Week 6: Family life and education

This week considers the experiences and challenges of family life when one or more family members is autistic. The discussion starts with autistic children, considering initial experiences within the family, as well as the changes that occur as children grow and develop. The focus then moves to support for families and options for education. However, as you will see, access to these options is not evenly distributed across all families and groups. And beyond countries such as the UK, especially in low and middle income countries (LMICs), families may struggle to get any support or education for their child.

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

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ILONA ROTH:

This week, you'll be looking at how autism affects family life, as well as the options for education and the challenge that it may pose for an autistic child. You've already heard from a number of parents. And though their experience is vary, few, if any, would deny that having an autistic child can pose challenges for their families. Yet something that I find shines out from these accounts by parents is their positivity and resilience.

You'll learn about some of the sources of stress and how families tackle them at different life stages. Multiplex families, where there's more than one family member on the autism spectrum, often have their own special coping mechanisms. In countries like the UK, various sources of health and support are available to families. For instance, the National Autistic Society offers a programme and help line for parents. However, accessing these and similar services may be difficult for families, especially if there are language or cultural barriers.

The rest of this week deals with education. You will be reflecting on some of the difficulties that autistic children may face in school and learning about the statutory support for education available in the UK nations. Different options for schooling cover a range from mainstream to residential to education at home. You'll hear why Arabella decided to educate Iris Grace at home. But as with everything else concerning autism, no one solution is right for all.

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

• appreciate different ways in which family life may be affected when one or more family members is autistic

• understand how challenges for the family and for the individual with autism change over the course of development

• be aware of some of the sources of support available to families in the UK

• appreciate the psychological, academic and social challenges posed by education, and the main choices available in terms of schooling

• understand the rationale for different educational choices, including home education.

All members of a family are likely to be affected when a child receives a diagnosis of an autism spectrum condition. Of course, families may have concerns even before diagnosis, and may have developed ways of coping with a child whose behaviour does not fit typical expectations. On diagnosis, close family members are typically affected the most, because they engage with their autistic family member on a daily basis.

Parents may experience a range of emotions, including initial grief that the child is not neurotypical, but perspectives change. You may recall the video clip from Week 3: after the shock and grief of discovering that his son Zack was autistic, Mark realised that Zack was just the same person as he had been before diagnosis. Another parent describes her primary feeling as relief. Her son Louis was finally diagnosed with Asperger syndrome, ADHD and learning difficulties at the age of 6, after years in which Melanie had struggled to have her concerns taken seriously:

Siblings may also experience a variety of feelings, including resentment, embarrassment and guilt. However, research shows that siblings also come to see autism in the family as ‘normal’, developing close relationships with their autistic sibling(s) (Preece, 2014).

Members of the wider family such as grandparents may be a source of support, but also conflict (Hillman, 2007). For instance, they may have difficulty accepting the diagnosis, insisting that their grandchild will grow out of their difficulties. Some grandparents may even believe that the parents are responsible for their child’s ‘difficult’ behaviour. In Melanie’s case, her father’s attitudes to Louis evolved from traditional ideas about ‘dealing with bad behaviour’ to providing support:

Parents are likely to experience substantial stress. For instance, they may have to manage difficult behaviour, such as their child’s anger outbursts, self-injury or insistence on wearing the same clothes every day. Sometimes the desperation to find immediate solutions for young children’s behaviour may not have the best long-term consequences, as Charlotte Moore, mother of George and Sam, freely admits:

The challenges faced by families vary depending on the age of the autistic child and their cognitive skills, such as whether they use spoken language. A child who has difficulty communicating may appear angry towards others or seek isolation, when the underlying problem is sensory overload, or frustration at not understanding what is going on around them.

Some children are hyperactive and impulsive. Other family members may have to adapt to not having spontaneous activities because of the autistic person’s need for structure and sameness.

Lack of sleep is also a significant issue. Children with autism often have disrupted sleep patterns, and inevitably this affects parents too. Jacqui Jackson is a single parent of seven sons and daughters, several of whom are on the autism spectrum. In 2006, when her family was still very young, Jacqui commented that she often went for several nights without sleep, and only took cat-naps on other nights. She was trying to write her PhD thesis at the time.

Given the strong genetic influences in autism, it is not unusual to find families like Charlotte Moore’s or Jacqui Jackson’s, where more than one offspring has an ASC diagnosis. These are known as multiplex families.

