I was recently interviewed for an editorial in the latest issue of Nature Neuroscience. The editorial is called:
Silencing debate over autism
Despite the lack of scientific evidence that childhood vaccines cause autism, extreme tactics used by those convinced that this hypothesis is correct have been increasingly successful in influencing public opinion and legislation.
In this editorial I am quoted as saying:
Kevin Leitch reports, “I have personally been told that because I am not chelating my daughter, I am a child abuser. That I am a murderer. I have had threats of violence made against me, and a few people have even sent personal hate mail to my seven-year-old autistic daughter.”
I know of four scientists whom I have exchanged emails with who have been targeted by this same extreme group and who had:
1) Threats of property damage made against their homes and property
2) Threats of physical violence made against them
3) Been the victims of concerted email and telephone harassment campaigns to the point where security services have had to get involved
4) Had their associations with entities that merely sound like Pharma organisations misrepresented
5) Been accused, on no basis at all, of fraud
These scientists are staggered that merely performing accurate science has led them to having to (in three cases I know of) inform Campus Police of the places they work at of their movements in order to remain safe.
I’ve also spoken with several paediatricians and doctors in general practice who report belligerence and fury when the doctor tells the parent in question that the ‘test’ the parent has had performed by Doctors Data or some quack lab – at no small cost – is worthless and means nothing. One GP told me xe felt intimidated to the point of pressing the panic button under xyr desk.
How can this happen? In 2007, when our knowledge of science is greater than ever, how can this happen?
First, it happens because these parents are desperate. Or so they believe. Because they have not given themselves the opportunity of moving beyond the ‘grief’ stage and into a practical acceptance, they are still deep in denial and anger. They are lashing out and blaming all and sundry. This is sad. Its a shame but it still utterly unacceptable. These are (apparently) grown adults.
Secondly, it happens because the wider scientific community _lets_ it happen.
As the Nature editorial implies, the scientific community is largely unaware of this type of person. To them, the question was settled long ago and they have moved on. The few researchers still valiantly plugging away with new science regarding the alleged ‘epidemic’ and the role (or lack thereof) of vaccines in autism aetiology, the many GP’s still faced with the increasingly violent response to vaccination and the many mainstream autism parents who really would like science to move on to educational research and the media to move on to pushing for more adult programs are left to try and wrest the agenda away from these extremists.
If you are a scientist reading this or you know of a scientist who operates within the fields of toxicology or autism then please – please become louder.
The scientists on the Hub do wonderful work refuting the poor science of the Geier’s etc but we need to have the big name scientists in their fields commenting publicly on the poor science like the recent Geier paper.
For the scientists still trying to do studies that touch on the autism/vaccine hypothesis, the issue hasn’t gone away. For the millions of autism parents around the world who find themselves having to compete for funding with a set of threatening bullies the issue hasn’t gone away. For GP’s and nurses who have to listen to the threats and screaming fits the issue hasn’t gone away.
The only way to defeat a bully is to stand up to him. I plead with the larger scientific community to come back to the fray where we can be united and face down these enemies of science and autism.
Elsewhere
1) Autism Diva
2) Orac
3) Steven Novella
Left Brain Right Brain 
Maria, it is not known if ASD individuals are more or less varied in their physiology than NTs. Presumably if some have gut problems and some don’t, and that ratio is different for ASDs vs NTs, that does not argue they are less complex, rather that they are more complex.
Some historical figures were no doubt on the ASD spectrum. Newton for example. What xenobiotic chemicals was he exposed to? Not very many. How many biotic chemicals was he exposed to? Zillions.
The complexity of a problem grows exponentially with the number of variables that are important. Once you start looking at interactions between variables the complexity becomes enormous.
n…..n2…..n!
1…..1 ….. 1
2…..4 ….. 2
3…..9 ….. 6
5…..25 ….. 120
10…..100 …..3.6x10E6
15…..225 …..1.3x10E12
20…..400 ….. 2.4x10E18
50…..2500….. 3.0x10E64
100…..10E4 …..9.3x10E157
It is thought there are something like ~100 genes that might be important in ASDs. Looking exhaustively at the interactions between 100 genes (100!) would take more molecules than exist in the known universe. No doubt there is lots of non-gene stuff going on too via non-coding DNA, via DNA methylation, via other epigenetic stuff.
