Week 8: Reflecting back, looking forward

This week you will think about what you have learned so far, where we are today with our understanding of autism and what the future might hold. Attitudes to and provision for autism are changing, although at different rates across the globe. You will reflect on the changes in countries such as the UK, and consider priorities and challenges for the future, including for lower and middle income countries (LMICs), with a special focus on Ethiopia.

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

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ILONA ROTH:

This final week of the course is your chance both to reflect on what you've learned so far and to think about up and coming issues in the autism field. Among all that you've learned, I'm sure you've been struck by how differently autism can affect people. In fact, some people like to quip that if you've met one autistic person, you've met one autistic person.

Of course, the autism spectrum model does recognise this variation, yet debate continues. On the one hand, autism is viewed as a clinically definable condition, and on the other as part of natural human diversity. Michael Baron, who also featured in earlier weeks, worries that this neurodiversity perspective overlooks how seriously some people, like his son Timothy, are affected.

Another controversial issue is the future priorities for autism research. Respondents to a recent survey thought that theoretical research, as featured in week four, should take much lower priority for funding than research into practical interventions and support. Yet in an ideal scenario, explaining the fundamental basis of autism should translate into practical interventions for those who need them.

How well is autism understood and accommodated in society? Media portrayals in films, television, and so on have certainly helped to increase public awareness, but have also tended to represent specially gifted individuals. Accommodations for autism in society have begun to improve with the various autism-friendly initiatives that are underway.

Finally, this week looks again at the global context. In such a short course, it sadly hasn't been possible to compare autism approaches and services across multiple countries. I hope, however, that looking briefly at a less well-resourced country like Ethiopia highlights not only stark disparities in provision, but also the common challenges facing people with autism worldwide. An Ethiopian project on which I had the privilege to work contributed knowledge and skills developed in the UK, but the knowledge flow was by no means one way. The team learned much from their Ethiopian colleagues.

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

• evaluate how your own knowledge and understanding has increased while studying this course
• appreciate both shared problems and differences in the lived experience and needs of autistic people
• discuss trends and priorities in autism research and support
• identify wider societal issues that affect the lives of those with autism and their families
• understand some of the priorities for autism in low resource settings.

Now try the following activity.

Now we will reflect further on some key themes, ongoing issues and implications for the future.

As you learned in Week 1, knowledge about autism has come a long way in the last 8 decades – including recognition that it encompasses a great deal of diversity. The DSM-IV diagnostic criteria attempted to encompass this diversity by distinguishing differentiating sub-types such as childhood autism and Asperger syndrome (see Week 3, Section 2.2), but this proved problematic because the overlapping symptoms meant that diagnosis could not reliably differentiate between these categories.

The recent DSM-5 diagnostic criteria define autism as a single spectrum but also allow an individual profile to be specified for each person diagnosed. The ICD-11 criteria published in 2018 mirror DSM-5 in many respects, yet do recognise sub-types, differentiating autism with and without intellectual disability. Debate continues about the best way to capture both the shared features and the diversity of autism. Some different perspectives that bear on this issue are discussed in the next section.

The above phrase is used by some autistic people and those who know them to emphasise that each autistic person is uniquely different and needs to be understood individually – within the broad framework of the social, communication and non-social differences that are implied by an autism diagnosis.

As you have seen throughout this course, first-hand accounts from autistic people provide important insights into the ways autistic individuals see the world, although inevitably these are limited to those who are able to articulate their self-awareness and describe their experiences. These accounts enable autistic people to voice their feelings and ideas, highlighting the diversity of autism from an inside perspective and qualifying insights from research and clinical practice. However, the individuality of these accounts means that no single personal account can represent everyone on the spectrum. For instance, Temple Grandin describes that she ‘thinks in pictures’ (Grandin, 1996); this may be true for others on the spectrum, but it is not universal. Wenn Lawson has described his thought processes as more verbally based (Lawson and Roth, 2011).

The relationship between the autism spectrum and the rest of the population is one with important social and ethical implications. Traditionally, autism was seen as akin to a medical problem – diagnosed by medical professionals and regarded as a disorder and/or disability, with deficits that impair the individual’s functioning and depart from the ‘norm’. Historically, this was the perspective most strongly associated with the idea of a ‘treatment’ or ‘cure’ aimed at returning the individual to ‘normality’.

