Monday, February 20, 2006

How my daughter was cured of autism

My last post brought another comment from Melissa H who asked me to give details of the therapy which helped my daughter so much. This was one of my intentions for this blog, and I'll try to give details as much as I can in this post. However, there's no way that I can give every detail of the therapy she underwent, nor of her story, because there simply isn't time.

I do want to publish a book about my daughter's experience and outline the ideas underlying the therapy. But the headmaster of the school is a busy man and doesn't have much time for doing interviews. He prefers to spend most of his time continuing to help other children. But I hope to get to it sometime in the future.

Melissa also asked me to not play cat and mouse with my blog and bait parents looking for the perfect solution to their child's problems. That definitely wasn't an intention. It's just that I simply don't have time to write everything down at once. And I don't know what those parent's problems are so can't offer a solution. I can only tell the story of my daughter's escape from autism and put my own analysis of the present trends in autism.

The main intention of this blog was essentially to bring up things for debate that I think are in dire need of it. I believe much of the present thinking on autism is muddled and based on assumptions and false logic, and debate is crucial if we are to approach the problem of the "autism epidemic" on a sound footing. I personally suffered for three years at the hands of pediatricians who, I eventually discovered, didn't have a clue what they were talking about, and my daughter suffered accordingly.

I thought perhaps other people who have reservations about their child's autism diagnosis might want to join in.

However, since I've been asked for more details, I'll give them. It will take a long time to get my thoughts in order and write this post, so if anyone is reading, and is interested in what you read, and does want to stir up debate about the "autism epidemic" then please pass the blog along to others. I'll have to put a lot of effort into writing it, so the more people see it, the better.

But first some clarification, or more information on my last post, and an answer to some of the good questions that Melissa brought up, as it relates to what happened with my daughter.

Melissa quite rightly points out that autism has always been a spectrum disorder. There have always been varying degres of severity. What I don't believe, however, is that the spectrum is as vast as the medical profession now makes out. This is because the medical profession simply makes the assumption that the spectrum exists, and that they are "discovering" it. But in fact the medical profession is actually creating the spectrum itself, and can make it as vast as it wants to, simply by adding another existing disorder, or by inventing a new disorder.

For instance, Melissa makes the point that "hyperlexia" is now on the autism spectrum. Well, if the medical authorities say it's part of the spectrum, it is. They make the rules. But hyperlexia is only a problem if coupled with an inability to communicate that cannot be cured. Some children have amazing abilities to read abstract symbols (child prodigies of music, for instance) but develop normal verbal communication skills all the same. Nowadays these children are in danger of being diagnosed as having a disorder when they may be nothing more than bright.

(For an great insight into gifted children who talk late, and some incredible reports of misdiagnosis, read Late Talking Children by Thomas Sowell. It's a great story. And look at the work being done by Doctor Stephen Camarata at Vanderbilt University.)

Melissa also makes the good point that the reason so many people with autism were institutionalized in the past was that the therapies to help them weren't available. This is true. But there is an important difference between the percentage of people with autism who were institutionalized and the actual numbers of autistic people who were institutionalized. The percentage was high, no doubt. But the actual numbers were doubtless very low.

This is because until fairly recently the number of people with autism was miniscule. It was an almost unheard-of disorder. Thirty years ago ask anyone what autism was and chances are they wouldn't have had a clue. Now everyone knows the word. And almost everyone knows someone affected by the disorder, or by the spectrum of disorders.

Which brings us to the question: where is this huge rise in autism coming from? And more specifically the rise in "regressive autism", when a child develops normally until 18 months or so but then slips away into their own world.

Because what we are talking about here is not children with just minor communication problems (even if the medical establishment puts them "on the spectrum"). We're talking about kids with serious problems. As Melissa points out, many of the children she has come into contact with have extreme problems with communication and exhibit such anti-social behavior as temper tantrums or running wild in public.

My daughter had many of these symptoms too. But, as I mentioned in a previous post, there was some understanding of language. And because I firmly believe that true autism is still a rare and incurable disorder, I simply refused to believe that my daughter had autism. The problem was something else, and I wanted a solution.