Sometimes, when a child is being diagnosed, a parent, or even a grandparent, realises that they too are ‘on the spectrum’. You may recall from Week 3  that John Peters received a diagnosis at the same time as his grandsons were being assessed, which helped him to find an explanation for the problems he had struggled with all his life.

Knowing that there is more than one person with autism can make family life less difficult, as the whole family can more easily adjust to living in an ‘autism-friendly’ way. Jacqui Jackson comments on the loyalty that her three teenage daughters show to her sons:

Adolescence often presents new challenges for young people with autism and their families. Hormonal changes can be difficult for any teenager, but especially so for the young person with autism, who may struggle to understand their changing body and emotions. They may have difficulties understanding their own sexual feelings, and misunderstand social norms concerning the development of friendships and romantic relationships. Neurotypical teenagers can be quite ‘cliqueish’, excluding anyone who doesn’t conform to their way of doing things. Consequently, this is a life-stage when experiences of rejection, isolation or bullying are likely to be particularly prevalent, and is possibly why young autistic people are especially prone to mental health problems such as depression and anxiety (Picci and Scherf, 2014).

Picci and Scherf argue that the problems facing the autistic adolescent concern more than the challenges of social relationships. They suggest that around 30 per cent of autistic adolescents show an overall deterioration in their level of functioning in adolescence, and attribute this to a ‘second hit’ of difficulties affecting the brain and cognitive processes, accentuating weak central coherence and executive function problems (see Week 4). One consequence is that young people with autism often have difficulty with autonomy – that is, making decisions and performing everyday tasks. Despite these challenges, Claire Bachman, an American student with Asperger syndrome, is living independently from her parents and attending college:

A lack of autonomy is especially prevalent in autism compared with other developmental conditions such as Down syndrome (Esbensen et al., 2010). While more profoundly affected adults may gain a residential placement, many autistic adults continue to live with their parents.

Since adult-focused services are very sparsely available, parents and/or other family members typically find themselves with multiple responsibilities, ranging from everyday care to negotiating benefits and seeking employment opportunities for their autistic family member. Even the most able autistic adult is likely to struggle with tasks such as form-filling. A family will need to deal with such administrative tasks, as well as acting as advocate in relation to officialdom. Parents may find themselves torn between caring for their own ageing parents and their adult child. As time passes, parents themselves are likely to become less able to care. This may then impact on siblings, who by this time may have children of their own.

You will learn more about the situation of autistic adults in Week 7.

Families with one or more autistic members have often been noted as developing resilience, becoming stronger and more resourceful. This comes from flexibility in accommodating the autistic person’s needs and from good communication with each other. While every family’s journey with autism is different, they have in common learning to appreciate the smallest of achievements and developing greater awareness of, and compassion towards, individual differences.

Figure 1 Zoe Wood's son Matthew.

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This is a photograph of Matthew Wood.

Figure 1 Zoe Wood's son Matthew.

In the UK, support from the NHS and social services tends to focus on diagnosis and the needs of the autistic child, rather than on the family as a whole. The sparse family support that is available tends to be for parents, such as respite breaks for those with a severely affected child.

However, there are many volunteer-run support groups, some of them provided by people who themselves have an autistic child or adult in the family. Additionally, there are groups on social media and email/online bulletin boards that people can subscribe to.

The National Autistic Society (NAS) has assembled a directory of support services for families with an autistic member. It includes a wide range of service providers as well as services offered by the NAS itself, two of which are outlined below.

EarlyBird

Besides the many services that the NAS offers to autistic people, it also offers some excellent services for parents and families. Parents of younger children (up to age 8) may be able to access an EarlyBird or EarlyBird Plus support programme.

EarlyBird is a three-month programme that provides group training sessions for parents with individual home visits. Video feedback is used to help parents apply what they learn as they work with their child in the familiar home setting.

Figure 2 Photos of an EarlyBird session, each featuring parent and child with an EarlyBird trainer who is recording the session.

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This is a composite of two photographs from an EarlyBird session, showing adults playing with children, while being observed by a trainer. The first photograph shows a man blowing soap bubbles. The second photograph shows a game of Connect Four. In both photos the children look very engaged and entertained.

Figure 2 Photos of an EarlyBird session, each featuring parent and child with an EarlyBird trainer who is recording the session.

EarlyBird programmes are run by trained and licensed professionals with the aim of:

• supporting parents in the period between diagnosis and school placement
• empowering parents to facilitate their child’s communication skills
• supporting parents to deal resourcefully and positively with their child’s behaviour, including more challenging aspects.

