August 19, 2005

How the Hell Did Johns Hopkins Miss This!

I am so incredibly angry.

Apparently the first person ever diagnosed with Autism by Leo Kanner at age 5 in 1938, was cured of it accidentally in 1947! He had a horrible bought of juvenile arthritis that they treated for three months with gold salts, apparently the standard treatment for the ailment at the time, and when the treatment was over, his arthritis and his autism were both gone!

His name is Donald and he is a retired bank teller, AND HE IS ALIVE AND WELL AND PLAYING GOLF IN MISSISSIPPI!

Johns Hopkins has been in touch with him to "follow up" with him every few years, but they never bothered to note his dramatic reaction to the treatment.

WHAT THE FUCK IS FOLLOW UP FOR THEN!

How does the world find this out??? Dogged Hopkins researcher pouring over old files and pounding the pavement to find a cure for autism??? An esteemed medical journal??? New announcement from the CDC???

NO! Dan Olmstead, UPI reporter, bothered to call the guy's brother last weekend!

I don't want to hear any more about how mainstream medicine is looking for a cure. Patient Zero recovers 58 years ago and the best hospital and medical school in the world, my alma mater, doesn't even fucking care.

The Age of Autism: Case 1 revisited
By Dan Olmsted
UPI Health
Editor
Published 8/15/2005 9:45 AM

The first person ever diagnosed with autism lived in a small town in Mississippi. He still does.

"Donald T." is now 71, and after a "miraculous response" to medical treatment at age 12, he appears to have recovered significantly since his original diagnosis as a 5-year-old.

His improvement is so striking, in fact, that it raises new questions about the disorder and its treatment.

Donald went on to graduate from college, where he joined a fraternity. He worked as a bank teller and belongs to the Kiwanis Club. He owns a handsome house with a large well-tended yard, drives a car, plays golf several times a week and travels the world solo. Recent itinerary: Rome; Palermo, Sicily; Corsica and Sardinia. This past weekend he was returning from Branson, Mo.

In short, he doesn't seem terribly autistic anymore.

"It sounds like he moved right off the spectrum," said one doctor whose practice includes scores of children with autism.

The treatment Donald received in 1947 was not intended to help his disorder, but to save his life. Donald had come down with an uncontrollable fever, stopped eating and had severe joint pain and stiffness that was finally diagnosed as juvenile arthritis, a rare autoimmune condition. Such problems occur when the body's own defense mechanisms go haywire, in this case causing inflammation that was destroying his joints.

After being treated for several months with gold salts -- then the standard therapy and still in use -- not only his arthritis but some of his most disabling autistic traits cleared up simultaneously.

We learned all this after we determined Donald's identity and that of his brother, whose law office is on the second floor of a building across the town square from the courthouse. The brother, although understandably taken aback when we showed up last Friday, was cordial and said he didn't mind being quoted by name, but because Donald has not responded to our request for an interview -- and we do not wish to intrude on his privacy -- we decided not to identify the family or the town at this time.

Medical researchers certainly know where to find Donald -- his brother said Johns Hopkins University medical personnel check in "about once a decade" to observe Donald's progress. It is not clear whether anyone at Johns Hopkins, where Donald was diagnosed, ever considered whether his striking improvement was related to the gold-salts treatment.

Upwards of a quarter-million U.S. children have autism, and diagnoses are rising. The cause is unknown. Medical groups and federal health officials have dismissed the "biomedical" approaches being tried by some parents and doctors as unproven and irresponsible.

"You have to keep in mind that the history of medicine is strewn with discarded treatments that people at one time believed in very, very strongly," Dr. Harvey Fineberg, president of the Institute of Medicine, said on NBC's "Meet the Press" earlier this month in response to a question about those treatments.

Such an approach, however, appears to have made the difference for Donald, at least according to the brother, who is his closest living relative -- and who was clearly unfamiliar with the current debate.

