Week 5: Addressing challenges: approaches to intervention

This week opens by considering the goal, sought by some people and vehemently rejected by others, of a ‘cure’ for autism. Interventions, the main focus of this week, are presented not as ‘cures’, but as procedures to help autistic people overcome challenges in order to promote development and quality of life. The framework for evaluating interventions in relation to evidence is explained. A small selection of key interventions are outlined, including some recent developments in the field.

Now watch the following video in which Dr Ilona Roth introduces this week’s work.

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ILONA ROTH:

This week, you'll be looking at interventions-- methods to help autistic children and adults and their families overcome challenges that undermine development and quality of life. Some people with autism, especially more able individuals, are uncomfortable with the idea that they need help. And it's important to recognise this viewpoint. However, for many individuals and families, finding effective interventions is crucial.

You'll look at some recent work on optimal outcomes. The finding that early intensive intervention may help a small proportion of individuals to outgrow their autistic symptoms. It's interesting that even this apparently promising finding invokes debate. For instance, you'll hear Alex explaining that his autism is an important part of his identity that he wouldn't want to lose. Unfortunately, the autism field has been periodically afflicted by misleading claims for miracle treatments. And some children have suffered harm from these approaches.

But how can we decide what really works? You'll been reflecting on the principles involved in evaluating interventions and then considering the pros and cons of a range of them. I find the ongoing developments in interventions for autism encouraging. Towards the end of this week, you'll read about some recent approaches, including a programme for parents to help develop their children's communication skills and a number of promising IT based apps and tools. You'll hear again about Iris Grace whom you've encountered earlier in the course. She apparently progressed a lot when Tula, a Maine Coon cat joined the family. Consider her mother Arabella's arguments for animal assisted interventions in light of what you've learned during this week.

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By the end of this week you should be able to:

• appreciate contrasting views on ‘curing’ autism
• understand what is meant by ‘intervention’
• appreciate the importance of interventions being evidence-based
• understand broad principles for evaluating interventions
• be familiar with key interventions and recent developments in the field.

The first priority for many parents of an autistic child or adult is to secure help and support. Some parents, and clinicians too, go further, seeing autism as something to be ‘cured’ or eradicated. An objection to this idea, from a neurodiversity perspective, is that autism should be seen as a difference, not as an illness or disability which needs ‘curing’. Even if aiming for a cure is seen as acceptable by some, since autistic children’s communication, social and thinking skills start to diverge from the typical developmental pathway at an early stage, reversing these changes poses a big challenge.

Some recent research does provide provisional evidence that a small proportion of autistic children achieve an ‘optimal outcome’ in adulthood (Fein et al., 2013). This means that their symptoms have modified to such an extent that they no longer meet the diagnostic criteria for autism, though they may retain subtle differences in thinking style. The research suggests that such an outcome is most likely following early intensive treatment or intervention. However, it is not yet clear what characteristics distinguish those who achieve an optimal outcome from those who do not. You will read more about this in Week 7.

Of course, the idea of an optimal outcome could also be seen as disrespectful to autistic people – who is it that decides what an ‘optimal’ outcome is? Alex, whom you have met in earlier weeks, has overcome many challenges while growing up, and leads a full life, studying, working and driving his own car. In this clip, he reflects on strengths that are part of his identity as an autistic person.

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ILONA:

Now when people think of autism, they often think of problems. What do you think of that attitude?

ALEX:

I think-- how do I describe? I think-- I think it gives you some problems, but it also gives you strengths. So I think if they invented a cure for autism tomorrow, I wouldn't have it. Because what would happen to my math skills? What would happen to all my interests? There'd be gone, wouldn't they, maybe?

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More able autistic individuals may be more likely to oppose the idea that the differences which make them who they are, need to be removed. And some may even reject the need for any form of help to address their challenges. Parents of more severely affected children, who face profound challenges and difficulties for themselves and their family, are more likely to seek help, and perhaps even to pursue recovery. However, this differentiation is not always correct. The journalist Charlotte Moore, who has two children with a severe form of autism, wrote:

Charlotte prefers to accept her sons’ autism as a different way of being, while acknowledging that there are challenges which it would be desirable to overcome.

Arabella, mother of Iris Grace, expresses her views in this clip.

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ARABELLA:

I don't like the word cure. I think it promotes this idea that it's something that being on the autistic spectrum is something undesirable and something that we need to fix. I don't think it's a problem that needs to be fixed.

