ARCHIVED The Spectrum: A little high, a little low
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
As a psychology student studying Autism, the idea of an Autism Spectrum appealed to me. I liked how it could reduce a plethora of ‘impaired’ individuals onto one simple scale with one umbrella condition that grouped them all together, whether they liked it or not. If only more mental disorders and mental illnesses could also be reduced to such a scale, revision would have been much easier, and more time could have been devoted to playing Guitar Hero and sitting in the pub garden. After my diagnosis, however, I despised this idea of a spectrum, which so easily allows professionals to ignore the individual behind the impairments. When I went to see my GP after my diagnosis, she merely reassured me that it was only ‘mild autism’ I had, and that I seemed to be making good eye contact, and then promptly touched my knee in an anything-but-reassuring manner, which made me recoil off my chair and mentally repeat the scarring event days after the appointment. Had I not been seconds away from an unexpected touch related meltdown, I would have explained to her that the term ‘high-functioning’ autism does not equate to ‘mild autism’, it simply means that I am able to function to a higher level than those diagnosed with ‘low-functioning’ autism, which is not indicative of the severity of traits I may or may not have. High-functioning means I am able to hide it better than others who are ‘lower-functioning’, not that it makes me any less anxious or any more skilled in those areas. Take for example eye contact; one of the first things people often say to me when I tell them about my diagnosis is that my eye contact seems too good for an autistic person. Little do they know how anxious face-to-face meetings are for me, and how I am constantly counting the amount of time I look them in the eye before looking away.
The American Psychiatric Association (APA) are proposing to remove the term ‘Aspergers’ and high- and low-functioning altogether, and group it under the umbrella term ‘Autism Spectrum Disorder’. This will mean that the Diagnostic and Statistical Manual of Mental Disorders (DSM), which provides one of the main set of criteria used in the UK for Autism diagnosis, will also be changed. Aspergers was first introduced into the DSM as a separate disorder to Autism in 1994, 14 years after Infantile Autism was first recognised in the manual. These two conditions were grouped with several others under the term ‘Pervasive Developmental Disorders’. This seemed like a massive step forward for the Autistic community, many now fear we are taking several steps backwards. Francesca Happe from the Institute of Psychiatry, however, believes that the changes will not have negative consequences. She emphasises that there is no basis to distinguish Aspergers from ‘high-functioning’ autism, and the disorders have been known as a ‘spectrum’ for years. The National Autistic Society’s (NAS) experts Lorna Wing and Judith Gould on the other hand, are recommending that the Asperger subgroup remain. In a paper they have submitted to the APA they instead call for stronger focus on social imagination, diagnosis in infancy and adulthood, and on the possible under-diagnosis of girls and women with autism. The verdict seems split amongst the professionals, always a reassuring sign!
The change in diagnosis terms will mean the triad of impairments previously relied upon by professionals will be reduced to two main areas: social communication and interaction, and restricted, repetitive patterns of behaviour, interests or activities (FYI I don’t think it takes a genius to work out the fundamental point of calling it a triad of impairments seems to have been missed…). Sensory behaviours will be included for the first time, and an emphasis during diagnosis will change from giving a label to identifying the needs of a person. On paper this sounds like a great leap forward, however, when the fact that there are no services available, this change of emphasis seems a bit redundant. The NAS also points out that the minimum criteria for level 1 severity ‘needs support’ are considerably higher than the minimum criteria for a diagnosis. Will this mean people deemed to be below these criteria will not even receive a diagnosis in the first place? If so, we might as well scrap the last twenty years of autism research. Bizarrely, they are planning on introducing another disorder to the group, which will be known as ‘Social Communication Disorder’ and does not include restricted or repetitive behaviour in its criteria. They have also assured that the changes will not affect those already diagnosed with Asperger’s, however, realistically how can it not? Many will be bumped down to ‘mild autism’, and the individual and specific needs associated with the condition will gradually fade away as new generations of doctors take over our current professionals. Ironically, if these professionals knew anything about Asperger’s and autism, they would know how much most of us hate change, which makes me doubt their expertise at all!
Overly opinionated and biased rant over, how do you feel about the proposed changes?
These changes will be included in the 2013 revised DSM manual. More information and contact details can be found at: www.dsm5.org/pages/default.aspx