Autism/ASD on White House page - good news?

[bookwormde]

From what I read the initial money was for research only, and at the rate the government moves, from what I have been able to tell none of it has actually been allocated.

If anyone has been able to find out otherwise please post the links.

bookwormde

 

[BeckyScott]

And they wonder why we're so.... what's the word?.... Bitter? Skeptical? Peeved? "Over it"?

 

[DisDreaminMom]

OK folks, I'd like to jump in here. I get what Bookwormde is saying and I explain it thusly:

I think there are 2 kinds of autism. I think there is the severe kind, flapping, non-verbal, really "not there" kid. And in the case of Aspergers, which many of us here on this site are familliar with, we have kids that can compensate and live "productive" lives. I move that Aspergers not be called autism. Because my kid is nothing like the screaming, head banging kid that is totally unaware of what is going on. I'm not discounting that kid, I'm just saying there is a huge difference between the two.

And from being around children with fetal alcohol syndrome, premies, etc, I think there is more in common for the former autistic-type child with some of those symptoms than what the average Aspie goes through. (Flame away, but if you don't have an Aspie, then you're not really informed). I have a huge sympathy for the parents of the severely autistic child. My kid and those like him are a walk in the park compared to yours.

In this vein, I think that there might be a chemical or environmental cause for this huge wave of severely disabled children currently called "autistic" we are seeing that must be examined. Is it age of mothers, environmental, fertility drugs, vaccines, psychosomatic? This needs to be studied. Enough with the political agendas. Enough with the greed. Enough with the guilt.

But with Aspergers, I know that there are so many folks on both sides of my family that obviously (in hind sight) had many Aspie characteristics. These are brilliant people, most off the charts in intellect and achievement. All completely socially awkward, had subsequent depression, bipolar, agoraphobia, etc. Would I have given birth to my son if I knew he would be a collection of all the "quirks" and issues of the entire family? I thought long and hard about it this summer. And the short answer is "Hell YES!" Can you imagine a world with no creative genius? No violin savants? No brilliant architects, no art, no science? No Eiffel Tower and French poodle lovers?

So, yes, genetically he would test out, as would most of my family. But these people have done a lot of good for their communities and families and never hurt anyone. Is "normal" alcoholic, heavy drug using, lying, cheating, abusing, better than what my family has done? Because we don't have a history of ANY of this. Was my life hard for dealing with these people? Yes, but looking back, it was much better than that of many and full of gifts and privilege. But my genes make me less prone to "fit in"?

As the Disney movie the Incredibles says, "If everyone is special, then no one is".

While we are at it, doesn't this make you wonder about the intent of the people who want to do this type of testing? All I can think of are Nazis and eugenicists trying to homogenize humanity. I never used to be a pro-lifer, but can you imagine someone from the government telling you you must give up a child because it might be damaged?

And yeah, where are all the studies? What about breast feeding versus formula in autism, drug history of babies and mothers, dietary additives in mothers and children? OTC drug use? Why can't anyone study this? It seems like a simple thing to do, but yet you never hear anything about it.

So I'm with Becky in the Show Me state. I'll never live to see a well done examination of the causes of the head-banging autism. And why can't we just accept Aspie children for who they are? People have been living with that brain-type since the dawn of man. It's probably why we have the wheel, roofs over our heads, and much that we know today. Because these people were not satisfied with hunting and mating. They are the problem solvers and creators. Let's not take that away from them.

 

[DisneyDreams4P&B]

wow..not touching that with a 10 foot pole.

 

[bookwormde]

Well written, I break it down to this, everyone who is on the Autism spectrum has genetic variations is drawn from the same set of genes, just different combinations, I have not settled on whether there are different “levels” of a single gene, but my thoughts from the nature of genetics is no. These combinations in unto themselves create major variations on how Autism genes manifest themselves. The great variance we see in individual with Autistic genes also comes from 3 other factors.

First is other genetic characteristics such as innate cognitive ability, other genetics which effect input and output of information, and almost any genetics with how an individual is perceived and interacts with others and society in general (I use the example of physical appearance).

Second is environmental issues including everything that “happens” to use from conception to death. This include the myriad of variations which occur during fetal development, traumas that occur during our lives including the birth process, this also include long term toxicity that we “pick up” and short term effects for exposure to chemicals including those which are naturally part of food and those which have been added by modern society.

Third is the community environment that we develop and exist in throughout our lives. The level of acceptance support and accommodations in this area seem to have the greatest affect.