Donald's parents took him to Johns Hopkins in Baltimore at age 5 in 1938 to be evaluated by Leo Kanner, the leading child psychiatrist of his day. Kanner realized that Donald's behavior syndrome -- which included repetitive actions, limited and odd use of language and profound social disengagement -- was "markedly and uniquely different from anything reported so far."

Over the next four years Kanner saw 10 more such children, and in 1943 he published their case histories in a landmark paper titled "Autistic Disturbances of Affective Contact."

"There was a marked limitation of spontaneous activity," Kanner observed about "Case 1, Donald T."

"He wandered about smiling, making stereotyped movements with his fingers, crossing them about in the air. He shook his head from side to side, whispering or humming the same three-note tune. He spun with great pleasure anything he could seize upon to spin."

He also had what would prove to be characteristic speech patterns of autism, including affirmation by repetition. For example, if he wanted to get down after his nap, he said, "Boo (his word for his mother) say, 'Don, do you want to get down?'" Yet he could recite 25 questions and answers of the Presbyterian catechism and had perfect pitch (he still does).

In our interview, Donald's brother outlined what happened after Kanner's diagnosis.

"My brother was extremely nervous and excitable. Dr. Kanner, when they took Don up there, told my mother and father that the treatment he was going to recommend was, if they knew a couple out in the country -- a childless couple -- in his opinion (having Donald live with them) would be the best thing that could happen."

They found such a couple, and Donald began living on a farm about 10 miles from town in 1944, when he would have been 9 years old.

"In 1947, one February day I think it was, they came to (town) with Don. He had a bad fever and was obviously sick. My father and mother took him to all various places for examination -- they went to the Mayo Clinic, brought him back."

Because Donald's family was affluent -- his father was a Yale-educated lawyer -- they could afford the best doctors and knew where to find them, but nothing seemed to help.

"He lost his appetite and was terribly emaciated," his brother recounted, comparing his appearance to a concentration-camp survivor. "But anyway, my father was talking to a doctor (in a nearby small town) he happened to run into." He told the doctor, "It looks like Don's getting ready to die."

That doctor, without having examined his son, said, "What you're describing sounds like a rare case of juvenile arthritis."

Armed with that tentative diagnosis, his parents took Donald to a clinic in Memphis, where they "began to treat my brother with gold salts for 2 to 3 months."

The results were spectacular.

"He just had a miraculous response to the medicine. The pain in his joints went away." Donald has one fused knuckle to show for the nearly fatal affliction.

There was more good news.

"When he was finally released, the nervous condition he was formerly afflicted with was gone," his brother said. "The proclivity to excitability and extreme nervousness had all but cleared up, and after that he went to school and had one more little flare-up (of arthritis) when in junior college. They treated it with cortisone."

The interview with Donald's brother significantly adds to the information known about him and establishes a new timeline -- one in which the gold-salts treatment now appears to be a pivotal but previously undocumented event.

In a 1970 letter cited by Kanner, Donald's mother mentions "he had an acute attack of rheumatoid arthritis in 1955. Fortunately, this lasted only a few weeks. Physically, since that time he has been in perfect health. ... Since receiving his AB degree in 1958, he has worked in the local bank as a teller."

She was evidently describing the "one more little flare-up" that Donald's brother described as occurring in junior college. We found no reference in Kanner's writing to the life-threatening first onset of juvenile arthritis at age 12 or to the treatment that followed.

Instead, Kanner attributed Donald's standout success in later life -- most of the 11 initial patients were ultimately institutionalized or lived in extremely sheltered circumstances -- to the couple with whom he stayed for those four years.

Kanner wrote in 1971:
"Donald, because of the intuitive wisdom of a tenant farmer couple, who knew how to make him utilize his futile preoccupations for practical purposes and at the same time helped him to maintain contact with his family, is a regularly employed bank teller; while living at home, he takes part in a variety of community activities and has the respect of his fellow townspeople."

Yet, in our interview, Donald's brother cited the medical treatment and said it made a permanent difference in Donald.

"It sure did," he said. "He became more social," noting that just a few years later Donald was asked to join the college social fraternity, whereas people with autism are prone to isolation and do not usually acquire friends.

