SearchingEquilibrium

I am the mom of an autistic child. In the needed learning to be the best mom he deserves I have found also the need to research, to exchange opinions and to learn in this journey doing a path and always searching equilibrium.

Sunday, October 22, 2006

Respect Meme:5 Simple Questions

First, I want to acknowledge Jonathan his offer of doing this post. When Jonathan contacted me about this respect meme, I considered it very important because I think that
the way respect is perceived and expected is different from the different positions in the autism debate.For me, it is important to know about.

His answers can be found here

Jonathan Post on Respect Meme.

Yes, the questions from Jonathan are simple but for the answers I must say that I have thought a lot , looking at my own experiences.

1 What is respect for others?

For me, in autism world there are several positions: of the parents of autistic children, of the autistic adults/teens and of the researchers in autism. There are as many different positions in parents as parents of autistic children are. There are many different views of autism in the group of autistic adults/teens. There are other groups of parents that also are researchers in autism field or therapists, and autistic adults that also can be researchers in different areas.

Definition of respect will change then for one or others, depending of who you ask, IMHO, and what is respect for one group is not for another.

Respect for others is:
Besides A) and B ) of Jonathan

A) The avoidance of questioning of motive and the avoidance of personal attacks.

B) Trying to attack the most charitable interpretation of another’s argument as possible.
These are general, but in particular

C) Considering that each parent wants the best for his/her children not because of selfishness. For me as a parent not only the what and the how but also the whys-beyond genetics- and what else than ASD diagnosis are important. But again, each parent has her/his opinion about. Some parents consider ASD a disease (or a syndrome); many others do not.

D) Considering that each autistic adult/teen has –if he/she wants to share- a lot of important things to say IMHO -that must be heard about what and how is being autistic-neurologically, emotionally, medically, sensorially, sociologically, politically, scientifically. I consider that in this point autistic adults/teens must be asked about their opinion on respect, because I only can give a (my) perception of their opinion.

E) Considering that doctors in practice and research deserve consideration for their ideas and work in autism field, because many of them are interested on the whys and what else than ASD diagnosis in ASD is/are present. Their language is very related to autism as a disease-because science tries to maintain objectivity beyond the emotional issues- although taking into account the ethical ones.

Respect for a parent- at least for me- implies the consideration of my emotional status and the importance of my children in my life and also of my decissions about my children´s health as the best I could do for the individual presentation of concomitant medical conditions in him, beyond and besides the ASD diagnosis. Respect for a researcher does not imply emotion , but careful analysis of facts and ideas/hypothesis without the dismiss in advance or the label of unscientific in advance-not the emotional considerations about- Scientists consider ussually autism as a disease to treat as many others and are very involved in numbers and epidemiology and clinical data. Respect for an autistic adult has implied different things in my perception.

So it is what is respect and what is the perception of what is respect for each group, from the others-if interested.

With so different points of views the differences and the struggles and the misunderstandings for me are understable. BTW, Empathy ALWAYS matter and for me it is the root of a true understanding.

2 What are things that appear to respect issues, but are not?


It is certain that the argument (and the ethics and empathy that show ) is/are important but also mocking an argument, even if it can seem valid for a researcher

1-it is very hurting for a parent that has based on it his /her approach of the management of autism in his/her child

2-it is unfair for a scientist to be presented an argument from the emotion and not from the science- quality of the hypothesis, procedures and data. Criticisms can be done without questioning ethics or motives.

3-Sometimes, I have been surprised about how an argument can be understood different from an autistic adult, from his/her perspective and mockering depends on the context and understanding of, even if the original intention was not this.

Beyond the intentions, all can be misunderstood because the interpretations of the same written thing vary-beyond what is evident in language- because of personal concepts about ASD.

3 Is this relevant to the autism discussion and why?

Yes, it is. In a world of perceptions productive discussions depends on how we feel other people are considering us , are trying to understand us- or not- and how we manage the misunderstanding and –in the supposed case- the aggraviation ( or supposed/perceived aggraviation). In the autism discussion, susceptibility is the norm.