Nowadays, many individuals with autism and their families prefer to think of autism as a difference from neurotypicality (and note the use of this term in preference to ‘normality’).

Some, including members of the Autism Rights Movement, altogether reject the concept of autism as a disability, arguing that being autistic is simply a valid alternative to neurotypicality, and something to be celebrated.

Here Arabella reflects on coming to accept and celebrate Iris Grace’s unique qualities

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ARABELLA:

Well, to some can be very isolating. You worry as a parent how other people react to your child. Iris quite clearly now is autistic. When she walks down the street, it's obvious. She tip-toes along, she gets excited by-- she'll see a bit of texture on the stone, on a sort of old building. And she'll go up to it, and she'll feel it, and she'll be sort of inspecting it. And people will walk by and think, oh god, what is she up to?

And I can tell now when she's in a book shop. That people are seeing it. That I can't hide it anymore. But then, I've got past that point of caring. I really do celebrate the fact that different it's brilliant, now. And I don't feel that kind of awkwardness, and the embarrassment I used to feel. I used to want to fit in with her, I used to want her to fit in. I needed her to be like other children. And now, I don't.

I love the fact that she's different. And that difference will probably be the greatest thing in her life. Because if you celebrate those differences, and follow them it'll end up being some sort of career. Or it'll end up making her-- separating her from struggling in a sort of mainstream world to be extraordinary at something.

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An associated perspective first introduced in Week 1  is ‘neurodiversity’. This extends the ‘difference not disorder’ perspective to include individuals with a range of cognitive differences besides autism, such as dyslexia and ADHD. Neurodiversity advocates argue that these conditions arise due to natural genetic variation and are not ‘pathological’ (medically disordered), but should be recognised as a social category like ethnicity or sexual orientation. They suggest that it is society that needs to change, to accept autistic people for who they are and to accommodate their behaviours.

Those in the ‘difference not disorder’ lobby are making valuable contributions to changing perceptions about autism. However, their views are not universally shared. In particular, some families where there is a profoundly affected autistic individual may feel that while the neurodiversity view is appropriate for high-functioning individuals who lead relatively independent lives, it fails to acknowledge the distress, suffering and disability of those such as their own family member.

In a recent interview, Michael Baron, father of Timothy, echoed the concern that society’s current image of ‘what autism is’ downplays or overlooks the difficulties of people like Timothy:

Michael Baron’s view is that the time may have come to reconsider – again – the idea of a unified autism condition. Interestingly this is an ongoing topic of discussion among clinicians (Boustead, 2015), and fits with suggestions by some geneticists. As outlined in Week 4, genetic studies have shown that DNA variants on a large number of genes may be involved – besides some rare cases, it is a polygenic condition. Moreover, autistic people seem to have different combinations of candidate genes, meaning that it is a heterogeneous condition. On the face of it, this genetic variation fits well with the idea of a spectrum of heterogeneity and individuality at the level of symptoms and behavior.

Yet some experts maintain that the future lies in fragmenting autism into different disorders or conditions. These would be defined in terms of which genes are affected and how these relate to distinctive patterns of physical characteristics such as digestive problems and traits such as intellectual disability (Deweerdt, 2014). Creating genetically differentiated autism sub-groups has made it possible to link some families whose children have characteristics in common, enabling the families to share information on what interventions have worked for their children, to provide guidance for teachers, and to inform research. However, given the vast range of possible genetic variants that have been identified in autism, and the fact that some of these occur in conditions other than autism, it may only be possible to group a small proportion of autistic people in this way. The debate about whether and how autism can be subdivided is ongoing.

However we think of the autism spectrum, it is clear that some autistic individuals manage and even thrive without support, while others need as much help as they can get. The challenge to us all is to strike the right balance between respecting autistic people’s right to autonomy and self-determination, while providing support wherever and whenever it is needed, including in the areas where even quite able people struggle. Autistic individuals should have as much input as they can into decisions about their care and support. This person-centred planning (PCP) enables people to maintain dignity, while also helping to identify the accommodations they may need to function at their best.

In Week 1  it was argued that some of the most reliable information about autism comes from properly conducted research studies. But what questions should such research focus upon? In the last few decades, funding agencies have injected huge sums of money into research into explaining autism, including psychological, neurobiological and genetic factors. But many, especially those in the autism community and their carers, believe that other issues impinge more directly on their lives and well-being, and should take higher priority in terms of funding.

