualised supports. Single.occupancy homes have the advantage over group homes as the person can exert more control over their environment and exercise more choice. This option is essential for individuals with autism who may experience high levels of stress when living with other people. Changing to more flexible staff support arrangements on an as.needed basis opens up opportunities for more efficient and targeted services.
There may be many reasons why there is a link between autism and challenging behaviours. There is a strong association of stress and anxiety across all ages of people with a diagnosis of autism.
John moved to his community home near his family after thirty years living in a large institution. He had strong advocates who believed in his strengths and abilities and were willing to see the world from his perspective. At first the move was not plain sailing; the changes to his routine were difficult for John but his support staff were determined. Gradually intensive supports were phased out, behavioural incidents reduced and risks were no longer worried about. Life still throws him curve balls: staff changes when familiar staff are sick, bad weather means sometimes activities get cancelled, crowded, noisy places in the community still cause him stress. But now John has more control over his life, he has positive relationships with the people around him, he chooses where he wants to go and what he wants to do. He knows who is supporting him each day, his house is calm and quiet. And for all this, John also has more money, because living in his own home costs less than living in a large institutional setting.