Would he call his brother autistic now, we asked? "It's just in certain areas," he said, citing a total lack of interest in dating or a life companion.

Donald's transformation, his brother said, "is the most amazing thing I've ever seen."
--
E-mail: dolmsted@upi.com

10 comments:

Anonymous said...

I'm sorry ginger, but I really think you are stark raving nuts if you think that a bout with juvenile arthritis that nearly killed a kid *after he was already developing into the guy who he is now* and being treated with gold salts cured him of autism.

He's still autistic ginger!! He got older and learned things.

you really think you are smarter than those docs doing the follow up? Smarter than his parents? Why wouldn't they have pointed out that they thought either the starvation, nearly dying or the gold salts cured him.

Why aren't you angry at the way he was hunted down like an animal and exploited by that low life Olmsted?

Is this what you want to happen to your son if he was in a study today? His health records splashed all over the world? I don't think so.

Ginger said...

Who knows what exactly cured him? It doesn't matter if it was gold salts or not. They would have started seeing autism as a medical condition, and treated it like it should have been in 1947.

They would sure as hell know what it is by now!

But his family obviously saw a dramatic change. If their report is correct, you can't really say he 'grew' out of it in less than three months.

I am angry because it was never recorded that MEDICAL treatment preceeded his recovery. Instead of this serving as a light coming on that this is a MEDICAL disorder, Kanners notes about attributing to his recovery to the good parenting of farm folk led to the NIGHTMARE of Bruno Beittleheim, having children ripped from their families and locked in institutions and mothers told that they were horrible and hated their children.

If they had realized that Donald responded to some sort of medical treatment, autism would have been treated like any other neurological anamoly and actual MEDICAL study would have begun in 1947!

I am pretty sure if that were the case, somewhere in the interviening 58 years, we would very likely know what Autism actually is, what causes it and what treatment it responds to.

At the very least, Autistic people would not be given up on by their doctors, who still THIS YEAR tell the parents of newly diagnosed two year olds to plan to put their child in a facility by age 5, because there is not anything you can do for them and you won't be able to handle him.

Bottom line, I am a therapist who went to Johns Hopkins University and worked in the psychiatric department. If I missed something like that it would have been horrible. It is DRILLED into you that you need to take in depth histories and be adding to them after every session with a client. Even the stuff that may not seem important, can end up meaning a lot.

Do I think I am smarter than Kanner? I am smart enough to take a good medical history. And if I had 33 years with the same patient, and I claim to be the authority on his disorder, then I damn well better know every detail about him.

It AMAZES me that Kanner and his would be so sloppy. THIS WAS HIS LIFES WORK! He was the guy on Autism! He had a huge responsibility to do right by these children and he failed them, and EVERY OTHER CHILD that followed.

I read a bit of the histories of the other children that were in this group of children. I coudn't even finish it because it was so upsetting. Stories I have heard a hundred times of drugging and warehousing these kids for a life time under horrible conditions. Do you think that would have happened if Kanner had treated this like the medical condition that it should have been treated? Do you think "Richard" would have been kept in a drug induced coma and not have learned to be toilet trained until age 33?

HIS failure has led to these children being treated like they were broken and useless.

In 58 years and how many untold broken lives and families. It should never have happened.

And I don't actually care if he was still 'autistic' or not. He was functional! He had friends and a purpose and a job and he got to live his life on his own terms. AND HE LIVED TO THE AGE OF AT LEAST 71!

Do you know how terrified parents of autistic kids are that their children are not going to survive to adulthood!

Chandler does not know what danger is. I found him sitting on the gas stove trying to turn the burner on one day. "What if something happened and I couldn't get to him" "What happens when I am not around to take care of him"? These are the questions we lie awake at night crying about.

Donald got to be himself.

I want that so badly for my son. I don't give a damn if he is obsessive or wears his clothes backward because he is to engrossed in whatever he likes to be engrossed to notice. I don't care if never gets married and spends his life burried in a basement cubicle playing with math. I just want him to be allowed to be who he is, not what gut inflamation, brain inflamation and metal poisoning may be making him be.