Even if there are only 10 or 20 things that are important finding them is the apocryphal needle in a hay stack, except we don’t know what the needle looks like or how big the hay stack is, or how many needles there are. There isn’t an animal model for ASDs, so testing and experiments can only be done on humans.
It is going to be like all things in science, until we know the answer, we won’t know how difficult it will be to find it.
You say
In other words, this is not my argument. It’s yours.
The problem is that this is your interpretation of my argument, not the argument I wanted to present.
You said
It’s the only logical argument that I can pull from the statements you make.
I apologize by not being logical to you or enough clear, bur for me they are logical and valid, although open to be clarified, of course.
You said
Unfortunately, though logical, it’s false because it represents a bias.
No, it all depends on the internal attitude with you are reading my words. I am writing thinking in science based on ethics of the right to the best medical care possible, you are reading thinking in your personal view of human rights of autistic people. They are not incompatible, but without the needed clarification of the basis of my position, it is the perfect situation for misunderstanding.
For example. I could read your words as sarcastic but I am trying to understand why you understood my words they way you did.
You said
Before we can determine how autistics ‘differ’ from, neurotypicals in the ways you want examined, we must first determine what the baseline for neurotypicals is then that autistics will vary.
There are a lot of research potentially useful in many areas of my interest that I could mention to you about.
You said
I could be wrong.
Thank you for this- I suppose you are refering to your own ideas-, me too ( could be wrong). My premise is ALL of us could be wrong about autism, but this does not preclude my intention of giving the best to my child in terms of health, that is also a human right of him, and my best effort to understand what is going on with the tools available today.
“I have never said that. What I said is there are research avenues that could give answers about the importance/relevance of the CMP in autism- and how these CMP impact autistic people life´s quality.
And this is a world of difference.â€
You said
I don’t know what things are like for autistics where you live, but if you think that referring, as I did, to the rights of other groups (women in this case) has no place in the conversation, then we have a serious breakdown in communication.
The problem is that for me the consideration of autstics as full human beings, that deserve respect is in advance and for sure. It is basic ethics for me. I do not understand why you understood my words as an attempt to deny human rights of autistics. My point is that the differences between men and women are not similar for me to the differences between autistics and non-autistics. But I was thinking in biological basis.
You said
What you want investigated is important,
Thank you
but it is not and cannot be, the primary focus of neurodiversity. First, autistics must be accepted as human. Second, we must be accepted as people. (two very different consepts) Last, we must be expected and allowed to participate in decisions made about us, including research decisions.
You have, in advance, my agreement with the three prompts. What I have tried to say once and again, that we, parents of autistic children that have a different perspective because of our anecdotical evidence. ALSO have a place in the discussion and ALSO should be heard with respect, without the consideration in advance as the enemies or in confrontation with your two first prompts. There would not be an international movement for autistic human rights without parents of autistics of all ages BUT we (ALL) should hear , learn and clarify. -When possible sometimes I understand is not possible with some extreme positions-to find a common place; what we agree what we disagree and how we can understand the basis of disagreement to modulate or even modify our positions if demonstrated to be wrong in an atmosphere when exchange of ideas were possible.
You said
Maybe, where you are, autistics are considered to be fully human and real people. I have never heard of such a paradise.
And I assure you that in my country-Argentina- things are far far away of a paradise for autistics or disabled people in general. But it is the one per one presentation of the dignity and defense of our children´s rights, the heart of our advocacy as parents of autistic children, how we fight for them- for now until THEY fight for their rights, and their rights to the better health care they can have, the better opportunities for education, the better opportunities to full development what , at least for me , will do a difference. The change begins one per one parent, one per one family, at school, at home with the rest of the family and so on.
You said about autistic human rights
Seeking answers cannot be as important as figuring out the right questions to ask.
I can say the same in terms of science, all science in autism, from neurocognition to metabolism,
You said
If you want to argue science, I will get out of your way your arguments of science get in the way of my arguments of equality
.
They are not incompatible for me. The equality implies for me the right to the better science available to improve life´s quality
You said
Because science has been used for a very long time to prove that people are subhuman, and I’m not going to let anyone ‘research’ me into being something that doesn’t have the right to exist.
