Wednesday, March 08, 2006

Back from the trip

Hello bloggers

As my no doubt avid readers are aware, I took my daughter on a long trip. I got back a few days ago but the jet lag and a cold I picked up in flight stopped me from thinking straight enough to post anything.

Anyhow, those of you experienced in long-haul flights (the +12 hours variety) will know just how tedious such a long time in the air can become. And for those of you who aren't, take my word for it. The movies you've often seen before; and if you haven't they're none the less dull. The newspaper kills an hour at the most. The in-flight magazine makes the movies look interesting. So all this means that there's a lot of time to do some thinking.

And of course, being with my daughter, I got around to thinking about her diagnosis for autism and how I discovered it was false. The last time we took a flight together it was to escape from the UK to the country we now live in. That was less than two years ago, and at that point my daughter was almost completely non-verbal and made very little eye contact. What a difference such a short space of time makes.

Here we are on the plane, and this little girl now talks non-stop, makes eye contact and has a very funny sense of humor. She also goes to the bathroom on the plane by herself, come back to her seat, fasten her seatbelt and gets back to her coloring book. The story of how I discovered her problem was not autism, but something else, is outlined in an earlier post. (This account is being constantly updated as this blog goes on. It's a complex story with only the basic details outlined at the moment)

But the long flight also got me thinking about something else, because having my daughter on the flight really made it hit home. You see, the man who finally got to the root of my daughter's problem told me about a year ago that my daughter's development was about to become very rapid.

At the time of joining his school, my daughter's development, at the age of four, had progressed to little more than that of a 1-year old. This, thankfully, had nothing to do with autism, but a simple lack of development, and the difference is hugely important. An autistic child can develop, but will always carry the traits of autism, since autism is incurable. Therefore an autistic child will always exhibit certain behaviors and in order to deal with the world has to use what have been called "coping strategies" such as following a routine to ensure the world always carries a strong element of stability.

But because my daughter's problem was due to a lack of parental bonding plus a heavy dose of stubborness (a problem which can appear so much appear like autism that it can fool the mainstream medics) she had the ability to develop normally, albeit late.

Her teacher's prediction was about the soon-to-come rapidity of development was spot on. What happened, once this stage was reached, was that my daughter went through all the normal developmental steps of a baby, but a few years late. In fact, her teacher predicted with an uncanny accuracy what would happen almost week-by-week. For instance he told us that in the next week or so we would see some interesting things begin to happen with our daughter's feeding habits. Sure enough, about two weeks later, my five-year-old daughter began to demand to be spoon-fed like a toddler.

This was the early stages of emotional development now taking place, her teacher told us. This lasted only for a few weeks, then she went onto the next stage. Over the next year her rate of development simply exploded. It was like watching a child grow in speeded-up time. She went through the two- three-year-old stage of writing on the wall. Imaginative play began in earnest. Dolls were laid out in tea-party fashion. But the funniest thing was when she suddenly became extremely competitive with her sister (you know, had to be the first to get on the toilet, get in the bath, get out of the house first) and the house became a battlefield. Thankfully this lasted for just a few months and now she's actually very kind to her sister and helps her to do things (she's even having a go at teaching her sister to read.)

This was wonderful, to see her develop so rapidly, and the best part came when her teacher told us that my daughter had now reached the emotional age of three. For an-almost six-year-old this might seem tragic. But once a child reaches the age of three, he told us, she will develop normally. And he's been right about that too, as my daughter has since come on in leaps and bounds and now shows practically no development lag whatsoever.

In effect, my daughter grew four years in 18 months. And what made this amazing "cure" really hit home was that flight I mentioned. She'd been on several long-haul flights before without problem. And that was the problem. Or a symptom of her real problem. Her teacher is fond of saying: "Children should be hard work and parents should be glad of it."

Well, that flight really brought home to me how much my daughter has changed and how much hard work a child can be. My daughter's development is now lagging by about 18-months, and so is about that of a five-year-old rather than the six-and-a-half she actually is. To be honest she did very well on the flight. She had a coloring book, and she had homework from her cram school to do (math and writing) and she had the meals to break up the monotony. But after eight hours she'd had enough.

"I want to get off." (She's bilingual in English and one other language, and the other language is her main one, which she uses even to speak to me, so this is a translation and so may seem fractured in English)

"You can't."

"Get off!"

"You can't"

Etc....

Realizing that she couldn't win, she eventually took a piece of paper from her notebook and wrote the passive of the verb "to get off". (In English this can be translated only as the weird-sounding "to have been got off", but in her first language this is a perfectly gramatically correct. The handwriting in a strong, cursive non-roman script was pretty good too...)

"To get off has been written!" (In English: somebody has written it's time to get off) she told me.
No dice.