The difference between the classically Autistic individual, someone in the middle of the spectrum or an Aspie is governed primarily by these last 3 secondary factors, not by the base Autism genes since they seem to populate relatively evenly across the spectrum.

At this time and in the foreseeable future there is only a limited amount that can be done with the genetic makeup we were “dealt”. Environmental issues is something that we can have a major impact on as we already have with better prenatal an birthing practices, We still “contaminate” ourselves regularly, whether it is from toxins, foods or even medicines, so this is a true cost/benefit analysis that we need to do better. The big impact of this area is that it affects cognitive ability, and the ability to handle anxiety. It has a disproportionate impact on spectrum individual because of our need for higher than average cognitive ability needed to “run” our more complex wiring and to intellectually create social skills and to handle the heightened level of anxiety that comes along with the discriminatory nature of neurotypical society. The area of greatest advancement in the last 10 year had been in the third area, as we understand better the “nature” of Autism, as we reduce discrimination by improving understand, supports and accommodations in the areas of education, employments and society as whole.

While there are some risks with mapping individuals genetics, the benefits to spectrum individuals in my opinion far outweighs them, as we will have the ability to dispel the all of the myths and begin to “true science” on the variations. I am reasonably sure that almost all in the population will have some of the genes (it has been my guess that the number is between 40 and 100).

There is of course sociological risks from both sides of discrimination and associated conflict, but with our heightened sense of social justice, intelligence and inventiveness, I do not think you have to worry about us, if when the situations changes from discrimination from a source of fear and ignorance (which we can accept while we try to change it) to intent aspies more than capable of protecting ourselves and our “cousins” who are elsewhere on the spectrum.

I sometimes think that the neurtypical scientific community is afraid to map the spectrum genetics (which while a daunting task is not complicated) just as clinicians are unwilling to create a list and definitions of a comprehensive set of innate social skills.

Just a little ”light” reading for the morning.


bookwormde

 

[BeckyScott]

I think that the parents have come a long way in reaching across the aisle (so to speak), but not the scientists. There are some things we agree on. #1 we have little tolerance (seriously) for parents that stick their heads in the sand, because #2 no matter what you choose to do, you gotta start doing it early. Early intervention seems to be the one thing everyone will agree on. And you'll note, that's one thing that the politicians are claiming to emphasize too. But it's a very safe thing to emphasize.

After that, I see more acceptance among parents of the various methods used. I mean, we don't use ABA. Went to a 3-week training that used discreet trial, but it wasn't exactly ABA. But that was it. I don't think it was beneficial to Justin, because he was doing fine learning in a more traditional way. However. ABA works wonders for many children.

Going the DAN route, for whatever reason, it does work for many children, each to a different extent. Some children, it will do specific things but not other stuff. And since many of our kids also have immunity issues, allergies, asthma, etc, the DAN route may be justified for those reasons. The DAN things we've done have made enough difference that I am, to this day, pursuing more investigation of it. But for me, it's not so much about the autism anymore, it's more of a holistic approach to the other medical problems we have.

Looking at it from "celebrate neurodiversity" perspective, that is also very very valid. First off, because the research is coming so slow and our kids are growing every day, so it doesn't matter so much what happens in future generations, we need to deal with today. (that didn't come out exactly right, you know what I mean) Secondly, because there is probably some genetic component in there. Because we don't know really, historically, how prevalent autism was. I don't know if it was around during the Renaissance. Probably was. Locked away in a crazy bin or abandoned in the woods, who knows, but it probably existed, long before the MMR or teflon or baby formula or pitocin... Now something has definately happened recently to make the numbers go crazy, but I can't help but think that autism has been with us for centuries, it just wasn't diagnosed. So there has to be some sort of genetic thing going on too, in part, at least for some kids.

Part of the whole thing with the spectrum is that it is a spectrum. There isn't any reason to believe that with as many manifestations as there are, that there is a singular cause. While we talk on this board and find many many similarities, I think we could also come up with as many things that are completely different. Over-sensitive, undersensitive. Tremendous verbal skill, total lack of language. Recoils from touch, craves pressure. Completely opposite things. Some days I feel like the ASD label is a dumping ground for kids that they don't know what to do with. To be blunt, the head-bangers are under the same umbrella as Temple Grandin. Those are two pretty extreme extremes. What on Earth would make anyone think there is a singular treatment for both of those extremes?

