Jonathan Mitchell on NeuroTribes

A FASCINATING BOOK REVIEW.  The reviewer also points to others’ reviews and commentary on Steve Silberman’s “neurotribes” book.  One of his quotes stands out for me, above the rest of his blog spot:

Most of the autistic people Silberman wrote about in his book are at the mildest end of the spectrum (assuming they’re autistic at all).

Where does he derive this understanding from, I wonder?

Source: Jonathan Mitchell on NeuroTribes

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Autism and Loneliness

Reprinted from www.autismdailynewscast.com — posted August 29, 2013 by Laurel Joss

One of the main symptoms of autism spectrum disorder is a lack of social reciprocity. People with autism have difficulty reading and using social cues appropriately. Human beings are social animals, and a disorder that impairs one’s ability to create and maintain satisfying relationships is a deficit that affects many aspects of life, both personally and professionally.
Some would argue that people with autism aren’t interested in close personal relationships. They prefer to avoid social situations, and are in fact happier when they are simply left alone. This may be true to an extent, for some individuals, but it is also possible that this attitude of preferred avoidance is a learned behavior stemming from repeated rejections after unsuccessful attempts to connect with others in social settings.

A study by the UCLA Semel Institute for Neuroscience and Human Behavior found that young adults with an autism diagnosis who suffered from social anxiety reported higher levels of loneliness in relation to their friendships, families, and romantic relationships. A similar study by Susan White in the Department of Psychology at Virginia Polytechnic Institute and State University found a positive correlation between anxiety, loneliness, and the degree of social skill deficit in school-age children with autism.

These studies show that people with autism have the same desire for connecting with others, and that they can feel just as lonely as anybody else. Behavioral interventions like ABA can teach social skills, but it is notoriously difficult to teach people with autism all of the nuances and unspoken rules of social interaction, which can vary between different people and different situations. Social stories can teach specific skills, such as how to order food at a restaurant, but it’s incredibly challenging to teach someone how to read the subtle social cues that let you know when your significant other is upset, or that your friend may be getting bored listening to you talk about the same topic again and again.

Dr. Steven Gutstein of the Connections Center in Houston Texas created a therapy model called Relationship Development Intervention (RDI®). He spent years teaching social skills to children and adults with autism, but found that many of his patients continued to have difficulties in social situations and interpersonal relationships. He created RDI® after studying the ways in which interpersonal relationships are built between typically developing children and their caregivers. These early interactions form the foundations of all later relationships, but they go off-track when the child has autism. Dr. Gutstein developed a program that systematically trains parents to offer their child a re-do of these critical early interactions, guiding the child towards joint attention, social referencing, and emotion-sharing. For more information about RDI®, see Dr. Gutstein’s website at http://www.rdiconnect.com.

Social isolation is a real problem for people with autism, even those who are diagnosed as “high-functioning.” Everybody want to belong, to connect with others, and to be understood. Developmental models such as RDI® may help people with autism bridge the gap, and lead to a higher quality of life.

EMPATHY, ALEXITHYMIA AND EKSTASIS

In keeping with the Theory of Mind hypothesis (Baron-Cohen, 1995) subsequent research like that conducted by Smith (2009) [1], Silani et al. (2007) [2] and others [3],[4],[5] have declared that persons of the Spectrum display an “imbalance” or even an inability to have empathy for others. Alexithymia and lack of empathy are supposedly correlated, indicating a link between understanding one’s own and others’ emotions. I find these points-of-view particularly curious ― as an AS counsellor, who believes, that I’ve shown much empathy for my clients.

I’m very keen on adhering to the words of Jesus as a plumb line in my therapeutic approaches. One such axiom is His greatest commandment ― to “love our neighbour as ourselves. Even a preliminary gloss of this basic axiom is that it binds Christians to a love that can say “This person claims my love, no matter what” my own interests are in describing the situations to which Jesus’ teaching binds us, specifically in terms of the challenges autism throws up for Christian love.

