A paper by Richard Mills, Research Director, Research Autism, London, Research Fellow at the University of Bath and external consultant to The Inspire Foundation in Malta.
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 highly variable nature of autism- or what is increasingly called ‘the autisms’. 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 unsustainable costs.
It is not the purpose of this paper to give definitive answers on the ‘best’ approaches as these will depend on very many factors but we hope to give advice on the right questions to ask.
Claims for treatments offering ‘cure’ or ‘recovery’ may at first sight be seductive – but at present such claims do not withstand scrutiny. Even for less ambitious claims the evidence at present is poor when compared to other branches of science. Even where evidence does exist it may be incomplete or contradictory and what might help one child might not help another. Evaluation may be costly to arrange and studies involving large trials are scarce. Other difficulties involve a range of commercial and other biases, vague treatment goals or practical limitations arising from individual child or family characteristics.
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?’ That will help overcome difficulties, fulfil their potential and provide a good quality of life?
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 one agreed effective treatment. Therapies are frequently based on flawed or false theories or specific ideologies. Misleading or false claims are commonplace and desperate parents are 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 seen as 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 – This might include adaptations or adjustment to say the physical environment or how teaching or services and support are organised.
The concept of a ‘cure’ for autism is controversial. The diverse nature of autism 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.
Some 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 knowledge has yet to be translated into specific interventions.
There are differing views the nature of autism. Is it 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 the strengths that many autistic children and adults possess have long been recognised, this has yet to be embraced by the mainstream research community, where the emphasis is still largely focussed on 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 very 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 how the person experiences the world around them. This will enable us to better understand the nature of the person’s difficulties and enhance social, communication and problem solving abilities and reduce harmful levels of stress.
It is critical to see the world from the autistic perspective and apply approaches based on a mutuality of 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 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 such as sensory processing difficulties and other physical, neurological or psychological disorders. 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’.
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 ways of responding. This approach has been developed in conjunction with the Tizard centre at the University of Kent at Canterbury UK. It is based on research and on direct experience of working with autistic children and adults. It also reflects our many 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 a dogmatic 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 and take account of physical and mental health.
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 and may be very helpful in addressing specific difficulties in communication. We should recognise however that with the right support, autistic children continue to change and develop throughout adolescence and into adulthood, acquiring new skills and maturity along the way. It is simply not true to suggest that by failing to intervene early we may have ‘missed the boat’. 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. 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 relatively 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 nature of physical, emotional and financial demands on the child, parents and carers.
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 in services working with individuals with more complex 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.
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 good 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?
We should also be aware that some of the measures used to evaluate outcomes may be problematic. A reduction in autism ‘symptoms’ may be seen as a desirable treatment aim but has been criticised for heaping more pressure on autistic people to become ‘normal’ and creating great distress, in some cases leading to mental health problems.
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.
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.
Research Autism http://www.researchautism.net/
The pace of increase in the number of interventions now in use in autism has not been matched by the development of the evidence-base, which with few exceptions is characterised by small samples with a high risk of bias. We should campaign for the highest ethical and scientific standards in research.
We should look beyond the claims to evidence and impartial testimony. Be wary of programmes, which are reluctant to be independently scrutinised or which promise ‘quick fixes’. Be particularly vigilant where safety or financial aspects are involved. Remember: if it looks too good to be true then it probably is.
It is known that supporting autistic individuals and their families by understanding their world, reducing their stress and improving their resilience has a critical effect on the effectiveness of all programmes. This should receive more attention. It is also important to measure impact of any programme on the quality of life of the family overall.
We should remember the uniqueness of each person and to celebrate their individuality and difference – and for this to be the starting point and guiding principle of our approach.
About the treatment programme
- What is the explicit outcome (aim) of the programme?
- What does the programme claim to be able to do- what does it predict will happen?
- What is the underlying rationale or philosophy behind the programme?
- How does the programme claim it works?
- How long has the programme been in existence?
- How was it developed and by whom?
- Is the philosophy tied to one particular approach?
- Do you feel comfortable with stated aims?
- Will the programme identify and develop any particular strength?
- Will the programme support the development of personal autonomy – how?
- Is the main emphasis of the programme on elimination of problem behaviours or the development of new skills and interests?
Information about the programme
- Is there written information- such as a brochure and is it up to date?
- How many individuals have been treated and what was the outcome?
- How are outcomes measured?
- Does the programme publish all data –including unsuccessful cases?
- How are unsuccessful cases dealt with?
- Will I have to stop other treatments or activities if I do this programme?
- Will we have to suspend or modify other family activities?
- Is the programme open to suggestions about improvements from families and other professionals?
- Exactly what is involved for the child/adult and family (processes and procedures)
- Is there a complaints process?
- Have there been any complaints about the programme or legal disputes?
- What is the length of the course of treatment?
- How much parental time is involved daily?
- How much professional time is involved daily
- Will it be in the home or a special environment?
- Is the program able to integrate other approaches? If so what examples of this can they provide?
- Does the programme use techniques that are
- Painful or hazardous?
- Distressing for the child?
- Socially unacceptable (e.g. based on punitive sanctions or on restricting liberty?)
- Illegal (e.g. some forms of physical interventions including restraint, confinement, seclusion – or use of illegal substances)
Credentials of programme staff
- What is the background of programme director and any staff?
- What are the qualifications of the programme director and any staff?
- What is the experience of the programme director and any staff with individuals with autism? Can this be verified?
- Does the programme have experience and expertise working with similar children to my child?
- Is the programme carried out under licence or by agreement from elsewhere?
- If so what are the links with the main programme?
- Is there co-ordination between programme and other professionals (e.g. psychologists, teachers, therapists, doctors, therapists?)
- How much in total does the programme cost?
- Enrolment fee
- Materials or equipment (including renewals)
- Administration charges
- Travel costs
- Follow up or recurring costs such as re registration
- Other additional costs
- Can costs be refunded if the programme is not effective?
Facilities, equipment and modifications
- Will special adaptations or modification to property be involved
- Will special equipment be needed?
Effectiveness and evaluation
- Is there supporting evidence from:
- Other parents or programme participants – including autistic people?
- Research publications in peer-reviewed journals?
- Independent research or evaluation?
- Independent professional opinion?
- Can I talk to other parents who have been involved with the programme?
- Can I talk to others who have undergone this programme?
- Is the programme open about cases where the programme has not worked and the circumstances?
- Does it focus on one specific skill or problem or is it a general approach?
- Is treatment goal individualised- for that particular child or adult?
- Has there been any case where the programme has made things worse -and what were the circumstances?
- Are there any side effects or negative effects of the programme?
- Have there been any known negative or stressful implications for family life?
- What is the attitude of the programme to independent scrutiny or evaluation; and has this been done?
- Has there been any criticism of the programme by users, parents, academics or professionals?
- Is there any follow up?
- How is follow up organised – will I have to pay?
Acknowledgements and thanks
I am indebted to my colleagues the late Lorna Wing and Judith Gould of the NAS and to Gary Mesibov and the late Eric Schopler of Division TEACCH for their thoughts on and contributions to the original paper and to Bernard Fleming and the Scientific and Advisory Committee of Research Autism and in particular Gary Mesibov and Damian Milton for their help with this revision.
23 March 2016