Please don't take my ranting as an attack on you. I am not angry at your comments, I am just angry at Leo Kanner and whoever took on his cases after his death. They wasted half a century and to many lives.

Honestly, I had not even gotten as far as the ethics of writing about him. I am sure you have a point, but I am so blinded by anger at the moment, that I can't imagine that I would have anything constructive to say about this.

There is a long discussion to have about that, and I could be indicted in that discussion too as I am talking about my son with out his permission. He could be really pissed at me in 20 years for doing this.

Ironically, as I sit here, the thought of him being aware enough of what I have done in sharing so much about him to be pissed at me for it brings me to tears, because that would mean that he was advocating for himself. Like you can do. He would be able to live his own life.

I hope one day he is really really mad at me. I will buy him a car.

I do certianly hope that Donald's brother got permission from him before he gave the interview though.

Listen, I can tell by your questions that you are probably in the neurodiversity side of things. I want to be clear, really clear about this. Looking for a treatment for the medical probelms that autistic people have does not mean that autistic people and their autistic traits are not valued, at least in my opinion. If Chandler stops in his 'recovery' right where he is now and never speaks any more than he does, I will still love that boy with a passion until the day one of us meets God.

I just want him to be healthy. I just want him to be able to ask for what he wants and tell people what he doesn't want.

I don't want him to feel marginalized, or less than, or devalued or anything other than God's special creation.

If you feel that treating your own ASD medically would somehow betray who you are as a person, then I totally respect your decision. And for you, franly, there may be nothing to treat. But you can't ask other people not to seek treatment for themselves or their own children.

The discussion of how much of a 'person' is biology or free will or whatever is as old as man, and trying to rehash another version of the nature/nurture contraversy would be like running in circles.

So lets just agree to disagree and encourage each other to offer dignity to the other person in what they are persuing.

Where I sit in the autism experience is a really painful place. It is so hard to love a little boy so much and no know what is going on inside of him.

It is not scarey for you. You know what goes on there. It is farmilliar and comfortable and home for you. I don't understand it and it is scary for me.

Today I am an angry, sobbing, freaked out mother. I am not that person very often. I am trying to be the strong, rational, understanding mom that can bend which every way the wind blows, but I am not that person right now.

I hope that you will offer me a little grace in my pain.

Kathleen Seidel said...

In his eagerness to promote the theory that biomedical treatments can not only relieve certain physical ailments, and improve the health of autistic people, but can also "cure autism," Dan Olmsted has offered a distorted interpretation of Donald T's story and Kanner's original articles, and has needlessly contributed to your distress, as well as that of any other parent who is as outraged as you by the implications of his articles about Donald T.

We have no way of knowing what specific memories the younger Mr. T reported to Olmsted, which Olmsted then recounted as a matter of medical fact -- that is, that gold salts not only helped to improve the symptoms of his brother's rheumatoid arthritis, but also cured him of his autism. Neither do we have any clue about how much Donald T's brother really knows about autism, besides assuming that it's something that his brother "used to have." Olmsted's articles suggest that the younger brother has recounted not his own memories, but memories of what was told to him by his now-deceased parents.

By reading Kanner's 1971 follow-up study, we can determine that Donald T's brother was seven years old when his brother was twelve, the time the first treatment with gold salts occurred. We can determine that the brothers lived in separate homes from 1942 to 1946, the years when Donald T lived out on the farm. We can determine that Donald T experienced an attack of arthritis at the age of 22. We can also determine that, at the age of 36, his mother judged her oldest son as "not completely normal," at the same time affirming that he had succeeded in "tak(ing) his place in society very well, so much better than we ever hoped for." She also spoke highly of the family friends with whom her son lived for four years.