I think it's something that we need to help them fit into our world, that's for sure. I mean, they need to learn skills so that they can function in our society. We need to make it so that they can go to the supermarket if they want to. And that may take many months of helping them, even if it means setting up a little mini supermarket in your sitting room and practicing as much as you like.

You know, there are certain things in life you can't get away with not doing. You know, if he wants to take public transport, that needs to be sort of dealt with. There's so many parts of life which you're never going to be able to change.

You couldn't make a whole city become autistic friendly. I know they're trying in certain cities. But you know, it's pretty unrealistic. But what I would like to see is autism being embraced and people seeing the positives and seeing the potential.

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Even without help, an individual’s profile of skills and behaviours is likely to change over time, and in adulthood some difficulties may become less severe or apparent. However, key symptoms and difficulties typically persist and may even become more marked, with an enduring impact on the person’s lifestyle and well-being. It is generally believed that identifying autism and intervening as early as possible is most likely to have a beneficial effect (Howlin et al., 2009). An intervention is a technique or procedure to support and help children or adults with autism to engage with others and to thrive, for instance by helping a non-verbal person to communicate, or a highly anxious person to reduce their anxiety. While this means adapting to the neurotypical world, it is equally important that the neurotypical world becomes more accepting and tolerant of autistic behaviour, and better adapted to autistic needs. Organisations like the National Autistic Society (NAS) are active in promoting this goal. You will read more in Week 8.

A range of interventions has been developed, targeted at different problems and different groups. Many of these interventions are for children, especially those with low-functioning autism including marked language and intellectual disabilities, and are designed for use in home and educational settings. Although individuals with high-functioning autism or Asperger syndrome have better language and intellectual skills, they may face challenges in interacting, behaving flexibly, and in other everyday skills, which also call for support throughout life. Some interventions lend themselves well to supporting these more able groups, and also the needs of adults.

Before they are tried out, interventions should be evaluated in terms of their rationale, safety and likely chances of success. Careful evaluation of evidence is fundamental to the framework of sound clinical practice known as evidence-based practice. Whether altered behaviour or improved skills learned through an intervention will readily generalise i.e. carry over to contexts different from those where they were acquired, and whether they will apply to others with autism too, are further important considerations. Before looking at what goes into an evaluation, we will briefly consider the risks of intervening without adequate rationale or evidence.

From time to time, interventions for autism are proposed with an odd or unconvincing rationale, little or no evidence, and often with grossly exaggerated claims for success. Parents of autistic children may be highly vulnerable to claims for a ‘cure’, ‘recovery’ or dramatic alleviation of symptoms, and understandably, they also feel empowered by doing anything they can to help their child, even if only on the principle of ‘try anything if it might help’.

One such approach, known as packing therapy, has been promoted in France, where some ideas about autism still remain far from those that are widely accepted elsewhere. The child is first wrapped in towels soaked with cold water, and then with blankets to warm the body. The claim is that this develops consciousness of bodily limits, which, according to proponents of the therapy, is lacking in autism. There has been widespread condemnation of this ill-founded practice, which has been described as ‘a form of child abuse and a gross violation of basic human rights’ (Research Autism, 2018).

Another ill-conceived approach assumes that autism is caused by excessive levels of toxins such as mercury and lead in the blood. The ‘therapy’, known as chelation, involves administering substances to eliminate the ‘excess toxic substances’ from the bloodstream. However, chelation has proved to have extremely harmful side effects and in 2005, an autistic child who was being treated in this way died of a cardiac arrest. In 2013, the National Institute for Health and Care Excellence (NICE) published the following statement:

These two techniques provide just two examples of highly dubious interventions. Imagine you had a child with diabetes, and someone offered you a previously unknown medication which they claimed provided a highly effective cure. Before trying out such medication, you would want to know how and why the substance was supposed to work, you would need evidence that the substance actually worked, and assurance that it did not have harmful or dangerous side effects. You would also want to know more about the person promoting the cure, such as whether they had a financial interest in it. The importance of addressing questions like these applies equally to autism as to treatments for medical ailments. Interventions for which the rationale is unclear, and which lack proper evaluation or ethical screening are quite rightly avoided or treated with great caution.

Deciding whether an intervention works might seem like a relatively straightforward process of trying the approach with one or more autistic participants, to see if it helps to address particular challenges or difficulties, or promotes ‘positive’ aspects of behaviour. However, evaluation is never this simple or straightforward.

There has been increasing emphasis in recent years on the need for interventions to be fully evaluated, to avoid harm, and to comply with the principles of evidence-based practice. In an ideal situation, evaluation should commence with relatively small-scale informal tests, and build up to more formal and wide-ranging evaluation, as outlined next.

