August 19, 2005

Experts Suck

I am sorry that I lost my temper on my last post. And I am sorry that I am insulting every expert on everything everywhere in the title of my post here. But I am going to leave it there because that is how I feel right now.

Reading these two columns has just made me sick. I feel like someone punched me in the stomach.

Here is Olmsted's follow up. If you haven't already, read my previous entry first.

The Age of Autism: March of the experts
by Dan Olmsted
Aug 17, 2005, 21:49 GMT

WASHINGTON, DC, United States (UPI) -- The news that the first child diagnosed with autism got better after medical treatment -- while leading experts didn`t make the connection -- suggests how research and reality have been distorted for decades.

As The Age of Autism reported Monday, the child known as Case 1 is alive and doing remarkably well in the same small Mississippi town he grew up in. Although we didn`t talk directly to "Donald T.," his brother told us that he had a "miraculous response" to gold salts treatment at the age of 12.

It cleared up a devastating case of juvenile arthritis and -- astonishingly -- made a marked difference in Donald`s autism, he said.

"When he was finally released, the nervous condition he was formerly afflicted with was gone," his brother said of the two- to three-month gold salts treatment in 1947.

"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." He also became "more sociable," his brother said, and was invited to join a college fraternity.

That was 58 years ago, yet we`re not aware of any mention in the millions of words written about autism that this very first case may have gotten better following a novel medical treatment.

Instead, today`s mainstream medical experts dismiss the idea of biomedical interventions such as anti-inflammation and detoxification therapies as dangerous hooey perpetrated by quacks and charlatans.

Yet the treatment Donald got was patently biomedical: Medicine prescribed by a doctor to treat a physical illness appears to have had a positive effect on his mental disorder.

The official hostility to such approaches is currently so great that the only research under way on the topic is funded by parents. An official at the National Institutes of Mental Health told The New York Times last month that it "isn`t responsible" to prescribe chelation, which is designed to eliminate heavy metals from children with autism.

Yet dozens of parents -- and, for that matter, dozens of doctors outside the mainstream treatment community -- say the treatments have made huge improvements.

Some of them have banded together at generationrescue.org; they argue that autism is mercury poisoning (primarily from a preservative that was used in vaccines) and that getting the mercury out has cured some children of autism and vastly improved the condition of others.

Other doctors, many of them connected with Defeat Autism Now!, a project of the Autism Research Institute, are using everything from special diets to B vitamins to folinic acid. They cite similar successes, and many parents agree.

These parents and doctors get the modern equivalent of what awaited the parents of early autistic children -- skepticism and scorn.

In the beginning, there was strong suspicion -- in many quarters, certainty -- that bad parenting caused autism. This came in part from the striking fact that so many of the parents of those early cases were successful, affluent, career-oriented professionals. Even more suspiciously, many of the mothers had college degrees and -- alert the mental-health authorities! -- their own careers.

"One other fact stands out prominently," wrote Leo Kanner, the child psychiatrist who first identified autism, beginning with DonaldT., 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, who wrote in "The Empty Fortress" in 1967: "I believe the initial cause of withdrawal is rather the child`s correct interpretation of the negative emotions with which the most significant figures in his environment approach him. ... The tragedy of children fated to become autistic is that such a view of the world happens to be correct for their world."

We couldn`t help thinking of all that when Donald`s brother told us Kanner suggested "the best thing that could happen" would be to place Donald with another family -- a childless farm couple. The parents complied, but it was only after the
juvenile-arthritis attack four years later, and the subsequent gold-salts treatment, that Donald dramatically improved.

Yet Kanner attributed the change to "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."

It wasn`t until Bernard Rimland wrote Infantile Autism in 1964 that the idea of the "refrigerator mother" began to change -- slowly.

What makes Donald`s case all the more interesting is that none of the specialists his family took him to -- including the Mayo Clinic -- could identify the cause of his uncontrollable fever and joint pain when he was 12, his brother said. It wasn`t until Donald`s father happened to mention the affliction to a practicing physician in a nearby small town that juvenile arthritis, a rare autoimmune disorder, was identified.

Here is how one of our correspondents summarized this sequence:

1. The world expert (Kanner) was incompetent with respect to medical assessment of illness.

2. He assumed that they needed to get Donald away from his parents. They really did think it was a parental abuse problem back then.

3. Kanner mistakenly attributed Donald`s progress to the "therapist" when it was really the medicine.

4. Recovery is possible with biomedical treatment.

5. Biomedical treatment ideas are not likely to come from the autism experts (Kanner) or the prestigious clinics (Mayo). They come from real medical doctors who know how to recognize real illness and autoimmunity in the kids.

Contrast that analysis with the standard dismissals when parents claim biomedical treatments have helped:

-- They may be indulging in wishful thinking -- wanting their child to improve so badly that they delude themselves;

-- They may have tried another treatment such as behavior therapy that is actually responsible;

-- Their child may not have been very autistic in the first place.

Does anyone think Donald T., the first child diagnosed with autism, was not very autistic in the first place? Surely, Donald`s family was not "imagining" his improvement, since they weren`t even trying to treat his autism.

