Guidance for Considering a Treatment Approach in Autism
Guidance for considering a treatment approach in autism
A paper by Richard Mills, Research Director, Research Autism; Research Fellow at the University of Bath; Senior Research Fellow CASD, Bond University, QLD Australia; Formerly Director of Research, the National Autistic Society
Revised April 2016
Introduction
For a parent of a child with autism choosing the right approach presents various dilemmas. Obvious questions such as 'what works' and 'what doesn't work' are difficult to answer due to the variable nature of autism. It is therefore important to give advice that will assist in choosing those approaches that might be helpful-at the same time avoiding harmful, ineffective or 'quack' remedies or those involving high or unsustainable costs.
It is not the purpose of this paper to give definitive answers on the best approaches as these will depend on many factors but we hope to give advice on the right questions to ask. Readers should also look at the specific guidance offered by the National Institute for Health and Care Excellence (NICE) in respect of autism in children and adults and the guidance on challenging behaviour
Claims for treatments offering 'cure' or 'recovery' may appear at first sight to be seductive - but such claims do not withstand scrutiny. Even for less ambitious claims the evidence at present is poor when compared to other branches of science. Where it does exist evidence for effectiveness is often contradictory and what might help one child may not another. Evaluation may be difficult or costly to arrange and studies involving large trials are scarce. Other important issues affecting evaluation involve commercial or other bias, vague treatment goals or limitations arising from individual characteristics. It has also been found that results obtained under controlled (laboratory) conditions may be difficult to replicate in real life settings such as schools or the home.
The huge variation found in the autism population means that one size will not fit all. A more relevant question might therefore not be what 'works or doesn't work?' but 'what are the best approaches to use with THIS child?' - to help overcome their difficulties, fulfil their potential and provide a good quality of life?
Choice
Parents face a bewildering array of treatments and approaches. In addition to more conventional 'mainstream' approaches there is now a host of alternatives. These include, but are not limited to all manner of behavioural regimes, drugs, special devices, special diets, vitamins and supplements, swimming with dolphins, stem cell replacement, family therapy, heavy metal detoxification, hyperbaric oxygen and an almost endless list of others including electric shocks, packing in ice - even drugs that have been used in the chemical castration of male sex offenders.
Although many of the countless number of treatment approaches in autism have evolved with the best of intentions, others exploit uncertainty and desperation. Healthcare fraud is big business internationally and parents of children with autism are one of its many targets. Because so little is known about the causes of autism there is no agreed effective treatment. Therapies may therefore be based on flawed or false theories, misleading claims commonplace and desperate parents especially vulnerable.
Approaches in autism broadly comprise:
- Those said to 'cure' or reverse the core symptoms of autism
- Those designed to improve adaptation and social and academic functioning. (sometimes criticised as demonstrating an intolerance of autistic differences)
- Those dealing with specific problems
- Those designed to help with additional or associated medical or other conditions
- Those designed to change the behaviour and attitudes of others – such as a reasonable adjustment, the physical environment and how services and support are organised.
Discussion
The concept of a 'cure' for autism is controversial. Its diverse nature rules out simplistic notions of a unitary condition which can be 'cured'. Even describing autism as a distinct condition is problematic. There are many forms of autism, many different causes and many different treatments or approaches. Autism may in fact be a constellation of different conditions and the description ‘the autisms’ is increasingly used.
Some highly specific forms of autism may have a clear genetic or metabolic basis and be amenable to medical treatments – such as PKU*. But in the majority the cause is unknown and there is no one best treatment.
It is now accepted that autism results from early neurological development and is not related to parenting or attachment. It is known that genetic factors are important but this has yet to be translated into specific interventions.
There are differing views on its nature. Is autism a disorder to be cured and treated –or a difference to be accommodated? In fact, the concept of 'cure' is anathema to many individuals on the spectrum who do not wish to be 'cured', emphasising the uneven profile of autism, with strengths as well as difficulties, arguing instead for understanding, acceptance and reasonable adjustment.
Although these strengths have long been recognised this view has yet to be as widely embraced by the mainstream research community, where the emphasis is still largely focussed on the study of ‘symptoms’ or in finding the causes of autism in order to prevent the condition or to offer treatment. The current efforts to understand gene behaviour is an example of this.
