Olmsted on Autism: Affective Contact

By Dan Olmsted

One of the great ironies of autism is that a “disorder of affective contact,” as it was called the very first time it was described, has led to quite the opposite – to a community of people who care so much about each other, about their children and about the world they will inhabit.
 
This realization has been dawning on me for a while, but for some reason a number of recent posts, comments and interconnections have made it especially vivid. I think the Father’s Day posts and comments, Abdulkadir Khalif’s Autism One reflections and Kent Heckenlively’s idea that we are all “Friends of Jenny” really drove the point home. To sit at a small computer screen and connect with so many people being so open, honest, intelligent and emotional – not sentimental, not self-indulgent, but willing and able to express exactly how they feel, as they feel it, whether that is joyous or painful or some inexplicable uncertain ever-evolving mixture – can be just overwhelming. 
 
How did we get so lucky to have created a little outpost in cyberspace that would draw this kind of person and these beautiful expressions of what it means to be a deeply caring human being dealing with really tough things in really creative and courageous ways? I don’t know. I’m just glad it happened. The temptation to quote from various people’s words is quite strong – to mix up the poignant, the angry, the exhausted, the committed, the hilarious, the exasperated, the sarcastic, the dejected, the determined and the dignified voices in a way that shows exactly what I mean. But that would mean essentially repeating what you read and write, all of you, every day, and it could never recreate the flow out of which it continuously emerges, so I’m just going to stand back and let it all be, as The Boss once put it.

And the irony of it all! Here we are dealing with something that was first described in 1943 by a Johns Hopkins psychiatrist, Leo Kanner, in a paper titled “Autistic Disturbances of Affective Contact.” Many of you have read this – I recommend it – but the title really says it all. Something was disturbing the way those children related to the rest of the world from the very beginning of their lives. They weren’t retarded – deficient in cognitive skills – and they weren’t schizophrenic – lost in delusions and hallucinations. They were emotionally disconnected at a very profound level -- they were somehow not tethered to their parents, or other people, affectively. That word is a bit clinical, but it just means “affection,” and its absence was so acute it was “autistic” – from the Greek for autos, or self. These children seemed to inhabit a universe of one. 
 
Leo Kanner – the dean of child psychiatry, the author of the textbook Child Psychiatry – had seen every kind of childhood psychiatric disorder, but he had never seen this before. He knew it was NEW, that it was important, that it deserved to be described and understood.
 
Unfortunately, although he got that right, he got something else wrong, terribly so. He said there were “very few really warm-hearted fathers and mothers” in that group of just 11 families. And as time went on he said worse things, and other people – doctors, scientists, people who should have known so much better -- said much worse things than that. It was a cascading mistake that came from a simple misunderstanding of the clue buried just beneath the surface in those very first cases. The parents were well-educated, they were accomplished, they were doctors and psychiatrists and scientists and lawyers, and Leo Kanner thought they were aloof and abstract and preoccupied with their careers and their calculations. He thought they were deficient in affective contact, in other words, and their children’s disorder was a kind of funhouse mirror reflecting and distorting that lack right back at them – the instant karma of developmental disorders.
 
What was really going on was far, far different – and much less interesting, actually, from a psychiatric point of view. Those parents were simply the first to encounter the new generation of mercury compounds that caused the new disorder that came to be known as autism. (See Mercury Rising on our home page). They had the medical and research jobs, the family backgrounds, that made them early adopters of those compounds, that led them to vaccinate their children because they cared about them, to bring them, sometimes at great effort, to the leading child psychiatrist of their day. “The thing that upsets me most is that I can’t reach my baby,” the mother of “Case 9: Charles N.” told Leo Kanner. This is the voice of someone longing for affective contact.
 
Of course, blaming the parents is supposedly ancient history, but as I have said before, parents still get the blame, and they still get it from the same “experts” in medicine and science who have already been so terribly wrong for so terribly long. Now it’s the genes, you see, and it’s the rejection of the “wacky” (see Newsweek on Oprah) idea that parents themselves know what happened to their child and can actually try to fix it.
 
