Autism, Aspergers and the rise of the Neurotypical…
Firstly a declaration of interests, of sorts, I am what some people would call normal what others would call a neurotypical individual who has worked with individuals who have required 24/7 support to cope with their ASD. I have also met many people who could either be defined as having ‘high-functioning’ ASD or aspergers who, to my mind, have barely fitted the necessary criteria of impairment to really be considered for the diagnosis they have received.
Of late I’ve been involved in a couple of debates of late on the nature of mindblindness and theory of mind in autistic spectrum disorders and have become aware that there is a movement,or school of thought, within the autistic community that rejects the commonly given definitions of these terms and their validity to explain the experience of being autistic. I intend this post to be a brief look at some definitions and a discussion of the debates I’ve been involved with (and perhaps reference to the growing community that opposes the definitions given by psychology and refutes scientists understanding of their experiences) .
How ambitious a project this is for a lazy Saturday afternoon I’m not sure… Hopefully, at the least, something readable and of mild interest will be produced!
According to Colmans 2001 edition of the dictionary of psychology the terms are defined as follows:-
Theory of mind (n) Peoples intuitive understanding of their own and other peoples minds or mental states, including beliefs and thoughts.
Mindblindness (n) A Specific inability to appreciate other peoples mental states.
Autistic disorder (n) A pervasive developmental disorder characterised by gross and sustained impairment of social interaction and communication; restricted and stereotyped patterns of behaviour, interests and activities; and abnormalities manifested before age 3 in social development, language acquisition or play. Symptoms may include emotional non-responsiveness, lack of reciprocity in social interaction, failure to develop peer relations, delay or failure of speech development, stereotyped and idiosyncratic language usage or non verbal behaviour (including gaze aversion, hand flapping etc) insistence on sameness and ritualised mannerisms.
Aspergers disorder (n) A pervasive developmental disorder characterised by severe and sustained impairment in social interaction together with restricted, repetitive or stereotyped patterns of behaviour, interests or activities. Causing clinically significant impairment in everyday living, without the language and cognitive deficits characters tic to autistic disorders but in other ways similar to it. Usually found in males.
Neurotypical syndrome (n) a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity. Neurotypical individuals often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone. NTs are often intolerant of seemingly minor differences in others. When in groups NTs are socially and behaviorally rigid, and frequently insist upon the performance of dysfunctional, destructive, and even impossible rituals as a way of maintaining group identity. NTs find it difficult to communicate directly, and have a much higher incidence of lying as compared to persons on the autistic spectrum. NT is believed to be genetic in origin. Autopsies have shown the brain of the neurotypical is typically smaller than that of an autistic individual and may have overdeveloped areas related to social behavior.
The above referenced site offers a reasonably good summary of what it calls autistic outrage something which is close the sort of discussion and debate I have encountered on the web about ASD. I hope the author doesn’t mind me reproducing it, I will of course remove it if asked.
About a year ago I learned I was on the autistic spectrum. Inspired by this discovery, I read everything I could get my hands on about the autistic spectrum. Much of it makes sense– for the first time in 41 years, I had a description, albiet an unexpected one, that fit me. But a lot of what I’ve found out there, mostly written by “experts” and “professionals”, has been arrogant, insulting, and just plain wrong. My bête noire of the moment is finding my emotions described as “flat”. As someone with considerably greater expertise in my emotions than the “experts”, I can state unequivocally that my emotions are not “flat”. They are different, yes, but they are most certainly not “flat.” Perhaps tomorrow I’ll be fired up over being described as “lacking empathy”. Or I’ll be outraged at an exceptionally clueless “training” method being inflicted upon autistic kids. Or maybe it will be some new paper written by some “expert” from the perspective that neurotypical perception is correct, and my brain is a genetic mistake. My brain is a jewel. I am in awe of the mind that I have. I and my experience of life is not inferior, and may be superior, to the NT experience of life.
It summarises for me one of the almost catch 22 type disclosures I’ve encountered when discussing this. Many of, although not all, the individuals I have met diagnosed with autistic/aspergers disorders have been quite happy that they now have a means to understand why they are different, why they might not behave or appear to think like everyone else. Yet there are certain, perceived as negative aspects, of their diagnosis that stick in individuals craws – flat effect being that which is mentioned above.