The initial stage of evaluation is an exploratory or pilot study in which the proposed intervention is tried with just a few autistic individuals. Of course, full ethical safeguards must be ensured, and the participants (or parents on participants’ behalf) must give their consent to participation.

If a pilot study suggests a positive effect, a more formal, small-scale evaluation can be carried out. Again this may involve just a small group of participants, who are observed for a period before the intervention, while it is carried out, and for a period of time afterwards. A common procedure for this is a multiple-baseline study. Each participant is observed for a period before the intervention to establish a baseline for the behaviour to be targeted by the intervention e.g. how often the child communicates verbally. The length of the observation period is varied such that the intervention start date is staggered across participants. This makes it easier to ascertain that any change, such as more verbal communications, is due to the intervention itself. If all children started the intervention simultaneously, they might all experience another new factor (e.g. a change of teacher) which could be causing any changed behaviour.

A controlled study is a more rigorous and formal evaluation of an intervention similar to a research experiment (see Week 1). The study typically involves two groups of participants on the autism spectrum, both larger than those used in pilot and small-scale evaluations. One group (the experimental or intervention group) receives the intervention, and the other (the control group) does not, or they receive another intervention already known to have some effect. The latter procedure is known as ‘treatment as usual’.

Ideally the two participant groups in the study should be matched on criteria such as age, IQ or severity of symptoms, before the intervention begins. After the intervention period, the two groups are compared to see if there are any differences. This comparison requires a specific measure of the skills or behaviours that the intervention is designed to target, known as the outcome measure.

Another ideal procedure for a controlled study is that participants are assigned randomly to treatment and control groups – much like drawing numbers out of a hat. This avoids factors which might bias the outcomes, for instance, that the participants in the intervention group are more high-functioning than those in the control group. The term randomised control trial (RCT) refers to a full-scale controlled evaluation involving random allocation to intervention and ‘treatment as usual’ groups, and a relatively large number of participants. RCTs are widely used to evaluate new medical interventions, and are also considered the ‘gold standard’ in the autism field. But to date, few evaluations of autism interventions have been evaluated as far as the RCT stage. We will consider why next.

Taking a new intervention through a rigorous series of evaluations is usually lengthy and costly – to borrow another example from medicine, think of how long a malaria vaccination has been in development. In the knowledge that, in autism, intervening early in development is best, parents, teachers and even clinicians may feel that they cannot wait for the full outcomes of clinical trials. They may therefore resort to procedures known to be broadly helpful and not actively harmful. Unfortunately, some parents may also feel driven to try extremely risky procedures.

Another problem is the heterogeneity of autism. It may genuinely be the case that an intervention works for some individuals but not for others. In a formal control study or RCT, where relatively large participant groups are compared, there is the risk that benefits experienced by a small subset of the participants receiving the intervention are ‘averaged out’, such that the intervention does not appear to be beneficial overall.

As you will see, some well-established treatments depend crucially on adapting the goals and procedures to the needs of the individual child, making it very difficult to specify standard group procedures and outcome measures as required for an RCT.

Note: We have recently (6 October 2020) been advised that the link to Research Autism is no longer available. We are currently rewriting the activity to reflect this, so please bear with us. This won’t impact on your progress and you’ll still be able to earn your badge without completing this activity.

A UK information service, Research Autism, has a database offering accessible and impartial guidance on as many as possible of the known interventions for autism, including a description of each approach, and a grading across the range from strongly positive to a warning that the intervention could be harmful (Research Autism, 2018). The evaluations, made by experts commissioned by Research Autism, are a valuable and authoritative source, whether for researchers and practitioners seeking a quick update, or for parents and individuals with autism, who may not have access to the full academic literature concerning evidence for interventions.

Activity 3 Getting to know the Research Autism website

Timing: Allow about 10 minutes

Use the following link to access the list of interventions which have been evaluated by Research Autism. Have a look at the description and evaluation of the different interventions and locate ones which have these symbols next to them:

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These are three of the symbols used on the Research Autism website to evaluate interventions. The first symbol shows two green ticks side by side. The second is a grey speech bubble containing a question mark. The third symbol is an orange triangle containing an exclamation mark.

Hover over the symbols on the website and note down what they mean. Here's the link:

Our Evaluations of Autism Interventions, Treatments and Therapies

Answer

Two ticks next to an intervention indicates that there is ‘strong positive evidence’ to suggest the intervention is effective. If you click on the specific intervention, you will find out more about that intervention and its benefits.