Unfortunately I couldn't find it among the mainstream medical establishment. But what I discovered when I finally found someone who understood the problem is, I believe, revolutionary.

Now, before we begin, I'm sure there will be people who will read my account of my daughters "cure" and start to laugh and say things like: "You cannot be serious!"

But I saw these techniques work for my daughter, and turn a child diagnosed as "highly-autistic" into a talkative, funny, little girl who loves to study and is looking forward to starting school.

And another thing before we start. Let me tell you that I am not a right-wing authoritarian, nor campaigning on behalf of any pressure group. I'm as liberal as they come. Some of the methods used at the school my daughter attended might be a little shocking to people, especially those who believe in what I might call "the gentle, understanding touch" for the answer to children's problems. All I know is that these methods worked for my daughter. And it has worked, and is working, for other kids at the school too.

First, my daughter's early years. For the purpose of this post, I'll call her Denise. (Now she's no longer "autistic" I don't want to reveal her real name because her medical records still carry the mark of autism.)

She was normal in every way as far as we could see. She smiled, laughed, made eye contact and was generally happy. She began to say single words at about 12 months, and by 18 months had begun to make sentences. At 18 months she had a development test and seemed fine.

It was when she reached two years old and language hadn't developed further that we began to become, not so much worried, but curious. But she still seemed generally fine, though sometimes was moody and silent, and would often sit in her buggy just staring ahead and often wouldn't acknowledge her name being called.

Then when she was two years old we moved house, and at about the same time the slow descent into "autism" began.

The language not only didn't develop, but began to dry up. She would cry or have tantrums for inexplicable reasons. She began to play alone, spending hours lining up blocks or building towers. She stopped responding when her name was called and seemed to be in her own world a lot of the time. She was also hyperactive and spent a lot of time bouncing on the chairs. Whenever we took her to the playpark she would just walk around, completely uninterested in the swings or slide, often following lines in the ground or the edge of a path.

By the time she reached two-and-a-half she was almost completely non-verbal. Her temper tantrums became so fierce that she would sometimes wear herself out and fall asleep. For most of the day she wandered about the room in a daze or dressed and redressed her doll.

At about this time our second child was born. Another daughter. By this time Denise was a monster. Temper tantrums become almost constant. Getting her dressed was an almost impossibility. At night she would walk about in circles in the dark room for an hour, sometimes two, before going to sleep. Trying to communicate with her was impossible. By the age of three she still wasn't toilet-trained and had to wear diapers.

When our second daughter went for a development test at six months old, the pediatrician noticed Denise's odd behavior (she walked about aimlessly in the surgery touching things) and arranged for her to be assessed.

It was about three months before the assesment could happen, because my wife went back to her own country for a while, during which time Denise's behavior became intolerable. She often wouldn't even stay in the house, and would run out into the garden at night and crawl among the bushes like a wild animal. And still, at age three-and-a-half, not toilet trained, almost completely non-verbal, and having temper tantrums almost constantly.

Then the assessment took place. And the diagnosis was autism.

Of course we were devastated. Our once-lovely daughter reduced to this.

But we accepted it, and moved on. Even autistic kids can have a life, the pediatricians told us. So I began to learn everything I could about autism to see what I was dealing with. As a one-time newsaper reporter I'm pretty adept at searching out facts and doing analysis, and I wanted to know everything I could about this terrible disorder that had sucked the life right out of my daughter as though she'd been hexed.

Then a strange thing happened. The more I learned, the more I became convinced that something wasn't right with the diagnosis.

I read the DSM-IV criteria and concluded that my daughter did not have "classic" autism because she didn't show all the symptoms needed for a diagnosis. She had no adherence to routine, and the temper tantrums were brought on not by a break in routine but simply when she didn't get what she wanted. She would also go to strange places without problem. In fact, travelling with her was easy.

So the diagnosis was PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified), a diagnosis given when the child doesn't fit the symptoms of normal autism, but still has developmental problems.

But all that this seemed to be saying was that the medical establishment didn't really know what was wrong with my daughter. And in any case the disorder was not "pervasive", because "pervasive" means all-encompassing, and my daughter understood some of what was said to her and could do some things herself. The disorder wasn't pervasive at all.