Affecive flattening (n) Reduced or absent expression of affect associated with certain mental disorders.
Affect (n) Emotion of subjectively experienced feeling.
From that definition you can probably see why such a thing could (and is) seen as offensive to people who are told it may apply to them. To be seen as cold and emotionless is not a positive attribute inthe culture of today- unless perhaps you are Margret Thatcher… Indeed if you look at the diagnostic criteria below there are probably quite a few things that could be seen as offensive.
Box 1: Diagnostic criteria for classic autism according to DSM-IV-TR™
A A total of six (or more) items from (1), (2) and (3), with at least two from (1), and one each from (2) and (3):
- Qualitative impairment in social interaction, as manifested by at least two of the following:
- (a) Marked impairment in the use of multiple nonverbal behaviours such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
- (b) Failure to develop peer relationships appropriate to developmental level.
- (c) A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a lack of showing, bringing or pointing out objects of interest).
- (d) Lack of social or emotional reciprocity.
- Qualitative impairments in communication as manifested by at least one of the following:
- (a) Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).
- (b) In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.
- (c) Stereotyped and repetitive use of language or idiosyncratic language.
- (d) Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level.
- Restricted repetitive and stereotyped patterns of behaviour, interests, and activities, as manifested by at least one of the following:
- (a) Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.
- (b) Apparently inflexible adherence to specific, non-functional routines or rituals.
- (c) Stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements).
- (d) Persistent preoccupation with parts of objects.
B Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (a) social interaction, (b) language as used in social communication, (c) symbolic or imaginative play.
C The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.*
Like all psychiatric diagnoses there is a high degree of subjectivity in how the criteria are applied excepting perhaps section 3 which I think does allow for a more objective assessment. I would also personally give more weight to diagnoses based more on section 3 then the other 2 partly because the first two are worrying close to medicalising behaviour and partly because the most severe cases of autism in individuals I have seen have involved at least all of the factors from part 3.
I can see why part one (b),(c) and (d) could be seen as offensive and they are again reasonably subjective. Although I think lack of emotional/social repricoity can be operationally defined and measured quite well in research. I think part two parts (b) and (d) suffer from the same problems and that perhaps (c) could at least mention echolalia… Otherwise potentially every student whose ever quoted the Pythons is in a spot of bother!
I also worry that there is perhaps a tendency for the “negative aspects” to jump out and dominate those aspects that some individuals draw some comfort from and gain a level of insight and understanding about their own behaviour. Even with the criteria above there are many different combinations that result in a diagnosis of ASD some will include negative aspects related to social functioning but nigh on each diagnosis will be idiosyncratic and individual. Or to put it another way just because someone says individuals with ASD are likley to have flat affect it doesn’t mean that a specific individual with ASD will.
I also maintain that ASD/aspergers/neurotypical are all on the same continuum but would argue that arbitary defintions, delineations and demarkations are nessecary in research purely so that research can actually take place. Research requires operational not essential definitions and as such has to (an extent) artifically define boundries between ASD and NT’s. To put it another way there will be a lot of NT’s who display 5 items from part one on the DSM scale and aren’t labelled autistic just as there will be those with ASD who only just fit the criteria. Qualitatively there could be many who just miss the diagnostic criteria that perhaps would be considered “more autistic” then those who just fit them. But research requires very exacting definitions to proceed and thats where I think much of the problem arises…
The diagnostic criteria is flawed to a degree yes. However I don’t think this justifies the seeming throwing out of the baby with the bathwater when it comes to research on ASD. In short my point is that there can be reasoned discussion of research results and flaws in definitions and the like, and there is somewhere but I can’t find the links dammit!, without resorting to ad homien attacks and relying on claims of special knowledge.
My message is simple we shouldn’t simply reject research we don’t like or that doesn’t conform to our expectations or preconceptions we should question its validity using the language of research. By proving it’s method to be shoddy, it’s definitions unsound or even better by conducting research that directly falsifys its findings. Otherwise all we end up with is rhetoric and dogma and that, to my mind, is anti-progress, anti-understanding and anti-science.
It would be more then prudent to point out at this stage that this is not just something that the autistic community does it’s something that all humans do. As someone famous whose name I can’t remember once pointed out “the only difference between doing research on animals and research on humans is that humans can complain”.