A question mark means that the evidence for the intervention is mixed or insufficient.

An exclamation mark indicates that the intervention risks physical and/or psychological harm to people who experience it. Research Autism advises that the procedure should not be used.

The next sections outline some well-known and widely used interventions for autism, followed by some recent developments in the intervention field. Note that while none of these interventions is considered risky in application, the level of evidence varies, and at least one of these approaches attracts widely polarised views among practitioners. Most of these interventions are included in the Research Autism evaluation list, and you will find reports on the others elsewhere on the Research Autism website.

TEACCH is the acronym for the Treatment and Education of Autistic and Related Communication Handicapped Children. The approach was introduced in the 1970s when the term ‘handicapped’ was not deemed unacceptable as it is now. TEACCH has been effectively used in many countries since then and is recommended by the NAS and the Autism Society of America (ASA). It is a ‘whole person’ approach in that it aims to support many aspects of functioning, including learning, behaviour, social and communication needs, and may be used across different settings (at home, school, in respite services and other locations) as well as across the person's lifespan. It can also be successfully adapted for more intellectually able individuals, and used in adult settings.

The TEACCH framework aims to maximise an individual's strengths, drawing on how autistic people tend to think and to engage with the world. Here are some key principles:

• emphasis on structure, including physical structure of the person’s environment and clearly defined routines
• harnessing skills; for instance visual skills and good memory for factual information mean that a visual schedule indicating what activities will happen, where and when, is likely to be an effective tool
• evaluation of individual support needs on a regular basis, including use of other interventions where necessary to complement the approach
• empowering parents by encouraging their full participation
• emphasis on developing independence, and generalising from learning experiences in order to master a range of everyday situations.

Maximise

Figure 1 Clear structure and visual information provide the basis for a planner to help a child with their day at school.

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This image shows a boy's planner with the heading 'Tuesdays - Autumn Term'. It shows all of his school lessons and what he'll be doing, along with any notes about what he needs to remember throughout the day.

Figure 1 Clear structure and visual information provide the basis for a planner to help a child with their day at school.

TEACCH has a clear and appropriate rationale, in that it addresses the characteristic need for structure and routine in autism. Research Autism reports a ‘small amount of high quality research evidence for TEACCH’, pointing to an impact on social communication, cognitive and motor skills. However, to date there have been no RCTs or large-scale evaluations. The fact that it is specifically tailored to the challenges experienced by an individual child or adult means that it is not easy to identify outcome measures appropriate for all participants in a study, nor to set up control groups. It is likely that outcomes will be affected by the skill and expertise of the professionals involved. There is also evidence that when or if TEACCH is withdrawn, an autistic person may regress in their behaviour and anxiety levels, or be unable to generalise what they have learned to new contexts.

A quite different approach to intervention originated in the work of Ivor Lovaas, described in Week 1. He in turn drew on the work of mid-twentieth century psychologists such as B.F. Skinner, who proposed that in animals, including humans, the repertoire of behaviour can be modified and new behaviours learned, using operant conditioning. Operant conditioning assumes that active behaviour 'operates' on the environment, with consequences that modify whether the behaviour is repeated in the future. If the consequences are rewarding, the behaviour is more likely to be repeated – known as reinforcement.

Lovaas’ approach evolved to become Applied Behavioural Analysis (ABA), an intervention for autism in which operant conditioning principles are used to reinforce ‘desirable’ behaviours (e.g. more speech and communication) and reduce ‘undesirable’ behaviours (e.g. aggressive or repetitive behaviours that may be injurious or considered antisocial, such as head banging, destruction of objects or taking clothes off in public).

In ABA the child’s behaviour is analysed into components that are tackled one at a time. If the target behaviour is one that it is identified for the child to learn, for instance uttering a word or phrase, the reinforcement needs to be a positive outcome for the child, such as a favourite snack or some non-edible reward. If the behaviour is something that it is thought should be discouraged, for instance a tantrum, then withholding reinforcement (e.g. by ignoring the behaviour, saying ‘no’ loudly and firmly, removing the child from the context or reinforcing alternative behaviour) should eventually result in the behaviour disappearing.

The first stages of ABA may focus on teaching self-help and receptive language skills (i.e. language understanding), non-verbal and verbal imitation, and the foundations of appropriate play. The second stage emphasises the teaching of expressive language and interactive play with peers. Advanced stages involve the learning of early academic tasks, socialisation skills, cause and effect relationships, and learning by observation. The intervention might seem particularly relevant for young children who are lacking basic communication skills and everyday capabilities. However, children with higher initial intellectual ability and less pronounced autism are also said to make good progress, especially following early behavioural intervention. ABA is also used with some autistic adults.

