autism explaining the enigma
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Autism explaining the enigmaTRANSCRIPT
744 vol 27 no 10 october 2014
Howlin, P., Savage, S., Moss, P. et al.(2013). Cognitive and language skillsin adults with autism: A 40-yearfollow-up. Journal of ChildPsychology and Psychiatry, 55(1),49–58.
Wing, L. (1996) The autism spectrum: Aguide for parents and professionals.London: Constable.
Autism is a developmental disordercharacterised by impairments insocial interaction and both verbaland non-verbal communication,along with restricted, repetitive orstereotyped behaviour. Followingmore than a quarter of a century of extensive research frompsychologists, are we any closer to explaining the enigma? Hasstretching the diagnosticboundaries helped or hinderedscientific and practical progress?
A critical step in ‘solving thepuzzle’ of autism is to consider themyths and realities surroundingautism, both for those living with it and their relatives. This issuegathers a variety of perspectivesfrom those people and from leadingresearchers in the field.
At this time about 25 years ago I wasnervously awaiting readers’ reactionsto my book. Having been persuaded
to go with the title Autism – Explaining theEnigma, I knew for certain that I hadn’texplained it. I had laboured on it for yearsand years, and most of the time I felt‘Who am I to even try and write such abook?’ The main antidote for this feelingcame from fellow psychologist JohnMorton, who egged me on from draft todraft with words like ‘you have somethingto say, so say it’.
In those days, books on autism were a rarity, and people were just beginning toask what autism was. The film Rain Man,starring Dustin Hoffman and Tom Cruise,was a milestone in the rise of publicawareness of autism. I remember howdifficult it was for bookshops to decidewhich of their sections was suitable for thebook. Mostly, it was placed with psychiatrytexts, and ironically Frith was placed nextto Freud. I would have much preferred tobe placed with books on experimentalpsychology, because I believe thatpsychology provides thespace where the enigmamight eventually besolved. I could notimagine then that therewould be a time whenbooks on autism fill theirown section, and whenthere would be this special issue of The Psychologist.
Almost as soon as I had finished the Enigma book, I became hopelesslyattracted to Asperger syndrome. With time I met an increasing number ofunusual adults with a provisional diagnosisof autism, who amazed me because theywere far more able to converse than thenow grown-up children whom I had firstseen when I started doing research onautism in the 1960s. What struck me was their ability to provide insightfulobservations about their experiences. Thatopened up completely new possibilities toinvestigate the autistic mind. Adults likethis had been mentioned by Hans Aspergerin his landmark paper from 1944. I setabout translating this paper and got intouch with other researchers who were
similarly struck by these individuals, and the result was a book on autism andAsperger syndrome. I never anticipatedhow dramatic the impact of the concept ofAsperger syndrome would be in the briefhistory of autism. Many psychologists andpsychiatrists had only just become awareof autism, and now they had to embrace a whole autism spectrum (Wing, 1996). I believe the impact is still felt even if thelabel Asperger syndrome no longer appearsin the 5th edition of the Diagnostic andStatistical Manual of the AmericanPsychiatric Association.
One of the positive effects of theinterest in Asperger syndrome is that wenow know that autism can occur at alllevels of intellectual ability, including verysuperior levels. On the negative side, thismakes us sometimes forget that about halfthe cases diagnosed with an autismspectrum disorder suffer also from amarked degree of intellectual disability. It is this substantial group that presents the most challenging behaviour and themost difficult problems of management.However, problems in managing lifecannot be blamed on intellectual disability.Instead they are the consequence of theprofound social communication problemsthat are at the core of autism. In a trulyepic study that reported a 40-year follow-up of 45 autistic individuals with an IQ>70, Howlin and colleagues (2013) foundthat 83 per cent were unable to liveindependently. Here is a plea forpsychologists to take up their cause.
Now I stick my neck out to mentionanother unforeseenside-effect of stretchingthe diagnosticboundaries. With morelenient criteria andheightened awareness
of autism, the diagnosticprocess will inevitably
produce false positives. Thus, there areindividuals with problems in socialrelationships and other features that arereminiscent of autism, who have eitherclaimed or been given the label Aspergersyndrome, but actually belong to adifferent category. Sadly, this category is as yet undefined and may even be part of neurotypical individual variation.Meanwhile these people have changed the perception of what the syndrome islike. This perception is currently geared to emphasise the continuity betweenneurotypical and autistic development.While I like the idea of neurodiversity, I am not so sure that this necessarilymeans that there are only quantitativedifferences between people. The argumentis also geared to deny that the nature ofautism can be explained by cognitive
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Frith, U. (2003). Autism: Explaining theEnigma (2nd ed). Oxford: Wiley.