So I began to question the medical authorities. I wanted to know how my daughter could understand some of what was said to her and yet still be diagnosed as autistic.

And I found that the pediatricians were like Humpty Dumpty in Alice in Wonderland. You know, "When I use a word, it means just what I choose it to mean."

Essentially their attitude was: "It doesn't matter what your daughter can or can't do. We say she's autistic, and so that's what she is. And you need to accept the label to get her the help she needs."

So a diagnosis of "autism" went on her record, whether I liked it or not, and I went on a course to learn how to communicate with an autistic child. And here I was told that because autistic children have trouble making sense of language, you should speak in chronological order. Don't say: "We're going to the park, so put your coat on." Say: "Coat. Then park."

Do this and the child's behavior will improve, I was told.

This didn't seem to do much for my daughter. So I told the pediatricians that my daughter understood language when it was spoken in any order. She didn't understand much, but the order was irrelevant to her.

Then I really discovered how intransigent these people are, not to mention not very bright. They didn't seem to understand the difference between not understanding language because of the order it's spoken in, and not understanding language because a child doesn't know the words.

So I fought and continued to fight against the autism diagnosis. In the end they agreed to have her assessed by a team of three top specialists and I would answer a huge questionnaire about her development. My daughter spent almost two hours being assessed in a seperate room. The specialists came out and one of them said: "I think we've seen all we need to see."

A week later I got a report saying that my daughter had "extreme communication disorder on the autistic spectrum."

It was obvious I wasn't going to get any satisfaction. But neither was I going to give up.

So I quit my job, we sold everything we had, and we left the country and moved to my wife's home country.

By now my daughter was five years old. She was still almost totally non-verbal. She didn't answer her name or respond to requests. She couldn't read, write, or even hold a pencil. Most of the time she played on her own and ignored others. Eye-contact was non-existent. Thankfully she was at least toilet-trained by now.

Then we had a big stroke of luck. We heard about a small school out in the countryside that helped children with communication difficulties, so we went up there to have a look.

It was housed in a two-room shack and run by a headmaster and his wife, their son, and two assistants. The headmaster interviewed us three times and impressed upon us that his therapy wasn't conventional, and that he needed to be sure that the parents were willing to put a lot of work in to helping their child, because the parents are the only ones who can do it. He also told us that he wasn't a doctor, but he had 40 years experience of working with children.

Of course we agreed to put in the work, and I accepted the fact that he wasn't a doctor. By this time I'd had enough of doctors to last a lifetime.

And it was on the third visit that we discovered the real problem with our daughter. We were in the headmaster's office, with the headmaster, while our daughter was in the schoolhouse, taking part in a lesson for a trial. The headmaster then asked one of the assistants to bring my daughter back to the room.

He told us to watch her behavior very carefully when she came in. So we did.

My daughter came in the room, looked about, then sat on a stool a little way from us. The headmaster then pointed out something. My daughter had been away from us, her parents, for half-an-hour, but on seeing us showed no interest in being close to us. That was odd.

The headmaster then asked my wife to put our daughter on her knee. She did, and my daughter sat there calmly.

Then he asked us to sit my daughter facing my wife, and pointed out something else, a small detail that none of the "expert" pediatricians had noticed.

My daughter was sitting calmly and apparently happily.

But she had put her arms in front of her to form a barrier between herself and her mother.

The headmaster nodded. This was the problem, he told us. And this was a problem he was seeing more and more often these days.

My daughter's problem was simply that she had not bonded with her mother.

He then went on to tell us his view of child development.

In the first year of life, he told us, a baby is just an animal, and acts like an animal in having its needs met. Babies need to be picked up regularly, just like any young animal needs to be carried by its mother. This is the basis of bonding. And the way a baby is held during those first few months is crucial. Any child can be affected by mishandling in the first few weeks of life, but the effect can be much more devastating for any child with a sensitive streak.

