Review: Autism Strategy – Impact Assessment

The article reviewed here is a Department of Health document  ‘Impact Assessment of Autism Strategy’ and freely available here. An impact assessment is used to assess the likely consequences of a policy. A good description of what an impact assessment means is found here. This impact assessment examines the likely consequences of the Autism Strategy (details of the autism strategy can be found here). The Autism Strategy is an important policy which has multiple aims including achieving an increased awareness of autism as well as ensuring that people with autism gain access to the services that they need. While i’m familiar with impact assessments, this is the first one i’ve seen. The document is fairly brief and if the reader moves to the end of the document there is a ‘specific impact test’ checklist. This summarises some of the information that has been used in the assessment. There is a long column of no responses in the evidence base column for this checklist.

On returning to the main document and reading through this, there are lots of very sensible suggestions about the costs and benefits of different parts of the strategy. These were made, I thought, using a top-down approach which I would contrast with the bottom-up approach associated with evidence-based approaches. I thought perhaps that some of the more detailed assessments of the impact would become apparent if pilot programs have been completed for instance. There are undoubtedly many approaches to increasing awareness which would be expected to have different effects. I was impressed by the structured approach which follows from the strategy in trying to improve the quality of life of people with autism in the population.

Society and culture are complex entities. To what extent does a population continue along a ‘natural’ trajectory and to what extent can the ‘ship be steered’ in a particular direction? This question is applicable not just to the autism strategy but also to social interventions in other conditions. So if we take one extreme. Suppose somebody puts up a sign outside a shop which says think about employing people with autism. Suppose also that this was repeated in every city, town and village in the UK. This would be costly but I would also say that this is ‘passive’. People walking past can see the sign but they do not necessarily have to respond. Maybe a small percentage of people in a position as employers will go on to employ people with autism on the basis of seeing these signs. I’m not sure what percentage it would be. A percentage of people with autism would be employed who might not previously have been employed, members of the general population would have increased exposure to people with autism and also those people with autism would have increased exposure to the general population. Thus inclusivity is increased. For argument’s sake, let’s say that 5% of all people with autism who can be employed but are not presently, receive work through this means. That means that the population has ‘moved’ very slightly in the desired direction and optimistically we might say there has been a slight improvement in the overall quality of life of people with autism (there are a lot of assumptions in this last statement).

However  because the job market is a competitive market, even with the increased awareness, people with autism will face competition for jobs. One assumption could be as follows. If awareness needs to be raised for people with autism, then without this people with autism might be at a disadvantage in getting jobs. Why would this be so? Perhaps through stigma in the general population – after all would there be a need for an autism strategy if inequalities did not already exist? But where does stigma come from? Autism is a relatively recent diagnosis that has been around for some 60 years. There is a likelihood that the stigma arises not just because someone has been given a label of autism but from something independent of labels and diagnoses. This something else is typically what would lead to the pathway to diagnosis in the first place. Without the formal pathway, it is left to members of the general population to make their own judgements which is what people tend to do. People with autism cannot be stereotyped. They can be highly individual. However they can have difficulties with communication – for instance non-verbal communication. So perhaps members of the general population might make a note of these difficulties and make a judgement. This in turn might play a role in the job market and may or may not put the person with autism at a disadvantage.

The end result is that while the general population might move in a certain direction passively with advertising campaigns, there will still be a lot of people who don’t know what autism is. Maybe some people who are educated about this might forget. Or they might remember and still their prejudices remain. So returning to the original question, can social engineering succeed? The formal and reasoned process outlined in the document meets society which can respond explicitly and formally but also implicitly and covertly.  What would be interesting is to see how the two are differentiated. There have been advertising campaigns to raise awareness of different illnesses. How much exposure to the messages do people need? I would argue that a subtle marker of how much awareness there is in society is reflected in figures of high status. For instance how many people with regular programs on the television or radio have autism? Why are people with autism not included in society as much as they should be? There will probably be many reasons that people would give for this and perhaps that people with autism themselves might give.

What would happen if there was explicit legislation for autism? So for instance, what if employers were required by law to include people with autism in the interview process at least or perhaps would employ people with autism in a certain percentage of positions in large organisations? As with the arguments above, this might lead to an overall improvement in the quality of life for people with autism (again with various assumptions). Employers who are unfamiliar with autism might need to learn about autism. Or they might not. Would employers need additional skills and therefore need training? What skills would they need? People with autism might need routine and might become distressed if this is not present. However everyone is different and so it would be dependent on the individual. These types of questions though are quite useful to ask, particularly in a research setting. What percentage of employers think they require additional training? What percentage of employers actually do need it in practice? How does this vary from one job to another? What additional training might people with autism need to help them manage better in different environments? How does the type of training interact with their individual qualities? Obviously there are lots of questions. Quantitative responses to these types of questions are useful beyond impact assessments and apply to the development of services and effective integration of people with autism into society.

So in summary, I thought this impact assessment gives a broad overview of how the autism strategy might impact on practice. There are lots of interesting research questions that can be asked about this. Each question can take us in a different direction and provides us with many possible interpretations of how to act on the knowledge gained. Hopefully, like the dementia strategy, the autism strategy will have many benefits for the people that it is designed for.

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