Week 7: Adulthood

Most of what you have learned so far has focused on children. However, autism is usually a lifelong condition with many core challenges persisting in adulthood – although there is also change and development, just as for any neurotypical person growing up. Some young autistic adults succeed in overcoming multiple challenges and adapt to independent living, and as you saw in Week 5, a small proportion achieve ‘optimal outcomes’, becoming free of their autistic symptoms. For others, serious challenges affecting autonomy and well-being persist. Some people only discover their autism in adulthood, often after years spent struggling with a sense of being different. Across these different groups, several things are clear:

• less is known about how autism affects people in adulthood
• the factors that lead to different outcomes in adulthood are not fully understood
• less help and support is available for adults than for children.

This week discusses what is known about autism during and after the transition to adulthood and in older age. It describes some different life scenarios for autistic adults and the challenges that they may face, for instance in employment and relationships. It outlines some of the provision and support available, but also highlights the many gaps, whether in the UK or worldwide.

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

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ILONA ROTH:

By now, you know that autism is usually a lifelong condition. And this week, you'll be focusing on adolescence and adulthood. Of course, this change in development, as for any young person growing up, many young autistic adults overcome huge challenges. Some adapt to independent living. And as you saw in week five, a small proportion may achieve so-called "optimal outcomes" becoming free of their autistic symptoms. However, for many, serious challenges affecting autonomy and well-being persist.

You'll start by looking at the transition to adulthood and the special importance of ongoing education and support for young people who are still developing. You'll also learn about different kinds of living arrangements for adults. One thing, which stands out for me, is the number of autistic adults who remain dependent on parents, experience social isolation, and suffer from mental health problems. Unfortunately, the factors which help to avoid such outcomes are not fully understood. And sadly, less help and support is available for adults than for children.

However, it's important to look at the positives too. You'll learn about the lives of three very different autistic adults. Each in its own way, a success story considered in individual terms. You work also covers how autistic people fare in typical areas of everyday life, such as employment. With recognition of the particular skills that autistic people can bring to work situations, some excellent organisations now specialise in securing employment for adults. Your week's work concludes with a look at some recent UK legislation aimed at ensuring better adult services and support. Legislation is clearly a step in the right direction, but so far, progress in meeting the goals has been disappointingly slow.

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

• understand problems relating to the transition into adulthood for autistic people
• appreciate factors that may affect outcomes in adult life
• be aware of the range of outcomes that may result for autistic adults
• understand particular challenges in adult life concerning independence, employment, relationships, legal issues and health
• be familiar with forms of support available for adults and their limitations.

The transition from childhood to legal adulthood at the age of 18 has been described as ‘falling off a cliff’ because there is generally very little provision for autistic adults. As for any young person, the moment of leaving school marks the loss of a familiar social network. But whereas most neurotypical 18-year-olds can look forward to making new friends at college or work, those with autism may find themselves isolated again, augmenting the risk of depression and other mental health problems.

In this section we discuss some key considerations within the transition to adulthood.

Educational placements stop at 18 or 19. However, because autism can be associated with delays in development, many would benefit from a more extended period of education in a broad range of skills.

Skills learned at school may be lost if there is no post-school placement to reinforce and practise them, and continuing education is needed both for learning daily living skills and enabling autistic people to gain employment, where possible. Social and communication skills can continue developing for many years. However, further education colleges may not have the resources to support young people with autism, and specialist colleges are sparse.

Many children with good intellectual skills do well in public examinations such as the UK system of GCSEs and A-levels, and some go on to university. Students within all four countries of the UK can obtain an allowance for relevant ‘non-medical’ support, such as a note-taker in lectures and a mentor to assist coping. However, such funding does not continue after graduation.

The young person may be unable to negotiate the complexities of applying for jobs or attending interviews. Even claiming out-of-work benefits may be impossible: forms are often written in complex bureaucratic language that anyone can find a challenge. So even young people with qualifications can find themselves returning to live with their parents or struggling on their own. This may contribute to the high level of mental health issues noted earlier.

The new Education, Health and Care Plan (EHCP) introduced in England in 2014 covers the additional support needs for children and young people up to the age of 25. The EHCP can fund a placement at a specialist college (if available), and can offer a personal budget so that a young person or their designated carer can decide what support to buy. However, according to an NAS survey (Moore, 2016), a majority of parents remain dissatisfied with the new system, especially in relation to health and social care. It is unclear how effective the EHCP system has been in securing services for young adults.