The bond with the mother is crucial, because without it the child will have a weak (or no) ability to bond with others and will not want to explore the outside world. Then the child will often withdraw into their own world, lose the ability to communicate (because communication isn't important to a child with no bond with the mother) which results in temper tantrums and "coping mechanisms" such as wandering around aimlessly and engaging in repetitive behavior. Once this behavior pattern is set, it becomes increasingly difficult to change, and worsens over time.

The reason that so many mothers no longer know how to look aftertheir baby properly is, the headmaster believes, due to the immense changes that have taken place in society over the past two or three decades. Traditionally a new mother would learn how to look after her baby by taking advice from her own mother. But now many families live too far apart for this to happen. Mothers are left to cope on their own, and make mistakes in those crucial first few months.

Many young mothers also find it extremely stressful to cope with a new baby on their own, and this stress is communicated to the baby, which further hinders the bonding process.

There are later bonding processes too. And the child needs to go through all of them in order to develop properly. After bonding with the mother, the child needs to bond with the family before she can bond with people outside the family and society in general.

Problems can arise here, too, and these problems are also down to the extreme changes in lifestyle of the past few decades. Traditionally, children bonded with the family through working and playing together. But now families rarely work together, mainly because many domestic jobs are automated or done by others outside the family, and much playing together has been replaced by young children spending time watching videos. In short, many parents just don't spend time with their children anymore. All these things can lead to development problems for the child, some of which may not be apparent until years later.

What he said put a new perspective on my daughter's problems. But of course this was just his theory, and I didn't believe it wholesale, interesting as it was. Luckily, the headmaster was ready to show us how his theory worked in practice.

It happened like this.

A little later we went to the schoolroom, where the headmaster continued to explain about the way the school was organized and the way lessons were run. Then suddenly he leaned over, picked up my daughter and held her tightly to his chest.

She screamed the place down.

And screamed for the best part of an hour as the headmaster walked about, holding her tightly all the time, and telling us that it was essential to break down the barrier my daughter had put up between herself and the world. Until that had happened there would be no improvement.

After half an hour my daughter was hysterical, but the headmaster calmly got a wet cloth and wiped the tears from her face. Then when she'd calmed down a little he put her down, placed a chair in her hand and pushed her into a semi-circle of children having a music lesson.

My daughter sat down and looked about for a few seconds as though waking from a sleep. Then her eyes focused on the teacher. And then my daughter (and remember at this point she was making no eye contact and was almost completely non-verbal) simply began to copy the teacher's hand actions and mouth the words to the song.

Me and my wife were stunned. In fact my wife was in tears.

The headmaster turned to us and simply said: "Success."

Then he told us he would accept my daughter into the school, and gave us details of what to do.

The basic of this was hugging in order to take her back to being a baby and bond with her. (There's much more to the therapy, but it's too complicated to put it down here.)

Anyway, we followed his advice. It was tough, because my daughter struggled like a wildcat. Sometimes I had to wrestle with her for two hours before she calmed down But eventually she got to like it, and started to approach me or her mother to be picked up and hugged.

And when she was hugged, she held on tightly, just like a new born baby. And then three months later she began to talk. Just like that. And not just the odd word. But streams of fully-formed intelligible speech. And of course she used speech to communicate the irascible personality we always knew she had. The best moment came when, during one of the hugging sessions, she tried to escape and said: "Daddy, you shouldn't be doing things now that you should have done when I was a baby!"

Wow!

From then on her development just rocketed. With other elements of the therapy she became faster at responding to requests until she was moving so fast the words were hardly out of my mouth before she'd done it. She became competitive with her sister, learned to help about the house, and play imaginative games with her sister. She was now as far away from being autistic as it is possible to get.

The next challenge was to improve her education, to teach her to read and write, and get her ready for school. At this point she could hardly write at all and her reading was pitiful. Of course she didn't want to play ball. Like myself and her grandmother she has a stubborn streak a mile wide, and this, according to the headmaster, was also a big part of the problem.

But the headmaster has a simple method for dealing with this kind of child (or any child for that matter), and again it's at odds with mainstream thought.

Most educationalists nowadays reason something like this: if a child doesn't want to study, don't force them. Go slowly and gently, and if your child is in a bad mood or it's obvious that they really can't do something, then don't push it. Leave it until the child feels like making more of an effort.