If at all possible parents are trained to carry out ABA at home, albeit supported by trained therapists and consultants. Classic ABA approaches stipulate that 40 hours per week should be spent on ‘shaping’ the child, making it expensive for parents or local service providers to employ trainers. The commitment for parents is also substantial.

ABA has been difficult to formally evaluate for two reasons. Firstly, like TEACCH, it is a highly individualised approach, with outcomes that are tailored to the behaviour of an individual child. Secondly, ABA is no longer a single unified approach, but rather a set of varying procedures, some of which have also been incorporated into other types of intervention.

Attitudes to ABA among families and professionals are sharply divided. Proponents of the approach argue that it is one of the few really effective treatments, which can make dramatic improvements including the potential to develop language skills in non-verbal children. An early intervention based on ABA principles, known as Early Intensive Behavioural Intervention (EIBI), has been evaluated as particularly effective (Peters-Scheffer et al., 2011). One criticism of ABA claims that it is a simplistic tool, which changes ‘surface’ behaviour rather than underlying thought processes. The fact that parents and therapists decide what behaviour should be shaped has led to the further criticism that ABA is ‘adult-directed’, taking away the child’s autonomy, choice and dignity (Devita-Raeburn, 2016). ABA also requires a level of dedication and expense that makes it inaccessible to some families.

Bear these contrasting viewpoints in mind while watching this clip illustrating how a young boy called Joe is helped with his communication skills by therapists using Applied Behavioural Analysis. Watch this clip now.

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REBECCA MOSELEY:

Now let's just see.

JOE:

I can have video DVD.

REBECCA MOSELEY:

You'd like that, would you?

JOE:

Yeah.

REBECCA MOSELEY:

Sit down.

SEAN RHODES:

The programme that we're working on with Joe is based on an approach called applied behaviour analysis, which is the scientific study of behaviour in terms of the behaviours that people will use, the responses in the environment that will maintain those behaviours, and understanding whether or not those behaviours are what might be deemed functional or appropriate.

REBECCA MOSELEY:

Joe, have we crossed anything off the menu?

JOE:

No.

REBECCA MOSELEY:

Fantastic.

JOE:

We are having a good day today.

REBECCA MOSELEY:

OK, Joe. You can finish your biscuit now.

ANDY:

He's gone from being a child who could hardly communicate at all-- well, he could, but not really with functional speech-- to a child who's very sociable and talks, and we can't stop him from talking now.

When we first started, we had little temper tantrums, and that's really the way he got his point of view across.

REBECCA MOSELEY:

Go on. Your go.

JOE:

Whoa. My buffers! Bust my buffers! Six.

REBECCA MOSELEY:

Go on, then.

JOE:

One, two, three, four, five, six.

SEAN RHODES:

What we did with Joe when we first started with him was we identified which specific behaviours were affecting his ability to, firstly, interact with other children and other people and specifically looking at what his language deficits were.

- I'm a cheeky boy, am I? What's going to happen to you? Get your tokens off Becc's first rule, OK?

JOE:

But you're a cheeky boy.

REBECCA MOSELEY:

Joe earns tokens for doing things appropriately, so for doing things straightaway or, for example, walking from school to the car without running off ahead and staying with me, for example, or for-- if it's carpet time at school and putting his hand up. Rather than just calling out, putting his hand up and waiting for the teacher to ask him what he wanted to say.

SEAN RHODES:

So what we identified was the kind of activities and object, games, responses that he finds reinforcing and enjoyable. And we taught him how to ask for those things. So that's how we got access to them.

REBECCA MOSELEY:

What does it say?

JOE:

Well, four and five is nine. One, two, three, four, five, six, seven, eight, nine.

REBECCA MOSELEY:

I don't believe it!

JOE:

Yeah!

REBECCA MOSELEY:

How lucky are you? Oh, I just don't believe it.

Joe loves playing Snakes and Ladders with me, and that's because I was trying make it really, really fun and really reinforcing for him, but, at the same time, being able to bring in lots of math targets, as well, and other language skills.

What's going to stop me from winning?

JOE:

The snake.

REBECCA MOSELEY:

What number is that snake on?

JOE:

98.

REBECCA MOSELEY:

So how many do I need to get to land on 98, on the dice? How many spaces?

JOE:

Two.