At present the Coordinated Support Plan (CSP) used in Scotland, and statements of Special Educational Need (SEN) used in Northern Ireland and Wales do not provide the continuity into adulthood that the EHCP is designed to provide; families have to negotiate support after their children leave school.

In this section you will look at living arrangements for young people with autism.

The parents who started the National Autistic Society (NAS) in the 1960s and set up the first schools for children with autism all too soon found themselves addressing provision for their adult offspring to experience the kind of structured environment that would enable them to achieve their potential. Previously, offspring such as theirs may have been committed to long-term institutions for those most unfortunately described at the time as ‘feeble-minded’.

This led some parents to purchase a property that could become a residential home for their adult offspring: Somerset Court, near Burnham-on-Sea, was established in the early 1970s. Subsequently the NAS has set up some other small residential homes around the country. Each aims to help residents augment their social and communication skills; learn some everyday life skills such as cleaning, shopping and cooking; and gain in confidence, with the support of specialist staff. Approaches such as TEACCH, discussed in Week 5, are used to create a structured environment. Residents may attend a local college for day and evening classes, or learn some vocational skills. Somerset Court has its own onsite resource centre.

Other local autism charities have similar facilities, with places funded by local authorities. Another option is to attend a local daycare centre, although these may not be autism-specific. A person must have been assessed by social services, and have had funding agreed, in order to gain access to such services.

In some areas of the UK, independent living is facilitated by access to funded support. Some adults obtain direct funding for a part-time support worker to help with areas of daily living where they have difficulty, such as self-care or dealing with officialdom. Some NAS adult services are directed towards more able adults, including small social groups that aim to help with the continuing development of social skills. The success of such arrangements depends on the individual case. Melanie’s son Louis lives with his father, with frequent visits and input from Melanie herself, and support from other services:

Alex lives at home while studying for a degree and working part-time, although he hopes to move into his own place eventually. In this clip he talks about his mentor and also the social group he attends:

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ILONA:

What about now, do you get any help or support?

ALEX:

Yeah. I see Mike for assist once every four weeks in my Reigate. I talk over any problems, so I use my NHS mental now. I've obviously got the Guilford Group transition going I was just telling you about. I go to that every two weeks and it's quite a big group, so I've met quite a lot of people there.

ILONA:

And what are the areas of your life where you feel you need to seek help from Mike or from the group?

ALEX:

It's normally like if, you know, if I've had an argument or something with my mum. I mean, they don't happen as often as they did, but you know, we're all human. Arguments are going to happen inevitably.

ILONA:

What do you find particularly helpful in the support that you get?

ALEX:

I think one thing with like Mike is, you know, I can speak to someone who's not a part of the situation. And I think having someone that's neutral just helps. You know, someone who's not directly involved with the situation.

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As outlined in earlier weeks, services for autistic children in many lower and middle income countries (LMICs) are very sparse. The gap is even greater for adults, as illustrated by a recent interview study of South African professionals and parents (Meiring et al., 2016). In some ways the fears about transition expressed by South African parents mirror those of parents like Melanie, quoted earlier. But the situation is more extreme, as these quotes from parents illustrate:

Adult outcomes is the term for what happens to people with autism once they transition into adulthood. One reason that relatively little is known about outcomes is that autism was only identified in the 1940s, and it took several decades for the diagnosis to become well-known.

So until recently there have been relatively few adults on whom to base outcome studies. This situation is changing, and an increasing number of longitudinal studies have tracked the progress of children with autism into adulthood. Key findings from 25 such studies have been assembled and evaluated by Magiati et al. (2014).

The researchers reported that cognitive function (for instance as measured by IQ scores) remains stable for many adults on the autism spectrum.

However, there is much individual variation, with evidence that IQ improves for some individuals and declines for others. Language function tends to improve in adulthood, but in most cases significant difficulties remain. Adaptive functioning means an individual’s capacity to deal with everyday tasks such as dressing and washing oneself, and communicating personal needs.

On the whole, measures of both adaptive functioning and the severity of core autism symptoms show improvements, but again there are individual variations.

The most consistently negative results from Magiati’s report concern social life and independence in adults on the spectrum. More than half of participants remained fully or largely dependent on parents or carers in adulthood, and needed significant support for education and living arrangements. Few have friendships, romantic relationships or employment. Correspondingly, the NAS estimates that only 16 per cent of adults in the UK are employed (National Autistic Society, 2016).

