Autism - What's in a name?

Autism is categorised as a developmental disorder and there are many misconceptions about what it means to be on the autism spectrum. Recent years have seen an increase in diagnoses and with it increased coverage in popular media as well as the news. Realistically the two probably feed each other as a greater awareness begets more requests for diagnosis. The question of whether the actual rate of incidence is growing is, like most areas in this subject, contentious. Despite what some groups would claim, that vaccinations, pollution or whatever is causing an epidemic of autism, there is evidence that shows a consistent level of incidence throughout the population for all age groups indicating no actual rise in the frequency of occurrence. As ever better research is required but even then the matter would probably not rest as opinion is often formed more by agenda than evidence.

For many people their perception of a person on the spectrum is a rocking Dustin Hoffman type figure reciting names memorised from a telephone directory, somebody that can read two books simultaneously or perform some other incredible feat of mental gymnastics. But autism is a spectrum and viewers of the recent Louis Theroux documentary will have seen that there are apparently vast differences between those with nominally the same diagnosis. Although popular film and literary depictions of people with autism concentrate on those with good cognitive functioning, a huge proportion never achieves verbal communication and many struggle with interaction and communication at all.

Despite much research around genetic and neurological indicators to determine the aetiology of autism, diagnosis is still based upon observations and interviews around a triad of impairments. I use the word impairment with some caution as it is a loaded term and one rejected by many in the autistic community, but it is the diagnostic terminology used. The main set of criteria used in the UK is outlined in the 10^th revision of the International Classification of Diseases (ICD-10). There is also the hugely influential American Psychological Association’s Diagnostic and Statistical Manual currently in its 4^th revision (DSM-IV), although the 5^th (DSM-V) is being field tested, about which later.

There are some differences between these systems but they both agree that to obtain a diagnosis of an Autism Spectrum Disorder (ASD) the person must show impairment of social interaction, communication and some form of restrictive behaviour.  An associated but much debated diagnosis is Asperger’s syndrome. There is a range of other Pervasive Developmental Disorders (PDD) some classified as being Not Otherwise Specified (PDD-NOS). Autism is the best know PDD and there is still debate as to whether Asperger’s is a separate condition or part of autism. The main defining factor between high functioning autism and those diagnosed with Asperger’s is that there was no apparent early delay in the development of communication for the latter.

Being diagnosed or having a loved one diagnosed with any condition can be an incredibly emotive event. For those of us that presently have no form of disability it is difficult to understand what it can mean. Labels have power and in a society that largely misunderstands disability there can be a misplaced feeling of stigma or shame. This negative attribution needs to be countered not just with autism but for all forms of disability. However that’s not the thrust of this post.

A label can also bring understanding, comfort and help. I know people that excelled academically but never fitted in or made friends at university or in general society. Their feeling of isolation, confusion and inability to interact led to depression and unhappiness. When they later received their diagnosis it helped them to begin to make sense of themselves. It didn’t remove all the barriers but now they knew they weren’t just odd, or freaks, there was a reason.

Having a diagnosis also has practical implications. It can open doors in terms of assistance and funding, particularly for younger people on the spectrum. Services for adults are less well defined but for young and old the support is often essential. Budgets for this section of society are constantly under threat as local authorities struggle to meet financial targets. You can therefore understand the nervousness of many within the autistic community with the proposed changes to the diagnostic criteria of autism in the upcoming DSM-V.

The new criteria are more specific in some ways and pull together a range of previously separate PDDs which become subsumed under the category of ASD. The separate label of Asperger’s would no longer exist and they would now also come under the definition of ASD as long as they met the required criteria. The three previous areas of impairment become two, with social interaction and communication being combined. This is a move that for many makes good sense and the new criteria also takes into account more the sensory nature of the condition and provides benchmarks for determining the “severity” of the autism.

There are several concerns by different groups and individuals about the proposed changes. One is that the revised demand to demonstrate a more specific level of restriction in behaviour could cut out many borderline cases and deprive them of the diagnosis. Some studies claim that a significant number currently meeting the DSM-IV demands would not do so under DSM-V. This doesn’t mean that their needs will no longer exist, but will it mean that they will no longer be eligible for resources that authorities have earmarked for those with the label of autistic? There is no easy answer to this and the debate between professionals on all sides and those in the autistic community continues. It’s doubtful that those currently receiving assistance would suddenly lose it, but perhaps some that needed it in the future would not be able to access it.

Others are concerned that the section outlining severity levels is too generalised and misleading. That there is a mismatch between the diagnostic levels and the severity levels that could lead to expectations of support that isn’t there or a pressure for funding bodies to push for lower levels of diagnosis in order to reduce future costs of support.

Another interesting question is how the loss of a label would affect those who see their autism as part of their identity. There is a growing and thriving community of people on the spectrum. Spend any amount of time on a forum such as Aspies Central and you will find an amazing range of people and experiences focussed around this shared identity. Asperger’s for many is more than a label or diagnosis; it is part of their personality, part of their very essence.

The autism community reminds me in many ways of the Deaf community. I've spoken with Deaf people that would prefer their child to be born deaf as it would be fully part of that community. I’ve only come across a few people with this view and other Deaf people I’ve spoken to believe that hearing or deaf, their child will be part of the community. Generally they are against prenatal screening for deafness as they don’t see the point. If people chose not to have or were prevented from having deaf children, their community, language and culture would be depleted. Deafness for them is not a disability.

The question of the heritability of autism is extremely complicated with no single gene mutation being responsible and a range of environmental factors possibly contributing to the individual’s atypical development. But if we could wipe out autism what would we lose? At a lecture I attended a scientist, who is herself on the autism spectrum, proposed that if we were able to eradicate autism we would lose no end of wonderful engineers, scientists and people who can think creatively. It’s an idea I first came across years ago in one of Asimov’s short stories called “Light Verse” where a malfunction in the wiring of a robot imbued it with the skill to create wonderful light sculptures that it lost upon repair. I’m not denying the difficulty that the condition causes many individuals and their loved ones, but I am saying that there are interesting ethical and philosophical considerations.

Before I wander too far from the point I’ll summarise. The diagnosis of autism is to a degree subjective, based on the application of criteria that are themselves being redefined. The Autism Spectrum is very broad and the people on there are individuals with ability profiles that peak and trough in varying places and to varying degrees. Just knowing that somebody has that diagnosis tells you very little about them beyond the broadest of strokes; you need to know the person.

How ever you define autism there is a whole range of interventions that purport to help with the problems faced by people on the spectrum. You would hope that research would help to determine the most effective of these but is this the case? We’ll have a look at this question in the next post.




This blog post was written by Patrick Redmond (@paddyrex) one of the organisers of Birmingham Skeptics in the Pub