One thing I’ve discovered is that, while this “disturbance of affective contact” is the supposed hallmark of autism, so many parents tell me that at least when it comes to their own child, that’s not it at all. Their children do connect, or try desperately to do so. Something else is going on – sensory disarray, physical pain and illness, emotional dysregulation, massive anxiety manifesting in ways that combine to block the flow of what is already there, undiminished and undaunted. (That’s what high-functioning autistic people say, too, according to a recent study.) What’s there can be freed, and in many cases and to varying degrees, that is happening.
 
So to see how freely that affection flows between the people who make up our universe at Age of Autism, to get caught between laughter and tears and outrage and isolation and deep connection, all by the time you’re done reading one post and the comments that come after it – well, good grief. And how ironic.
--
Dan Olmsted is Editor of Age of Autism
 

Comments

[Twyla]

Here is a moving little letter from last weekend's L.A. Times:

"Thank you, John Horn, for the article on the four-minute flashback sequence in [the movie] 'Up'...

"My autistic 17-year-old son and I saw this movie the first day it came out. He sat silent, caught in the story. His hand reached to mine. 'He loves her so much, that is so sad,' he said. I was amazed. He never catches the emotions, the subtle story. He caught it all..."

Here is a footnote from page 10 of Lisa Lewis's book "Special Diets for Special Kids":

"It is tragic that many sources on autism continue to describe these children as aloof, or without affect. In reality, many autistic children show a great deal of emotion. While this can and often does take the negative form of violent temper tantrums, many autistic dhildren are very affectionate with great attachment to loved ones. Descriptions which deny this variability on the autistic spectrum do a great disservice to families, by keeping parents in denial and children from much needed intervention."

The issue of affect and autism makes me think of the question of: When a tree falls in the forest and nobody hears it, did it make a sound? If a child has feelings and a personality, but doesn't express these in the usual way, do these feelings and personality exist? Yes, they do!

Our son's first word was "eee-you!" which, we could tell, meant "I love you!" We laughed whenever we heard the European Union ("EU" for short) discussed in the news. Although our son had lots of autistic behaviors, for years we thought that since he was affectionate (in his own way, although often oblivious to people too) he must not be autistic.

Thanks so much, Dan, for this article, for your support of parents, for affirming the ridiculousness of the refrigerator-mother paradigm, for your work as editor of AoA and co-author of your upcoming book which we look forward to reading!

[Joan Campbell]

Another excellent article from Dan the Man
Keep up the good work.

Thank you from Scotland

[Jake Crosby]

I'm looking forward to reading the book you're co-authoring that studies the early history of autism. I still remember when we were sitting at that restaurant and Mark Blaxill drew those links that indirectly connected thimerosal-inventor Morris Kharasch with some of the parents of the first autism cases. Should be interesting.

[Amber]

I can't wait for your book to come out, Dan! You and Blaxill= dreamteam!

Since autism has come into my life, I have delved into the enviornmental aspect of it. I think that autism is the tip of the iceberg, it's just more devestating because it is our precious babies being struck down. It's about society's lack of concern for others, unwillingness to change and certainly love of the almighty dollar. Our homes, yards, workplaces, medical care, etc. are toxic soups in the name of innovation and technology. The cancer rates, autism and others are staggering, and NO ONE CARES that we are killing ourselves.
I am all for bettering ourselves, I used to love some Ayn Rand in my day(I've since come full circle from that philosophy, though), but we are screwing it up! Let's focus on cleaning up our bodies first and foremost, our food supply, our enviornment including medical care, and the like. How many children and adults alike have to fall to horrible disease before anything changes?

[Keith]

Dan

I am glad you are addressing that in your book. I didnt do it to "argue" I said it because it is a point.

Gatogorra

I know about the record keeping. I worked with it for my degree. The Victorian age was only a small amount of time and not all areas or periods of time functioned on such "civility". There were off the book places where people were sent to be away and out of society. There still exist the remnants of such places in Appalachia. Some "mentally ill" were placed in jails for lack of institutions in some areas of the country.

No the numbers of today might not be there (nor do I think they were when Kanner noticed) but the fact is autism manifestations may still have existed (for whatever reasons) prior to Kanner or Aspberger's observations.

And when I talk about Agrarian groups (or tribes) "given up" I literally mean some could have literally "put down" such individuals as they would a sick animal. I am not saying that's right. It just would have been perceived by such groups as a matter of survival.