More than half of autistic adults are likely to have some mental health difficulties, most commonly depression and anxiety. It is not clear to what extent mental health problems are a feature linked to autism itself, or a consequence of social isolation and society’s response to autism. The need to overcome rigid routines, make decisions or adapt to new circumstances in order to engage with the world could provoke extreme anxiety. Behaving and thinking ‘differently’ and being awkward around others could lead to the difficulty in forming relationships and obtaining employment.

In general, the quality of life experienced by adults on the spectrum is lower than for neurotypical adults (van Heijst and Geurts, 2015).

IQ and language ability play a role in shaping adult outcomes. In general, those with a higher IQ and better language skills are likely to have more favourable outcomes in adulthood. But the pattern is very mixed: the quality of support available and the individual’s own resilience are likely to play a role in adult well-being, and as we shall see, what counts as a favourable outcome should be judged in relation to the individual, rather than to some absolute standard. A successful individual outcome doesn’t necessarily mean that the person has ‘outgrown’ their autism or that they are living independently, with a job and so on.

The extent to which autistic people are capable of a ‘standard’ adult life varies greatly. In general, those more profoundly affected are more likely to need care and support, either at home or in a residential home. However, this group may also include high-functioning adults, who experience disabling levels of anxiety, or find that adaptive functioning skills – such as dressing, preparing a meal for themselves or paying bills – are too challenging. On the other hand a substantial number of adults do live independently of their parents or other forms of support. This group undoubtedly includes many people whose autism is undiagnosed.

Finally, a small proportion of those on the spectrum do appear to lose their autistic symptoms altogether, achieving what have been termed optimal outcomes. This section considers a range of outcomes, incorporating individual life stories.

In earlier weeks, Michael Baron talked about his profoundly autistic son, Timothy, one of the first children to be diagnosed in the UK. Timothy is in his 60s now. Despite remaining in residential care for most of his life, Michael sees real progress in how Timothy experiences and engages with the world:

Michael is saying that the outcome for Timothy is successful compared with other possible eventualities for him as a profoundly affected person. This is a judgement in individual terms, rather than in relation to society’s norms.

In the 1940s, Donald Triplett was one of the small group of children from whom Kanner first formulated his ideas about autism. Among Kanner’s case notes at the time is this quote from Donald’s mother:

You may note a hint of exasperation at Donald’s unusual special interest. His mother had also concluded that he was mentally ill, and on the advice of psychiatrists, she and her husband had Donald committed to an institution. But they regretted their decision and brought him home again after a year. When he was growing up, Donald was described as socially aloof and eccentric, but with a number of savant skills, such as his exceptional memory for numbers. Despite his difficulties, he sustained employment in a bank, and learned to drive, play golf and to travel independently.

Donald is in his eighties now, enjoys his life and remains a valued and cherished member of his community in Forest, Mississippi. Factors that have clearly made a big difference to this outcome are his parents’ positivity, their ability to ensure a secure future for him and the positive social support he has received from the community. Although he remains a loner, he meets others to play golf, and participates in church and other local activities (Donvan and Zucker, 2010).

Donald Triplett’s story is not just about the support of others, but also his own positivity and resilience in the face of difficulties. These attributes feature strongly in the life story of Wenn Lawson.

In an interview recorded for The Open University in 2011, Wenn described his difficult relationship with his parents, misdiagnosis with schizophrenia aged 17, troubled marriage and loss of a child in a car accident. But he also talked of his success as an academic, writer and autism advocate, some of which he attributed to the love and support he found with another partner after divorce. Wenn studied psychology with The Open University, and considered distance study to be ideally suited to people on the autistic spectrum:

Longitudinal work by a few research groups suggests that a small group of children with an autism spectrum diagnosis completely lose the symptoms consistent with this diagnosis, though they may retain some subtle symptoms similar to ADHD (Suh et al., 2016). Research into what factors might promote this outcome is still at an early stage. Deborah Fein, a leading researcher in this field, suggests that a high proportion of the optimal outcomes group have received intensive early ABA intervention (see Week 5), but also speculates that biological factors may differentiate the group from others on the autism spectrum

This kind of outcome is not common, and becoming free of autism should not be considered the only good outcome. Some feel that their autism is integral to their identity and would not wish to lose it. And as the lives of Timothy Baron, Donald Triplett and Wenn Lawson all show, positive outcomes in adulthood should be evaluated in relation to the individual.

Sections 5 and 6 consider the major challenges faced by many adults on the spectrum, whatever their setting.