In the following activity you will explore the priorities for the future directions in autism research.

Facilitating effective autism research is not just a question of funding the right areas; it is also about how the research is done and who gets to participate. Scientific approaches such as cognitive psychology and neuroscience traditionally follow a model in which one group of people (research specialists in the field) carry out tests and gather information from another group of people (the participants).

But there has been a growing call for autistic people to play a more integrated role (Pellicano and Stears, 2011). One leading Canadian research team, headed by Professor Laurent Mottron, has been following this approach for some years, with Michelle Dawson, an autistic person, as a research team member. Dr Anna Remington, Director of the Centre for Research in Autism and Education, University College London, leads on several initiatives to ensure that autistic people inform the CRAE research activities not just as participants, but in other roles (Zeliadt, 2017).

Of course, doing research this way is not straightforward. For instance, autistic people may need to accept certain research findings which do not fit with their own personal experience. Mutual respect, trust and candid dialogue between team members is an important part of making such a process viable.

Bringing autistic people into the research process is part of a wider process of accommodating autism within society. These days, autism is of wide public interest in countries like the UK, and media portrayals have undoubtedly played a role in this. But this doesn’t mean that autism is well understood: while media portrayals have enhanced general public awareness, they are also responsible for some erroneous ideas that are unhelpful when it comes to making the right accommodations for autistic people.

How is autism portrayed in the media? You can explore this question in the activity below.

There are other ways in which the media can help to present authentic and positive images of autism. A small but growing number of personalities with successful media careers have chosen to acknowledge their autism. One such person is TV presenter and wildlife expert Chris Packham, who struggled for years with depression and a sense of being different from others. As a child he became passionately attached to animals, secretly hand-rearing a kestrel at home. The loss of this bird caused him trauma, and in adult life he suffered a deep depression on the death of his dog. It was after therapy that he was diagnosed with Asperger syndrome at the age of 42. He now says that although he worked hard to acquire neurotypical traits, such as eye contact for the sake of his TV appearances, he believes that Asperger syndrome is an important part of him which has supported and enhanced his career:

Susan Boyle, the Scottish singer who achieved fame on the TV show Britain’s Got Talent, was diagnosed with Asperger syndrome in 2013. Like Chris Packham, she struggled with many years of adversity before receiving her diagnosis, and like him, her willingness to make her diagnosis public has offered a positive image of what people on the spectrum can achieve.

Of course, many autistic people are achieving success and fulfilment in their own fields. The ‘celebrity’ life stories mentioned above bring autism to wider public awareness, and are helpful because they are honest and authentic.

In the following activity you will think about challenges that autistic people may face in everyday life.

Problems like these often serve to exclude autistic people from society: they may be too anxious to go out, travel or shop. Parents may find the prospect of a holiday with an autistic child daunting and end up staying at home. Even going shopping may be an ordeal for both parent and child.

Several UK organisations work to overcome such barriers to inclusion. The National Autistic Society (NAS) has established the Autism Friendly Award scheme. Those managing public spaces and amenities are invited to submit evidence of their ‘friendliness’ to autistic people in terms of five criteria, including provision of clear information accessible to autistic users of the service, well-trained staff and volunteers, and a physical environment that minimises stressors such as a confusing layout and noise.

Organisations that have received the Autism Friendly Award include several UK airports, theatres, museums and sports stadia; a handful of opticians and supermarkets; and the buildings of the Northern Ireland and Welsh Assemblies and Scottish Parliament.

A separate charity, The Autism Directory, operates its own listing of autism-friendly places, including shops, hairdressers, pubs and restaurants (The Autism Directory, 2017). An increasing number of cinema chains are providing autism-friendly screenings, for instance without advertising or trailers, lighting kept on low, reduced volume and other adjustments. Organisations such as Auticon and Specialisterne, which you read about in Week 7, work specifically to place autistic people in appropriate jobs, and to ensure that their working environment is autism-friendly.

There are big disparities between the current situation of autistic people in developed countries and elsewhere. Despite major gaps and deficiencies in UK infrastructure and services, there is much progress compared to several decades ago, and as outlined this week many positive initiatives are ongoing. There follows a summary of some key advances in the UK, before a discussion of priorities and initiatives for some LMICs where resources are scarce.