Thankfully the long flight got the best of her and she fell asleep soon after, leaving me in peace for the final hours of the haul. Yes, children should be hard work, and parents should be glad of it.

Yes she is, and I am glad of it.


Most of the time, at least...

Stone the crows...

Steve


PS
I'll write more about our trip in future blogs. It brought up several points of interest, not least how quickly my daughter got the hang of English.

PPS
The last blog brought a comment from Wirter Anonymous, who pointed out, quite rightly, that "there are many, many conditions that affect communication skills aside from autism that can look just like autism. I am sure that if she [my daughter] is cured that she never had it to begin with. No matter how much some parents yell, discipline their child some autistic kids will never get better. Consider yourself blessed everyday that she is fine and communicative and love her with all your heart."

I agree wholeheartedly that there are many conditions which look like autism but aren't. And these problems may be increasing due to the way children are brought up. The problem is that autism has become such a buzzword nowadays that many pediatricians are looking for it when it isn't there and many children may be being misdiagnosed and then denied the help they really need. These children then may develop real problems because the underlying problem was never sorted out. This happened with my daughter, and it was only my persistence in looking for the real answer that brought the solution. Other children, with parents who blindly accept what the pediatricians tell them, may not be so lucky. To my mind that's nothing short of tragic.

And yes, I agree that yelling at an autistic child doesn't do any good, because autistic children have great trouble in deciphering spoken language. This was a point that the pediatricians hammered home to me again and again, telling me that I just had to speak to my daughter slowly and put the instruction in strict chronological order in order to make her understand.

In fact, one of the things that first made me contend my daughter's autism diagnosis was the fact that she had no problem in understanding most of what was said to her, and could follow three and even four- or five-part instructions with ease. In fact the woman assigned to teach me autism therapy, on hearing about my daughter's good receptive language skills, not to mention her lack of any problem with food (autistic children are often extremely fussy eaters), sleep (they often don't sleep much at all) and lack of repetitive stereotypical behavior or need for adherence to routine, eventually frowned at me as though I was playing some kind of joke and said: "Are you sure your daughter is autistic?"

To which I replied: "I don't think she's autistic at all. It's the pediatricians who are saying that..."
But when the problem isn't really autism, and simply looks like it to anything but the most expert of eyes, a bit of shouting (when hand-in-hand with love and affection and praise) can do a world of good.

As for considering myself blessed and loving my daughter with all my heart, I do both. I am blessed, because the chance of finding the man who really helped my daughter was a million to one. Whatever your belief system, some higher power smiled on us at that moment and directed us to that man, for which I am eternally grateful.

And I love my daughter to the core. I think that's shown by how long and hard I fought the medical establishment on her behalf, until finally I had to leave my country and give up everything, the house, my job, my life... And I would do it again. In fact, come to think of it, I actually gained, because this whole experience has revitalized my life.

All the best to all my readers!

Steve






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Wednesday, February 22, 2006

Autistic excitement

My (ahem) "autistic" daughter is very excited about the trip we're scheduled to take tomorrow, back to the UK to see her grandparents, and play with her cousins. Like many other "autistic" kids she gets very excited about going on an airplane, watching cartoons, eating sweets and then seeing relatives. Not to mention going for a two day jaunt down to London.

She's also excited about going to see the school she attended when we lived in the UK. At that time, when she still wasn't talking much, and her behavior was still bad and before we discovered the real reason for it, she spent six months at a primary school. I didn't think she would have remembered much about it, given that she didn't seem to pay much attention to stuff. But I know my daughter well, and she's always full of surprises. I also knew, even back then, that she was much more aware of things than she let on.

So a few months after we had moved away, and after we met the man who told us what the real problem was and she suddenly began to talk like there was no tomorrow, she asked her mother where her school uniform was. So we looked for it among the pile of boxes that house our possessions (or what was left of them after we left the country so quickly) and found it. Or at least we found the sweater, skirt and tights. The blazer, with the lovely golden crest, had been, alas, long since consigned to the dustbin (trash can for my US readers) and sent to that great school-uniform recycling plant in the sky.

My "autistic" daughter put them on and began to talk about the fact that the school was in London and how she used to go there blah blah blah. I was sort of surprised that she remembered so much, but, as I said, my daughter is full of surprises.

And of course, when we decided on the trip to the UK, my daughter decided that she wanted to visit the school.

I'd rather forget about the school, to be honest. Not that the school was particularly bad. In fact the educational standards are pretty high. It's just that there I came into contact with one of the most stupid and arrogant people I'd ever met. Maybe Mrs X. (as I'll call her) is the epitome of a peculiarly English type, though I'm sure the type surfaces in every country and culture. The type is known as... The Petty Official

These are highly inept people who find themselves in a minor position of power and use that position to "help" people (ie bend them to their will).