Of course, that intuitive, wise, childless farm couple may have made all the difference -- that is, if you think autism is caused by unwise, non-intuitive mothers and fathers (bad parents).

We don`t know what to make of Donald`s evident improvement -- and the fact that it has stayed buried for so long even as parents and researchers frantically turn over every stone to uncover treatments for this burgeoning, awful disorder.

We acknowledge we have not met Donald and are unable to vouch for his brother`s account, although we certainly found him credible and convincing.

But it does make us wonder whether much has changed.

These days, parents aren`t condemned for having autistic children -- just for doing something about it without the permission of experts who are certain nothing can be done.

In upcoming columns we`ll look at the implications of Donald`s treatment.

E-mail: dolmsted@upi.com

7 comments:

Brett said...

A little knowledge, they say, is a dangerous thing. Many experts, in many fields, use this as a put down to "amateurs" in the field. But you can also say that a lot of knowledge, too much knowledge, in a single area is dangerous as well.

A bit more on this on my blog at http://29marbles.blogspot.com/2005/08/on-experts.html

Typhona said...

If someone tells me that they are an 'expert' in some field, I rarely hear anything after that. I hate when friends/families call me a computer expert. Im good on computers, Im ok with some software and some hard ware, but in no way shape or form am I an expert in the field.

People misuse that term so often that is has truely lost its meaning. Today I think expert = liar. No really, anyone that I know that is an 'expert' in thier field usually lies about something, and most of the time it is a little something, meaningless but a lie non the less.

I think they do this to protect thier rank as an expert. I mean an expert is supposed to know everything about a specific area. But people being the beings that the be, seem to want to be known for knowing it all and if they dont they will lie about it just to have the title.

Now about curring autism. On one hand I can see where a parent of an autistic child would want a cure. But from the point of view of someone somewhere on the spectrum himself(hisself?? whatever) ADD/ADHD at the very least, which is on the spectrum. I grew up with 'why cant you be like the rest of the kids' 'whats wrong with you' etc etc. I wasnt dxd as a child except with central auditory processing dissorder (if I dont write it down I wont remember it, regardless of how many times Im told or read it) but I dont think I am broken or in need of a cure.

Someone very close to me has a daughter that is pdd/nos and the thought of a cure is kinda scarry. We love the way she is, its tough at times but I dont think that her mother would want to do anything to change her beautiful little girl. she has friends, loves people and loves school.

But just 2 yrs ago it wasnt that way. She wasnt very verbal, withdrawn, some times agressive. But not once did her mother think of medicating. She just raised her daughter the best way she knew how. she accepted that her daughter was different and treated her accordingly. This isnt to say she had lowered expectations, just the opposite. She was strict but carring. She didnt tolerate aggresive behavior, worked through communication difficulties. If you saw her daughter today you may not even notice that she may be a little different. She still has a little difficulty with coversations (mixing up words/meanings) she takes everything litterally, but is developing a healthy twisted sense of humor, and helps keep an eye out for other kids with ASD at school and in the neighborhood.

Sorry I had to get that off my chest. I just dont feel like 'cure' is the word that we are looking for. I would like to think in terms of better coping skills. I was never 'normal' or like the other kids and still am not. I tend to have brightly colored hair, piercings and tattoos. And I would hope that parents start to try to get thier children comfortable in thier own skin rather than tell them that they are broken and in need of a good fixin. Just my non-expert opinion.

Kyra said...

i think it's important to say that some children diagnosed as 'on the spectrum' are mercury POISONED. not ALL. but yes, some. and these children need a cure to restore their health.

in those and in other cases (where the child does not have high levels of mercury and other metals) parents who are seeking treatment, biomedical, diet, play therapy, etc., are only trying to do what every other parent of NT children are doing: providing the best they can for their children in order for them to realize thier POTENTIAL.

Typhona said...

treatment, biomedical, diet, play therapy, etc., are only trying to do what every other parent of NT children are doing: providing the best they can for their children

But they are not looking for a 'cure' they are looking to better teach thier child the needed coping skills that they need to get by in this world. Thats all any decent parent would do for thier child. I just dont agree with the medications and so much time with therapists. And I know that alot of people feel the exact opposite of me. And sure Speach and OT are great and very very important. It just seems that some people would rather drop off that 'special' child for a few hrs a day rather than spending time with them. 'I give up you take em' is an attitude that I have witnessed more than I care to say.

Ginger said...

Typhona,

If you are talking about 40 hours of ABA, I couldn’t bring myself to that either. But I don't want to judge parents who feel that is what their child needs.

A bit of constructive criticism, if I might presume to offer it.

Deciding where the balancing point between how much treatment and therapy is to little or to much is a judgment call. It is easy for families to take on more than they can handle and even if it is a benefit to the child, the family begins to buckle under it.

The concern you share that therapy is a way for parents who can't cope to avoid time with the child is something that should be brought to parents attention.

People from the neurodiversity community, who have been where our children are, have a lot of perspective to offer us on how we can raise and understand our children.

Here is where the advice comes in. It is REALLY HARD for parents to hear from people who are attacking them. If I feel like you are judging me and treating me with contempt, I am not going to believe you have the best interest of me and my family at heart, and I am going to ignore what you say.