[Willie]

Hey Kathy Blanco great response as usual well thought out, observant, reflective, and painful. The “Frozen in time” comment is so on the mark, a very adroit clinical observation actually, as these children do not continue the normal mental growth in so many way in some and few ways in others. Some children speak, some do not, some are affectionate some are not, some melt down some do not, some improve with current biomedical therapy some do not.
Other than the physicians in the autism community most medical professionals do not even have a clue as to the role vaccines play or how many vaccines child actually gets. Truly it is astounding how many people who are physicians have children usually older children and have no clue as to the number of shots a newborn child and toddler gets. I speak to physician’s everyday and not even one who is a non pediatrician gets the correct answer when I ask them to give me the number of Vaccines children get. Sadly I too was one of those until my child was infected with the vaccines. Most physicians and almost all lay people are stuck in the romantic notion of the polio vaccine as saving America from polio in the 1950’s. This was possibly the greatest marketing scam in the history of medicine that goes on even until this day and was the impetus and basis of the drug dealer mentality has pervaded the pharmaceutical companies in the world. There will be a reckoning for the Polio vaccine as well however and the day of apocalypse is coming for this sacred vaccine cow as well.
WE all live here in this autism hell because we do not demand more and truly it is as simple as that. DEMAND MORE. Pity will not help our children and we have to be proactive at every level. Reflection and poignant moments as you have described it Kathy are a daily event for me as a physician and I too have had my “Aha” moments as I have read through countless journals from numerous specialties. Many of the answers to Autism have already been described in various journal articles in various journals. The difficulty of course is determining which information is relevant and putting all the information together in cohesive hypothesis so that a reversal can be accomplished.

[Cherry Sperlin Misra]

Dan, and parents, Im so glad that this topic has come up. 14 years ago, when I had no idea what to do with autistic kids in my nursery school, and not much interest, because they did not seem to show much improvement, I had this experience: There was a mother sitting in my school with her fully autistic son and she noticed another boy, whom I would now say was mildly autistic. This mother immediately began to show affection towards that other child and I saw that he very quickly preferred to stay near to her. Up till then, he was a happy child, but with little interest in anyones company, even that of his twin brother.One day this mom turned to me and said " He wants affection, but he doesnt know how to ask for it " I kept this unusual comment in my mind and years later we got a moderately autistic student who rarely spoke and was very hyperactive. Recalling her words it was easy for me to give him attention and one day I went out in the play area and this child suddenly saw me. He uttered a surprised "Cherry!"- and ran and gave me an odd hug. Everyone watching was just amazed and so was I.
I would like for parents of autistic kids to change this perception that autistic kids dont care about anyone; and I also hope that parents will make the effort to be friendly with other people who meet their child- teachers, kids, parents, neighbours - and then give them useful explanations and tips such as this mom gave me. I must have appeared uncaring and stiff until I learned of something positive that I could do for autistic kids.I was also, initially, under the impression that these kids were often mentally impaired. Articles in Age of Autism showed me how wrong that idea is.
And above all, I think there is nothing so beautiful and poignant as a parents love for their child. Thanks to AOA for bringing that to us every day !

[Kathy Blanco]

Poignant moments often come along in my day, today was one of them. For, I have been blessed to have my grandson in our home now for a month, due to a falling out of my daughters marriage. He is a cutie, and is not vaccinated. On purpose...

Here, my son is playing with him, an eleven month old, enjoying Barney, and his toys. Then I had the aha moment. Ithought, my son, is frozen in time. The time of his injury was just about the time of this grandchild. I see the growth spurts in language, and the new walking skills, and I hurl my soul into yesterday, and only wish, I could take back "certain" decisions. Such as trusting my prescious baby to an infidile, who worships at the holy communion of vaccination.

If only's can happen a lot when you compare and contrast. I joy in the no autism, yet, I pain for the child, my child, who was the front line soldier. My NT daughters are not vaccinating, are eating no gluten or casein, and taking care of their bodies, making sure they have no levels of metals, and or have increased methylation factors, minerals and vitamins. They joy in no autism, and they deserve no autism, after the life they lived at home.

But, as you said Dan, you really do wonder that this community is so ably communicative, of what we have been through, what should have and would have been's.