You'd have to approach any scientific study very carefully. Let's take, for example, the whole MMR/thimerisol issue. Yes, I believe some of our kids have mercury damage. But if I was trying to do a study, I could come up with plenty of kids with autism that probably wouldn't show mercury damage. Because their "damage" is from something else, or because the autism is genetic. Therefore, drum roll, autism isn't caused by mercury. If I was trying to do a study to show it was because of refrigerator mothers, I could find enough kids to show that, because I'm sure we've all met at least one other mom with a special needs kid that is totally checked out. Some of us had c-sections but not all, some kids were breast-fed and some weren't, some kids appear to have no immunity problems at all but still have autism, some of us were young mothers and some weren't, some kids showed signs almost from birth but many Aspie kids aren't diagnosed until mid-elementary school. Any valid scientific study has got to be willing to consider all the possibilities, and it has to be done without influence. Not likely to happen.

 

[jodifla]

IMO, the "spectrum" is becoming way too broad and is a big part of the problem. People who are doing the diagnosing aren't learned or sophisticiated enough to know and understand what they are diagnosing.

There are kids identified as "autistic" at 2 who lose their diagnosis by the time they hit school. Yes, there's the theory that early intervention made the difference, but it very well could be they didn't have autism in the first place. We see it literally over and over and over again on a message board I'm on for late talkers. Schools and doctors scare parents with a label, then a couple years down the road it turns out that the autism label was completely off.

And Early Intervention can be a very, very bad thing if you are putting a late talker in ABA. Many of the older late talkers were simply homeschooled by their parents to keep an autism label or mentally retarded label off their child. And now that their kids are teens, no one would suggest either label for these kids.

Today, everybody gets lumped under the same umbrella whether they belong there or not. (there's not even a clinical definition for in the DSM for Autism Spectrum Disorder. The researchers we deal with don't even use it because they feel it's too imprecise.) A co-worker has a child with an extremely rare genetic disease -- there's a few hundred in the world. These kids are often thought of as autistic when in fact they have something quite different that requires a differential Dx and treatment.

ANd iIf you look back at past special ed numbers, it's hard not to think that there's a lot of diagnostic substitution going on. The mentally handicapped numbers have plummeted, the autistic numbers are way, way up.

The problem with this big umbrella, shoving every kid with a disability under the autism label, is that kids aren't getting individual attention/treatment.

If I have Parkinson's disease, I'm not going to get better by being treated for cancer. I need to be treated for EXACTLY the condition that I have.

 

[Schmeck]

bookwormde - your second factor, environmental 'buildup' per se - are you implying that as we get older/closer to death, and thus have had more exposure to risks and toxins, that this would cause autism? Wouldn't there be more older people being diagnosed as being on the spectrum than younger ones then? Or is the exposure only counting when we are developing?

Don't forget that cells still divide (and genes mutate) after we are done growing, and if this is a genetic trait, it must be present in the sex cells. Since a female's eggs are done being made at a very early age, I'd bet a lot of the mutated genetic transfer is from the males. You've got me thinking about some info I've got at school. If we don't have a snow day tomorrow, I'll try to dig it out and post it here. It reminds me of your thought line, and has some studies to prove your idea.

 

[TheZue]

I find the genetic testing thing really hard...if it does come to pass that there is a test available before birth I think the community is going to have to rally together to show the kids that are high functioning. Right now for fund raising and awareness there is a tendency to show the worst case scenario. I remeber driving in the car with my son when he was 2 listening to a parent group talk on the radio about autism while they were trying to get the government to fund the treatment and thinking "thank God Adam doesn't have autism"; he was diagnosed at 5. Based on my assumptions before he was diagnosed had I been told before he was born that he would be autistic I'm not sure I would have proceeded with the pregnancy...everything I thought I knew doesn't apply to him. So I am incredibly sceptical of the genetic testing and think it would largely be used as a screening test for the perfect kid.

 

[mechurchlady]

bookwormde - your second factor, environmental 'buildup' per se - are you implying that as we get older/closer to death, and thus have had more exposure to risks and toxins, that this would cause autism? Wouldn't there be more older people being diagnosed as being on the spectrum than younger ones then? Or is the exposure only counting when we are developing?

I wonder about that also. For me I feel like I am backsliding and things seem to get worse with age. Probably tired. I do know that understress and when exhausted my quirks are greatly magnified. It is possible that with time toxins and environment could cause underlying conditions to come out. I believe that autism is genetic and brain damage caused from various factors like birth trauma and fetal damage from toxins. I feel it can be one or both. If a person has a mild bit of autism then they may not show signs until under stress of life or their body polluted with toxins.