The headmaster's reasoning is somewhat different when dealing with children of any kind. He believes that a human being becomes what they are taught. So he uses a different approach.

It's called old-fashioned discipline.

The basis of the reasoning is that children need guidance, and that adults, by being kind to children (whether a child is disabled or not) have completely ignored their responsibility as parents and members of society, and to the children themselves, who grow up completely lacking in any kind of self-responsibility.

So when it came time to make my daughter study, I shouted at her until I was hoarse, I slammed my fist on the table, I put the pencil in her hand and forced her to write, and never allowed her to leave the table until she had done that days lesson. Sometimes I kept her awake until eleven at night. She cried, she bawled, she dug in her heels, but by Jove she did those lessons.

And guess what? Now she reads, writes and does math. In some ways she's ahead of other kids. In fact, I often find her sitting at a table with her sister teaching her sister how to read.

And in a few weeks time she'll start school in a normal class. If I'd accepted the diagnosis of autism, heaven knows where she would be. In fact, it's almost certain that when she grew up she would have had to go into full-time care.

Don't get me wrong, she still has a lot of catching up to do. When a child doesn't develop for the first five years of life, that's only to be expected. But now she is developing normally, and is just behind other kids of her age. With the right education, there's no reason why she won't catch up totally. The only terrible thing about her story, is that she didn't get the help she really needed so much sooner.

So that's basically it

--My daughter developed normally until 18 months
--She stopped talking and exhibited autistic-like symptoms
--She was diagnosed as autistic
--I didn't agree because I really don't think true autism is so common and do think that most pediatricians don't know what they're talking about.
--I left my country and found a man who could help
--My daughter was cured
--I was right, the medical establishment was wrong

So here's something to think about before I sign off. (I've been writing this all day, and I'm worn out)

There's a theory called, I think, the Black Sheep Theory. It goes something like this. If you want to prove that all the sheep in the world are white, it's no use looking for white sheep. You look for a black one. Because the existence of one black sheep would prove beyond doubt that all sheep are not white.

I believe my daughter was one of those black sheep.

She, and other children being "cured" of "autism" by the methods used at her school.

My daughter's problems looked for all the world to be autism (or PDD-NOS), according to the diagnostic criteria of the DSM-IV. But she didn't have autism, because she was cured and autism is incurable.

Given my daughter's success story do you thinks it's worth investigating whether the rise in "autism" is perhaps not a rise in autism at all, but a rise in something else? And more importantly, a disorder which has its roots in something else and which can be cured with the proper treatment.

Do you think we should be looking for more black sheep?

I do.

All the best

Steve

PS
From now on I'll be using the blog mainly to pick up news about autism and put my own opinions on it. These long blogs are killers. Hopefully there'll be a bit of humor in the future. After all, we all need laughter every now and again. After what I went through with my daughter, I know that I do!

PPS
Comments to this blog welcome as always.
But please don't post saying you disagree with the methods used to cure my daughter. They worked, that's all I care about. And don't write saying that the headmaster's theories of child development are wrong. He has cured many children and there are many parents who are extremely grateful for what he's done. I'll give details of some of the other success stories in future blogs.

5 Comments:

Blogger Octoberbabies said...

Steve,

I think what this is all coming back to is the use of the technical language we use to describe our kids and their therapy. I don't think anyone would post that these methods you describe don't work. I certainly don't think that anyone whose is receiving ABA therapy would disagree that the method used on your daughter doesn't work because the scene you describe on the first day you visited the school sounds EXACTLY like a day at my daughter's ABA school. If India is in circle time and pitches a fit (as she often does) her teacher calms her down and puts her right back in the circle over and over and over til India focuses on the task at hand and realizes that circle time isn't so bad after all. We call this “redirection”.

I agree that many education professionals are of the opinion that if a child doesn’t want to do something they shouldn’t be forced. But I don’t think that’s the case with the professionals that deal with kids on the spectrum, not at all. I can tell you that in our 9-month experience with autism professionals there hasn’t been ONE that’s said “India didn’t want to do such-and-such so we didn’t force her”. It’s the reason we love ABA.