Mrs X was the Special Educational Needs officer at my daughter's school, and the moment she discovered that my daughter didn't talk much, she was overjoyed. In fact, I'm sure Mrs X had been waiting her whole life for someone like my daughter to appear. Mrs X had read a few books on child development and thought she knew it all. And, of course, with the A word on everyone's lips nowadays, had fallen prey to that morbid affliction kown as ITECIPAD (I Think Every Child Is Possibly Autistic Disorder)

Within just a few weeks of my daughter joining the school, Mrs X told me: "I know what the problem with your daughter is. And you know what the problem is too."

And without any discussion with us, her parents, or even telling us what she was doing, she notified a huge range of specialists and arranged for "testing" to be carried out.

On top of this my daughter wasn't allowed to sit in the morning assembly in her class, even though she was quite capable of answering her name when called. She was put at the side and given blocks to play with. And because she was "disabled" (Ho ho) they treated her with kid gloves.

Because nowadays, as Mrs X told me, teachers aren't allowed to discipline children because the parents get uppity about it. So, of course, my daughter, being extremely perceptive, played them along like a fish on the end of a line. She didn't want to listen to the story? She began to mess about. And the teacher response was to do absolutely nothing, and tell the other kids to ignore her.

I don't know about you, but when I attended school, that kind of behavior would have been given short shrift by the teachers I knew. But then I am "old", I suppose, and belong to a yesteryear world no longer with us.

[Strangely enough, when my daughter started to attend the school which finally took her in hand, a school which believes in "traditional" teaching methods (ie discipline) she learned in a matter of days how to line up in the morning, attend a morning meeting for 20 minutes, and then sit down and do a 45 minute lesson off to pat. Funny old world!]

Anyhow, because of all this, I'm not too keen on meeting Mrs X, though it would be amazing to see her face when she looks at my now verbal (sometimes a little bit too verbal) daughter who reads, writes, does math etc. But seeing that silly face might be a cost I'm not willing to pay. After all it might spoil my holiday.

But I'll take my "autistic" daughter to at least look at the school, and see her old stomping grounds in north London. She wants to go see the park, too, so that should be fun.

Talking about spoiling the holiday, it was almost spoiled before it began. Yesterday I had a fever, and was worried in case I wouldn't be able to go. Or at least would feel like death for the 13-hour flight. And of course trying to get real rest with three children in the house is not easy. Have you heard the noise they make running about on wooden floors?

Luckily, they are all barefoot.

Which brings me to something else.

A few weeks ago my daughter told her mother that her shoes were becoming tight, fast-growing girl that she is. Her mother promised she would buy some.

And of course the girl's mother forgot, being busy with 1001 other things. So yesterday my daughter reminded her mother of the promise, telling her that she couldn't go to the UK wearing those shoes because they really were too tight, and mom had promised.

So her mother apologized and took her to the shop to buy some.

And my daughter came home with the shoes and was very excited about them. (Like all "autistic" little girls, she gets really excited about buying pretty new shoes.)

And then she comes upstairs to show them to dad, who is semi-delirious in bed.

"Dad, I went to buy new shoes. Look at them!"

So I raise myself up and look, and they are indeed very cool. Pink canvas with red flowers. Very feminine and cute.

"That's nice, honey," I tell her. "But Dad's got a fever at the moment. I'll look at them properly tomorrow."

"Dad"s got a fever? OK..."

And she leaves the room.

I lay back down. Sweet rest.

But then I hear footsteps on the stairs... and the sister of the "autistic" one is coming up to see me too. So she comes in the room, and I tell her the same thing. And she leaves.

Sweet rest.

Except the "non-autistic" one goes out and leaves the door open and daylight is flooding in from the corridor.

"Close the door," tell her.

But she's gone.

And then I hear the "autistic" one coming back... and... this starts up

[This conversation is spoken partly in English, partly in a foreign language, but it's the nearest thing to a translation. Like many "autistic" children, Denise is bilingual and has the ability to translate spontaneously.]

Denise "autistic": "Dad's got a fever. You have to close the door."

Delilah "pseudonym": "No."

Denise: "Dad's sick. Now close the door."

Delilah: "No. I'm going downstairs. You close it. You opened it."

Denise: "You came out of the room last!"

Delilah: "No!"

Denise: "You'd better do as I say!"

[Like many "autistic" little girls, she can be very bossy with her younger sister. Or maybe on top of my daughter's "autism" she has a bad case of LBGD (Little Bossy Girl Disorder)]

I'm lay there right there with a temperature touching 38... desperate for rest... while there's a war breaking out right outside the room.

"Close the door!"

"Disgusting!" (That's the best translation I can manage)

"Delilah... Come back upstairs now!"

[Sound of footsteps hammering downwards followed by scream of pain from Delilah... followed by silence, then my wife remonstrating with them both.]

