Well, beyond my concerns about english as my second language, I begin today my own blog. I apologize in advance for the mistakes in the written language you can find.
I have been mainly since 12 months ago learning about the debate on autism in Internet. My interest in autism in general begun near 3.5 years ago, when my son showed symptoms (at that time with 2 years). At 3 y 2 months he was diagnosed with atypical autism with prognosis of total autism. This is going to be long ( no, really?!) because I begun to write it near 6 months ago.
I feel that the polarization is very high today and in a world of black and white the greys are missed or not considered in the heat of very emotional/ angry discussion.
I wanted to know why people think the way they think, from the proponents/ defensors of the link and of the non-link vaccines-thimerosal /autism, and/or in general an environmental contribution to autism beyond genetics. I have learned a lot about autism, about people- and about me and about debate-, from many people from both sides of the discussion. I wanted also to know the opinion of autistic adults and why of the differences in their opinions in general and in particular. I wanted to know about their feelings and their thinking and to understand. Today, I have more clues about.
I must say that personally, I would not choose for my son transdermal treatments (because of efficiency-where is the proof that i.e DMPS reaches blood through skin?), intravenous treatments (because of personal safety´s concerns about my son), HBOT- because of lack of data regarding safety/efficiency. I would never consider some test/treatment aggressive or potentially dangerous under my personal/familiar analysis (lumbar punction, megadoses of vitamin A, Lupron for example or marijuana, sprays and so on). However, because of the clinical results in my son several aspects of the biomedical approach has been extremely helpful- what to search-once they were analyzed in a team of parents-us-/doctors in my country and out of my country that I found after a lot of personal concern. In the same way, I respect every parent of an autistic child, trying to do their best for their children, even when our family would never choose this or that.
Sometimes I think that the web is a wonderful place but also avoid us from the visual experience of the other, the face to face. I wonder how can many of the things that have been said, be said looking at the eyes of other parents/people. Well, I imagine always that from the other extreme of the line there is a parent/researcher/other that is a human being, just like me, just as vulnerable and strong like me, just with defects and virtues like me. It is sad that many more times than I remember I have not received the same courtesy from those thinking different, you know “ the owners of the truth”, whatever the side of this fence.
About acceptation and love, posting and blogging.
One of the most important aspects that I have considered important is how, once and again, a false dicotomy is presented as true in blogs advocating for neurodiversity. If you are doing biomedical, FOR SURE, you do not accept autism and you want a CURE and this is wrong because you are not respecting your son/daughter and his/her genetics, neurology and individual way of neurocognition. If you are prone to the ideas of neurodiversity, for sure you accept autism per se, you do not want a CURE and, for many this is right because you accept your son/daughter such as it is, because autism is a way of being. Because these ideas are related to human rights and consideration and respect of the human beings the autistic people are, they are seen as right. They are right in the phylosophical point of view for me, but not necessarily they are true in the biological nature or the neuro biochemical/metabolic/ epigenetic/structural/physiological root or they are opposite to do biomedical in my personal view. Philosophy/Ethics versus Biochemistry is not the dicotomy. ALL are important, for me- and in ethics it all depends on the details and motivations and of the heart of the actions/intentions. The dicotomy and the problem is more real and tangible and have multiple faces: required by clinical analysis vs recommended by personal theories (without clinical test or with bad ones); properly tested or not; correctly concomitant medical problem diagnosis (or not) efficient vs non efficient treatment, safe vs unsafe (in the short and long range) –respectul/non-respectful treatment of the autistic person confort or body or mind. If you do not know what to search you will never find something. If you do not find something, you will never treat anything concomitant to the ASD diagnosis. If you do not explore all the available information about treatments how can you rationally decide?
