Wednesday, 6 March 2013

Recovery from autism: false hope, or the wrong question?


There has been considerable media interest in recent weeks in the question of whether children recover from autism – whether they can be “cured” of autism. This interest has come in response to a new research study published in the Journal of Child Psychology and Psychiatry by Deborah Fein (from the University of Connecticut) and colleagues (JCPP, 2013, volume 54, issue 2, pages 195-205).

The Fein et al study focuses on the idea of optimal outcome for some children with autism. The researchers found a group of children who were diagnosed earlier in childhood as having autism and then when followed up they did not meet diagnostic criteria for autism any more. Thus, these data have been discussed in terms of the possibility of recovery from autism. The published study is very carefully done and all effort has been made to try to ensure that the initial diagnoses were valid and that currently these optimal outcome children do not seem to have autism.

The potential for recovery makes a great media story. Experts have weighed in on both “sides” – some suggesting that recovery may be possible and others simply stating that autism is a lifelong difference or disorder and so recovery/cure is not possible. I have been asked several times whether these research results, and the stories about them, offer false hope for families. This blog is a reflection on some of the issues as I see them.

Are the data believable?

As already stated, the Fein et al research has been carried out very carefully. However, the authors themselves are careful to point out the limitations of their design. Most importantly, because diagnosis is an imperfect process they cannot rule out the possibility that the children were misdiagnosed earlier in childhood. Since researchers (at least currently!) cannot go back in time to examine their sample as younger children, we can never know whether misdiagnosis happened. The children were recruited precisely because they were once thought to be autistic and were now thought not to be. Thus, they were diagnosed by a variety of professionals in a variety of different geographical areas. Therefore, the factors in play at the time of their diagnoses are likely to be many and varied.

A second issue is that it is not enough to show the existence of a group of children who once did but do not now “have” autism. We would need to be able to say how this happened. Although not the focus of the published study, media reports have suggested that the research team have some other evidence to suggest that many or all of these “recovered” children have had intensive early interventions. This is certainly a hypothesis that is worth exploring. However, a clear causal theory underlying the purpose of an early intervention would also be needed (see my Autism and Evidence 1 blog – http://profhastings.blogspot.co.uk/2012/12/who-do-you-believe-model-for.html).

Let me explain this theoretical point. My understanding is that there is as yet no single identified cause of autism. In fact, a long list of potential variables has been identified as linked to autism including genetic factors, other biological causes, and social and environmental factors. We would need to be able to track backwards through a logical argument to establish with more certainty whether recovery has happened. That is, we would need a clear statement of what the causal factors are, how to turn this information into an early intervention format, and then to show that this intervention (and not something else) resulted in the loss of an autism diagnosis. I doubt if this logical model, with related intervention research evidence, is available to support the idea of recovery.

Some researchers have suggested that we can look to changes in the brain to see if early intervention has “normalised” brain function in children with autism exposed to early intervention. Given that existing early intervention models currently rely on increasing skills or teaching new skills to children, then brain changes would be expected – our brains change in response to experience such as new learning. However, understanding what such research might mean in terms of recovery is very complicated, and would require some demonstrated links between “biology” and behaviour.

In summary, there are limitations to the research evidence so far, and also a serious lack of evidence clarifying how recovery might happen if indeed it does.

The wrong question?

A more fundamental problem for me is that discussion about recovery or cure in autism is not a helpful question in the first place. There are two main approaches to understanding or working with autism, and only one of these leads one to ask questions about recovery. Following a medical model, autism (putting things simply) is a disorder with a biological underpinning. From this perspective, it makes sense to explore medical causes of autism (e.g., genes, environmental poisons, and differences in various biological processes in the body). A medical discourse is also strongly rooted generally in “cure”. Consider, for example, research and media representations of cancer – basic medical research seeks to understand why cancers occur and to use this information to devise new pharmacological or other treatments.

Non-medical perspectives on autism are varied but essentially they have a social-educational focus. These varying perspectives consider autism as a difference, and understanding the nature of the difference is important. Support or intervention is then not about treatment but about developing ways to ensure the best quality of life for individuals with autism and their families and carers.

Early intervention models with existing good evidence (e.g., the Early Start Denver Model, Early Intensive Behavioural Intervention and the like) have a clear educational focus – they are about developing or accelerating important cognitive and social skills in young children. These interventions do not simply focus on trying to change or take away autistic behaviours. Thus, I believe that their underlying rationale is to achieve the best outcomes that can be achieved for every individual child with autism. Early educational interventions were not designed to somehow cure autism but to make a positive difference to each individual child and their family.

So, here’s the point. Linking educational early intervention to the notion of recovery or cure is mixing two completely different understandings of, or approaches to, autism. These approaches are, in my mind, directly opposed.

In the absence of convincing biomedical research and “treatment”, we should be asking the “right” question – what can be done to provide the best quality of life outcomes for children with autism and their families? And not just for children. Whilst millions are spent on biomedical research, we are struggling for evidence about how best to organise education for children with autism, what social care services in adulthood will lead to the best outcomes, and what supports are needed for adults with autism to engage with employment and the independent life they want to lead.

7 comments:

  1. In cases of High Functioning Autism or Asperger's Syndrome I believe there may be some evidence to suggest that improvement shown in symptoms may be that they are managed rather than cured.

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  2. Good point - it would take some very careful detective work to establish what has happened in cases where autism symptoms are no longer immediately apparent. Another reason why the Fein study is in the end hard to interpret.

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  3. great blog post, as ever.

    I have a close family member who, were we in the US, would definitely be called "cured". She certainly wouldn't get a diagnosis now.

    Two reasons for this jump out at me - 1) she was diagnosed at the outset with mild autism and 2) she has always had a high IQ, meaning she effectively learned how to behave non-autisticly. Perhaps the fact that she's female is also a factor, with greater skills of empathy and greater social awareness?.

    Never seen it happen with an autistic kid at the more severe end, with impaired IQ.

    Thanks for the inteliigent and thought-provoking discussion.

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  4. One of the variables related to the group in the Fein research is that they were probably initially more high functioning. In addition, I think they also reported less severe "symptoms".

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  5. I think the question is a valid one, even if recovery may only be possible for a certain section of patients. If recovery was possible for ONLY high-functioning autistic individuals, wouldn't that still be worth exploring? I am not looking for a cure but I believe my son to be at least somewhat recovered, after 2 years on GAPS/SCD diet. And he was diagnosed by 2 separate teams, one private and one public. I don't believe he was misdiagnosed. Any kind of hope should not be discounted, but explored fully.

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  6. The will to win, the desire to succeed, the urge to reach your full potential... these are the keys that will unlock the door to personal excellence.
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  7. Thank you for this. Thought provoking.

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