A few moment later, Denise pops her head round the door, apologizes (in English) for disturbing me, closes the door quietly and leaves.

Lord a mercy. Parents with "non-autistic" kids just don't know how lucky they are. I'm sure no normal kid would fight with her siblings like my daughter does. People with "normal" kids tell me that their kids never fight at all. Apparently it's one of the marks of being neurologically typical.

Anyhow, I wake this morning to find that the fever has fled. And I go downstairs and my wife tells me that Denise has inquired about my health.

I'm touched that my daughter loves me so much. Though whether she was concerned about my well-being or worried that the UK trip might not take place, I can't be sure. I prefer to think it's the former.

Pip! Pip!

Steve

PS
This post contains irony. Persons unable to understand this form of communication should immediately take a course at the nearest institute of adult education.

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Tuesday, February 21, 2006

Comment from Xia Diaz: autism and sexism

Hi bloggers

Here's a comment I received to an earlier blog from Xia Diaz. Again it shows how far the word "autism" has seeped into the popular consciousness and no matter how much you talk about other reasons for a child's problems, the word just keeps on popping up. I've done a quick answer below. Original comments in italics

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.

I never said my wife was blamed for my daughter's affliction. Nobody is blaming anybody. My daughter is a stubborn type who needed to be handled in a certain way to make sure she behaved properly. Neither myself nor my wife did so. That said, the headmaster of my daughter's school did congratulate us on having been so strict with her. Without that, she would have been even worse. Just like me, my wife was relieved that we had found the real answer to my daughter's problem and no longer had to deal with intransigent, narrow-minded pediatricians who can't see any answer to a child's problems except to label them "autistic".

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.

You are channeling new ideas into old thought patterns. I never said this was the old idea of refrigerator mother. Read my previous post, where I explain the difference.

http://autismhysteria.blogspot.com/2006/02/autism-it-doesnt-matter-what-it-is.html


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

I think you are talking about autism. And yes, I agree, it is a neurological disorder, and that is why it cannot be "cured", and the people who truly have autism can do no more than use "coping strategies" to make sense of the world.

My daughter's problem was something else entirely, and may be a problem affecting many of those wrongly diagnosed as "autistic".

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Autism: it doesn't matter what it is...

Hi everyone

I received two comments on my last marathon post, from Octoberbabies and Melissa H. Both of them basically agreed with each other, so I've copied the first here with my comments, as it brings up some interesting points. Essentially, this comment does show how embedded in popular culture the idea of "autism" has become. No matter how plain I make it that my daughter didn't have autism, people will just say, "Oh but it's the same thing. You're just using a different word. Oh sure... Just like being permanently crippled and having a cut on the knee are exactly the same condition. They're just different words.

So let's make this clear. This blog is not about autism. It is about something else entirely. It is about how every child problem (even if it isn't a problem) is being classified as autism and parents may be being denied the real help they need for their child.

The posters comment is in italics, with my comments following.

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 agree, there is a difference in the technical language used to describe our kids. I never accepted the autism diagnosis because I knew my daughter was fully aware of what was going on around her (exceedingly un-autistic) and that the problem behaviors she had were the result of something else.

For instance, one night (just after we'd received the diagnosis of autism) I was teaching her the names of animals by using a puzzle. I had to shout the place down before she would do anything, but eventually she did as she was told. I asked her to pick up an animal and place it in the puzzle. She did three or four without problem. Then when I asked her to do the next one, she placed her hand over the correct animal, held it there for a few seconds, then placed it above the wrong animal. And then she looked at me from the corner of her eye and grinned. And then waited to see if I would get angry with her.

It was at that point I realized I was dealing with a child who was fully aware of what she was doing, and a child who was clever enough to use psychological techniques in order to play power games. Autistic? Don't make me laugh.

And guess what? When I told the pediatricians about this, they just smiled at each other as if to say I was lying, simply because I didn't want to accept a diagnosis of autism.

Well, I've been proved right, because now she shows no problem behavior at all and has been accepted into a mainstream school where she'll do lessons with 30 other kids.

On top of this she has a great sense of humor and, as I mentioned in my original post, loves to play imaginative games with her sister. This is not a case of a child "recovering" from autism, because one if the sure-fire signs of autism is a lack of imaginative play. Autistic children have a lack of imagination and they never "get" it. My daughter has imagination in spades.

My experience with the medical establishment showed me that the word "autism" is now used to cover a wide range of problems that have nothing to do with "autism" in the slightest. Autism always was, and remains, an incurable disorder. Neither do individuals "recover" from it. They can learn coping strategies, but the neurological disorder doesn't disappear.

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.