Why every time that this kind of discussion is presented the eugenics discussion is put on the table? I came from a family where we would accept our children whatever the problem they could have. I came from a family where to be a parent and to conceive a child is considered a responsibility, a gift and a blessing. Eugenics has not/is not/will not be part of any kind of thinking I can have about autism or any other disability.I have not disagreement with you in your statement.
Science is a tool. It all depends on the ethics of those who plan it and those who use it.
Spanish is my first language, but you do not need to learn it. Only, if you are interested , you can ask for clarification and I will do my best. I can say that I should have to do my best effort to present clearly in your language what I try to say. I assure you I do my best. Please be patient with me.
Hi daedalus
Planing the research as you presented is extremely complex and I agree with you. As B. Cubbins presented, the full genome sequencing would be very much useful. However, I do not consider that this kind of effort are the most productive venues of research.
For example, about the problems with virus/toxoids. There is currently an approach to analyze the polymorphims or genetic links that can be present for altered answers to vaccines or wild infections-by the CDC. Several researchers presented the importance of looking at the Human Leukocyte Antigen polymorphism and how different polymorphisms can affect hypo or hyperanswers of the immune system. Dr Paul Ashwood presented recently in AWAREs that they found that autistic children are hypo or hyper responsive immunologically. I consider this an interesting- and potentially important- avenue of research.
The Th1/Th2 shift would be other area and the presentaion of allergies and other immmunological reactions in ASD , also.
Looking at the present status of research and not to the most controversial, I continue thinking that the possibility of exploring ethically promising avenues of research in terms of metabolic/nutritional/biochemical aspects in Autism is important. What is lacking, IMHO is the concerted multidisciplanary effort to construct reasonable hypothesis beyond the genetics and the planing of high level science ( from the analytical/testing to the discussion that should be multidisciplinary) to present the points.
I agree that Hilary’s comments were insensitive, but genocidal? Come on, we just need to sensitize politicians to the fact that there are talking about a group of people and not just a ‘disease’ to be erradicated. I reject the idea that curing symptoms is tantamount to erradicating autistics. I agree that prenatal testing and subsequent possible abortions is indeed disturbing, but the technology of this type of testing will not outpace to upcoming understanding of who comprises this 1% of the population.
I know I’m an idealist, but I can’t imagine the perpetuation of the myth that autism=horror will stand the test of time. I agree that it’s going to be a tough road over the next 5 years, but remember, 1% becomes 3% when you add parents; becomes 6% when you add relatives; becomes 12% when you add people touched by autism.
Maria,
You simply don’t appreciate how complicated physiology is.
As “useful” as the complete human genome is, no one knows what the vast majority, more than 95% does. Is it just random? Probably not because some of it is conserved since before land animals diverged from fish. Those bits have to be pretty important if they have remained essentially unchanged for hundreds of million of years. What do they do? Excellent question, there are lots of people who would love to know the answer. They probably do lots of things, but what, when, under what circumstances is going to be difficult to figure out.
We know that genetics isn’t the whole answer because there are identical twins that are discordent for ASDs. So environment has to be important. But which environment? In utero? Probably, but identical twins share the same womb, sometimes they share the same placenta (rarely). Twins that share the same placenta are sometimes discordent for major neurological morphological abnormalities. If they share the same genes,, and the same placenta, what in their environment makes them so “different”?
There could be thousands of “promising” hypotheses, and they could all be wrong. Some them might be right in some cases and wrong in others.
Many researchers simply don’t appreciate how complicated physiology is. When the honey bee genome was sequenced, the project leader (with 174 collaborators) was asked “What was the biggest surprise about the bee’s genome?”
His answer? “That we did not come up with breakthroughs in understanding social behaviour of the bee.”
http://www.nature.com/nature/journal/v443/n7114/full/7114xiiib.html
Hi dedalus
I do realize about the complications of physiology. This is why I have/am/will request as potentially useful for more properly designed research based on properly designed questions in ASD.
It isn’t science, I know, but I saw a book of photos on Amazon titled “All Cats Have Aspergers,” by Kathy Hoopmann.