4. What can we do to help resolve these issues?

Beyond trying to separate the person of the argument, I do think that how the argument is presented, with what generalization/extrapolation- or not- and the tone/the “read between lines” make the difference between a discussion/debate and a personal war. The understanding of the different positions (even the unconscious differences and interests) is in general absent. The consideration of different positions as valid- not the personal one- is lacking or if you do your effort sometimes is not perceived as such. Many times it seems that the position is” It doesn´t match my thinking: therefore it is wrong”

Such as it is, it has no solution. If a parent thinking in a cure for autism talks with another parent thinking in autism as a way of being and both consider that the personal one is the absolute truth for all and the care about what is respect for each one is absent in the interaction-such as it happens ussually, it has not solution. If a parent thinking in a cure for autism talks with an autistic adult advocating for his rights, it has no solution if both consider that the personal position is the absolute truth for all levels (human rights, metabolism, biochemistry, physiology) and the care about what is respect for each one is absent in the interaction-such as it happens ussually-because the individual experience is not considered. If a researcher looking in biochemical/epigenetics in autism- and finding abnormal tests in ASD- talks with an autistic adult/parent thinking in autism as a way of being and the care (or the knowledge) about what is respect for each one is absent in the interaction-such as it happens ussually , it has no solution.

BTW, asking for clarification before the declaration of the hostilities would be an attempt to decrease the degree of misunderstanding. However, until a real interest in agreement-even partial- is going to develop when possible and depending on individuals I do not think that the situation is going to change easily.

5. How well do you think this will be accomplished?

Perception depends on the emotional status. Even if we want to separate, if we feel our children- or our relationship with them or our decisions about them- are freely criticised without knowledge of who we are or questioning our motives we will react in consequence. How we react in consequence probably makes a difference – or not. In my personal experience, it matters also the different understanding of some particular situation in the interaction with autistic adults or other parents thinking different. In the case of scientists, many times the personal beliefs in terms of potential consequences of research are discussed and they have no true relation with the research basis or goal or the scientists intentions.
I think it will be difficult to achieve a different situation. It depends on many individual perception/positions modifications to produce a true change because

“se necesitan dos para bailar un tango” this is
“you need two to dance a tango”

…and the same for a discussion with personal attacks instead of a progressive/productive debate.

I am very interested on all the opinions about this. Thank you in advance

13 Comments:

  • At 2:21 AM, Blogger Alyric said…

    This bit is a real worry.

    "Beyond trying to separate the person of the argument, I do think that how the argument is presented, with what generalization/extrapolation- or not- and the tone/the “read between lines” make the difference between a discussion/debate and a personal war."

    'How the argument is presented>??? What, the packaging is just as importsnt as the contents? The 'read between the lines" ???? Which autistic has any facility to 'read between the lines'? What is said is what is said - neither more nor less. If you insist that there is a 'between the lines' the chances of your being totally wrong are around 100%.

     
  • At 8:27 AM, Blogger María Luján said…

    Hi Alyric

    Thank you for the opportunity to clarify.
    Yes, I think that the content is important AND the package is also.
    What I wanted to point out is that the read between lines is a problem to avoid. This is why I think that the asking for clarification is very important.
    Sometimes, as you know, what you perceive is different of the intention of who is writing. Without the experience of the face to face I do think that the asking for clarification-when paragraphs are not enough clear- is important. Just as in this case.
    There are other situations where what is said is what is said.
    I apologize because I did not explain this specific point of the "read between lines" enough in my post.

     
  • At 8:45 AM, Blogger Maggie Rosethorn said…

    Maria, I have read your comments for a long time; welcome to the blogsphere. Your considered and reasonable comments are always enjoyed by me. I have been on the outskirts of the autism world until very recently, when a very young family member was diagnosed and have yet to blog about it because of the support the mother has requested. I have pointed her towards many of the autism blogs, explained the controversies and answered questions. Now I have one more blog for her to read. Thank you!
    Maggie
    P.S. don't worry about your English...it's a heck of a lot better and more grammtical than my Spanish ever is.

     
  • At 7:34 PM, Blogger Alyric said…

    "Without the experience of the face to face I do think that the asking for clarification-when paragraphs are not enough clear"

    OK, that clears it up. Consider if you will Maria, what it's like if the 'face-to-face' makes no difference whatsoever as for a lot of autistics, it does not.

