Monday, 25 March 2013

Autism: Stresses and positives for families


The negatives and positives of being a parent of a child with autism

We are used to hearing that having a children with autism in the family can be stressful for parents. Charitable (non-profit) organisations also push this line, and can make it sound like an inevitable consequence of being a parent of a child with autism. This latter implication is perhaps important in raising funds for projects to support families of children with autism. However, there is a significant danger in sending an unclear message about parenting a child with autism. This blog focuses on a number of different questions the answers to which may paint a fuller picture of parenting a child with autism: 1. Whether parents of children with autism are more likely to report stress or other psychological problems compared to other parents, 2. Does increased stress affect all families, 3. Whether positive perceptions and positive parental health are different in families of children with autism, and 4. Why parents of children with autism might report increased stress (if indeed they do so!).

Answers to all of these questions can be derived from a recent research study of ours (http://onlinelibrary.wiley.com/doi/10.1111/j.1469-7610.2010.02295.x/abstract).

Most existing disability family research has relied on surveys of parents in contact with support services (health, social care, education) or charity/non-profit organisations. Even when recruitment is carried out more widely and on a large scale, if researchers directly try to recruit families of disabled children it is very difficult to know who responds. Some parents may be more likely to respond if they are under considerable stress (they may want to make this clear to others), but other parents under considerable stress may be less likely to respond (they have more pressing priorities). Some parents may not want to identify themselves as having a disabled child, others will be proud to do so. These examples make it clear that data from most research studies will be biased and very unlikely to be drawn from a sample representative of any country’s population.

One solution to this problem is to find studies that include data from a sample representative of a country’s population and within which it is possible to identify disabled children and their parents. Although large scale population-based surveys are typically not designed to answer research questions directly about the families of disabled children, secondary analysis of the data can sometimes be conducted to do just that. We (Totsika et al., 2011) analysed data from the 1999/2004 Office for National Statistics (ONS) population surveys of mental health in children and adolescents in the UK (http://www.mentalhealthsurveys.co.uk/). The surveys were designed to be representative of the whole population of children in the UK, had a very high response rate, and included data on well over 18,000 children in total. Within this dataset, it is possible to identify children likely to have an intellectual disability, and also to identify children with autism. Autism was identified using a “psychiatric” interview method, and not simply via parents reporting that their child had a diagnosis of autism. So, the data are likely to be representative of the whole population of children with autism living in private households in the UK – not just those currently diagnosed or in contact with services. Data on mothers were available in the ONS surveys in addition to information about the children.

More stressed?

Using a screening measure included in the ONS datasets that can be scored to indicate high levels of emotional problems, 23.7% of mothers of children without intellectual disability or autism scored above the cut-off suggesting that further detailed psychological assessment would be worthwhile. These proportions were higher for mothers of children with autism and intellectual disability (43.6%), mothers of children with autism and no intellectual disability (43.5%), and mothers of children with intellectual disability without autism (32.4%).

We can glean to things from this pattern of findings. The first is that mothers of children with autism, whether or not the child also had intellectual disability, were about 1.8 times more likely to have high levels of emotional problems than mothers of children without these disabilities.

The second conclusion is also important. The majority of mothers of children with autism did NOT report elevated levels of emotional problems. In addition, these results were drawn from a measure designed to screen for emotional problems. The proportion of mothers who may meet criteria for a diagnosable emotional disorder following a detailed clinical assessment is likely to be lower.

Positive mental health

Using the same four groups of mothers, we also looked at the proportion of mothers who had high levels of positive mental health. 28.5% of mothers of children without intellectual disability or autism reported high levels of positive mental health, and this was at a similar level to the mothers of children with intellectual disability only (27%). The proportions of mothers with high positive mental health were slightly lower for the autism and no intellectual disability group (17.4%), and the autism with intellectual disability group (22.5%).

Although these proportions are lower for high positive mental health, they were not statistically significantly different in this study. This confirms findings from other studies that parents of children with autism report considerable positive outcomes for themselves, and perhaps at a level essentially no lower than other parents.

Although parents (especially mothers) may experience more stress when they have a child with autism, at the same time they seem to experience positive well-being to a similar level as other parents.

Why are mothers of children with autism reporting more stress?

There does seem to be a reliable increased risk of stress and other emotional problems for mothers of children with autism. Why might this be? Although it is not the full story, much of the increased risk for stress seems to be related to two variables. These variables were found to predict maternal emotional disorder in the Totsika et al. (2011) study and several other research studies have found the same pattern of findings. First, mothers are most stressed when their child also has significant levels of behaviour problems. Second, mothers are more stressed when they have limited family resources. In the Totsika et al. study, limited family resources were measured in terms of when families had fewer socio-economic resources (e.g., parents out of work, low levels of income, living in deprived neighbourhoods). In other studies, social support networks have also been found to be important: mothers with the highest levels of stress report smaller, less supportive networks.

What does this all mean for supporting families?

The message that I would like to get out there from this research is that parents (certainly mothers) of children with autism are at increased risk for psychological problems, but also the majority of parents are actually coping very positively. Even when parents are reporting stress, they also have positive things in their lives and view their child with autism positively – and they love them of course just like any other child! So, everything is not doom and gloom for parents of children with autism.

Saying that, it is also important to point out that a proportion families face significant challenges. A good piece of news is that the main factors associated with increased stress for mothers of children with autism are things we can do something about! There are evidence-based parenting interventions that can help families manage the behaviour problems displayed by many children with autism. In addition, increasing families’ access to financial and social supports should also help to reduce their experience of stress.

I recognise that I have described results from only one study in this blog and also that the data focused only on mothers. In addition, the data are a snapshot and probably many more parents at some point in their child’s life (whether or not the child has autism) will experience significant stress. However, my reading of the research literature is that the findings I have described are typical. So, the evidence tells us something important about families at risk, why they might be at risk, and also actually there are some pretty obvious ways we could better support families of children with autism. Let’s do it!

Totsika, V., Hastings, R. P., Emerson, E., Lancaster, G. A, & Berridge, D. M. (2011). A population-based investigation of behavioural and emotional problems and maternal mental health: Associations with autism and intellectual disability. Journal of Child Psychology and Psychiatry, 52, 91-99.

5 comments:

  1. Hello

    Apologies for straying off subject, but perhaps you would like to comment on the draft NICE guideline on the management of autism in children and young people here: http://www.nice.org.uk/guidance/index.jsp?action=folder&o=63399

    Do you think there is the right mix of expertise involved in drafting?

    Also, from my reading as a parent, the advice would seem to fall mainly under the remit of education, rather than health or soc services, so how relevant will this be (education can just ignore the guideline can't it?)

    Would love to read a post of yours on this

    Thanks

    Thanks

    ReplyDelete
    Replies
    1. I will certainly send in a reply to NICE of some sort and would be happy to post the same thoughts on my blog. May take a little while - I haven't had the chance to look at the document that is out for consultation.

      Delete
  2. I find its the professionals not my son that causes me stress!

    ReplyDelete
    Replies
    1. Very good point and we have other data on this so I will work on a blog to add this info. With this first blog I just wanted to introduce the idea that not everything is negative and also not necessarily about the child themselves. Many thanks for the prompt though.

      Delete
  3. I understand the parents situation when they are comforting and taking care of their children and babies, such kind of stressful feeling. But there are proven methods you can use to reduce your stress. And this article will share some ways that you can finally start to relax.

    ReplyDelete