The advocacy is much more to give yourself the permission to say anything to anyone of anyway. And BTW, we-parents of ASD children – are all advocates, someway and the above applies also to ME and I have also had extreme care about my words. Because the effect is the contrary, even if the intentions are loable or important because there is no objectivity behind, even if the defense of human rights are involved.And there are a lot of advocates that unfortunately have this style. And many of the problems they talk about are real and urgent and important to consider and I agree with them in theory sometimes but I disagree with them in the style/tone or in the practice/conclussions and with the free aggresion to people thinking different (or the mockery, the sarcastic/hurting tone or the ridiculization). Whatever my experiences with them, I respect their passion and their commitment. I respect their feelings but many times the perception of the reality-beyond the science- is not the reality- and you can not stablish as if it is-especially when the tree is seen in the other´s eye and the secoya in the own is not noticed/mentioned in the name of advocacy. I respect them even if they do not respect me ( or I feel so). Their choice. However, for many of us the unfair treatment is the rule, only because we think different. And this is a point to show because if someone is advocating for autistics, my son is autistic and I want the best possible advocacy around the world. The advocacy is learned also and I have learned a lot of autistic advocates but also I can appreciate the problems and the shadows in the approach. The shift in paradigm requires from the most vocal advocates a position without criticisms as much as possible because the extreme position is seen then as paradigmatic of a group. We need the best advocacy possible, beyond the criticism as much as possible because the message is otherwise almost lost in the anger and the important is not seen many times and the paradigm is changed by another one that, because of misunderstanding, can be even worse in the perception and as wrong as the previous one.
Having the enough self-confidence to try the understanding of these positions, I will not have easy conclussions about. What about those who do not have the high-level scientific education available and the mental/emotional balance to measure the situation? Why, BTW, so much balance must be required to exchange opinions about a so emotional issue? And where is the empathy?In autism it matters what is said how is said and when is said and I would include, based on what, to who (and this is crucial)- and also where and in what context and with what balance. Not easy to talk about , I must say.
I am, proudly, doing biomedical in an individualized way with my son. I accept him with all my heart and I have never thought in a CURE but in life´s quality in his own terms. I see him as a different human being with all the respect and the consideration that every human being on the earth deserves because we are all diverse, we are all different, with different abilities. I am not poisoned in my view and I am not the spokeperson of nobody but me and him- with the support of my husband. And we have found a lot of clues about the metabolic /biochemical nature of autism symptomalogy. When we treated many of the medical conditions, many of the autistic symptomatology disappeared-surprisingly for us. And we have found so many medical conditions to treat-clinically, using local labs- that it was in the beginning very overwhelming, but not now. And, also I am so tired to be considered a spokeperson or obsessive with vaccines or mocked/ridiculized about my thinking- such as from neurodiversity are openly tired to be called “pharma shills” and “payed by pharma”-, even when nobody gave me
1- a conclusive evidence beyond doubts about that I am wrong with my approach WITH MY SON
and almost nobody gave me
2-the time to read and analyze my thinking/research/overall ideas (that probably it would be long :))
that I have reached the point of convincement of some things:
-There are many parents/adults completely completely convinced that they are right, that their ideas are the truth that simply they do not hear and are not interested about what someone thinking different has to say, even if high level science is explained. Well, perhaps you feel that I am in the other side of the same road (:)). I see my theories /ideas and acknowledge and recognize the holes but I do not understand why the other picture is presented without a puncture ( and I see holes like balls).I assure you that I am more than prone to “sit around a table to hear” but this does not imply to accept that all has been done and that published epi is the truth, to accept any known insult or to explain ad-infinitum that for me autism is not Hg poisoning; that I am not antivaccines or to accept distorted opinions about my son´s view or my relation with him and no, I feel not guilty with my genes.
Have the opinion you want about me, but please do not touch my son or my relation with him because this is the wrongest thing to do in the world.
It is offensive, is aggraviant and cruel and it is inacceptable.
I consider that there is a fundamental difference of attitude: many people think they found the truth whatever the side; I am in the searching for and learning as much as possible.