One can only guess how reliable the memories might be of someone who is 67 years old, recalling incidents that occurred sixty years before, involving an older brother with significant health problems who lived in another household for four years -- from the time the older brother was nine until he was thirteen, and from the time the younger brother was four until he was eight. Dr. Kanner visited the farm in 1945, when Donald T was twelve, the same year he received the gold salts treatment. The "miraculous recovery" described by the younger brother occurred while the older brother was not living at home.

Both memory and sibling relationships can be complex and troubled. The willingness of anyone to reveal intimate details to a reporter about an adult sibling's life and medical history, without that sibling's consent, could very well offer evidence of difficulties that have persisted into adulthood.

In "Gold," Olmsted states, "the child psychiatrist who diagnosed those cases attributed Donald's remarkable success in life... to four years he lived with a 'wise, intuitive' farm couple." Although Kanner did attribute a great deal of positive influence to that couple, who "knew how to make him utilize his futile preoccupations for practical purposes," he goes on to state that they "helped him to maintain contact with his family," as contrasted to other patients, for whom "State Hospital admission was tantamount to a life sentence."

It is tremendously unfair of Olmsted to suggest that Dr. Kanner's recommendations were born solely out of mistrust of the parents' competence to care for their son, and a desire to separate them. Kanner was not disrespecting Donald T's biological parents, but acknowledging the positive effect of directing a child's energies in a way that enables that child to engage with the concrete world and maintain nourishing human relationships.

Dr. Kanner first saw Donald T in 1938. Olmsted reports the younger brother's second-hand recollection of Kanner's suggestion that "'the best thing that could happen' would be to place Donald with another family -- a childless farm couple. The parents complied..." If one doesn't closely scrutinize the time-line of events, one might assume that the parents caved in promptly to the doctor's demand to wrest their son away from them. In fact, the parents didn't out-place him until four years later. Given the long lapse of time, it is really inappropriate to assume that the decision to place their son with a couple they knew and trusted was a passive parental assent to an overbearing doctor's dictates. Rather, after a period of escalating "nervousness and excitability" that must have been very trying for the parents, they chose to send their son to stay for a few years with friends in the country where life is a little slower and more focused on concrete matters. He kept in touch with his family, his family probably got some needed respite, and he ended up returning to his home and living with them until they died.

Also unfair is Olmsted's implication in "March of the Experts," contained in the following passage: "'One other fact stands out prominently,' wrote Leo Kanner, the child psychiatrist who first identified autism, beginning with Donald T., in his landmark 1943 paper on the disorder. 'In the whole group, there are very few really warmhearted fathers and mothers. ... The question arises whether or to what extent this fact has contributed to the condition of the children.' While Kanner also noted that the children appeared to have been autistic from birth -- and thus the parents' personalities could not entirely explain their children's disorder -- it set the stage for a tragic morality play over the next several decades. The worst was Bruno Bettelheim..."

Contrary to Olmsted's suggestion that Kanner looked favorably upon the theories espoused by Bettelheim, in his 1971 follow-up, Kanner writes of his patients:

"As for the all-important matter of etiology, the early development of the 11 children left no other choice than the assumption that they had 'come into the world with an innate disability to form the usual, biologically provided contact with people.' The concluding sentence of the 1943 article said, 'here we seem to have pure-culture examples of inborn autistic disturbances of affective contact.' One can say now unhesitatingly that this assumption has become a certainty. Some people seem to have completely overlooked this statement, however, as well as the passages leading up to it and have referred to the author erroneously as an advocate of postnatal 'psychogenicity.' ... It was noticed that many of the parents, grandparents, and collaterals were persons strongly preoccupied with abstractions of a scientific, literary, or artistic nature and limited in genuine interest in people. But at no time was this undeniable and repeatedly confirmed phenomenon oversimplified as warranting the postulate of a direct cause-and-effect connection. To the contrary, it was stated expressly that the aloneness from the beginning of life makes it difficult to attribute the whole picture one-sidedly to the manner of early parent-child relationship."

He also spoke of positive developments in the field of autism, one notable one being that, "Parents are beginning to be dealt with from the point of view of mutuality, rather than as people standing at one end of a parent-child bipolarity; they have of late been included in the therapeutic efforts, not as etiological culprits, nor merely as recipients of drug prescriptions and of thou-shalt and thou-shalt-not rules, but as actively contributing cotherapists."

