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
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 10th 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 4th
revision (DSM-IV), although the 5th (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
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
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