I pray, that we have further strenght, science and resolve, to solve this "so called mystery" of autism. Let's stop the strokes from vaccines, the toxic soups, the viruses, and let's just have healthy happy children who go through rite of passage diseases, and fair out better into adulthood with no nicks on their immune system.

May we all go forward to live to the day to see our grandchildren who never will acquire autism...the kind of autism that wasn't meant to be, but was forced on our population by some evil, awkward, shunted and thwarted design.

[Benedetta Stilwell]

Good article on the shaken baby syndrome, thank you John Stone for directing me to it.

[Heidi R]

Hey Dan, Alanis Morissette called, wants to speak with you about this blog post. Can't believe with all of my jaded NJ charm, this particular irony escaped me. Thanks for brilliantly pointing this out and thanks for all you do for our kids.

[Aspie Mom]

"It is almost a cliche to say this, it makes a lot of people REALLY upset when you do,it is usually only those with Asperger's who are higher functioning,who are cold and unaffectionate.The more disabled you are,the further away from this you get."

Roger,
Please don't perpetuate hurtful, untrue stereotypes. You don't lift your child up by putting down someone else's. I've never known a group of people who desire affection, friendship and companionship MORE than those with Aspergers, even if they don't always seem to show it. Try really getting to know someone with Aspergers. I think you'll be pleasantly surprised.

And remember, we're all in this together, like Dan's article said. :-)

[dan olmsted]

thanks to all for the kind comments. re kanner and the discovery of autism: the notion that autism is ancient simply falls apart under serious scrutiny, believe me. the book that mark blaxill and i are working on has a big section on this, and hopefully it will knock down this idea once and for all (though it will never be possible to convince everyone).

[ElizaCassandra]

From "across the pond":-

My beautiful ASD daughter, now in her late teens, still hurls herself bodily at her dear Daddy and hugs and kisses him as a rather younger girl would do. As babies both she and her twin brother were loved to bits by us, the grandparents and other family members. I recall how this beautiful little girl changed within a month of her MMR, losing eye contact with us, losing her developing speech totally, losing her understanding of what was being said to her, etc. etc. Coincidence? I don't think so but how can I prove it? What usually silences doctors (and causes them to change the subject hurriedly) is when I tell them that we have dated camcorder footage showing two normally developing children.

Dan, thank you again for all the efforts you make on behalf of our children. P.S. Did you ever find a copy of the MSDS for the original MMR?

[Gatogorra]

Keith,

Records from institutions and private residential homes were kept as clearly as they are today in the past. Victorians also had a passion for meticulous, exhaustive diagnostic descriptions. And it's clear to see from these historic documents that the rise in "mental disabilities"-- as they were so called-- have risen almost across the board. The "mentally disabled" in the U.S. in 1850 were .2 per 1000 of the population. This number had to account for every category of "mental disability", including autism if it existed. Bear in mind that Victorians were not more tolerant of eccentricity, if you freaked in public you would be institutionalized and that the gap between rich and poor was steeper and few families could have afforded the full time care of a disabled relative in order to keep the loved one's disability a "secret".

The fact is, there was nowhere for a population of individuals with autism as large as it is among today's children to have "hidden" 150 years ago. Even if every other diagnosis was displaced and there was no such thing as traumatic head injury, venereal dementia or delerium tremens, there was still no place to hide the population-- not in private residences, not under different diagnoses, nowhere.

The number for mental disability calculated around 2000 was 20 per 1000. That number has shot up again in only the past few years and must include every type of diagnoses, such as schizophrenia, "bipolar disorder/manic depression", etc. All have risen almost across the board and autism is among a few parallel cognitive injury epidemics. This isn't increased recognition, this is increase period.

[nhokkanen]

Inspiring essay, Dan. Once again you've come to the heart of autism matters and spotlighted what really matters. This complex, caring interconnectedness we parents and advocates share is an inadvertent gift, good from bad.

Given the post-Victorian era in which Kanner was raised, I'm surprised that he faulted those parents' stoicism. To my Nordic forebears, displays of emotional vulnerability were anathema. Kanner's penchant for misinterpretation and incuriosity about biological causality indicates that his subjects' restraint was appropriate.

And we see a similar intellectual anorexia in hostile Huffpo commenters fueled by petty schadenfreude -- the satisfaction felt at someone else's misfortune. That psychopathology is a noxious contrast to the kindness and empathy found at AoA, on various biomed listservs, at support groups and in community efforts.