MarÃa,
Thank you for your response and for not assuming too much of a sarcastic tone. I will admit that there was some there, but not very much, and in spite of what was there, I really am trying to understand your position.
If I understand, it seems that you are commenting to many neurodiversity blogs and are worried that the ideas you think are important are dismissed when presented by parents. You feel that the conversation should be respectful and go both directions.
You might be surprised, but I agree.
Sadly, what you think you are seeing is not the case, and you can tell that because the more you talk, the more we are willing to listen, unlike those others who present similar ideas.
The difference is that you approach us with respect and acceptance. These other people, that you may only be seeing as parents with unpopular ideas, are actually bigots, regardless of how many autistics they have in their lives.
It is not the individual ideas they propose that we (always) reject by what seems to be reflex. It’s their refusal to accept us as people who have a right to be heard.
Many of these people are not doing the ‘one on one’ advocacy you talk about. They are involved with influential organizations that get a lot of attention and are directing the course of the autism discussion in the world at large.
These organizations, by design or practice, routinely exclude autistics from the discussion. Certainly, they do not invite autistics to participate in the discussion as equals.
The voice of parents, outside of neurodiversity conversations, is the only voice of autism that most people will hear, and it’s usually not a pleasant voice that talks about the potential of autistics, the value of autistics, and the need to involve autistics in determining their own fate.
It’s a voice that has said, and continues to say, that we are a plague, we are “train wrecks”, and it is okay to express a desire to see us die (specifically as individuals, not just ‘die out’ as a group).
In this environment, productive conversation that actually achieves anything, unless it is exclusively the conversation about autistic rights and representation, is nearly impossible.
When the discussion centers on efforts to “prevent and cure anything along the autism spectrum”* and those of us who are autistic consider that as personally offensive as “prevent and cure anything that is at all female”, the important conversation becomes one of survival, for ourselves, for your child(ren), and for our children.
The distress that you feel when we do not seem to be listening to you, possibly because you feel we have some power in this, is the distress we feel every day because our voices are rejected by non-autistic organization who claim to be our voice and claim to speak for us; organizations that, in some cases, claim we as autistic adults do not exist, are not fully human, or do not qualify as adults. These are all real arguments that I have had used against me just in the past week.
These ideas may be alien to you. You may not understand how a parent can hate their child that much. I can’t understand it, either, and I wish I didn’t know it was true.
Some day, I hope we have an environment where the ideas you mention can get the consideration they deserve by scientists with the knowledge and expertise to judge their merits, but I am not directing the conversation. No autistic is, in spite of what you read on neurodiversity sites.
Sites like this one are safer places for us to speak out than the world at large, and yes, that means we can react very strongly when we see someone who doesn’t seem to take the threats to our existence seriously.
…I’m having trouble finding a good way to end this comment, so I’ll just end it.
Spanish is already on my list, and being a Texan and citizen of the USA, I apologize for not already speaking it fluently.
(*The first quote is from Hillary Clinton’s speech.)
http://www.youtube.com/watch?v=hzhtCGPc26c
livsparents,
Have you seen the speech?
http://www.youtube.com/watch?v=hzhtCGPc26c
You may disagree that it is genocide, but the United Nations’ Convention on the Prevention and Punishment of the Crime of Genocide defines genocide, in part, as:
Maybe you disagree that autistics are worthy of this protection because we do not qualify as “a national, ethnical, racial or religious group, as such.” If so, I have nothing productive to say to you.
Otherwise, I’ll address another issue you mention:
The current incidence rate for Down’s Syndrome is 1 in 800 births. However, thanks to prenatal testing, conservative estimates of the termination of DS positive fetuses are placed at 80%. Remembering that these are conservative estimates, and discounting the possibility of false positives, this would put the, non-terminated, DS incidence rate at 1 in 160.
Does that sound like a somewhat familiar number to you?
The estimates of other prenatal tests that result in termination, such as cystic fibrosis, are even higher.
In my opinion, the technology has already outpaced the understanding, lacking only a test considered reliable before some or all of us could be ‘detected’ prenatally, with very predictable results.
I don’t know if you’re an idealist or not. The genetic puzzle of autistic predisposition may not be solved in our lifetimes, but looking at my family, I know that it will be solved while autistic family members of mine still live.