The NAS has some support centres across the UK and an outreach team that aims to assist with preparing for work, for instance by building on social and practical skills, confidence and experience, as well as CV writing. However, because it is a charity, such support centres are few, and many people do not have access to them. The NAS also offers advice and training for employers on understanding autism and how to manage people with autism.

There are also commercial companies that help autistic people into meaningful and productive employment. At Specialisterne, which started in Denmark and now operates in 13 different countries, employees are found work as business consultants on tasks such as software testing, programming and data entry for the public and private sectors. Auticon has bases in London and Munich, and works on similar principles. Their employees are all on the autism spectrum and work as consultants for various clients, with a job coach who gets to know the consultant and their capabilities, assesses the work environment for any reasonable adjustments that could be made, acts as a mediator and may initially help the autistic person with travelling to and from the job.

Autistic people have many skills to offer in the workplace, and simple respect and friendship from fellow employees may be as important to well-being as specific support measures. In this clip Alex talks about his very positive experiences of working part-time in a bookmakers:

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ILONA:

Can you tell me about your new job?

ALEX:

Oh, yeah. I started working at William Hill about three weeks ago. And I really enjoyed it so far. I've got a team of people I'm working with.

ILONA:

William Hill is the betting?

ALEX:

The bookmakers, yeah.

ILONA:

Bookmakers?

ALEX:

Yeah.

ILONA:

So what do you do with them?

ALEX:

I take bets. And I do that sort of thing, put them on the computer, as well.

ILONA:

And what do you find particularly interesting about it?

ALEX:

I like, you know, all the odds and that. I enjoy having a bit of a bet myself, to be fair. But yeah-- I think it's because there's a lot of maths involved in that. And I like maths.

And that's why I went for it. And also, I also thought, as well, 'cause you're interacting with customers, it will help improve my social skills. And I've told all my colleagues about being autistic and they were fine with it, you know.

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The lives of autistic adults can follow a neurotypical pattern such as gaining employment, getting married and having children. Some may make great efforts to behave in a way that means that, at most, they are considered a bit eccentric. There is growing evidence that females, in particular, may seek ways to mask their autism in order to fit in. Perhaps only their close family sees their struggles and the impact of maintaining this façade.

Autistic adults may find relationships difficult, on many different levels, and many do not enter into intimate relationships. In his account of Temple Grandin, the writer and neurologist Oliver Sacks wrote that Temple had never dated or been in a relationship:

Many feel lonely and would dearly like to have an intimate relationship with another adult, but lack the social skills or social understanding to know how to even start the process, or to know when it is appropriate to take things to a deeper level from ‘friendship’. If a relationship does blossom, the partner/spouse can sometimes find life frustrating because of the autistic person’s lack of understanding of their emotions:

An autistic person may come into contact with the criminal justice system, either as a victim or witness of crime or as a suspect.

There are several reasons why autistic people may be especially vulnerable to crime. For instance, unusual behavior in a public place may, sadly, attract physical bullying or other hate crime. Naivety about other people’s motives may make the autistic person especially vulnerable to fraud. It may even result in the autistic person being drawn into committing a crime. Anecdotally, an autistic person has been caught as the perpetrator in several recent cases of computer hacking, while other more devious members of a hacking group have got away.

Autistic people are no more likely to be in prison than any other section of the population (King and Murphy, 2014). However, as we have seen, they may have been manipulated into engaging in criminal acts, or have missed social cues that would have otherwise prevented them from acting this way. It is also possible that some are wrongfully imprisoned because difficulty in understanding police procedure or questioning has led them to admit to crimes they did not commit.

All of these situations require that police officers and court personnel are aware of a person’s autism and follow correct procedures. Adjustments made by the police and courts can include:

• an interview location where the lighting, chair coverings or officer’s clothes can be adjusted so as not to cause sensory overload
• presence of a parent, carer, advocate or support person
• a registered intermediary to advise the police or court on how to phrase questions so they are fully understood
• in court, the autistic person may be able to use the live video link or to have their interviews and cross-examinations recorded.

As with other aspects of public life, the NAS is working towards awarding accreditation to organisations that demonstrate a commitment to understanding autism, and making appropriate accommodations. The UK Ministry of Justice is encouraging prisons and young offender institutions to become accredited. The NAS also offers a free guide for legal professionals and police officers who find themselves working with autistic people.

Autistic adults may be susceptible to particular health problems and also to accidents for a range of reasons.