Research into the causes of autism is of course important but an equal emphasis is needed on ways of helping those with living with autism now. The aim must be to .offer help in the most timely, compassionate and ethical way while we continue to open our minds to the nature of autism and new ways of helping.
* Phenylketonuria (PKU) An enzyme deficiency present at birth that disrupts metabolism and causes brain damage. This rare inherited defect may be linked to the development of autism.
Does anything help?
Most supportive evidence points to an individualised approach that is based on empathy for the person and seeks to enhance social, communication and problem solving abilities and reduce harmful levels of stress.
We need to try to see the world from the autistic perspective and apply approaches based on a deeper and mutual understanding that are rational and ethical- which respect the right of the individual to be different – yet recognises and deals with distress and offers practical help. We should encourage and motivate the person to develop their interests and strengths rather than focus on 'deficits'. This will mean offering opportunity for development while supporting emotional stability.
We must recognise the importance of the physical environment and the impact of other conditions. These would include sensory processing difficulties and other physical, neurological or psychological states, in particular stress and anxiety. These should be assessed and treated as they may actually be more significant in terms of education and development than the core features of autism. If a child is in pain he will not be able to concentrate on his school work. If a child is distressed by sensitive hearing he may exclude himself or behave in ways seen as 'difficult'. If a person is under constant stress life will be intolerable and learning minimal.
An 'autism friendly 'way of thinking about autism, 'the SPELL framework'
The National Autistic Society does not endorse any one specific approach but has developed a framework for understanding and responding to autism, which can also serve as a context for applying other approaches. This approach is based on research and on direct experience of working with autistic children and adults. It also reflects our many conversations and consultations over the years with colleagues from around the world and with autistic people and their families.
We emphasise that this is a framework and not an approach.
We have found it has helped to make the autistic experience more accessible and as a means of problem solving and choosing approaches that are specifically suited to the individuals circumstances.
The main pillars of this framework are interlinking and comprise both ethical values and practical elements. They are always applied on an individual basis.
Structure is recognised by society in general as helpful in organising oneself and making the world more predictable. Our use of diaries and planners, timetables -even watches- help us to make sense of the world and organise ourselves. This is particularly important in autism where the person may need extra help. There is evidence from research of the value of structure in educational, social and work settings- but structure can take many forms. The greatest care must be taken to ensure that this is used in a way that gives control to the person, to help them to predict events and to organise their time and expectations-thereby reducing chaos and stress. In autism the aim of structure is to help the person to manage autonomously. Structure helps to reduce stressors associated with uncertainty or the processing of language.
Positive approaches and expectations involve a focus on the person's strengths and interests- offering encouragement and help to achieve goals. We have high expectations of what can be achieved but recognise the difficulties. For example, if a lack of self-confidence and self- esteem is a problem, this approach also includes more positive ways to think about ones-self and situations.
Empathy is the ability to see and respect the autistic perspective and what is important to that person as a basis for understanding communication, distress and motivation. It can also include teaching how to understand the emotions of others and to develop mutual solutions. Developing empathy for the way the person experiences their world is more likely to result in an ethical and effective approach
Low-arousal is to recognise and deal with harmful stress- reduce confrontation and address any sensory needs and environmental issues. This aspect of the framework seeks to recognise the role of physiological arousal and to seek to regulate and reduce harmful levels. It underpins all interactions with the person. As with structure, low-arousal approaches reduce chaos and help the person gain control over their environment and emotions.
Links with parents and other agencies and key supporters are important to ensure stability and consistency of approach.
A fuller description of the SPELL framework is available on the National Autistic Society website at
We believe that an effective programme for autism will broadly incorporate the components of the SPELL framework. A parent or professional may wish to have these in mind when considering a specific approach.
Making a decision
Practical and philosophical issues and the place of research
Most specific approaches in autism claim to improve compliance, enhance social communication, improve adaptation and functioning and reduce behavioural problems - but the goals of some programmes may be contentious or contradictory, increasing competence in some areas while making things worse in others. This may be due to personal stress or the imposition of 'non-autism friendly' approaches, learning styles and coping strategies.