-I am convinced also that there are many parents completely left alone by the mainstreamed medicine with an autistic child with an enourmous physical suffering, that they are captivated by many not so serious ideas. This is very worrisome but for me, we can warn about the issue, but NEVER to attack parents. But also, many parents have a very rational and serious approach with a child with enormous physical suffering, fighting for serious doctors and safety and efficiency and being extremely informed. BTW, it is hurting to ME to read the description of autistic in the worst ways possible. It is not serious, it is unfair and it is aggraviating, at least for me as the mom of an autistic child, such as it offensive the generalization of very extreme murdering thoughts as common for all parents with children with ASD. The parents who murdered their autistic children committed the worst or the treasons and this is unforgiveable and ununderstable.
-I am convinced that whatever I say, whatever I show, whatever the polite I can be or the demonstration of civility I can give will not change the close mind of many and the extreme position of many more - ir the misunderstanding of me. Simply there is no interest in the evaluation of the possibilities different that the ones they consider as logic under a personal definition of logic and under a personal definition of serious science based on personal beliefs.
You know. Its a wonderful world. If I explain enough, I am perseverant and I am ununderstable. If I feel /am mocked-because at all I can feel tired also AFTER A YEAR of telling the same- and I complain, I am told that I do not accept criticism of science and NOBODY see offense ( even when my ethics/scientific background is attacked directly or tangentially). After near 12 months, to ridiculize appealing to generalizations is simply offensive- as happened recently-, especially because if you offer other perspective -obviously to confirm-you are "vague" and "theoretical".
The aggresions are nor vague neither theoretical; they are very real, from BOTH sides of the debate.
My arguments have been dismissed out of hand by some. Well, when I offered to explain it was too long, too difficult or whatever or I had no answer. Then?? Therefore , always “the truth”-based on known partial published data only- is in the side of the you who are in this position this way. Wonderful world, indeed. But nobody assures that this is THE TRUTH. And my philosophy of what is science and how develops and grows in knowledge is much wide that this. Unfortunately, we never reach this point of discussion because of lack of interest. Again, your choices.
OK;therefore how do you debate in “terra incognita”?
First you hypothesize and after you discuss with available published serious science (when you want, where you want) but with the hyperboles and " the whole vademecum" or "the whole Periodic Table" and the “see your zillion possibilities” arguments I am tired. Especially because when I have offered to explain and to backup with science of different fields (biochemistry, neurobiology, metabolic and so on) I have been dismissed- too long, too difficult, too whatever-AGAIN. And when I have offered to explain why I think the way I do- in my son, that is an important part of my personal position- I remember only 2 people thinking different that accepted and hear enough deep to really know about me and my approach with my son (thank you Jonathan and DoC). Where are we then? In the beginning.
With the degree of knowledge that today there is in autism ALL are imprecise-more or less- and vague because nobody proved anything FOR SURE. But when "they" mention the vaguety- supported with partial epi evidence-“Epidemiology in autism is in its infance“- is proven, when I propose another thing to analyze by 100th time, I am vague. I suppose that always it depends on the eyes who are looking for, the mental attitude/preconcepts you can have/or not and your ideas about the status of science and the personal philosophy of science. The basis of a process of understanding-when possible and depending on individuals-is the interest in the others´s true feelings and motivations and not the mental constructions about the other´s feelings and motivations- many times affected by own perceptions of the world that are very affected by personal experiences/beliefs- previous or not. Therefore the interest in effort and negotiation - socially speaking- obviously not only from society in general for accomodation but for true understanding from autistic adults or ND parents/researchers to non-autistic adult (parents or not) is what I see absent in general, whatever your position as non-ND. And it is unfair that ALL the work must be for us- in the understanding arena and please do not tell me (whatever the side) "the other side started it".
-I am convinced that whatever I can post under my style, it is worth in the webworld if I respect the right to someone else to think different. And I do, especially in blogs of people thinking different- and advocates of autistic people. But I have the right to be respected- and I have been offended/mistreated/misconsidered/accused of antivaccines/accused of non-scientific (and recently of being a spokeperson and many other awful things by association)/ignored so many times after a year and worsening that it is my time to say ENOUGH (it is my right, too).