You may be right, though, that the autism=horror myth will be discarded, but I submit that it won’t make any difference.
The idea that Down’s Syndrome is a horror isn’t as prevalent as it once was, but giving brith to a child with Down’s Syndrome still is.
Zaecus,
I agree wholeheartedly with your comment regarding organizations that color autism in the worst possible light. These groups may call themselves “advocates†but in reality they are comprised of people who want to portray themselves as heroic parents who have suffered a gross injustice. Their writings focus upon themselves, without concern for the people they write about. How any parent can call their child a “train wreck†is completely beyond me. These “advocates†dehumanize their own children. They are incapable of love; hatred has filled their existence.
Their rants and language have driven me to tears and rage. In my opinion, that attitude must be exposed and refuted before there can be acceptance in any meaningful fashion.
OK, every comment I thought up confirmed that I am a disabilist (or at least prejudabilist!). Now I realize I have something ELSE to fight for in the future, but…what the heck! What else am I going to do with the next 40 years of my life anyway? I had nothing planned anyway…count me in…
The reason that the “advocates” demonize people with ASDs, is that it makes the placebos they use as treatment more effective. The placebo effect is mediated by NO. Stress, anger and hatred are states of low NO. If you induce stress, anger and hatred, that will make symptoms characterized by low NO worse, but will make any placebo more effective at reversing those symptoms.
This is the reason that hazing is done as part of the bonding ritual in turning young men into soldiers. The stress of hazing lowers NO, the bonding that occurs afterward is mediated by oxytocin via NO.
Cults do the same thing. This is why the “mercury causes autism” cult has been so effective. Induce stress by telling parents that their children are “train wrecks”, then relieve that stress by telling them that chelation will cure all and make their children into little curebie NT Stepford children.
Calling your child a “train wreck” is bullying plain and simple. It is a common tactic of NTs (though some don’t realize it), to lower NO levels and so affect the person they are bullying.
It is an attempt to invoke Stockholm syndrome and capture bonding.
Hi Zaecus
I want to thank you for the time you gave me to present your ideas. I appreciate very much your consideration to me- and your predisposition to explain .
I would want to present you also why I think that way I do and how I perceive the view of autism in my country, considering I live 15000km away USA; in a country where there is no autism organizations such as in USA or an organized autistic adults advocacy for human rights of autistics such as neurodiversity advocates.
Also , I have some comments related to your ideas on the prenatal testing.
However, I do not want to disturb to you anyway presenting situations that
a) you can be not interested about
b)you can consider that are out of order in the discussion.
I understand that the perception of the situation in USA for an autistic adult is such as you perceive/told, especially related to the organizations who supposedly advocates for autistics. However, I see a situation of action-reaction, where it is considered that everything that is presented on the table to discuss is perceived as harmful, or analyzed as if it is marked with prejudice- even with the assignation of being inconscious or ignorant of the potential harm. This status of the mind with many autistic adults and advocates has – even when understable because of their perceptions and how many many times they have been/are misconsidered by doctors/researchers/some parents/some organizations-produce a situation when everything is seen as wrong or secondary or potentially harmful to the main point, that is presented as the fight for survival. I am trying to explain my perception , but I do not minimize for one second the importance of what you posted. Please consider this.
However, in my country, the perception of the parent of an autistic child- recently diagnosed- is very much affected by how the mainstreamed medical community sees autism, because there is no such organizations neither autistic adults advocacy. Imagine that still it is considered by some as an attachment disorder of phsycological basis. The situation is IMHO somehow worse because the topic is not discussed and accepted as it is presented, I would say 99 % of the time.
My main problem is that for me the struggle for equality includes the struggle for the proper medical care; it is part of the same; complementary if you want, but part of the same. Life quality would be more affected by the proper medical care- at least it was in my son´s case- than in the accomodation, because there is no accomodation possible for an untreated medical problem that is producing pain , for example, or it is hindering the proper development- such as my son demonstrated- more than the proper medical care that is needed. That the standards of medical care should be better (MUCH MUHC) and improved and excellent, I agree with you. That they are not many times (majority in my experience) and potentially very dangerous “treatments for autism†are proposed – and worse, used- I agree with you.. They are not “treatments for autismâ€; they are “ treatments for concomitant medical problems to an autism diagnosis†and with the situation of today they can be from very good to a disaster (IMO). I consider that the “proper treatments for concomitant medical problems to an autism diagnosis†are almost in the same line than the struggle for equality and proper consideration ( a personal perception based on experience) and this struggle must be done at school, with doctors, with researchers, with politics, with other parents and with society in general- and each aspect needs different approaches because all autistics are different and all fields require different approaches.