SEAN RHODES:

It's all very well, us teaching children lots of language. But if they don't have the social situations where they can go and apply those skills we've taught them, then, really, it's a bit pointless teaching them. Playtime is a time when most children get the opportunity to really practise their language. So Joe needs to be able to go out and interact with children at playtime rather than being stood on the periphery, observing.

ANDY:

It has a huge impact on a family running an ABA programme, because we have people working with Joe all day, every day. So Joe has this big entourage of people, and, initially, we started with them working in the house. So it's quite a big thing having people in your home all the time. So it's not easy in the sort that we have another child, as well, and it's not easy for her. But because of the huge progress that Joe's making, it is definitely worth it.

SEAN RHODES:

Right. So you were watching Star Wars 2.

JOE:

What were you watching?

SEAN RHODES:

Well I wasn't watching television Oh was playing my guitar.

JOE:

Yeah.

SEAN RHODES:

Do you play any instruments?

JOE:

I haven't got any.

SEAN RHODES:

What would you like to play?

At the moment, he's doing very well on his conversational targets. He understands how to have a conversation. The difficulty for Joe at the moment is dealing with the speed at which conversations go and the unpredictable nature of conversations, particularly within peer groups.

So you were telling me about rugby. OK. So how do you play rugby?

Well, adults will be far more forgiving within a conversational setting than his peers will be. Hoe needs to be able to think much faster within those conversations.

JOE:

And if you got the ball, somebody grabs you to the ground. And if they don't grab you to the ground, you run, and then you score a try.

SEAN RHODES:

Fantastic. And what you do after you score the try?

JOE:

You say this-- yeah, try!

SEAN RHODES:

That's right. You do.

End transcript

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In contrast to how adults identify the ‘desirable’ behaviour within ABA, approaches have been developed which build upon the child’s own interests and preferences. The role of the teacher or therapist is to prompt or encourage natural communicative behaviours which are initiated by the child. These approaches are known as naturalistic interventions, and they are all, to a greater or lesser degree, child-centred.

The best known and most widely used naturalistic intervention is the Picture Exchange Communication System (PECS).This was devised in the 1990s with the aim of teaching functional communication skills, especially to autistic children with little or no language. Each child is individually assessed to identify objects and activities that he or she finds rewarding, and a booklet or board of small pictures is compiled matching the child's preferences.

The child is then guided through different stages towards the goal of making spontaneous requests for these items, one adult acting as a communication partner and a second adult as the child's physical prompter. As the child reaches for a desired object, the physical prompter then physically guides the child to pick up a picture of the object and release it into the communication partner’s hand. The physical prompter gradually reduces the prompting as the child becomes more independent in selecting pictures of what he or she wants, and exchanging them for the object itself.

Once the child is using pictures in spontaneous communicative exchanges, PECS intervention aims to strengthen this spontaneity and to enhance the child’s ability to distinguish between pictures, increasing the number available to them, firstly from a board and then from a folder. The child is also encouraged to generalise his/her new-found communication skills to different settings and communication partners, to produce more complex communications, and eventually make comments about things they see rather than just requesting things they want.

Watch the following video clip which illustrates the use of PECS in classrooms Queensmill School in Hammersmith. Notice that these children have reached the stage of combining pictorial symbols with phrases such as 'I want', and sometimes saying the sentences out loud. Look carefully at how the communication partners are using PECS in these clips, and keep this in mind for Activity 4, coming up in the next section.

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Transcript

[INTERPOSING VOICES]

INSTRUCTOR 1:

What would you like?

[INTERPOSING VOICES]

INSTRUCTOR 1:

Choose a colour.

STUDENT 1:

I want a car.

INSTRUCTOR 1:

And you're choosing colours?

STUDENT 2:

Yes!

STUDENT 1:

A little car.

INSTRUCTOR 1:

Looking for blue. Good boy.

STUDENT 2:

Yes!

[INTERPOSING VOICES]

STUDENT 1:

I want blue car. I want--

INSTRUCTOR 1:

I want blue car. Good boy.

STUDENT 1:

Blue car.

INSTRUCTOR 1:

Lots of different cars.

STUDENT 2:

Yeah!

[INTERPOSING VOICES]

INSTRUCTOR 1:

Big or small? Big or small? Small car?

STUDENT 2:

Small car.

INSTRUCTOR 1:

I have a big car, a big blue car, and a small blue car.

[INTERPOSING VOICES]

INSTRUCTOR 1:

A blue car, well done. There's your big blue car.

INSTRUCTOR 2:

Now because Oliver has some problems with discrimination, to make it easier for him, I'm putting his bag symbol on the front of the page so it will be easier for him to choose from the items he wants to eat. And as well, we are doing maths during snacks, so I'm putting some numbers for Oliver to request things he would like to eat. I lost one symbol, so will use use this one. OK, Oliver?