Dignity is not prerogative of a group. I m not as some people tried to depict me. I have over and over tried to understand and to maintain the discussion civil. I am not recognized myself in all the things that are told about me as for sure. It would be different if I felt i were being characterized accurately and then attacked for something I had done; but instead I feel like a wall on which people are projecting personal views deriving from other times and places that have little to do with anything I have ever said or done or proposed in style/tone/conclussions or treatment of autistic people- including the view of my own son. I am tired of the disqualification because of being Guilty by association, of the Appeal to tradition and to common practice,the appeal to popularity, of the biased sample, the hasty generalization, the spotlight, the appeal to consequences of a belief, of the appeal to belief and of personal attacks in form of ridiculization-over and over-twisting my words many times.And this socavates the sense of what true advocacy is, IMHO.
This is why (in a list of reasons) I am beginning my blog. Because the time of posting in general in blogs where I am not confortable has reached an end. Always the meessage is against someone/a group not pro-understanding to promote a true change. And perhaps, but only perhaps because always depends on the heart of the reader, this way I can be understood better.Because simply the same things are over and over said to me as proven facts- and in different contexts are over and over said, some of them with some reason or simply reason-but locked with out of date/incomplete science-and all science in ASD is incomplete today- some of them not (talking in general)- and my participation has brought no difference, in tone/style or conclussion in many blogs but I feel very well about my past participation . After 1 year, it has been very educative on human nature in its diversity-myself included- but nothing has changed therefore I feel that my collaboration has been almost null to change a very ugly situation. Time to think about, for me. Time to move on.Time to stop.
-I am convinced that my son is not hopeless, that there are a lot to research and to know in ASD. Meanwhile the tone would have to be different when talking of theories/clues as proven facts, whatever the topic- and many people talk forgeting this, everyday. Nobody has the right to use my son´s autism for profit but nobody has the right to speak in my name, and for now, I SPEAKS for him, nobody else.
-There are many blogs from neurodiversity where I feel not welcome, even when I am answered- and I agree that this is a world of perceptions, perhaps it is not the intention or it is the way that autistic adults present their ideas. I have the sensation of the bee in the kitchen: it is supported, but it would be so nice if it goes out or if it shuts up the noise! There are also some others (not more than 2/3) when I feel I am appreciated by the owners of the blog, even if I think different (even very). Thank you Mum is thinking and Kevin and DoC.
Finally, after the finding of these special blogs for me, from Wade (Rankin), Ian (Parker), Kyra and Kristina (Chew) and Amanda (ballastexistanz)- and from very productive exchanges of ideas with Jonathan (Semetko) and with DoC- I have to say thank you for all you teached (and teaches) me about autism and about debate (and about science, emotions, phsycology, life, experiences and productive attitude in the Autismland we all share). I have been said that I am perseverant. However, for me is not perseverance. It is the most rationale approach I can do with the clinical results in my son in autism in particular and my own research and analysis for autism in general.
-I am convinced that with many (if not all the ones I know) of the parents advocating for neurodiversity we share the same strong feelings of love and acceptation – surely-for our children. But the care of an autistic human being is much more than support and love and acceptance, as my son´s biochemistry/clinical analysis- yes, very properly done- have teached me painfully.Many of them- and other autistic adults- are so sure about their ideas as the truth that they have opened an abyss between “them” and anyone thinking different and closed all the doors around, considering that if you are doing biomedical, you are in denial,wrong, obssesed,unethical and unscientific- even when they have no scientific/ other kind proof of this-“because”- as it was my case- you have found several illness in your son and you want to treat them the best you can AND surprisingly the autistic symptomatology partially disappeared and you researched to understand why. And the sad aspect is that I felt very close to ND ideas until the ortodoxia was assumed, defended and stablished as a fact FOR SURE- with any exchange marked by the distrust/preconcepts in ND about biomedical parents/people in general that are not me, with a thinking, position, style, conclussions and overall approach to autism that is not mine and considering me a spokeperson of people I have never talked in the name of. However, I will always support the idea of acceptance of differences and embracing of our autistic children. My son deserves this from me and much more.And my son and ME deserves more of the advocates of autism because My voice is also important to be heard-because for now I am his voice, even if I am far far away from USA/UK/Canada. Whatever the point, there would not be a true advocacy movement without the parents of autistic children. We are not the enemy, but we are seeing/attacked over and over and over as such if we do not embrace- COMPLETELY AND WITHOUT changes-nor a comma- the ND ideas and /or identified with extremes many of us have NOTHING in common. Sorry but for my son ND ideas were not enough to assure his well-being and physical health, simply.