Few would debate that loving those with autism has its own special demands, and calls forth a special sort of patience and empathy, even suffering. Saint Paul with his thorn in the flesh called this process “sanctification.” In sanctification, our self-satisfaction, illusions, and pride are revealed for what they are—barriers to love.

One of my favourite authors, Neil F. Pembroke (2007, p. 287) [6] wrote about his unique view of empathy as living the love commandment:

The strong interest in empathy shown by mental health practitioners represents an attempt to strengthen the human element in the clinical (therapeutic) relationship. There is debate, however, over exactly what form clinical empathy should take. On the one hand, there are those who view empathy as a purely cognitive understanding of the subjective experience of the client. The purely clinical (psychotherapeutic) aim here is to relate to the client with a ‘‘detached concern.’’ The other view is that clinical empathy involves both cognitive and affective elements. In line with this view …empathy is more than simply labelling a feeling state. Genuine empathy involves recognizing what the suffering of the client actually feels like.

Empathy requires a reaching out to the Other. It is an imaginative projection into their inner world of experience. In the Western religious traditions, going out of the self has been referred to as ekstasis. Ekstasis has as its goal the establishment of communion. God reaches out to the world through Christ and in the power of the Holy Spirit ― calling people into fellowship with Him. In living the love commandment, do human persons go out to others to join in communion with them…and can this concept of ekstasis make a unique contribution to our understanding of empathic attunement in the therapeutic encounter?

Can ASpies truly love? Can they understand the concept of loving another person selflessly? If so, then by Pembroke’s definition, can ASpie’s have empathy in the form of ekstasis? If any readers are ‘Spectrumites’ or live with or know well other ASpies, do you have any viewpoints on this topic? Care to share your views with other readers?

REFERENCES

  1. Smith A. (2007).  “Empathy Imbalance Hypothesis of Autism”.  In The Psychological Record, 59: 489-510.
  2. Silani, G., Singer, T., Bird, G. et al. (2007).  “Levels of emotional awareness and autism”.  Social Neuroscience, 3: XX-XX.
  3. Fitzgerald, M., Bellgrove, M. A. (2006). Letter to the editor:  “The overlap between alexithymia and Asperger’s syndrome.”  In Journal of Autism and Developmental Disorders, 36(4): 573–76.
  4. Guttman, H., Laporte, L. (2002). Alexithymia, empathy, and psychological symptoms in a family context. In Comprehensive Psychiatry, 43(6): 448–55.
  5. Hill, E. L., Berthoz, S., Frith, U. (2004).  “Cognitive processing of own emotions in individuals with autistic spectrum disorder and their relatives”.  In Journal of Autism and Developmental Disorders, 34: 229–235.
  6. Pembroke, N.F.  (2007).  “Empathy, Emotion, and Ekstasis”.  In Journal of Religion and Health, 46(2): 287-98.

THE TRUTH BENEATH MY FEARS by P.J. Palmer

If we want to create a space that welcomes the soul, we must speak our own truth to the center of the circle and listen receptively as others speak theirs.  We must try to respond to what others say in ways which extend the welcome; something that rarely happens in daily life.

In the ‘circle of trust’, we learn an alternative way to respond, centered on the rare art of asking honest open questions – queries that invite the Other to reach for deeper and truer speech.  Honest, open questions are countercultural, but they are vital to the circle of trust.  Such questions, asked in a safe space, invite the inner teacher to say more about the matter at hand…

Parker J. Palmer (2004) A Hidden Wholeness

What did the original article from Nature Magazine say about Autism and ageing fathers

First the French psychoanalytique insisted autism began with inadequate ‘mothering’ (i.e. refrigerator mothers).  Now some are nitimating it’s due to a degradation of male genetic material with age.  Who do we believe?

Fathers bequeath more mutations as they age (2012) Nature Magazine

Do we even know this for sure???