I want pictures.

[INTERPOSING VOICES]

OLIVER:

I want pretzel.

[INTERPOSING VOICES]

INSTRUCTOR 1:

What range of ability are you dealing with in this class?

INSTRUCTOR 2:

Say again, please?

INSTRUCTOR 1:

What range of ability?

INSTRUCTOR 2:

We have got different range of abilities. We have got, in fact, three different groups. Children who work at very low p levels. I want pretzels. I want pretzels. How many, Oliver?

STUDENT 3:

Five.

OLIVER:

[INAUDIBLE].

INSTRUCTOR 2:

I want five pretzels.

End transcript

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PECS is one of the few autism-specific interventions to have been evaluated through all of the stages described earlier, including some RCTs. For younger children with little functional speech there are positive findings, especially increased social communication. PECS is widely used, although further research is needed to establish which children on the spectrum are most likely to gain maximum benefit from using it. Unlike ABA, PECS is easy and cost-effective to administer. However, Research Autism stresses the importance of training to ensure correct implementation.

In the last few years, new approaches to intervention have emerged, some building on the classic approaches already described, and others completely novel. A small selection is featured here.

The PACT approach trains parents to work on enhancing the communication and language development skills of their own children, commencing as early as possible after diagnosis (Green et al., 2010). Parents view video footage of their interactions with their child and are taught to adapt their own communications in order to respond with enhanced sensitivity and responsiveness, for instance using eye gaze, sharing, showing and giving to increase shared attention. Parents learn to tailor their language use to the child’s level of understanding and to facilitate child communication and participation, for instance through sequences of actions, repeated verbal scripts and the use of elaborations, pauses, and playful teasing.

In 2010, an RCT (also known as PACT, the Pre-school Autism Communication Trial) reported that children whose parents received the training were using words and gestures more often than those in the control group. In 2017, a ‘follow-up’ study showed that these benefits had persisted. Children also showed enhanced social skills and fewer repetitive behaviours.

The approach is attracting considerable interest because of the substantial number of children involved in the RCT, and the retention of positive outcomes over the longer term. The successful use of parents as therapists also has the benefit of being naturalistic and cost-effective, making the intervention a good choice for low and middle income countries. A culturally appropriate version of PACT is being trialled in India (Divan, 2017). Given the dearth of available specialists in India, the approach was adapted to enable lay people to train parents. Though viewing videos of themselves was challenging for some parents, they came to value the guidance. One mother commented that the approach was ‘making a change in my child, but also making a change in me’ (Divan, 2017). RCTs of the Indian initiative are underway.

There is rapid growth in assistive technology, the use of technology, and especially IT, to help autistic people. This is a massive field, of which only a brief summary can be given here. Smartphones, tablets and computers have all been harnessed to help autistic people deal with problems of daily living, learn social and communicative skills, and in other ways. One important strand is the development of smartphone ‘apps’ designed to help autistic people with daily living skills. For instance, an able young person may become anxious and confused if the bus they always catch to school is late or fails to come. A smartphone app could offer practical actions for such a situation, for example: wait 20 minutes and then call parents at home; check the bus timetable for other possible buses. In video modelling a child or adult learns a new behaviour, such as how to greet a friend, by watching it being modelled by someone on a computer screen. Some more traditional approaches, such as the visual schedule shown in Fig. 1, are now available in computerised versions. Finally, researchers have started investigating the use of robots to teach new skills, on the view that robots provide a particularly accessible medium for an autistic person to learn from. You will find more information about these approaches on the Research Autism website.

There have been some enthusiastic media reports and documentaries about animal-assisted interventions, for instance horseback riding or having a pet in the family home. Advocates claim that contact with animals reduces stress, helping children to focus their attention and communicate better, promoting learning and increased sociability. Arabella, mother of Iris Grace, reports that acquiring a Maine Coon cat, Thula, played a remarkable role in helping Iris to overcome hypersensitivities and anxiety, such as a sensory aversion to certain clothes and fear of water. In this clip, Arabella talks about how Iris changed and developed when Thula joined the family.

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ARABELLA:

I found a breeder in the UK. And eventually, we found Thula, who is the kitten. And they just got on brilliantly. And she helped Iris through all sorts of problems.

So the water, she got in the bath with her. She played at the sink. She even went swimming with her. And it just seemed to solve that problem.