“Never the truth is sad, what it doesn´t have is solution”
Nunca es triste la verdad, lo que no tiene es remedio Joan Manuel Serrat
The point is we are not going to change the truth, whatever our opinions about. And neither our actions.Therefore, Why another space of discussion seems impossible today?
In this sense I also have reached the point to say that it is very important to know what is important to fight for and what is not and WHERE . The known “wisdom to know what I can not change” that I have applied to much more than only one field in my life.OK. Therefore, have a nice life and think what you want for those of you that are not interested on what I have to say or what I think/study.I can not change your ideas about me- never tried to convince you of nothing-or your “locked in”. After a whole year of trying to understand, I do think it is time to have a decision.
But I wonder, beyond my participation or not:
How does this situation help autistic people (children, teens and adults)?
How does this situation will change the way mainstreamed medicine (and society) preconcepts about autism (Autism=Hell, Autism=Cancer, therapy=ABA only)?
How does this situation will allow a space of real discussion of what is junk and what is not, what is useful and what is not and what treatments (under biomedical and mainstreamed) are really effective and safe?.
How productive exchange of opinions and science analysis can take place if all we have in the majority of the blogs is distrust, rants and more rants, and close mind in some cases, and this is related to close the heart to others position and this is repeated once and again if you read archives from 4 / 5 /10 /30 months ago, talking in GENERAL for one time?
How vaccines and thimerosal and environmental xenobiotics would be analyzed seriously with the enormous charge of distrust involved? IF there is a real contribution as an insult, not a cause, Who in the mainstreamed circle of scientists studying genetics related to autism is going to begin to study the issue in collaboration with those who propone a contribution?
When an integrative view of what autism is, considering genetics epigenetics gene expression and environmental potential contributions will arise, from the concerted effort of different groups studying the issue for autistics of all ages and analyzing all the possibilities from the non-link and the link in COMBINATION plus the neurocognitive, sociological, emotional and pshycological aspects –including advocacy-in and for autistic children/teens/adults?
How affects this to MY autistic son? I am (very) concerned about.
Therefore it is my time to complain about the situation and how both extreme sides are collaborating to it.
I wonder when actual learning (real learning and productive exchange of opinions between people thinking different) is taking place in the web, about autism? Only think about it. Today, it is the echo or the war and you find true debate only in very selected places.
I have read that autism does NOT need a cure, especially by autistic adults. However, I do think that there is no ignorance in the need- and the duty and the right as a parent- to ameliorate the physical suffering in your child that is accompanying autism many times and can be properly tested/diagnosed/treated. For me it is not productive the acceptation of the physical suffering in autism as part of the autistic personality and a “detective” work- scientifically based- is needed many times to detect the root of this physical suffering- first hand experience. When you treat properly tested and diagnosed medical conditions concomitant to autism you are not treating the autism-that BTW nobody has known to define me-you are treating medical conditions that are hindering the best of your autistic child to flourish-who asked me about what I found?-probably for me consequences of the interaction of autistic genetics, different for each autistic person, and the envirome. The difference is important because it is based in the root of acceptance and in a personal empathic view of what autism is in general and in particular in my son.