The story of Donald T should reassure parents of autistic children that their children's future has the potential to be much brighter than they fear.

Kanner's 30-year follow-up is available at http://www.neurodiversity.com/library_kanner_1971.html. Up until today, I've only had it online as an image .pdf. Since the article is relevant to anyone who's been following Dan Olmsted's recent articles, since the .pdf is a big download (especially for those who have only a dialup connection), and since I've got OCR software, I just OCR'd the entire article and added the text to the .html page. So, it's available in its entirety in .html, it's a faster download at only 77k, the text is searchable and cut-and-pasteable. I've run a spell check on it, but haven't read through the whole document word for word. If you do and find any typos or possible mis-transcriptions, please let me know and I'll change them right away.

Kev said...

"It is not scarey for you. You know what goes on there. It is farmilliar and comfortable and home for you. I don't understand it and it is scary for me."

I have, or rather had, some empathy for this Ginger. What you're talking about is ignorance. I don't mean that in a derogatory manner but the only thing that will help you understand what goes on there and grow familiar with it is to talk to those who are autistic. Why do autistics value what they value? Whats important to them? We as parents need to stop trying to bring our kids to us and need to start going to meet them. This is how we do it.

I see your anger with Kanner but I don't understand it. Olmsted's report stands and falls entirely on the word of Donalds brother about events that happened decades ago. Its extremley unlikely any kind of medical treatment would be devised to 'cure' autism by now - chelation would still be what it is today: an unknown and (as the tragic events of today seem to indicate) potentially fatal proceedure.

What happened to autistic children in those days was, as you say, deeply upsetting but those actions were taken on the basis of that same ignorance of autism that exists today. Whenever words like 'tragedy' or 'epidemic' or 'tsunami' or 'parents worst nightmare' are used then ignorance about autism is perpetuated. Until society can find a way to move past fear and ignorance and learn to value the nature of autism (as oppose to the cause(s)) of autism) then we'll always have people looking at our kids with revulsion in the Supermarket or be told autism is 'worse than death' by parents who purport to be part of the autism community or to be told by Doctors our kids will be in institutions by the age of 5.

I really think you'd benefit from engaging some adult autistics. They can give you the perspective I think that deep down you really want to have. Just know that its there whenever you're ready to try it - what do you have to lose?

jypsy said...

Ginger,

I too had those lines jump out at me and have wanted to comment for a number of days -

"Where I sit in the autism experience is a really painful place. It is so hard to love a little boy so much and no know what is going on inside of him.

It is not scarey for you. You know what goes on there. It is farmilliar and comfortable and home for you. I don't understand it and it is scary for me."

As an Aspie mom of an autistic child, an Aspie child and 2 "normal" children, logically am (was) I not in the same position you are in but in reverse? When my first child was your son's age I loved him very much but had about as much insight & understanding into what was going on inside of him as you have in Chandler. I didn't view it as painful or scary - I viewed it as motherhood. Yes, my 2nd and 3rd (the ASD kids) were easier to understand and relate to because they were coming from a place more "comfortable" and "home" for me but loving a child so different from myself - be it my autistic son or NT daughter - whatever the issues, whatever the obstacles, was never hard, painful or scary.

I hope you find peace

Anne said...

Dear Ginger, you have to take Dan Olmsted's conclusions with a grain of gold salt. Do what he failed to do -- surf on over to PubMed and search on the phrase "gold toxicity." See if you don't agree with me that Olmsted's idea of gold as a chelating agent that cures autism is more than a little half-baked.

If you read Olmsted's articles very carefully, you will see that Olmsted is the only one claiming that Donald T. was cured of autism. Neither his brother nor his mother thought he was. According to his family, Donald T. continued to have the social differences that are the core autistic traits. You will see Kanner's discussion of this if you read his paper for yourself. Kathleen Seidel has it on her site, as she said in her comment.