EarlyBird Plus is an enhanced form of the service that invites a professional who works with the child (such as a teacher at school) to attend the sessions, so that the child receives consistent support.

Evaluations of both EarlyBird and EarlyBird Plus programmes are positive (Stevens and Shields, 2013). Parents who have participated show reduced stress, more positive perceptions of their children and enhanced communication with them.

The two EarlyBird services are here:

http://www.autism.org.uk/ earlybird

A big problem for many parents is finding out what support is available and how to access it. With so much information available online, this might seem surprising. But not everyone has the time, money or skills to seek the help that they need, and there is also the difficulty of deciding which of the many services offered are reputable and risk-free. These difficulties may be particularly salient in ethnic minority communities, accentuated by cultural reservations about using the forms of support that are offered, as Dr Prithvi Perepa explains in these video clips:

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PRITHVI:

Some of the factors which make life difficult for families who have a child with autism coming from minority ethnic communities could be community-based factors, where it is about how acceptable, how easy is it for them to actually get support from their own communities. For example, there's been an assumption in the UK in the past that families from minority ethnic communities don't access services, because they look after their own kind of a thing. And yet the evidence actually is saying it's contrary. Because often these families are probably the only family from their community living in the UK.

So there's not necessarily a network of support, which would then mean that they perhaps also are not aware of sources for support. Where do they get support from? And if the families have limited language-- such as English in the UK, that dominant language-- then how do they access services, professionals, and even information about benefits or diagnosis or any of those kind of things? So there's a whole bit about how is information actually provided to these families.

Some parents have also said that some of the services that are there perhaps don't actually meet their own cultural values, understandings, and things like that, even simple things like parent-support groups, because they're assumptions, again, about who can access and contact us. And our studies in the UK say a majority of families from minority ethnic communities also have economic difficulties, which then has an impact of can they actually afford to go to a parents support group? Do they have access? Can they drive? Can they take time off to do-- all of those kind of practical elements make it difficult to seek support, follow support?

And professional knowledge about strategies also vary. So a number of parents who still are advised by speech and language therapists for example, that using home language would be inappropriate for their child. Again, it gives confusing mixed messages for parents, because they don't know what to do. So do they not use their language anymore?

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Yet Prithvi also emphasises that different cultural attitudes to autism may help ethnic families to view autism positively and to seek the support they need within their own community:

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PRITHVI:

The cultural values that families have around autism or disability are not necessarily always negative. Because that's what literature often suggests that if a family has autism and they come from minority ethnic communities, they are somehow backward, sometimes it suggests. But in fact, some of the aspects that-- or cultural beliefs that families may have could actually be helpful. So if you believe that your child has been given to you with autism because of God's willing on this kind of a thing, it's not necessarily negative. Because that might actually help the parents to accept the child more easily and try and find how to help that child.

Similarly, some cultural groups really still say let's look at the child and look at that kind of support of the whole community around that child, which does exist in some of the communities in the UK, can be quite helpful again because they're not necessarily looking at labelling the child or identifying the child with a disability, but they are saying, this is how this person functions. Now how do we as a community look after and support--

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Decisions about nursery and school often pose huge challenges for autistic children and their families. Ensuring that an autistic child is in the right environment is further complicated by the fact that a substantial number of children arrive at school with no diagnosis – their difficulties are first picked up by a teacher. Asperger syndrome or high-functioning autism may only become apparent in the teenage years.

Even if the diagnosis is known, teachers with more able autistic pupils in their class may not be able to reconcile their academic abilities with their communication difficulties and the difficulties experienced in navigating the social world. As Luke Beardon stated:

Now find out more about the challenges explored in the previous activity.

Bullying can result in low self-esteem, mental health problems and poor academic performance. Melanie said that her son Louis left mainstream school at 16 because of the bullying and could not face further education. However, some young people find the resilience to cope with bullying and emerge stronger as a result. Alex talked about his experiences of bullying in Week 2. Here he maintains that his experience of mainstream school was positive, despite what happened to him.

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ALEX:

I was statemented at school, but I was in mainstream ever since the age of five.

ILONA:

Thinking about that now, what do you think are the pros and cons of being in mainstream school for a person with autism?

ALEX:

I'd say the pros probably are you mix with more people. And we come back to the busy crowds, saying, you know, you learn-- you're in a bigger environment, so it teaches you, so you can learn to cope with it better.

Because there's more people there, you're more likely to get more friends. But obviously, a con would be that because you're different to everyone else that you're probably more susceptible to bullying, I would say.