ABA and what happens at my daughter's school are world's apart. At my daughter's school there is no "therapy" as such, and the hugging demonstration was done by the headmaster just to show one of the things that we would have to do at home in order to bond with our daughter properly. This is not hugging a child to stop a temper tantrum. In fact the whole point of hugging in this context is to make the child feel uncomfortable. And when the child does become comfortable with hugging, the position should be changed to bring back the discomfort. The whole basis of this man's ideas is that only the parents can solve their child's problems, because when the problem is one of bonding, the parents have to take charge.

In fact when my daughter showed rapid improvement the man told us plainly: "Don't think that your daughter has improved because of what we are doing at the school. She's improved because you have changed your attitude toward her." In short, we had showed her that she wasn't going to get away with her bad behavior any longer.

This is a crucial difference between this man's ideas and the other therapies. This therapy relies solely on the parents making an effort at home. It's not just a case of stopping your child being badly-behaved, or thinking that the "therapy" at school will help. It's a case of using every single second of the day to make your child improve. And never letting them get away with saying "no". I put my daughter through boot camp. From the minute she came home from school, we got out the books and we began studying or doing some kind of activity. And we kept on going until she mastered it.

[Make note: this is not a cure for autism, and the man makes no such claims. The techniques can help autistic children, but they are used mainly for children who have behavioral problems unrelated to autism, but which are now being classified as "on the spectrum" by pediatricians who are not educated enough to know the difference.]

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".


At my daughter's school there is no "circle time" or anything of the sort. The children don't "focus on tasks". They sit at desks and do formal lessons, as they did in the old days. In fact, a national newspaper visited the school because they had heard about the wonderful work being done with the children. When they turned up they decided they couldn't do a story because the children looked so "normal" they were actually better-behaved than those in most other nursery schools.

The children at my daughter's school aren't "calmed down" when they "pitch fits". The teacher uses a loud authoritarian voice and the kids play ball. Why? Because they know for sure that they just can't get away with "pitching fits". It just isn't allowed. End of story.

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.

My daughter never was "on the spectrum". She had a different problem. But because no-one knew what it was, putting her "on the spectrum" was the only option. Luckily for her, we found an alternative.

Of course, those working with kids "on the spectrum" will force kids to do things. But "things" is a pretty wide description. At my daughter's school they don't teach them not to run from a circle. That would be the absolute minimum expected of any child. They teach them to do math, read and write, tell the time etc. In fact, everything that an old-fashioned nursery school did 30 or so years ago. The parents are also expected to do much of the work themselves at home, often keeping the child awake and studying until midnight in order to force the brain to work. Maybe ABA tells parents to do that too. If it does, great.

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.

We had always been able to take our daughter to restaurants and movies. We could even take her on 11-hour flights and she wouldn't cause a problem. That was another reason why I refused to accept the diagnosis of autism. She also made eye-contact when she wanted to and her understanding of language, while behind that of other kids her age, was still pretty good. Of course, the pediatricians wouldn't believe any of this either.

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".

The language is crucial. Say a child has a lack of bonding with the parents and you have a curable condition. Say a child is autistic and you have an incurable disorder which will seriously impair a child for the rest of her life. Not to mention the stigma that goes with it. The real tragedy is that if a child is suffering from a non-autistic disorder (such as lack of bonding), but it isn't treated, it can then become a real problem later on, and the chance to deal with it has been missed.

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.

I'm using the word "cured" in an ironic sense. No-one can be "cured" of autism, and the fact that my daughter is now normal shows that she never had autism in the first place.

As for adults with autism who tell you they are still the same today as they were when they were kids, I take that kind of stuff with a pinch of salt. They have not been shown how the rest of us function, because truly autistic people don't know how other people function. That's what makes the disorder what it is.

Maybe they were a bit wild as a kid and had to be taken in hand. But that's not autism.

I'm wondering how many adults are now walking about thinking they have autism just because some incompetent pediatrician diagnosed them as such. These people can function perfectly in society and have nothing wrong with them except maybe shyness or not much sense of humor. This kind of autism can affect almost anybody.

In fact more than a few adults with autism are "self-diagnosed". Since autism has become such a buzzword, there are people who are picking it up as a convenient "label" in order to make themselves appear special. They say they are autistic because they "feel different" to other people. Well, who doesn't?

All this makes a mockery of people who have real autism.

No autistic child will ever be as fully-rounded as my daughter, because my daughter doesn't just use "coping strategies" but is a fully-functioning human being with the full range of emotions. And if that's autism, then we all suffer from it.

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.

A failure to bond with the mother and a "refrigerator mother" are not the same in the slightest. Years ago it was thought that the refrigerator mother was the cause of autism. This idea has long since been discredited. I'm not talking about a refrigerator mother. I'm talking about honest mistakes made in parenting in the early years of a child's life which can have profound effects on the child's development. This is not autism (which, for the umpteenth time, is an incurable neurological disorder) but something which can be cured by the right treatment.