I will wait to hear what bookwormde has to say.

 

[bookwormde]

Schmeck,

Autism is a genetic variation (from parental contribution not mutation) so none of the last three item “causes” it. It is well established that children are impacted by environmental factors at a disproportionate rate to adults. Also since through our lives we continue to adapt, the manifestation from non genetic factors tend to be better “managed”. This is not to say that gross contamination could not over run an individuals adaptation skills if cognitive damage was significant enough.

Jodifa,

You seem to be using the disease model, eg. You either have it or you do not, this is not the case with Autism since all indications are that it is a neurovariation from a large number of genetic variations. It is not something that you have or do not have; this thinking is for insurance companies and ill informed clinicians. What is important is the impact on the individual and the benefits that can be derived from education support and accommodations. It is actually a very good thing if I child has indications at 2 and would not meet DSM-iv at 5or 6 since it is likely that trough self-adaption or effective supports the manifestation needed for a “diagnosis” have diminished. This does not mean that the child does not have the genetics, just that they have adapted, of course with the marginal state of the competence of the clinical community in this area it also could have been a simple miss diagnosis, but since the “treatment” often helps other NT issues, while it might be technically incorrect was likely beneficial.

Also ABA is not for speech delays (As you know I am not a big fan anyway since in many cases it is done so poorly) If there was no indication of EF/social skills differentials no competent educator or clinician would use it beyond the analytical phase.

This is why genetic mapping will be so beneficial, since clinical incompetence in this area is so rampant.

Bookwormde

 

[BeckyScott]

I'll go along with part of that, since that's sort of what happened to us.

Justin went into Early Intervention at 18 months and was officially diagnosed at 2 1/2 (it took 6 months to get an appointment) with autism, high-functioning severe range. At that point, he was getting PT OT SLT. SpEd preschool. Regular elementary classroom with pull-outs for the therapy but no modified curriculum. And his last eval they put him at PDD-NOS. He's made considerable progress. However, most of that happened with therapy only, as the DAN stuff has only been in the past year and a half. So you could say that "through self-adaption or effective supports the manifestation needed for a “diagnosis” have diminished", yes. That is apparantly exactly what happened, as I was told that his speech/language delay was not "severe" or "marked" anymore, which tossed him out of the autism DSM.

However, I do think we're one of the lucky ones. And he's clearly not out of the woods yet, as he gets older and the expectations grow, other problems pop up. He doesn't like school. (except for the fun stuff) But since we know he's not MR, and on a good day is capable, the school is lessening it's tolerance of his behavior, while at the same time expecting more from the students. Our whole world here is lived at a different pace than the rest of the world. Both boys live at their own pace, whereas I was always one of those people that was the first one at a party and believe you should always show up for stuff 10 minutes early. I do not know how this will manifest in adulthood, other than hoping they can both land jobs with flexible hours.

I do not question his initial diagnosis, the accuracy thereof, he very definately met the criteria. His signs appeared much earlier than the 15 month/ 18 month milestone, so I cannot blame the MMR. I could blame some other shot. Or blame something else entirely.

Okay, I was going to make a point. Okay. Sorry.

As far as genetic testing, I could go either way with it. As DisDreamin brought up, there is something potentially Nazi-esque about that. It depends on the motive of the powers that be, and it's pretty well-established that none of us trust those people. However, there is already testing done during pregnancy for several other things, so the idea already exists, and that protocol is established. If parents were informed, it opens up the possibility for therapy to begin even earlier than normal, a child could start therapy almost at birth, which seems like it would be beneficial. The problem is, of course, that it would be unlikely that the genetic testing would be detailed enough for you to know if you're dealing with a high-functioning Aspergers or a severe non-verbal autism. (assuming it's the same genetic markers, which hasn't been established either, maybe in fact there is some way to pinpoint it)

Even with that, the powers that be would have to decide what to do with the information. If the testing was there, and it came back positive, then what would happen? Therapy from infancy seems the first solution. But then is that child automatically exempt from vaccines, treated differently medically? Would it be mandatory that parents undergo testing to see if those markers exist before they decide to have a child? Would there be someone from Social Services showing up at my back door to make sure I'm not using Glade or teflon pans?

 

[bookwormde]

I agree that in utero testing would not be appropriate, but post birth would be since sensory issue can be significant from day 1 and if the Genetic mapping is good enough to be this detailed as to the area each gene has an input for that could be quite beneficial.

bookwormde