So what's the question? What do you mean by signficance?

I am quoting Baron Cohen. His autism quotient represents an autistic spectrum occupied by the general population. He suggests that individuals may score high for autistic traits but may not have symptoms that are significant clinically. Therefore, they may not qualify for a diagnosis of autism. With changes to the DSM, I am wondering how clinical significance is now defined. I think that this has implications for how we diagnose, who we diagnose and how we target interventions. My interest is in adults with autism and the types of interventions that may be of support to them.

OK, in general, clinically significant in that sense implies that the traits are affecting the person's life in a deleterious manner causing the person distress. This could be holding a job, maintaining friendships, etc.

Thank you, that is very helpful. If you are evaluating difficulties in romantic relationships, is there a point at which one might shift attention away from autism as the problem and look at difficulties in the couple? For example, autistic traits may be recognised in one spouse and not the other. These differences may cause friction in the relationship. At what point does the cliniican identify autism as the cause of the friction as opposed to, say, rigidity in the couple as a whole?

I would suspect you would have to make that judgement by observation of the couple and interviews of both

Thanks

Hello. I've been researching autism in terms of the subjective nature of diagnosis, the extensive bias in the diagnostic process, and the continuing shift in definitions. The most interesting information about what constitutes autism (and how to intervene) is actually coming from the autism community itself, though some researchers such as Morton Ann Gernsbacher, Laurent Mottron, Michele Dawson, Richard Grinker, Dawn Eddings Prince, and Elinor Ochs are refining the definition of autism from within their respective disciplines.

This definition is from autistic scholar Nick Walker:

WHAT IS AUTISM?

Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.

From : http://neurocosmopolitanism.com/what-is-autism/

thankyou! that is the most articulate expression of current thinking that I have come across. It seems to me that this argument points towards diagnosis by neuroimaging. Currently, diagnosis relies upon behavioural observation by the professional. Would you support a move towards diagnosis via neuroimaging? I'm just wondering what the implcuatuons of this might be.

I don't know that neuroimaging would be conclusive; I haven't seen research to suggest that. However, there are good data that suggest that eye tracking in infants as young as 6 months is a good indicator -- and that's much easier to identify. The question then becomes how to address the issues, and linguistic anthropologist Elinor Ochs and colleagues have very pertinent information on effective interactive approaches that support the neurology and sensitivities of autistic children.

One of the central themes I'm discovering in my research is the extreme amount of stigma that is attached to the autism diagnosis. The diagnosis also shifts every five years or so based on often subjective medicalization practices. When people talk about treating autism, and they haven't looked at stigma, at disability rights scholarship, and at queer theory and crip theory, what they tend to be doing is enforcing uncritically assessed behavioral norms on the bodies and lives of autistic people.

A very interesting movement that started in the 1990s in the autism community is the "neurodiversity" movement, which borrows from the idea of biodiversity and posits that autism is a function of neurological diversity, and not a disease. Nick Walker, above, is also one of a number of autistic scholars who are spearheading "neuroqueer" theory.

I equate our current hyper-medicalized approach to autism with the pre-1973 approach to homosexuality in America. Before 1973, homosexuality was defined as a psychiatric disorder, and the entire focus was on erasing homosexual people and forcing them to pass as heterosexual (or to live in exile -- closeted or not). If you look at the extensive, expensive, and rigorous reparative behavioral therapies applied to autistic children (which actually sprang from reparative therapies for homosexuals), and the ways that autistic bodies and minds are regularly and reliably stigmatized and called out as 'other,' the parallels are stunning.

So early treatments, or treatments of any kind, for autism need to be examined ethically in regard to what, exactly, people are trying to "cure."

Thank you for such a full answer. I think we are coming at the same issue from different angles. I am a couple therapist and a counselling psychologist in training who is researching neurodiverse couples (I am using this to mean couples where one member has a diagnosis of ASD and the other does not). Some studies support the idea that changes to diagnostic criteria in the past have led to increases in numbers of people being diagnosed with autism. I therefore believe that the gap between autism and the general population is closing. For the couple therapist working with neurodiverse couples, this poses interesting questions which touch upon the points you raise above.

I am aware of the heavy weighting of behavioural and cognitive research. Meanwhile certain neurological studies present an autistic continuum defined according to gender. This suggests that we all occupy posiitons along the continuum. Those with ASD occupy a position at one far end known as extreme maleness. So Autism is either represented as a condition that is distinct from humanity or as a more extreme version of one aspect of humanity (ie maleness). In either case, this manifestation is considered disordered.