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

It depends on the problem. If it truly is autism, then a therapy for dealing with autism is obviously what's needed. If it isn't autism, it needs to be something else. The problem for my daughter was that the therapies for dealing with autism didn't work because she didn't have autism. But there was nothing else available. And nowadays any child with a development problem is almost automatically put "on the spectrum". This is not to say that autistic therapies don't work. Mostly they do. But what if the child isn't autistic, and would be better served by a different technique? No-one is looking at that scenario, and no-one will as long as we continue to lump all these childhood disorders under the umbrella of "the spectrum".

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.

Having a developmental delay that the specialists can't "put their finger on" was exactly the case with my daughter. And I wasn't satisfied with a "we're not quite sure what it is" answer. And it was only by luck that I found the real answer to her problems.

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.

Unfortunately not true. I know a couple who have a truly autistic boy. He's eight years old now. He's had therapy but he still hardly talks, and can't look after himself in the slightest. When his parents are no longer around, he will have to go into full-time care. And his parents know it.

Two years ago my daughter was in such a state that the pediatricians told me that the outlook for her was bleak. There was no way on earth she could look after herself. Now I come downstairs and find she's set the table for tea and has given her younger sister and the baby some milk and cookies.

If I'd accepted the PDD diagnosis, she would have received therapy which would have helped to some extent, no doubt. But nowhere near as much as the "therapy" we did get for her. For her, therapy for PDD would have been like going to ballet class. My daughter needed to be in the Marines.

I'm just glad she'll be OK when I'm no longer around.

I think we've done the "which therapy is best" thing to death. It's a non-question for me, because now my daughter doesn't need help any more, except to improve her academic performance. In all other areas, she's fine. She talks, laughs, plays doctors and nurses, has friends and can look after herself.

The "which therapy is best" is for those rare cases who truly have autism. I'm interested in children who don't have autism, but are being sucked into the vortex of "the spectrum" because there's nothing else for them.

Starting next blog... something completely different.


Read more!

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.

Read more!

Autism for everyone!

I received a comment on my last blog from a lady called Mellisa H... You can read it below. Melissa, who has an autistic child herself, very kindly told me that she was happy for me to have found the answers to my daughter's problems (ie, the cure for autism that never was) and that my daughter was able to integrate into mainstream school.

She then went on to say

"...the label "autism" isn't an awful thing. In fact, most adults who have autism will get pretty heated if you discuss the word "cured" with them. They don't want to be cured of their uniqueness. As for our family, I don't really care what the school system and doctors decide to call it: all I care about is that the label gets my son the therapies and gives him the tools he needs in order to develop neurotypically and "catch up", if you will, with peers his age. "

Now, obviously I can't comment on Mellisa's son's condition, and neither would I want to. But her comment does bring up a few interesting points about the autism epidemic, and how the popular notion of what constitutes "autism" has become far removed from the traditional diagnosis. Unfortunately, this popular notion has been accepted, and in many cases, promulgated by the medical profession itself.

Here's why.

Until not very long ago, say 20 years or so, autism was seen as an absolutely crippling mental disease. For a child to be diagnosed as autistic the child had to be totally or almost-totally non-verbal, would have violent temper tantrums, engage in repetitive stereotypical behavior (lining things in rows, turning light switches on and off etc), would need a highly organized routine in order to function and have a complete lack of understanding as to the social rules most people take for granted. In a word, these kids were "in their own world". Many of them had to be institutionalized.

This was the "classic autism" noticed by Kanner. And according to the DSM-IV criteria, autism still is a crippling disease. For a child to be diagnosed as truly autistic they have to exhibit all the symptoms in an intensity beyond what is normal.

But what happened was that the medical establishment began to be faced with thousands (now hundreds of thouands of kids) who didn't fit the typical "Kanner" framework. Kids with hyperactivity, kids with speech problems, kids with social problems of all sorts. So what to call them? It couldn't be autism, because these kids didn't have all the symptoms. The answer was to simply make autism a "spectrum" of disorders... a spectrum now becoming so wide that any child with even the slightest communication problem can be diagnosed.

Not even all the symptoms have to be present, and some members of the medical establishment have used false logic (or simple bad reasoning) to make relationships where none exist. For instance, a symptom of autism is delay in beginning to talk. So therefore all children who are late talkers are "on the spectrum". (I've even heard of children being diagnosed as "borderline autistic", and if anyone can tell me what that means, please write and let me know. Perhaps, "The kid isn't quite autistic enough to fit on even the most mild part of the spectrum, but he's almost there...")