Please let me know if you are interested about my proposal. Thank you in advance.
Maria,
I’ve got little time, right now, so I’ll respond to the rest of your comment tonight, but I want to be sure I understand something.
There is no social or political discussion at all on autism/autistics in Argentina?
Hi Zaecus
It is not an easy question because our reality is different than yours.
From what I perceive (I live 700 km away Buenos Aires, where is the main focus of political issues related to disability in general)only there are
a-efforts of parents in educational levels through an organization of parents who promote the application of educational tools to help autistics learn (using TEACH for example) and therapeutics related to sensorial, pshychiatric and phonoaudiological approach to help a better interaction with the environment. There are one school in my city from this organization my son attends, besides the non-autistics school, that is only for autistics and it is requisite to have an ASD diagnosis to attend there.
b-efforts to inclusion in schools ( public and private). There are laws who try to guarantee the inclusion through “integration”, that is the combined effort of an special school with special teachers in special education(public or private)with the school for non-autistics ( public or private). In general this includes the help of a team of professionals in the school with a team of professionals with specialization in autism (special teachers, phonoaudiology, pshychiatrist, integration teacher)
c-Institutes or Terapeutic groups (OT, ST,ABA,Floortime) mainly in Buenos aires who try to integrate different therapies addressing mainly sensorial issues, behavioral issues and educational issues. However, there are also many offers in my city about ST, OT and Pshychiatry – that are recommended in front of a diagnosis. You can find also different approaches who focus on the symptomatology- including psycopedagogy/pshycology.
d- Doctors in general, in front of behavioral problems in autistics, propose stimulants/neuroleptics as THE APPROACH. Every symptom is assigned to “the autism” or the sensorial/physicological explanation who the particular doctor believes in. Beyond the EEG, MRI , in front of an ASD diagnosis, nothing more is tested. The attitude I found was Autism =Hell; Autism =Cancer; Life´s family ended, your child is lost- with 3y 2m old; go figure.
Probably, each family has a different perception depending on the particular challenges of their child and the kind of professionals they could get-and also of what they can afford for. Biomed approach is unknown. Research such as from Dr Mottorn/Dawson/Gernsbacher is almost unknown- only some therapists know about , in my experience. Metabolic problems in autism are not tested, endocrinological problems in autism are not tested, gastrointestinal problems in autsim are not tested, immunological problems in autism are not tested,toxicological problems are not tested….and so on. Rutinely, all is assigned to “autism”.
Remember that we live in a country where the average income is 400 USS. We have a different health system than USA. Costs are much lower than yours, as you imagine.
There are no autistic adults doing advocacy that I know.The political discussion I have found are more resources for ABA -mainly- and there are a lot of efforts (political and social) for inclusion in education. Also there are efforts to have the health insurance equivalent to make them responsable financially of the what is called “Rehabilitation approaches in autism” through ST, ABA-at different kinds of application , OT and – from what I know in my city, Play therapies.
When autism is presented by neurologists/pshychiatrists, the only “accepted approach as effective as treatment”-a statement I disagree with in these terms- is ABA.
From my experience, people who have done a difference for my son were commited (VERY VERY) and knowlegdeable (VERY VERY MUCH) teachers and therapists with 15/20 years of experience of teaching autistic people, but not doctors in general, -but in particular 1/2 have been helpful (neurologists, pediatrists, gastroenterologists, etc).
Therefore, there is an important effort to inclusion of autistics (I must be fair) through laws considering disability in general but there is no discussion of the kind you say. I can not say that educationally I have been unconfortable because I have found the most exceptional group of teachers (special and non-special) My son is the first autistic child in the kinder in the history of the local school he attends. There are other autistics integrated in other schools of my city. As in everything, committed people with vocational impulse make a world of difference.