There is very little written about couple therapy with autism but what is written is either behavioural, or suggests that couple distress disapears once the non-autistic spouse learns to live with it. There does not appear to be an in between ground. So we either have the "disordered" partner who just needs to be accommodated, or the long suffering partner who needs to be supported. A life together means a number of behavioural adaptations. What seems to be missing is a sense of the the couple and their emotional lives together.

I am trying to provide some insight into this by researching how couples manage closeness when one has a diagnosis of autism. I am currently struggling with the behavioural criteria of diagnosis. My difficulty is partly with the fact that it lumps a heterogenous group together according to what is problematic about an individual in relation to others. This makes it very hard to understand the individual with the diagnosis or to make sense of the challenges that the couple as a whole must face.

The cognitive/behavioural/neurological weighting of research has done little to increase our understanding of how affect is managed in close relationships where there is autism. The extreme maleness theory, for example, places systematising at the male end of the spectrum and empathising at the (i presume) female end of the spectrum. This assumes that empathy and systematising are mutually exclusive and that individuals with autism (also men) are less able to empathise. It does not help us to understand how emotions are experienced or communicated and how this impacts on intimacy for the couple.

In the mean time clinicians are left taking sides. Either they can diagnose one individual within the couple as autistic or they can brush off the complaints of the other spouse as not problematic enough to fulfill the criteria of clinical significance.

Ah, yes. I think there is written material within the autism community about couple's therapy -- and I think that the Autism Women's Network has something as well. I can check in the community and see what's available.

The extreme male brain theory has been dis-confirmed, and the focus now in neurodiversity-aware and disability-rights-focused research is on understanding autistic people as a minority having difficulty understanding majority norms rather than as socially incapable people. In terms of empathy, you'll see that in a group of autistic people, tremendous empathy is present. Autistic people tend to understand and empathize with each other naturally, just as neurotypical people do with each other.

The good couples' work I've seen helps the neurotypical partner learn how to identify autistic ways of being, autistic sociality, and autistic needs rather than placing all of the responsibility on the autistic person to "act normal" or empathize in neurotypical ways and focus on neurotypical needs. These are not relationships between a well person and a sick one; these are cross-cultural relationships. This therapist in Seattle writes about the difference: http://www.aspiestrategy.com/2012/06/hidden-autistics-iv-safety-first.html

There's also this book: Asperger Syndrome and Long-Term Relationships: http://www.amazon.com/Asperger-Syndrome-Long-Term-Relationships-Stanford/dp/1843107341/ref=pd_cp_b_2

Thanks for these they look interesting. I'll look up some of your suggestions and see what I can find.

I agree with you regarding empathy and am sure that it is widely discredited in the disability rights focused literature. I 've done a quick search and the extreme male brain theory is alive and well in the scientific literature. Can you recommend any of the articles to which you refer?

Besides calling it out for gender essentialism, it's not holding up in careful review. In neurology, gender essentialism is called out in the book Pink Brain, Blue Brain: http://www.liseeliot.com/pink-brain-blue-brain

And a recent study dis-confirming EMB studied people with congenital adrenal hyperplasia, which is a condition that involves high prenatal testosterone, and in which patients have no autistic traits. It's a good overview of the controversy: Barbeau, E. B., Mendrek, A., & Mottron, L. (2009). Are autistic traits autistic?. British journal of psychology, 100(1), 23-28.

As I'm working through hundreds of studies for my thesis, I've learned a few names to watch out for, and TOM, EMB, lack of empathy (including the idea of affective versus cognitive), high and low functioning language, and the conflation of nonverbal autism and low intelligence -- if they're not called out or challenged -- are all warning signs that I'm in old research, or that I'm reading an unaware researcher.

haha, yes, I have all those golden oldies. Thanks for the heads up. I'll look out for those references.

" Would you support a move towards diagnosis via neuroimaging? I'm just wondering what the implcuatuons of this might be."

I don't think this is practical, even if desirable. There is no evidence I know of that autism is due to primary brain damage, disorder or malfunction. The brain imaging abnormalities are better explained as a reflection of the sensory symptoms, or of brain reorganization or compensation in order to cope with them. There is no upper limit to IQ in autism.