Of course the irony of encouraging HFAs to treat overzealous parents gently is that lack of empathy is a feature of autism, and it is not really easy for them to stand in our shoes and see where are hearts really are.

And of course online, where most HFA's can really communicate well, is where NT people take more offense more easily because there are not visual cues to see in what spirit the message is being offered.

It completely sucks that children have to deal with, 'why can you be more like ____' messages. But sadly that is not limited to ASD kids.

Teach parents what you know. Find the common ground with them and start from there. (This is more rhetorical as you actually did that in your first note on this post). If you really want to help the newly diagnosed kids, then you have to have compassion for their parents who are often just trying to keep their head above water.

Most parents really want to do right by their diagnosed kids.

That is not to say there are not really shitty parents out there. I was a foster care worker, I have seen them. But give a parent the benefit of the doubt that they are trying to do the right thing, and offer specific advice if you see that they are doing something that their cause their child pain down the road.

Anyway.. I am really glad that you have posted your comments and cautions to parents on my site. I really do welcome it.

I know that we need to hear it. I just want it to be offered in the nicest way so parents will consider it and keep in mind when making treatment decisions.

Then even if they do decided on a 40 hour a week ABA plan, they can keep in mind than they need to be smothering them with love and attention the rest of the time.

In a way you guys are a Rosetta Stone for us. Just please be gentile so we can take in what you have to offer.

Ginger said...

Typhona,

Ok... I started writing about understanding for parents, and went totally off on a tangent and forgot about what I wanted to say.

I know i need to do a post about this, but for now...

I hear you on the word 'cure'. It can be construed to mean that say that the autistic personality is flawed, but I don't think that is the way the general public, and the parents I know, see it.

It is not like I want them to invent a pill that will turn Chandler into another version of me. I am hyper social, have one million friends and throw all the best parties. I am an expert at socializing. ;)

To me a 'cure' would be having him back on track to the person he was, and was becoming, when he began to regress. He was always our quiet little one. He would become engrossed in his toys, but would play with his brother, and talk to us, and greet new people when they came in the house, give them a hug, then go back to his toys.

(My friend Dave loved when he did that, he called Chandler "The Prototype" because he thought all children should be modeled after him)

Then he went away. He is coming back now, and in the last four months he has been going to the door to see who is here when people come over. I love that.

I just want to state for the record, I don't think there is anything wrong with the autistic personality. I fell in love with an married the autistic personality. Scott is an amazing balance to me. I am high strung and nothing rocks him. With out each other I would always be out partying, and he would never leave the house. God was so wise in putting us together.

So I do try to avoid the word 'cure', as I don't want it to seem like I want to turn Chandler into a Real Estate Salesmen of the Year, but I do want him to be cured of his metal poisoning, of his gut problems, and whatever other physical problems there are that are making things hard for him.

There are so many really beautiful things about Chandler that I don't want to change. His earnestness is at the top of the list. Everything he does is genuine, and he does not know how to be fake.

Last weekend we were at a friends house, and when we left, he said to my girlfriend, "bye, bye Brynn". He had never said her name before and she burst into tears. It was meaningful to her that he recognised her. She felt special, because she knows he only says what he really means, and he meant to notice her and said her name.

I LOVE that he is such a powerful little boy in the lives of so many people.

I don't want him to be cured of that.

Typhona said...

You know, I started to say something about that. I didnt mean to come across as attacking anyone. Im terribly sorry if it seemed that way. I get a little carried away sometimes. Some of it is due to my childhood experience, and from my g/fs daughter, whos own father said 'I dont care about all that medical stuff just fix her, she cant even tell you her own name if you ask her'. He said that right in front of her. I know that he is not the typical example by any stretch pf the imagination. However in dealing with the only advocacy group for Memphis it did seem to be more along the lines of those parents way of thinking. Maybe Im just sensitive. Today her daughter is in 2nd grade at one of the better schools in the city. She asked us not to talk to her teacher and not to tell her that she was autistic. It was heartbreaking. She also told us that she didnt want any of the accomodations that we had fought all last year to get her so that she could maintain her mainstream class.

That goes back to the balance. She is well aware that she isnt 'normal' (thank God for small favors) but we know that those accomodations are for her benefit to help prevent a 'meltdown'. So we are working through that. We also dont think that this is entirely from within herself. we believe that some of the staff told her at the end of last year that now that she was going into 2nd grade she would be to big for some of her accomodations and that the other kids will pick on her. The staff members in question are not there this year(another small favor).

Speaking of getting off track. I appologize if I came across as attacking anyone, I wouldnt want to discourage any parent from doing what they think is best. And what you said about not wanting to lose those precious is what I was primarily talking about. It seems the question lies somewhere around 'how much of your childs personality are you willing to give up in exchange for a more normal child'. Again Im in no way attacking anyone. We want nothing but for her daughter to have as few problems socially and in education, and we dont want to saccrifice her beautiful personality. She hugs her friends at school, she hugs our friends when they come over, and isnt afraid to make new friends. I hope I cleared up any misconceptions as to what I was saying.