And so now we have autistic people who will argue against finding a cure for autism because it robs them of their "uniqueness". Autistic people having the mental capacity to argue. Autistic people who are arguing about what it means to be autistic with the doctors who diagnosed them as being autistic in the first place. We even have autistic people who are aware of their condition, can reason with a beauty of logic and depth that would put most people to shame, and even have a talent for satire that makes some of the highest-paid Hollywood comedy screenwriters look like amateurs. (Satire! I'm not joking.)

What this does is belittle the word autism and turns it into a meaningless diagnosis, one that could be applied to almost anybody. As a doctor posting on the BMJ forum in the UK once said: "We're all on the autistic spectrum now."

But what's worse is this.

As more and more children are pushed onto the spectrum, parents are being forced to accept therapy which, though perhaps beneficial in some ways, is not actually dealing with the root of the problem. And it also means that a search for the real root of these childhood disorders is pushed aside. Autism is incurable, and any therapy doesn't even attempt to make the child "normal" (I'm using straight language here rather than the verbose and silly expression with the acroynm NT). What autism therapy does is give the child a series of "coping mechanisms". Nothing more.

But what if many of these kids aren't autistic? What if there is a therapy that really does "cure" them of the development problem.

My daughter showed all the symptoms of autism and was cured. That's because she didn't have autism.

And the man who helped "cure" her has some interesting ideas about child development and the real cause of the rapid rise in so-called autism. And ADD. And ADHD. And ODD. And any alphabet soup of disorders the pediatricians invent.

It's an idea which won't go well with a lot of people's beliefs. Certainly not with the medical establishment. But the good old official medical establishment tried to get my daughter to speak for three years with their "autism" therapy and it was about as much use as a pen with no ink. In fact you could diagnose the lot of them as "borderline useless".

Anyhow, this guy (who has no official medical training whatsoever) had my daughter talking in three months. And his system has cured some kids who were even worse than my daughter. And she was bad... bad... bad... bad.

(In fact she's still "bad", but "bad" in the right way... if you know what I mean..."

But that's all for the next blog.

Peace

Steve

PS
Well-reasoned comments, flames, pediatricians spitting feathers most welcome...

PPS
Starting from this Thursday I might not be able to blog for a few days. I'm taking my "autistic" daughter to see her grandparents and they are, to put it mildly, "non-technical people". In other words there ain't a computer in the place, let alone an internet connection. Still, I might mosey on up to my sister's place, where there is a computer, and blog from there.

But aren't my little girl's granny and grandpa going to be surprised! Last time they saw the little one she was practically non-verbal and walked about in circles. Now she doesn't shut up and makes a point of doing her homework!

Read more!

Saturday, February 18, 2006

Autism and not seeing the truth

It's amazing how far pediatricians will go in order to put a label on a child, and how easy a possibility is to ignore, no matter how obvious.

A case in point is a story I heard from a lady called Jannalou, who lives in Calgary, Canada, and posted the story as a comment on this blog. Jannalou works part time as an autism support worker, and the story concerns a young boy who she worked with after he was "tentatively" diagnosed as autistic.

Let me tell you, in my experience a "tentative" diagnosis of autism means that the medics don't really know what the problem is or, even worse, can't be bothered to find out. It's much easier to grab a copy of the latest (and ever-growing) list of childhood disorders, pull out a few choice acronyms and sprinkle them all over the child's medical record. And, in my experience, once a pediatrician makes the diagnosis, it can be extremely difficult to have it overturned. (For my story see HERE)

Anyway, on with this story...

The boy was "tentatively" diagnosed as autistic. Which meant he may well have been on the slippery slope down to a life of autism programs, behavioral modification therapy, and growing up with people believing he was afflicted with an incurable neurological disorder.

Luckily for this young boy, his mother wasn't the type to believe someone's opinion just because that person wears a white coat and possesses a library of books filled with important-sounding words. So she badgered the hospital until they carried out a simple test on the boy. A test so simple, it boggles the mind to think why no pediatrician thought of it before.

And so the test was carried out.

And guess what?

The boy was in desperate need of...

Ritalin?

No.

Behavioral therapy?

No.

He was in desperate need of... wait for it... a pair of... spectacles!

That's it.

He had bad sight.

Once he had the glasses, his behavior improved.

So if it hadn't been for his mother's persistence, this boy's life may well have been ruined. And all for the lack of a pair of glasses. Or SLSS (Severe Lacking Spectacle Syndrome) as the soon-to-be-invented disorder will no doubt be named.

I ask you... A pair of spectacles.

Where's a bit of common sense when you need it?

PS
If anyone else has any stories of madcap autism-obsessed pediatricians being proved wrong, post them as comment and I'll post the best of them in a future blog.

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Friday, February 17, 2006

Autism and the needle

The debate over whether the huge increase in the incidence of autism is due to the measles, mumps and rubella vaccine has "caught fire" again, according to a report I just read on United Press International. This is despite efforts by the UK government to stamp it out.