The problem with her clothes, so Iris wouldn't wear tops on the top half of her body at the time. And Thula would sit on her knee and be sort of purring, right up against her tummy. And I think the constant almost like de-sensitization of having that kind of fur against her tummy settled that problem down. So it was like another box ticked.

And then it was other things. Travelling in the car got easier if Thula would come in the car. She rode on the bike.

She just-- she was like this little superhero cat that came with us everywhere and did everything with us. And it changed Iris a lot. We saw so much progression and so many positive changes that it was just inspiring to watch. And then children from our activity club were with Thula, and they loved her. So their families got Maine coon cats as well.

It's not something that-- I think their relationship is one-off, as in it's particularly strong. But it has been replicated elsewhere. And I would certainly recommend Maine coons as a therapy cat.

And I would recommend considering any animal, actually. It may turn out that your daughter or son loves rabbits, or they love guinea pigs and that's the thing. Don't be fixated like I was on, say, a dog or a horse. I'm saying just follow what the kid likes. It could be a rat, you never know.

It was a very cool part of our lives. Because as a parent, you get tired a lot of the time. The therapies that you do, it's every day. It just becomes part of your life. And it was nice to see someone doing it with her that was just doing it so instinctively that I didn't have to put any effort in. It was just like watching them together was amazing.

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A recent scientific overview of animal-based interventions in autism, while recognising that they may be beneficial for some children, concluded that the evidence is as yet unclear. Interpretation of studies is complicated by factors such as small participant numbers, and variations in the animals, procedures, duration of therapy and outcome measures (O’Haire, 2013).

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One message from this week is that no ‘one size fits all’, due to the diverse nature of autism. Increasingly psychologists are advocating a combination of methods, individually tailored to the person’s skills and needs. While many interventions do require training or specialist therapists, some adjustments can be implemented easily by families, schools or workplaces. For instance: removing, as far as possible, sources of sensory distress, such as fluorescent lights or noisy air conditioning; providing a secure place for when the person feels overwhelmed, or a ‘traffic light’ card system so that, at times when they feel unable to speak, they can signal positive or negative feelings with a green, amber or red card.

This clip from Arabella describes some of the strategies she has used to help Iris.

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ILONA:

So in terms of giving Iris Grace the best opportunities to develop and flourish, what's your overall philosophy, and how have you implemented it?

ARABELLA:

To follow Iris. I know it sounds ridiculous because it's a child that needs a lot of help and needs a lot of guidance. But there's a way of following autistic children which is very powerful in getting them to learn.

Say you watch them start off with, you observe all of their behaviours-- good and bad. You'd see what they like, what they don't like, what their good and bad sensory triggers are. And you get to know them far beyond anyone.

You need to be the person that can read them like a book, that completely sees the whole picture, so that you can use all of these little moments where you have got teaching moments, where you have got times when you can connect with them. And you know what will work. You know what you can say to make them laugh. You know what you can say to encourage them.

For example, if I was-- like with Iris, she loves texture. So if I want to get her interested in a particular object, I can just add a bit of texture that she likes to it. There's always ways, even with a child that seems to be blocking you out completely, or making them think you're the cool person to be with.

So you want to do that. You want to create sort of a place for them to be, and that includes you, that makes them think that you're the person they want to be with. You open up this world for them.

So if you know what they love, that's the easiest, that's the key. So fill their world with Thomas the Tank Engine or LEGO or whatever it is that they really like. And use those-- what doctors can say are obsessions-- use those passions as something positive. And use them to teach them.

ILONA:

So in terms of the main, well-known therapies that are out there like Teach and Flex, Floortime and so on, are there any that you've been able to draw on?

ARABELLA:

Yes, I've done a mixture. So it was a mix between at first Floortime and a programme in America that's called Sunrise. So it was a mixture between those two. And it was basically following Iris, seeing what she loved, copying her movements, sitting beside her not opposite her, being on the floor with her, lots of sensory play, lots of things that she could get into and that I could join in with.

And then it was encouraging joint attention. So we used drawing. And then eventually her art came in.

And that was just brilliant, because it gave me an opportunity where she was moving, she was elated and happy when she painted. And then I could drop in information to her. And we could talk about colours, and she started verbalise things. It was these magical moments with them that mean that you can be there with them but you're not putting pressure on them, which I think is really important.

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You should now be able to:

• appreciate contrasting views on ‘curing’ autism
• understand what is meant by ‘intervention’
• appreciate the importance of interventions being evidence-based
• understand broad principles for evaluating interventions
• be familiar with key interventions and recent developments in the field.

Now you can go to Week 6.