ILONA:

Looking back on that now, are there more things the school could have done to help you?

ALEX:

I think they did all they could for me. I think it was partly down to that I was afraid to tell anyone to start with, and that's why nothing was done about it sooner. Because I didn't say anything. I just kept it quiet.

ILONA:

That must have been very painful for you.

ALEX:

It was, yeah. It was only-- I was getting bullied, like, lunch time. I went for about six weeks without eating any lunch because I didn't want to face to get in the queue and do it.

And it was only when my mum found out on my dinner card, that nothing had been gone off it for six weeks. So she realised I was skipping lunch. And that's when she told the school. And that's when I ended up saying about the bullying. And it was only because of that why she found out.

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One of the greatest challenges that parents face is to secure appropriate support and the right context for their child’s education. In countries such as the UK and the US, a framework is in place for this. But parents’ experience of negotiating the framework is not always positive and the range of educational choices varies widely from one place and community to another. Parents may also find that the choice they have made – for instance, for their child to go to a mainstream school – does not work out, leading them to change their child’s schooling arrangements.

To ensure that an autistic child has appropriate support for their education, it is important that their needs are fully understood and documented at the outset. This may require, in England, an Education and Health Care Plan (EHCP), in Scotland a Coordinated Support Plan (CSP), or in Wales or Northern Ireland a statement of Special Educational Needs (SEN). These are legal documents drawn up by the local authority to specify the additional support needs of the child, objectives for them to achieve and the help that they need in order to achieve those objectives. However, some parents report a considerable battle to obtain the relevant statement for their child. Moreover, as in Melanie’s case, they may find that additional funding allocated to the school for their own child’s support is absorbed into a pool of resources for the support of a number of children:

Another problem is that not all autistic children will receive a plan or statement, as their needs are not considered severe enough. In these cases, parents may find themselves trying to persuade the mainstream school that support is necessary:

*CAMHS stands for Child and Adolescent Mental Health Services. In the UK these are services within the National Health Service that assess and treat young people with emotional, behavioural or mental health difficulties.

Some mainstream schools have a unit attached that autistic pupils can attend for part of the day. This may be for particular lessons or to provide a safe place during breaks and lunchtimes.

If a child is receiving interventions such as TEACCH or PECS, then these need to be built into the school day, to provide consistency. Autism units within mainstream schools may not be appropriately resourced for such specialised support. This is easier to deliver if the child attends a special school, as these will be geared to using such approaches and will have staff who are trained in them.

Some children’s behaviour may require a highly structured environment throughout the day, such that the only option is a residential school. Children attending residential schools may return home for some or all weekends, or only during the holidays. Some may not even be able to do this, although their families will visit them. For G, who is now 17 years old, special school has been a positive experience:

Places at special schools and residential schools are limited and are only available to those children with an EHCP, CSP or Statement of SEN. In the late 20th century there was a move away from special schools, towards placing as many children as possible in mainstream settings. The emphasis on ‘inclusion’ reflects the belief that it is better for autistic children to be educated alongside neurotypical children in their community, thus being involved in all the social and academic activities that other children experience.

Sadly, despite the advantages of mainstream school, many autistic children do not feel included, lack friends and may not achieve their academic or vocational potential. As you have learned throughout this module, autism is highly heterogeneous: in education (as with so many other areas of life) a ‘one size fits all’ approach does not work. It is essential that the individual needs of the child are considered, and that the right education context is found.

Many parents of autistic children in the UK feel that their choices are limited. However, the range and quality of educational choices is substantial compared with provision in many other areas of the world, and especially in low income countries. For instance, Ethiopia has a population of nearly 100 million people, of whom more than half are children – yet until recently there have been only two schools for autistic children. These are in the capital city, Addis Ababa, and were founded by two mothers, both of whom have taken important steps in improving support and services for children with autism (Tekola et al., 2016).

Some parents choose to home-educate their children. They may have tried mainstream and/or special school options, and found both to be unsuitable for their child. Their child may have had bad experiences or failed to progress, or parents may be using interventions such as Applied Behavioural Analysis (ABA), which cannot be readily implemented in school. Receiving formal education at home is often a lot less stressful and anxiety-provoking for the child because it is a familiar environment, and the day can be structured to suit their routines and interests. However, it can be more stressful and exhausting for parent(s), and is financially costly if paid employment has to be given up. Parents may also find it hard to obtain the necessary teaching materials and they may lack sufficient information about what the child should be learning. Parents undertaking homeschooling are not obliged to follow the National Curriculum, and this may benefit the child in the short to medium term, but difficulties may arise if the child ever wants or needs to take formal qualifications such as GCSEs and A-levels. Despite his regrettable experience of bullying, Alex is positive about his formal mainstream education, which has equipped him for university studies. Home education may be the best choice for some children, but it is not an easy option or one that all parents could manage.