     
  • At 9:01 PM, Blogger María Luján said…

    Maggie, thank you very much for your comment.

    alyric, I understand what you say. My point is that I consider that autistic people communicate in different way that non-autistic people but they do in many ways and in a situation of personal interaction it would depend on the consideration of this on me. The face to face-even if there is no eye contact-can be important in terms of understanding of the emotional status or interests or reactions- that can not be appreciated by the written interaction in the web.
    I understand also that for many autistic people writing is by far more easy as a way of communication- because of sensorial issues or others, I am only giving you an explanation of my sentence.
    Probably there would be a lot of information about the interest/confort of the autistic person about my words that I could evaluate- in this hypotetical situation- in a face to face interaction, even if for the autistic person this would make not difference.
    Obviously I am not saying that would be easy or I could do it properly. I am saying that I would do my best effort to a productive and confortable interaction of opinions in this situation and the clarification could be more inmediate.
    Thank you, again.

     
  • At 10:58 PM, Blogger Fore Sam said…

    Maria; Have you considered becoming a Rescue Angel with generation Rescue to help other parents in Argentina or in Spanish speaking countries cure their children? The time you'd spend helping parents would be much more productive than arguing with the neurodiverse who only take their deranged positions to defend the drug companies. www.generationrescue.org
    John Best

     
  • At 7:31 AM, Blogger María Luján said…

    Mr Best
    As you know, I do not agree with the idea that autism is Hg poisoning, even when I consider/think that in some children with autism heavy metals/Al from several sources (environment : air –food-water and others) can not be properly managed. Personally
    I consider that genetics/epigenetics/proteomics/metabolomics and biochemistry must be further researched in autism, beyond the published clues available.
    I do not agree with your ideas/tone of discussion/conclussions about the group of parents that are prone to the ideas of neurodiversity. For me, it has been (very) productive to interact with several parents that consider themselves as advocates of neurodiversity, such as it has been also with several parents that disagree partially (or very) with neurodiversity, that have become friends with time and I appreciate very much because of their style /ideas/ tone/ respect of others and dignity in their positions such as Ian (Parker) and Wade (Rankin). Even when I can have (strong) disagreements with parents defending neurodiversity I consider that a different place of discussion that the one you propose (that is offensive IMO) is needed and desirable. The fact that some neurodiversity parents or autistic adults defending neurodiversity can be sometimes offensive- even very- is not an excuse to act the same way.They are not defending drug companies but their personal ideas such as I am not the spokeperson of nobody but myself and my son, IMHO.
    I am in disagreement with the tone/ conclusions of several of the prompts and treatment proposals of Generation Rescue (in terms of the needed further research in serious science to complete/confirm theories, efficiency, and safety of different approaches), even when I am open -minded to the idea of the negative impact of heavy metals/Al and environment in general (such as organic pollutants) and also I am (very) concerned about the negative impact of vaccines in composition/schedule in genetically susceptible children and the status of the medical care our children receive in their childhood (in terms of nutrition, management of childhood disease, feeding, vaccinations and so on). I consider that autism is extremely complex and cannot be reduced to one -or a few- causes for all autistic people. Also I consider that to talk about cures FOR SURE is, at least, irresponsable in terms of the needed respect to parents of autistic children and to autistic children themselves- considering what we know about autism today in genetic and environmental terms in ASD. In the same way I am very concerned by the management of autism by mainstreamed medicine (medicalisation), by the lack of knowledge about concomitant medical problems that affect life ´s quality of autistic children/teens/adults and by the lack of respect of the autistic child and his/her family, such as it was my (unfortunate) experience.. And I am also concerned about the efficacy, safety and serious approach of the different treatments that are promoted to treat (mainstreamed or not) or to “Cure “autism because I do think that , being very important the genetic component in autism, it is more adequate to focus on the treatment of concomitant medical problems to the diagnosis than to talk about cures. For me these medical problems arise of the interaction of the individual autistic genetics with the environment. Mr Best I am very concerned about many many levels of autism to consider also the needed strategies for education, accomodation and the advocacy for the human rights of our children in terms of access to the best health care, emotional support and education from us by continuous self-education about autism and their challenges, social accomodation-knowledge, individualized education and personal opportunities for their futures as possible. And ALSO I want the environmental potential triggers, the proposed tests and treatments to be studied enough- and more than today-considering biological plausibility and high technology, high level science done by high level scientists with enough resources with the goal in life´s quality.
    Because of all the reasons presented above - and the fact that I do not agree with the GR view of autism- I must decline your offer about GR.