Autistic people deserve to have illnesses treated and to enjoy good health, just like anyone else. That isn't the same thing as recovering from autism, though.

Anne

Julie said...

Until we know the cause, (or more likely causes) of autism, we can't begin to understand why some children improve, others stay the same, and some regress. my daughter began a preschool autistic support class at age three with twin girls her same age. The twins seemed much more impaired than my daughter. All three girls had an appropriate education, but recieved no special therapies, no chelation, no dietary interventions. Over the years I have maintained close contact with the twins. It is very interesting that my daughter has regressed, and is now, at age 13, more impaired than she was at age three. The twins have made remarkable progress. One has very few autistic traits. While she still is not quite typical, it would be hard to classify her on the spectrum at all. If their family had followed some special treatment , I'm sure their success would be attributed to the special therapy. Well, they actually recieved less intervention than my daughter, who has regressed a lot. I am sure that many children with autism will naturally improve over time. The families will attribute the success to whatevery therapy du jour they are using at the time.

Ginger said...

To all,

I have posted a response to Kathleen's work as a new entry, as I feel that it deserved its own piece.

I have had a few days to calm down and can start to talk a little more rationally about this.

Thank you all for indulging my flailing.

Ginger said...

We as parents need to stop trying to bring our kids to us and need to start going to meet them.

Good point about how to learn about our kids. I disagree with it a bit, but only in emphasis. Expecting our children to come all the way to us will just frustrate and upset everyone. That is not even good parenting for NT kids.

But I guess that I am trying to find the balancing point of how much to you go to them, and how much do they make them come to you? They will be living in a world that will not make the kind of concessions to them that we as parents are willing to. Finding out where the line is seems to be an art that we as parents need to perfect.

I get why you don’t get my anger at Kanner. I think it is in large part a professional anger. The first time I saw Dr. Phil on Oprah ‘playing’ therapist I totally lost it, as it was obvious that he didn’t know what he was doing. And was totally inappropriately touching a woman who had been raped in the guise of ‘helping’ her. I can’t stand the guy. Who knows what would have happened if I had gone to see ‘Prince of Tides’.

Until society can find a way to move past fear and ignorance and learn to value the nature of autism (as oppose to the cause(s)) of autism) then we'll always have people looking at our kids with revulsion…

Only two words separate our complete agreement on this. I would change ‘as oppose’ to ‘in addition’.

I don’t think trying to find a cause or treatment in any way diminishes who Chandler is or what his nature is. You are right that there needs to be at least as much emphasis in celebrating people on the spectrum as there is trying to find a treatment, something that my blog has become terribly lopsided on this summer as I have focused on all that is happening in the cause/treatment land. I have a few fun posts about Chandler in the chute, but now just doesn’t seem the time. I will make sure to post those next week.

In my mind, this is an issue of, to paraphrase, ‘enjoying the things I cannot change; changing the things I can; and having the wisdom to know the difference.’

My autistic son has medical problems. I need to address the medical problems as safely and effectively as I can. Once those are resolved, I need to celebrate the person that he is, whoever he is.

I really think you'd benefit from engaging some adult autistics. They can give you the perspective I think that deep down you really want to have. Just know that its there whenever you're ready to try it - what do you have to lose?

I know that I will benefit from engaging autistic adults. I have started to do that a little, in posting twice on the Neurodiversity site and a few other places, but because the cause/treatment subject is so on my heart at the moment, and my time online is limited, I just have not made that a priority yet.

I also think a contributing factor is that Chandler is only three and his diagnosis is only a little more than a year old. We have not gone down the road very far yet, and I am still working on getting him healthy. It is likely that when his medical progress begins to plateau I will move into the realm of taking a much harder look at the neurodiv community and what it has to teach me, but today I feel my calling is research bunny as I wanna get my little one talking. Then HE can tell me when I am doing something wrong! HA!

Until then I want to make sure that in focusing on the medical issues, I am not giving the impression that I have disrespect for the neurodiv community or am angered by their criticism of the biomed approach. I don’t and I’m not.