Like your daughter, ours has shown exceptional progress. Within weeks (literally) of starting her therapy, we were able to start taking her to restaurants and movies which we’d had to stop because of her inability to stay still, focus her attention, etc. Now it has been 9 months and the same little girl who didn’t have eye contact, could care less if we were in the room with her and had MAYBE five words in her vocabulary, speaks in sentences, is incredibly affectionate, follows commands, is starting to answer questions and can be taken just about anywhere. Just like your daughter.

So you see, I don’t think we’re disagreeing here at all. I just think it comes down to the language we’re using to talk about our children’s “condition”.

You say “cured”, we say “recovered” – any adult with autism will tell you that they are no different today than they were when they were kids, they’ve just been shown how “the rest of us” function and have adapted to it. It all starts back in childhood when they’re taught that running off during circle time isn’t cool.

You say “failure to bond with the mother” we say “refrigerator mother”, which is a theory/term that hasn’t been used in the US for a very, very long time because those of us who held our babies, cuddled, snuggled, adored know we did nothing to cause our child’s developmental delays.

You say “good old discipline”, we say “redirection” or “ABA” or “RDI” or “Floor Time” or “TEACHH”, you pick.

So again, I don’t think we’re disagreeing at all. I, personally, am quite alright with my daughter’s “label”. She ISN’T caught up with her peers, she DOES need to be taught via different educational techniques, she DOES have much to learn, she HAS come along way since we diagnosis. And at the end of the day she DOES have a developmental delay that specialists can’t quite put their finger on and if PDD-NOS is the label that will continue to get her the special handling she needs, so be it.
I seriously doubt that your daughter, with her PDD diagnosis would have been destined for a lifetime of full-time care. Thanks to all the research and education that goes into Autism, that is no longer the case for those with even the most severe cases.

10:39 AM  
Blogger Melissa H said...

My head is swimming and I need to chew on this for a while.

I think the above reply is pretty darn close to how I feel. The only thing that I would add is this:
Hugging is actually a well-known technique in the autism world. It is used quite frequently during meltdowns and anyone who knows anything about dealing with an autistic child knows that hugging just comes with the territory.

Supposedly, it is the deep pressure from the hugs that gives the children their "center" and enables them to re-focus. So, I agree with that.

As mothers, I think we always question daily whether we loved our children enough, smothered them with kisses enough, etc. So, the "not bonding with mother" hits a chord in my heart.

However, I do know that my little boy loves to hug and loves to be hugged. He loves to be tickled. He loves to give kisses and be kissed. And I love every second of it. I carried him around in a sling when he was a baby because he needed that extra touch. Or maybe it was me that needed it.

Perhaps the touch of a mother is part of his delay, but it is definitely not the whole picture for him. I wish that it was. How simple it would be to solve: love him more.

Thank you for sharing your story.

11:20 AM  
Blogger Xia Diaz said...

I'm curious to hear how your wife feels about this whole situation, and how she felt when she was blamed for her daughter's affliction.

On that same note, I decided to google refrigerator mother and I came across numerous websites that dicredit (and have discredited for a minimum of thirty years) that theory. To blame a mother for what is obviously a neurolocial disorder is quite absurd and sexist.

Here's a link about it. I suggess you read it.

http://www.answers.com/topic/refrigerator-mother

7:46 PM  
Blogger Joseph said...

The anecdote is pretty impressive, but so are many other such anecdotes. I didn't like the part about yelling and shouting. I don't doubt it might produce results - but autistic kids are very prone to get stressed out.

I have a problem with your view of autism as a monster - a common view nonetheless. You propose that there exists something called "real autism" from which no development or recovery is possible. How do you test for real autism?

I have read The Einstein Syndrome BTW. Sowell, like you, believes some autistic kids are not autistic. His sample of kids actually shows that many autistic kids grow to develop and do very well (without much hugging, mind you). But some people prefer to interpret that as 'they weren't really autistic, because autism is a great tragedy.'

Anecdotes from the Son-Rise program might also hold some similarities.

7:23 PM  
Blogger Joseph said...

I've posted an analysis of your recovery anecdote at my blog.

6:22 PM  

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