These bullet points summarise some of the key advances in the autism field in the UK during the 21st century:

• Autism diagnosis now follows internationally agreed criteria and standard procedures – it did not do so in the 1960s. However, there are deficiencies and delays in the accessibility of diagnosis.
• A range of educational strategies and interventions is in use, with some measure of success. Again, though, access to schools and specialist centres with the resources to implement best practice is often extremely patchy.
• Research has provided insights into cognition, behavior, brain function and genetics in autism, as well as long-term outcomes. Yet there are huge gaps in this understanding, concerns about funding priorities and calls to inform research from an autistic perspective
• There is recognition that autism often goes undiagnosed, notably in females (Gould and Ashton-Smith, 2011), and also more widely in the adult population. Rectifying this problem, and meeting the needs of autistic adults generally, remain significant challenges.
• There have been significant changes in public awareness and perceptions of autism in which autistic people have played a key role. However, there is still ignorance and stigma, and as you have seen, the media has played a mixed role.
• Autism legislation such as the UK Autism Act 2009 and the Autism Act (Northern Ireland) 2011 are positive steps. However, the NAS and Autism NI joint report, Broken Promises, highlights failure to implement the autism strategy and action plan set out in legislation (Stewart, 2016). Similarly, The Autism Dividend, published by the National Autism Project (Iemmi et al., 2017), documents the UK-wide failure to deliver services and to source evidence-based, cost-effective interventions.

The situation for autistic people and their families in many LMICs reflects, at considerably greater scale, the problems experienced in developed areas of the world, but with additional cultural, political and economic challenges. For instance, health priorities may focus elsewhere on problems such as infant mortality, malaria and AIDS. Public awareness and professional understanding of autism is usually limited. Even where diagnosis is available, it may be hampered by inadequate professional training.

As you saw in Week 3, there are differences across cultures in expectations about development and behavior. For instance, in parts of the world where eye contact between children and adults is culturally inappropriate, a lack of eye contact is unlikely to cause concern (Matson et al., 2011). This means that diagnostic criteria and tools based on Western ‘norms’ of child behaviour may be inappropriate for different cultures. Prithvi Perepa comments here on the importance of taking cultural context into account in identifying autism:

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PRITHVI:

I think, probably, the answer for identifying autism in different parts of the world would have to be about actually constructing this definition together from people from different parts of the world. Because at present, the research on autism has been primarily coming from America, Europe, and UK and therefore, is based on these norms that are child appropriate in this context.

So it's about having a dialogue and bringing information from other parts to say, would you consider this as a disability or a difference, or not? And there's emerging research on that topic, but it's something that we still need to probably, double up and look at diagnostic tools and see how culturally relevant they are for people from across the world.

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Another problem is that fear of stigma may cause parents in some societies to conceal their children and avoid or delay seeking help (Kishore and Basu, 2011). The few diagnosed cases in such settings tend to be the children of more affluent parents, and to be ‘obvious’ or classic cases, while high-functioning children are likely to be overlooked. This impacts on overall public understanding of autism in these societies: as in the UK in the 1960s, autism tends to be known only as a profoundly disabling condition.

A recent worldwide autism prevalence estimate of 0.6 per cent, falling well below estimates for developed countries, most probably reflects sparse diagnosis rather than worldwide differences in the incidence of autism (Elsabbagh et al., 2012). Wallace et al. (2012) advocated internationally coordinated efforts to tackle autism worldwide. Some recent key milestones towards this global initiative include resolutions by the United Nations (2007) and World Health Organisation (2014) and the Autism Speaks ‘Global Autism Public Health’ (GAPH) initiative (2008).

To illustrate why such global initiatives are necessary, we will look briefly at autism in Ethiopia, and at a collaborative research and training initiative involving an Open University (OU) team including Ilona Roth, lead author of this course.

Ethiopia is in sub-Saharan Africa, with a population of almost 100 million, of whom around 50 per cent are children, and 85 per cent based in rural areas. Despite strong growth in the last decade, Ethiopia remains one of the poorest countries in the world.

In 2012, Dr Rosa Hoekstra (now at Kings College London) led a team of specialists from the OU and Addis Ababa University (AAU) on the first research project on autism in Ethiopia. To ensure practical benefits, development of training materials was integral to the project. Previously the OU had provided health training resources for the rurally based health extension workers (HEWs) who, for most Ethiopians in rural areas, provide the only form of health service. These earlier training materials included a brief discussion of mental health and just a few sentences about autism.