I have posted a new blog on the evolution of autism spectrum disorders. I think that they are “features”, to invoke the tool-using phenotype. When taken to an extreme ASDs cause problems, but that is true for every other evolved feature too.
MarÃa,
The situation you describe in Argentina sounds familiar and very different at the same time. My best wishes are with you in your attempts to advocate for your son and, hopefully, in having him and others advocate for themselves.
Maybe the parents group you mentioned can become an advocacy group for your country… If you think that would be productive?
Also , I have some comments related to your ideas on the prenatal testing.
As long as you can understand that I am opposed to it based on the way it is used here in the USA and other countries I have read information on (‘eliminating’ the problem by eliminating the vast majority of those who would be born different), I don’t see why we couldn’t discuss it. I don’t know if it would be out of order or not.
However, I see a situation of action-reaction, where it is considered that everything that is presented on the table to discuss is perceived as harmful, or analyzed as if it is marked with prejudice- even with the assignation of being inconscious or ignorant of the potential harm.
True. Being reactionary is definitely a risk, and it could be a problem. I do accept that you are not minimizing the importance of survival or ignoring how some things/ideas could impact that. I can’t say that the reaction is really a bad one, though. I feel it serves a useful purpose, for now.
Life quality would be more affected by the proper medical care- at least it was in my son´s case- than in the accomodation, because there is no accomodation possible for an untreated medical problem that is producing pain , for example, or it is hindering the proper development- such as my son demonstrated- more than the proper medical care that is needed.
I agree with this as well. It doesn’t feel completely acceptable, though. I think that may be because I see accommodation as being secondary already. The first need may simply be acceptance. As you say, they may be in the same line.
With acceptance of autistic people, I believe that there would be less of a problem with doctors saying that every problem is ‘just the autism’ and less dangerous medicine and pseudo-medicine being used on autistics, either to make them more ‘normal’ or because it seems more acceptable (in society in general) to do those sorts of things to someone who is considered less human.
this struggle must be done at school, with doctors, with researchers, with politics, with other parents and with society in general
It’s a struggle you shouldn’t have to make alone.
each aspect needs different approaches because all autistics are different and all fields require different approaches.
*grin*
Yes, and standardized education/medicine/society seems to really hate that. For my part, I don’t see this level of uniqueness as purely an autistic quality. Non-autistics are no more or less complex than autistics, and I think that (many? most? all?) changes beneficial to us would benefit society in general.
Thank you.
PS: There was a comment in The Politics of Autism by someone who appears to be another mother of an autistic in Argentina. I thought I would point it out to you in case you would be interested.
Hi Zaecus, Thank you very much for your answer.
I would be interested to contact the mom you mentioned- and thans again for the link.
You said
“As long as you can understand that I am opposed to it based on the way it is used here in the USA and other countries I have read information on (‘eliminating’ the problem by eliminating the vast majority of those who would be born different), I don’t see why we couldn’t discuss it. I don’t know if it would be out of order or not.”
The comment I wanted to present you is how in my country a group of parents of Down children formed a support team to help the mothers of Down newborns to relate emotionally with them, to provide insight about how is the parenting of a child with Downs. About the prenatal test, I consider that the tool itself has not moral connotation, the problem is how it is used.
If it is used for a better preparation ( emotional ) for the child and the challenges that can bring and that must be considered with care, I do not disagree, personally.
We decided with my husband not testing, amniocentesis and other prenatal testing are available in my country, because we were not going to do nothing, if the result was positive.But some couples feel that if the know before the birth they can be better prepared.
If it is used as a tool to plan an abortion, it all depends on the woman and the couple, IMO.
I consider that there are no so personal and important kind of decisions like this. All the most deep aspects of moral, ethics, even religion, and what is parenting/mothering for the parents/mother are challenged because of the fears and the probable ignorance. If you ask me, I disagree considering ME with abortion, and in this sense I do not see disagreement with you. I would never consider abortion in my personal case because of many profound personal convictions and one of them is that I am catholic.
Every person can have a different approach depending on a myriad of factors, very related (or not) to his/her education, family, religion, ethic sense, phylosophy of life and personality and finally to his/her adult position.
What do you think?