The current emphasis on very early intervention appears logical but can overlook the fact that with the right support, children with autism continue to change and develop throughout adolescence and into adulthood, acquiring new skills and maturity along the way. Some of this will occur naturally with age but care should always be taken to reduce harmful stress. It is simply not true to suggest that by failing to intervene early we may have 'missed the boat'. The evidence around early intervention is very mixed, with some children doing well and other not. Also by listening to autistic adults we can better inform our approaches with children.
The low spend in research into interventions is reflected in the poor overall quality of research and the relatively low level of evidence for most approaches and high risk of bias. This area warrants more impartial and well-designed scientific studies but we should also look at existing studies and heed what is already known- especially where problematical, unethical or unhelpful. The autistic voice is also important, and until recently this has been largely lacking.
Regardless of the specific approach there is increasing interest in the impact of stress on the lives of autistic people and their families. This has important implications for the effectiveness of any approach. Some treatment approaches may even increase stress levels because of the intense nature of demands on the child, parents and carers- or their cost.
It is also of great concern that programmes may persist even after they have been shown to in ineffective or hazardous or doing more harm than good. In such circumstances parents may become 'burnt out' and unable to comply with agreed methods- even 'blamed' for failure.
Staff working with individuals with more challenging behaviours or needs may similarly suffer from 'burn out' and high levels of stress and will need high levels of support from knowledgeable colleagues.
Of the many claims made for treatments for autism, we should be especially wary of those offering 'quick fixes. Potentially, any treatment that has not been properly verified is unethical, especially if it involves a child who may have little say in the matter. This is particularly so where treatments are costly, have side-effects or may be hazardous or impact on individual liberty.
Evidence – a much misunderstood term?
So what is evidence? Anecdotal accounts or 'cherry picked' examples of success may be important but are not evidence. Self-promotion or unattributed testimonials should not be confused with evidence and may even serve as a warning to be wary.
Where an evaluation of a treatment is not independent– or is based on a small number of participants, an impartial opinion is required. One way of achieving this is for a bona-fide research trial to be set up, usually under the auspices of a respected university or similar institution. Here the ethics, including risks and methods are independently scrutinised.
At the end of the trial the results are reported and may be submitted to an academic journal where they are examined by experts. This is called peer-review. If accepted, the findings and any limitations or problems can be published and will add to the evidence. A participant testimony may sometimes add value to this.
Evidence-based or evidence-supported?
It is important to differentiate between different types of evidence. In conventional treatment trials evidence will usually be obtained by comparing the effects of a particular treatment on a group of participants with defined needs or characteristics with others who receive either no treatment or a different treatment.
Ideally participants should not know who has received treatment and who has not- known as 'blind'. This general approach known as evidence-based was developed originally in medicine to measure the effect of a specific treatment on numbers of similar individuals. This is generally a sound position to adopt and although there may be particular ethical and practical challenges in applying this model to social research, these are not always as insurmountable as they are sometimes made out to be.
A variation is an approach said to be evidence-supported – or empirically-supported. This is a more individualised approach, which brings together various strands of evidence coming from research and reports from people with autism, patient choice and practice to see how they can be combined to work with the specific needs of a specific individual at a specific time.
In this way unique characteristics and circumstances can be brought together as part of a personalised programme - important in autism. The ethical and practical benefits of this approach should not overlook the limitations. We should be alert to the dangers of highly experimental and controversial treatments, potential bias and placebo effects. We also need to know much more about the moderating and mediating aspects- why some approaches help some people but do not help others. What works for whom?
Trusted information
Working with the NAS and leading universities, the UK charity Research Autism has established an online information service, which seeks to provide impartial trusted information about interventions in use in autism. This service has received the National Health Service seal of approval called the Information Standard for the quality and credibility of the information offered.
Where evidence is not available from peer-reviewed research papers, opinion is generated by experts, including those with autism, reflecting their expertise and experience.
Information is presented at three levels of complexity and a ranking system has been developed for people who like an 'at a glance' overview.
This is a work in progress and depends on feedback to improve the quality of information available.
Research Autism also seeks to identify gaps in research that are of importance to the autism community and where possible address these.