Blaming Older Fathers for the “Autism Surge” Is Off the Mark

Mainstream media articles on autism science can be frustrating. In the race to woo eyeballs, writers too often spin research findings — because readers who gasp at, then forward the post generate more page views than those who than try to understand what the represented research means. It’s even more bothersome when a story with a sensationalistic headline has a caveat-bearing back end, as that’s the part trigger-happy Tweeters and Tumblrs and etc. are less likely to read. I’m watching autism science ado happen online right now, as The New York Times’ Father’s Age Is Linked to Risk of Autism and Schizophrenia and similar articles mobilize outcries about elderly sperm driving an “autism surge” — even thought that’s not really what the originating Nature article concludes.

It’s easy to see how the opening paragraphs of the Nature piece sparked such hoopla:

By starting families in their thirties, forties and beyond, men could be increasing the chances that their children will develop autism, schizophrenia and other diseases often linked to new mutations. “The older we are as fathers, the more likely we will pass on our mutations,” says lead author Kári Stefánsson, chief executive of deCODE Genetics in Reykjavik. “The more mutations we pass on, the more likely that one of them is going to be deleterious.”

Those who freak out, stop reading, and start forwarding miss critical conclusions as to why these findings — though grounded in legitimate science (unlike vaccine causation theories of autism) — don’t explain rising autism rates the way heritability does:

…Mark Daly, a geneticist at Massachusetts General Hospital in Boston who studies autism, says that increasing paternal age is unlikely to account for all of the rise in autism prevalence. He notes that autism is highly heritable, but that most cases are not caused by a single new mutation — so there must be predisposing factors that are inherited from parents but are distinct from the new mutations occurring in sperm.

It’s also important to note a preferred explanation for increased autism rates: as scientist Emily Willingham writes at Discover Magazine’s The Crux, autism is not new; we’ve just become better at identifying autistic people due to refined diagnostic criteria:

…here we are today, with two diagnoses [autism and Asperger’s] that didn’t exist 70 years ago (plus a third, even newer one: PDD-NOS) even though the people with the conditions did. The CDC’s new data says that in the United States, 1 in 88 eight-year-olds fits the criteria for one of these three, up from 1 in 110 for its 2006 estimate. Is that change the result of an increase in some dastardly environmental “toxin,” as some argue? Or is it because of diagnostic changes and reassignments, as happened when autism left the schizophrenia umbrella?

I talked with Emily about the older fathers study, and she emphasized the points above — the science behind older fathers handing down higher percentages of genetic mutations is solid, but any extrapolation pinning those percentages to increased autism rates does not acknowledge additional, more likely explanations. She also expressed irritation over headlines trumpeting an “autism surge” while failing to acknowledge the lack of a similar “surge” in schizophrenia rates.

MaxDavie also urges similar caution in choosing takeaways from “Fathers’ Age Responsible for Autism” articles:

The authors want to explain this by saying that the increase in spontaneous mutations could be causing a rise in autism. And such an explanation is consistent with the data, as well as offering a neat way of explaining some of the rise in autism diagnoses.

However, that would be to fall once again into the ‘correlation equals causation’ trap. Maybe the excess of spontaneous mutations is not causative, but is just a marker of the fact that dads of autistic children tend to be older.

I have two further issues with most articles on this study: targeting genetics and inheritance implies that parents are at fault for causing their children’s autism; this focus on causation implies that we want to know autism’s cause so we can cure it. Both outlooks stigmatize autism and autistic people like my son.

Yet most readers don’t think twice about seeing autism represented in a continuously negative light, because our society and prominent autism organizations condition us to think of autistics as problems rather than people. And our urge is to fix problems, to get to their root and stop them before they become problems, ideally. It’s dehumanizing.

It is true that autistic people often need support — my son needs 1:1 support, all day, every day. This is why I stand behind autism research, especially into understanding makes autistic people tick, so that supports can be better tailored to actual rather than externally-imposed needs. But I resent the perpetual focus on autism cures and causation. There are very few identified causes of autism; the majority of autistic people are here because that’s the way the genetic dice rolled. If you choose to be a parent, you need to understand that your child may be autistic. It’s time to accept those odds, and your children.

(For the record, Leo was born shortly after his dad turned 31.)

This was taken from the blog ‘Squidalicious’ by Shannon des Roches Rosa