Matter of fact, I am a little jealous of Wade for building such great bridges before I did! I am eager to go over and read his follow up to his first post on understanding the neurodiversity movement.

Before I do that, I have to be responsible and tie up all the threads that my emotional outburst has spawned.

Oh… and I also have to tend to my children. Today I started writing and Chandler tried to climb up on my lap and sit on my keyboard. I very politely told him that I was to busy writing about him to stop and actually have a relationship with him. He would have none of it. So we spent the afternoon playing airplane in the laundry basket.

Ettina said...

"At the very least, Autistic people would not be given up on by their doctors, who still THIS YEAR tell the parents of newly diagnosed two year olds to plan to put their child in a facility by age 5, because there is not anything you can do for them and you won't be able to handle him."
No parent should be told that. Not even if their child has a condition that makes them profoundly developmentally delayed and needing constant care. Everyone deserves to be seen as worthwhile, not as human refuse to be thrown away. Curing autism would not do anything about that, because it's not just autistic kids who are talked about like that. I've done research on many rare syndromes and read the parent's accounts of their children's diagnosis and so many kids who are neurologically different are being written off as worthless. To me, it doesn't matter if they are profoundly developmentally delayed and will never walk or talk. They still deserve to be treated with love and respect, which are so rare in institutions. I saw a movie of a girl with trisomy 13. Most kids with trisomy 13 only live a few months, but she was alive and well at seven or so. And she was profoundly developmentally delayed. And she was capable of loving people, of enjoying herself, of being loved. People like her deserve to be recognised as wonderful people, and welcomed in the community as they are, not hidden away in institutions. And so do autistics.

"I want that so badly for my son. I don't give a damn if he is obsessive or wears his clothes backward because he is to engrossed in whatever he likes to be engrossed to notice. I don't care if never gets married and spends his life burried in a basement cubicle playing with math. I just want him to be allowed to be who he is, not what gut inflamation, brain inflamation and metal poisoning may be making him be."
I want to be free to be myself, too. And that includes autism. I'm autistic, that's part of who I am. I don't care how I became autistic. But I have to tell you that autiosm is more central to my identity than my gender. It's about as central as my creativity and idealism, which is pretty important.

"Listen, I can tell by your questions that you are probably in the neurodiversity side of things. I want to be clear, really clear about this. Looking for a treatment for the medical probelms that autistic people have does not mean that autistic people and their autistic traits are not valued, at least in my opinion. If Chandler stops in his 'recovery' right where he is now and never speaks any more than he does, I will still love that boy with a passion until the day one of us meets God. I just want him to be healthy. I just want him to be able to ask for what he wants and tell people what he doesn't want. I don't want him to feel marginalized, or less than, or devalued or anything other than God's special creation."
I agree. I am high functioning autistic, but I know kids who (at least now) are not, and I want them to be able to advocate for themselves. And not just that, I want them to be heard. I know low functioning autistic self-advocates, and most of them are not being heard. It seems many people who say they want to teach autistics to communicate don't really want that, they want autistics to say what they want to hear. And when they say other things, things that truly express how they feel, people start trying to devalue their communication. I know at least one woman who can't talk and wears diapers, and people who meet her over the internet claim she can't advocate for low functioning autistics because since she can type, she must be high functioning. I know others who communicate with the help of someone else, who have been told it's their helper who's communicating, even if they said things their helper doesn't know. I hope you're not one of those people. For the sake of your son, I hope that.

"I feel my calling is research bunny as I wanna get my little one talking. Then HE can tell me when I am doing something wrong! HA!"
And I would probably do the same. But I want to point something out. Talking is not the only way of communicating. When I am older (I'm 16) I'm hoping to have kids, including some on the autistic spectrum. I might even adopt a child who's already been diagnosed as autistic. If xe is not able to communicate effectively, I will try to teach xe to talk, and at the same time I will try to find ways xe is already communicating and build on those. I suggest you do the same, and I wish you luck with your son.