The team conducted interviews with the few service providers in the capital Addis Ababa and looked at public documentation (Tekola et al., 2016). The emerging picture mirrored the broad picture already outlined for LMICs, highlighting low levels of awareness and high levels of stigma among the public, limited specialist training, sparse mental health services, and inadequate funding in the context of other health priorities.

The two schools for autistic children were both set up in Addis Ababa by parents of autistic boys, among the very few children to have been diagnosed. After finding that no school would take her own autistic son, in 2003 Zemi Yenus established the Nia Foundation Joy Center for Autism, which now provides for around 80 children and offers advice, support and training to parents.

Figure 1 (left) Zemi Yenus; (right) The Joy Center for Autism.

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This is a composite of two photographs. The first photo shows Zemi Yenus. The second photo shows the outside of The Joy Center for Autism.

Figure 1 (left) Zemi Yenus; (right) The Joy Center for Autism.

Another parent, Rahel Abayneh, established the Nehemiah Center in 2010, also in Addis Ababa and catering for around 60 children. Both parents campaign vigorously to raise public awareness, combat stigma and mobilise practitioners and policy-makers. As of 2018, two more autism schools have opened outside the capital.

Figure 2 (left) Rahel Abayneh; (right) The Nehemiah Center.

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This is a composite of two photographs. The first photo shows Rahel Abayneh. The second photo shows a garden play area at The Nehemiah Center.

Figure 2 (left) Rahel Abayneh; (right) The Nehemiah Center.

Continuing their research in rural areas, the team found that stigma is common, including among HEWs themselves (Tilahun et al., 2016; 2017). Stigma may be directed at the autistic individual and their family, or experienced by the family without the specific actions of others – for instance, a family may feel shame or guilt at their child’s slow and atypical development. In the majority of cases where autism remains undiagnosed and the label itself is unfamiliar, stigma may arise nonetheless because a child’s slow development and unusual behaviour marks them out as different. Certain traditional beliefs may have a stigmatising effect: children may be thought possessed by a spirit, and parents may believe they are being punished for a sin. One HEW gave the following account:

The research demonstrated that the HEWs would benefit from more targeted training (Tilahun et al., 2017). In response, the team produced a guide to autism, intellectual disability and other child and adult mental health problems, including tips on supporting parents and families. In addition, the team produced five interview training videos for autism and intellectual disability.

Versions of these materials now form a free OpenLearn Create resources pack on mental health, available on this page: Mental Health: Resources for Community Health Workers.

Ongoing initiatives in Ethiopia include the development of a culturally appropriate diagnostic instrument, and the trial of an intervention that can be implemented by parents with their children.

Looking at autism in a less well-resourced country serves to emphasise that, despite many outstanding problems and challenges, resources available in Western countries such as the UK have facilitated progress. Building on this, international research teams can share knowledge and skills, thus promoting global exchange of insights and practices. As Prithvi Perepa emphasises, this is not a one-way process: despite low resources, non-Western communities may offer progressive models from which much can be learned:

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PRITHVI:

They're not necessarily looking at labelling the child or identifying the child with a disability but then say, this is how this person functions, now how do we, as a community, look after and support? I think, which is almost kind of an ecological model of disability or looking after the person as a community that we are defining and describing as good practise in Europe and West, which some communities are already doing without label, probably having better inclusion. Because of that idea that the whole village looks after a child philosophy, whether or not you have a disability.

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Now try the End of course quiz  and earn yourself a digital badge.

The final week of Understanding autism has encouraged you to reflect on what you have learned in previous weeks, using this knowledge to consider where we are now with autism and what challenges and priorities there are for the future, whether in the UK or globally.

The final words go to Alex:

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ILONA:

What message would you like to give to other people with autism who are trying to find their way forward?

ALEX:

Just be yourself. And if you've got a goal, just keep working for it. Don't give up.

ILONA:

What message would you like to give to non-autistic people to help them understand autism better and to engage better with autistic people?

ALEX:

: I'd say, like they've done at work for me, give them a chance, because I think there's a lot of conception out there of what they can't do and what they can do.

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You should now be able to:

• evaluate how your own knowledge and understanding has increased while studying this course
• appreciate both shared problems and differences in the lived experience and needs of autistic people
• discuss trends and priorities in autism research and support
• identify wider societal issues that affect the lives of those with autism and their families
• understand some of the priorities for autism in low resource settings.

Well done for completing the course!

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