As you have learned in earlier weeks, epilepsy, depression and other health problems are ‘comorbid’ with autism. In addition, narrow food preferences may lead to an unhealthy diet, which could put the individual at risk of obesity and heart problems. Some autistic people are relatively insensitive to pain, which means that serious health problems such as a broken bone go unreported. In emergency situations (e.g. on admission to hospital), a person with autism may be unable to make decisions or insist on their treatment rights, and in rehabilitation, they may not appreciate the importance of following medical guidance.

Any of these factors could potentially affect life expectancy in autism, and there is some evidence for raised mortality (Howlin and Moss, 2012), although more work is needed.

Research is also lacking into how autism impacts conditions of older adulthood such as dementia, or whether older autistic adults have unique health needs. As more and more diagnosed adults are becoming elderly, this is an area that needs urgent attention. For instance, is dementia more common than in the general population, or might autism provide a protective function?

A landmark piece of legislation in England was the Autism Act of 2009, which came out of an NAS campaign to highlight the problems faced by autistic adults. It required all local authorities to develop an autism strategy to provide relevant services, from the authority themselves and from other bodies such as NHS trusts, in order to meet the needs of autistic adults, including:

• clear and consistent pathways to diagnosis for adults
• identifying adults in the area already diagnosed as autistic and assessing their needs
• planning for children transitioning to adult services
• training for staff providing services
• providing help into employment, including developing skills and overcoming barriers which may prevent the person accessing job opportunities.

Building on the first national strategy ‘Fulfilling and Rewarding Lives’, an updated strategy called ‘Think Autism’ was introduced in 2014, with some government money to be used for projects developing local services. There is also a commitment to training for GPs and other healthcare professionals, as well as Disability Employment Advisors at Jobcentres.

The Northern Ireland Assembly passed an Autism Act in 2011, which has a similar focus to the Act in England. Scotland has an autism strategy that covers both children and adults, with aims including supporting autistic people through the many challenges that they might face in their lives, improving people’s quality of life and supporting them into employment where appropriate. Although Wales has an autism strategy, it is not backed by legislation. There are gaps in service provision and diagnosis for adults can take up to seven years in Wales. At the time of writing, the NAS is campaigning for an Autism Act in Wales that is similar to the one in England.

Yet some bodies, such as the Shirley Foundation, have been very critical of the lack of progress made UK-wide in recognition and support for autism since this legislation came into being, and recommend further research into good practice, what is most effective and where money should be spent (Iemmi et al., 2017).

Check what you’ve learned this week by taking the end-of-week quiz.

Week 7 quiz

Open the quiz in a new window or tab then return here once you’ve finished it.

This week has painted a sometimes sombre picture of the many difficulties and challenges that confront autistic adults in all aspects of their lives. Yet we have also highlighted positive outcomes, individual resilience and the benefits that autistic characteristics may offer at work and in relationships. We will end on a similarly optimistic note with a comment from Alex about his achievements so far and hopes for the future:

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ILONA:

What are your goals and aspirations for the future?

ALEX:

I want to be completely independent. I want my own house. I mean, I've learned to drive. I'm studying now. I've got a job. So I've done those goals in my life.

So I've got a car. I've done my test obviously, three years ago. I've got the-- I've also ticked the box of getting a job. Well, I've done it twice now. I think the next one will be once I get some money, and I'm not needing to-- I don't need to worry about bills.

And that will be to try and get my own house or get a flat or something somewhere. I don't want to be living at home forever. I still want to see my mum, of course. But that's my next goal and then obviously to do my-- and the other one is to get my degree.

ILONA:

So once you've got your degree, and you're set up--

ALEX:

And I'm settled, and I want-- and I've got my-- I say I've got my degree and all that, and I'm getting a decent income, then I want to try and get my own place.

ILONA:

Have you thought about getting married, having a family?

ALEX:

I don't know yet. I'm single, anyway, at the moment. But maybe one day, if that right person is out there. I mean, I haven't-- I haven't just rushed into going out with someone. So I want to find the right person first. I don't just want to do it for the sake of it.

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You should now be able to:

• understand problems relating to the transition into adulthood for autistic people
• appreciate factors that may affect outcomes in adult life
• be aware of the range of outcomes that may result for autistic adults
• understand particular challenges in adult life concerning independence, employment, relationships, legal issues and health
• be familiar with forms of support available for adults and their limitations.

Now you can go to Week 8, the final week of the course.