Frith, U. (2012). Why we need cognitiveexplanations of autism. QuarterlyJournal of Experimental Psychology,65(11), 2073-92.
https://sites.google.com/site/utafrith/recent-publications
Is it better to look at autistic andneurotypical people as being on one and the same continuum, or as fallinginto two distinct categories?Notwithstanding DSM-5, is the labelAsperger Syndrome still useful?
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Autism – are we any closerto explaining the enigma?Uta Frith introduces a special issue
“people with autism reallyhave a very different mindand different brain”
deficits. I find this problematic – but, given that I have thought and writtenabout cognitive deficits in autism all mylife, I would say that, wouldn’t I?
My deliberately provocative suggestionis to reconsider the mildest of the mild
cases of Asperger syndromes. Perhapsthese individuals should be classified ashaving ‘autistic-like personalities’ ratherthan an autism spectrum disorder.Everyone agrees that there is an enormousvariety in all our individual experience andhistories, just as there is in ourpersonalities and temperaments. Noteveryone is an extravert and happy onlywith other people. Some display littleemotional warmth and some are narcissiststhat do not care very much about othersand often don’t pay much attention toother people. There are also perfectlyneurotypical tendencies that tend to makelife difficult: pursuing a specialised interest,being obsessive, enjoying strict routines,dithering over decision, and so on. It seems to me entirely plausible thatcombinations of these social and non-social features can occur in one and thesame person and can then present anautistic-like picture. Human socialrelationships are extremely complex,
and failure is common. It is very desirableto be able to explain such difficultieswithout blame for the individual. They are indeed often outside the individual’scontrol. This is true for many medicalconditions. Now if autism is a medical
condition it can provide a ‘no-blame’explanation. This would explain whyperfectly neurotypical people like the ideathat they – or one of their neurotypicalfriends – may be a ‘little bit autistic’.
However, there is a conundrum. If you follow the argument above, theseindividuals do not have a medicalcondition. They may feel different fromother people, but aren’t we all different and don’t we all have our problems? And this is how I understand the campaignfor neurodiversity. It would make perfectsense, for some people, to argue forabandoning the idea of autism as aseparate and pathological condition. Afterall, these individuals do not suffer fromany ‘condition’, and it is indeed wrong tosay that they have cognitive or emotional‘deficits’. They just have problems thatmight be a little bit worse than those ofmany other people. However, although I am entirely on the side of theneurodiversity campaign, I draw a line at
including the whole of the autismspectrum. I am very well aware that thisargument is still running and that it willtake a lot of discussion and also empiricalresearch to find out whether the line I want to draw can really be drawn.
But here is the line I would like to draw: people with autism really havea very different mind and different brain.To me this has always been whatattracted me most to autism. It is veryrare and a precious gift to get a glimpseinto another mind that operates ondifferent assumptions and with differentpremises. However, there need to beother voices in this discussion. Shouldwe believe only in continua andquantitative differences, or by contrast,in categorical and qualitative differences?This is an enigma that is tantalisinglyhard to resolve. I know which side I amon, but I am prepared to change mymind if the weight of the evidenceconvinces me.
Are we getting any closer to solvingthe puzzle? A critical step in this journeyis to bust myths that have accumulatedand to listen to voices from all parts ofthe community and from all those whoare directly touched by autism. Mythsand truths about autism have beenintertwined in the many representationsof autism in literature and film and ourattitudes are often conflicted. We like tosee autism as an interesting personalityvariant with potential for creative genius.This is what films and fiction mostlyportray. We can also see that autism canbe a terrible obstacle to living anordinary life. We find it easy to be
sympathetic to young children withautism, but often hard in relation to someadults, let alone old people. If the voices ofpeople with autism are also heard they willgive an important counterbalance toresearchers’ and professionals’pronouncements. Only by putting togethermany different viewpoints will weeventually know what autism is really like.
The sheer quantity of publications andits presence on many dedicated web pagesconfirms that autism research has thrivedin the last 25 years. It has flourished inparticular in the UK, and some of our mosttalented psychologists are represented inthis issue. It is thrilling to me to think thatthe UK still has a head start in thepsychology of autism.
read discuss contribute at www.thepsychologist.org.uk 745
autism
Uta Frith is EmeritusProfessor at UniversityCollege [email protected]
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