Though the autism experience is not one I'd have chosen, I feel quite grateful for the many compassionate and inspiring people I've met online and in person. And in a warped way I'm glad that the vaccine/autism issue has impelled "health care professionals" and vested interests to show their true colors by attempting to stifle truth. For some, the simple realization that those in charge are concocting statistics rather than looking at our kids' health is not explicit enough to get them to finally start questioning our highly conflicted public health officials.

[Cathy Jameson]

Dan,

I have the best digital picture of you and Kim from the A1 conference. I was truly overwhelmed when I got to Chicago as I didn't expect to see that many people in one place for one cause. I would have probably needed a brown paper bag to help me breathe had I not quickly run into you and Kim at the coffee shop--perfect timing for me to really focus on why I was there that weekend, to calm down and to gear up to listen at all the informative talks. To sit with you and listen to your wise words and to hear your passion was really the icing on the cake for me. I'm so thankful for Age of Autism and the platform you have created for parents like me and for the opportunity to post and contribute some of my own work.

I know I'll never be alone in the quest for understanding for my son and for our family. The spirit of this community will carry Ronan far as we all work toward healing our children. Keep believing and sharing your knowledge. I'm hopeful this little neck of cyberspace woods gets other's attention to do what you've successfully done--uncover the truth and made more people question the causes of autism.

[`Roger Kulp]

If you know anything about Kanner,you know he later recanted much of what he said about parents of autistic children,but only too late,after the damage had ben done.This wasn't the case with Bruno Bettleheim,a genuinely twisted little man whose lies about autism were treated as gospel for almost forty years.

If you have not seen it,you need to go watch the 2003 PBS documentary "Refrigerator Mothers" http://www.snagfilms.com/films/title/refrigerator_mothers/

If this intrigues you,go over to eBay or Amazon,and pick up a cheap copy of Richard Pollak's now out of print 1997 biography "The Creation of Dr. B".

It is almost a cliche to say this,and it makes a lot of people REALLY upset when you do,but it is usually only those with Asperger's who are higher functioning,who are cold and unaffectionate.The more disabled you are,the further away from this you get.

[Keith]

Dan I have to disagree with a premise you make - just because it was "new" to Leo Kanner does not mean it actually was new.

As harsh as this sounds, it could be that any such children in the past were "given up" in agrarian cultures, turned over to institutions (non-academic) or orphanages as they could have in those eras be seen as a burden to the survival of the rest of the family.

[Marni]

Age of Autism Editors,

This is not pertinent to the article, but I know I can contact you this way, so I am.

Are you ware of the petition for universal declaration of resistance to mandatory vaccinations?

http://www.thepetitionsite.com/1/a-universal-declaration-of-resistance-to-mandatory-vaccinations

This seems like something many in your audience would stand behind. Many "alternative" broadcasters have started to direct people to it and link to it on their pages.

I just wanted to suggest this as a topic. Maybe it could be explored further by the AoA writers?

Marni
Daily Age of Autism Reader and proud Autiam Mom Advocate

[Gatogorra]

Thank you, Dan. I probably use the term too much, but I think of you as an emotional athlete-- someone who can keep facing the truth without crumbling, all in order to actually be able to do something about it. I doubt that most of us would have been able to tolerate putting our faces into this abyss of horrors (and inspiration, too, but you don't get to see that unless you first take in the horrors) if the fact of having injured children didn't force us to. Even those with a strong enough stomach to take it may not have had the radar to pick this topic out of the countless controversies affecting the human condition these days.

What you say is so true-- it's so interesting that the very thing which is said to be "missing" in autism is present in abundance in so many people speaking out for the cause. That's good because it's going to take precisely that to succeed-- huge amounts of the very thing that the particular chemical assaults causing autism attempt to wipe out: compassion, "affective contact", emotional intelligence, deft communication, etc.

I also find it fascinating that, as our son recovers, these are all the things that are coming back to him bit by bit. Pity the industries that caused this atrocity if our children one day retrieve the very things necessary for seeking justice on their own. Not surprising that these industries are fighting tooth and nail against every meaningful attempt that families make to return these faculties to their children.