However, I never close doors to nobody, especially in this (my) place.Please left the anger outside and let´s to talk from a different place of mutual respect and respect for other´s ideas. I do think that a different discussion space if possible ( or not, it depends not only on me) ,only if an open heart/mind to ALL the possibilities in the science of autism are considered- and in the agreement about what is non-serious for the majority- with empathy to be the rule and where we can move on ahead with the understanding that many parents doing biomedical have the same acceptance and love to our children that the parent advocating for neurodiversity. I am one of them. What we differ in -many of us- is in the elections of treatments because of our clinical search/findings (even if they are anecdotic for science or unpublished)-beyond and also with the educational/Speech therapy-Occupational therapy ones- not in the love/acceptance of our autistic children.
Even more, there is no agreement with a lot of things in the biomedical field of tests/treatments. In the same way parents can send a strong message depending on whom they select to treat their children- considering CV and conduct and credibility and credentials and serious approach and consideration of the autistic child safety and well-being, the parents and the scientific procedure- in no way to say you are doing biomedical is an endorsement of the whole ideas about how to search/what to test- and where and how-/ what to do next. These are personal and familiar decisions and there are as many as parents.
-I am convinced that the judge of my whole attitude and ideas and approach and love and acceptance of WHO HE IS, but not of WHAT HE HAS AS MEDICAL CONDITIONS AS INEVITABLE AND DEFINITORY OF HIM will be the most important – and the only important finally: MY SON. And yes, the treatment of all these medical conditions has made him less autistic in symptomatology, but obviously did not change his autistic genetics- and will never do- therefore his essence has been/ is / will be always there. I have all the parallel changes in his autistic symptomatology with the clinical studies documented. Because of the privacy, because this is personal, because it is anecdotic and because it was based on my (our) familiar decissions about treatments -different for every child-I will not talk publicly about.
For me,to defend a moderate position (inclusive and considering all the aspects) is my own way to honor my son´s life in one more field, as I try to do it every day in every field of his life with my attitude about the autistic human being he is. Consideration to other people is an attitude I hope I can teach him (and them- I have another child-) with my example, verbal or written. However, this does not exclude the needed self- respect and advocacy for his/her own voice (and the mine also now) to be heard and respected and this is why I presented all my ideas above. As a wise friend told me:” The real test of moral conduct is how one acts in the face of provocation. Someone else's bad behaviour towards me gives me the right to respond and to defend myself, but it does not give me carte blanche to respond in kind” and I agree wholeheartdly (thank you Ian).
When my son was diagnosed, he could not say “I love you mom”. He almost said nothing.I promised me that this, even heartbreaking, was not important. I knew he demonstrated his love in his way. I promised me that the important thing was that I told /tell him every day, every minute with my (our) attitudes that he was/is loved, whatever the challenge. How many times I told him “I love you sweety” was important.
Now, after 3 years, we have our special times every day, many times a day.
Me: I love.,..
Son: you so much mom (smiling and touching my hair)
And like these, many many more special times daily with his father, his peers, his sister, his special teachers his (mainstreamed) teacher, his grandma, his grandpa, tomy (our dog) that were impossible for the doctors who diagnosed him and can be reduced to one word:Happiness.
I suppose that many people ask themselves who is the tall woman walking in the street in the afternoons smiling continuously these days:…ME.
“Because it is not the same to Live than to Honour Life”
“Porque no es lo mismo que vivir, honrar la vida”
Eladia Blazquez-Argentinian singer and songs author
And life for me is to honor in my son, my family and friends and in every person in contact with me,even if this person thinks totally different than me, even if this person is aggressive/offensive, even if I can not understand why- or it is difficult. The better I could/can do was/is to leave the words of each one to talk by themselves, to avoid the further interaction after repeated efforts of explanation and understanding- and failing- and I have done/do this. This is my personal definition of dignity, for me and for my son.
This is Searching Equilibrium, a journey and a discovering and for me an opportunity to learn. There is a debate with no rules out there. Well, let´s go to consider rules of fair consideration, at least please HERE to make learning possible (if each of us allow it).
To my family in the Family´s Day
Honoring Life and Searching Equilibrium