In this video clip Arabella, mother of Iris Grace, explains why she took the decision to educate Iris at home:

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ILONA:

You decided to educate Iris Grace at home. What led you to that decision, and what are the pros and cons of home education?

ARABELLA:

So my original intention was Iris to be educated in a school, and I worked for many years to try and make that happen. It wasn't like I was this parent that thought, "Oh, home education, that's my dream" at all. In fact, we're positioned in the village right on the main road that has a bus to the local schools--

[LAUGHTER]

--so I thought that was good news when we bought the property. But Iris didn't get on well at all at preschool. It turned into a very sort of distressing time in both of our lives. She started self-harming and all of the progress that had built up over those months just disappeared really quickly.

One thing with children who are on the spectrum, when things are going wrong, they can go very wrong and really fast if they're in an environment that they can't handle. It's actually quite shocking how quickly things fall apart and how they break down sort of in front of your eyes. It's really sad. They can't eat. They can't focus. They can't concentrate. They start doing things like self-harming behaviours.

So after about three weeks of seeing that, I had to take her out. And then it was a case of me kind of regrouping and saying, OK, what do I do now? And we looked at other options for schools, but there just didn't seem to be anything that was appropriate. And I realised that, to give her what she needed at that time, it needed to be at home.

We did the whole home ed thing, and it's hard most days. I mean it is hard. It's not like I can say to you it's a dream. It's a lot of hard work and preparation because you're a teacher, you're a mother, you're a therapist-- also a photographer and everything. So it takes up a lot of energy, but what you get back is amazing, and that gives you the energy to carry on the next day and the next day.

And you're a lot more free, and you can move with the child's interests. And if you've prepared something-- say, on an elephant theme, and Iris suddenly decides that she wants to be into the orchestra, I can go with that. I don't have any other children to worry about. When you're working one to one, you can just go with the child's interests.

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Activity 3 Home education

Timing: Allow about 5 minutes

Besides the potential drawbacks of home education just outlined, can you think of another important developmental opportunity that home-educated children are likely to miss out on?

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Discussion

All home-educated children, whether autistic or not, may lack opportunities for interacting and learning to socialise with other children, an important part of their learning and progression towards adulthood. However, it is possible to join a network of other home-educating parents and participate in organised outings or joint learning sessions. Some parents have even set up groups in their own homes to facilitate their child’s interactions. In this video clip Arabella talks about the Little Explorers Activity Club that she runs from home, bringing Iris Grace together with other autistic children for informal learning activities:

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ARABELLA:

It means that you create an environment both sort of outside and the human environment with us that promotes learning. And it's learning how movement affects the brain and how we can help these kids.

And like last week we had a German working student with us. And she was teaching the children all sorts of concepts that you would think would be too difficult to get across to a child in the spectrum, like about gravity and speed and how to work out speed and all these things. And she even taught them through ways that is so imaginative and it's fun for them. There was no sitting down at the table, no paperwork, no sort of worksheets, nothing like that. It was all outside doing experiments and working with each individual child's passions. So the speed one was all on the Hot Wheels, with these little cars. And they made sort of tracks down through the meadow with that and working out speed that they went and the acceleration and all sorts of things like that.

So it's been really inspirational to see how you can teach.

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Week 6 quiz

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This week you have looked at key challenges facing families when one or more members is autistic. This week’s material has outlined the forms of support that are available to families, and touched on the difficulties that some families may have in accessing this support. It has also highlighted the remarkable resilience often present in the face of difficulties, including in multiplex families. One of the biggest challenges for parents is finding the right school or other educational option for their child. The key features of the main educational choices available in the UK were described, and the arguments for and against different options were considered.

You should now be able to:

• appreciate different ways in which family life may be affected when one or more family members is autistic
• understand how challenges for the family and for the individual with autism change over the course of development
• be aware of some of the sources of support available to families in the UK
• appreciate the psychological, academic and social challenges posed by education, and the main choices available in terms of schooling
• understand the rationale for different educational choices, including home education.

Next week focuses on what happens when a young person with autism leaves school and enters adulthood.

Now you can go to Week 7.