Apparently the one-time chief scientific officer at the department of health, Dr. Peter Fletcher, has accused the government of being complacent about the risks of the MMR jab. "There are very powerful people in positions of great authority in Britain and elsewhere," he said. "who have staked their reputations and careers on the safety of MMR and they are willing to do almost anything to protect themselves."

In turn, the government has ignored the criticism, and maintains that the three-in-one jab is safe and is the best way to immunise children against the diseases.

This is hardly surprising, but the story has poignancy for myself, because a few months after having the MMR jab my own daughter began to exhibit signs of autism. Language dried up, temper tantrums began, and she essentially drifted off into her "own world." It was the classic symptoms of regressive autism, when a child develops normally until about 18 months old but then stops developing and essentially "goes backwards."

By the age of three, language had disappeared completely and she was walking around in circles, flapping her hands and making unintelligible noises. The diagnosis by the pediatricians and child development specialists (I think she saw about seven in total) was universal. Highly autistic, and would need specialist treatment, maybe for the rest of her life.

Needless to say, we knew that the MMR jab was to blame. The evidence was compelling. She had developed normally and was happy, sociable and was beginning to string sentences together. Then she had the jab and the life seemed to be sucked out of her.

And needless to say, when it came time for our second daughter to have the jab, we said thanks, but no thanks. We discovered that in the UK it is possible to have the jabs seperately--if you pay to have them done privately. And that's what we did. And our second daughter continued to develop normally.

Not that it helped our first daughter. It was too late.

Or so we thought.

Because despite my daughters obvious problems (no language, temper tantrums, walking about in circles), we knew that she understood at least some of what was said to her. And the memory of how she had been, that happy, sociable, funny little girl, was still too strong to let it the "previous daughter" disappear as though a candle had been suddenly snuffed out. We weren't going to give up. We wanted answers.

Why had she regressed like this? Why had she turned into this mute, unhappy figure? But more importantly, why did she still understand some of what was said to her, but yet didn't talk and exhibited all these strange behaviors? Something was wrong with the diagnosis, and I questioned the health officials mercilessly, and told them that the problem with my daughter must be something else.

And the health professionals treated my ideas with disdain, even to the point of outright aggression. How could I know my daughter better than they did?

Well, luckily for my daughter, I did know her better.

It was a struggle, and a lot of luck came into play. But we found a man who agreed that the problem was something else. And he knew how to cure it.

We followed his advice and my daughter came back to us. Slowly at first, but with ever-rapid development. Now we have her back. She's a happy little girl again, who loves to play with her younger sister and communicates her very strong will with often hilarious speech.

What does this have to do with the MMR jab? Well, if the jab is truly responsible for the rise in autism, it's a medical scandal of immense proportions.

But what if these children are suffering from something else which is neither autism, nor is caused by the jab?

The question may not be whether the vaccine is safe, but whether the doctors, scientists and other health professionals are looking completely the wrong way.

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Wednesday, February 15, 2006

Victory over "autism"

This blog has been a long time coming and there's a lot to say. But I'll keep this first post short.

This is the story of how my daughter was diagnosed as autistic and how she was cured. That's right. She was cured of a disorder which everyone knows is incurable.

Or rather she was cured of something else that looked so much like real autism that it fooled some of the most foremost pediatricians in the world. In their words, my daughter had "extreme communication problems on the autistic spectrum". If she was ever to learn anything, they said, she would need specialist education for a long time.

That was just two years ago. At that time she was five years old. She spoke about 30 words, made hardly any eye contact, and couldn't read, write, hold a pencil or do even the most rudimentary math problem. And neither did she follow instructions. Her case was hopeless. Highly autistic. Or so it seemed.

Because in just over two months from now, she'll start school, and will join a class of about thirty kids and undertake a normal education. She talks, makes eye contact, can write (she writes her own daily diary), and does math. In fact she's a devil for studying. She also looks after her younger sister and will soon begin to study ballet.

What brought about this extraordinary transformation?

Luck.

That's what.

Luck which brought her into contact with a man who knew what her real problem was... and who knew how to cure it with techniques so simple they're almost breathtaking.

No drugs, no medication, no "learning to talk through pictures", or any other of the usual ways of dealing with "autism". Because what my daughter suffered from looked like autism, acted like autism, and to all intents and purposes was autism. And that's why it fooled the "experts". But it wasn't autism, because it could be cured.

I'll end this first blog with something for my readers to think about.

If my daughter could be diagnosed as autistic by several highly-trained pediatricians, but yet actually be suffering from something else, something that is curable... how many other children are there out there, diagnosed as autistic, and being shunted into autism treatment programs when they aren't autistic at all?

How many other children are missing the chance to be cured?

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