    However, I have always considered that my approach – an individual approach based in a personal position about ASD that I have not seen represented by an specific organization-to help other parents is the attempt to present an equilibrated view of science/research in autism field at the best of my effort, with as much information as possible in terms of theories/hypotheses/tests/treatments- and the encouragement to further research their interests and personal concerns- with also the sharing of my personal anecdotic evidence / feelings and ideas about what autism is in my son and in general to consideration and discussion. And I hope this way I can help something.
    Sincerely
    María Luján

     
  • At 3:35 PM, Blogger Fore Sam said…

    That's an intelligent approach, Maria. Since I've witnessed the tremendous improvement in my son with chelation, I think I did the right thing by acting know with the available knowledge rather than letting my son wait for what could be 20 , 30 or 50 years before mainstream medicine decides to tell me that chelation is the right approach.
    You're right. I'm very offensive to the neurodiverse. I think they deserve it for touting the notion that curing autism is killing the autistic person. This is insane but uneducated people listen to it.
    What do you think of Kevin Leitch deciding that he'll help cure his daughter if she asks for help when she grows up? Do you think it's OK for the neurodiverse to constantly call parents liars who have already cured their children? You are certainly entitled to treat these people with respect if you like but I hold them in the same contempt as child abusers for spreading false information that can prevent parents from learning how to help their kids.

     
  • At 7:30 PM, Blogger Ian Parker said…

    Hi María Luján,

    I especially like your closing to the first question. Empathy always matters. I get the impression that a lot of people confuse empathy with agreement, but agreement is not required. To me it is an understanding (or at least a reasonable attempt at understanding) the position of another, not by projecting one’s own thoughts onto them but by trying to put oneself in their ‘shoes’ and understand them. Understanding does not require agreement, and agreeing to disagree while still respecting the other person and their right to a different opinion or view is more powerful than blind agreement or uncritical acceptance. I reckon that I have learned at least as much about autism from those I disagree with as from those whose opinions I share. As I wrote in my blog in my ‘About Me’, if I learn from someone else, who wins? Why would anyone want to close themselves off to this opportunity to learn?

     
  • At 9:22 AM, Blogger María Luján said…

    Mr Best
    I thought for a while about your comment.
    If you read my introduction I proposed:
    “Well, let´s go to consider rules of fair consideration, at least please HERE
    to make learning possible (if each of us allow it)”
    I have to tell you that I feel unconfortable with your words about the
    neurodiversity parents. Because I did not warn you about the issue, I have
    published your comment after reflexion , but I hope you understand that, If
    you continue with this style, I will not publish in my blog further comments
    with this tone, especially related to autistic children and parental decisions
    about. I would do the same if the situation is the inverse , this means , if a
    commenter advocating for neurodiversity ideas has words about you ( or other
    bloggers/visitors) with this kind of language.
    I have witnessed many times a very angry discussion. I propose here another
    kind of interaction and I hope that posters understand that I am not
    confortable if third people are criticised in comments- especially with name
    calling such as “child abusers”.
    Because I published your comment this time I will also clarify my position
    about.
    Science has not been conclussive in almost nothing in autism. Under the
    present situation, we, parents do the best we consider with the information
    available and our own criteria. I think that “curing “autism is not possible
    because of the genetics roots of. I do think however that there are a lot of
    concomitant medical problems- that can be /can be not related to the autistic
    symptomatology, that are treatable once they are properly
    tested/detected/diagnosed. Under these ideas, and my personal ideas about that
    we all have our personal view of what autism is individually and in general, I
    do not consider the neurodiversity ideas insane or from uneducated people. I
    do not agree with them based on personal research and experience, but I
    respect the position. Doing biomedical or not is an election and, as for all
    elections, we must live with them.
    About Mr Kevin Leitch. I can disagree in many aspects with Kevin- and I do-
    but I have a lot of respect for him, his words of love-support and commitment
    to his family and his autistic daughter are always sincere and honest, IMHO. I
    consider that our relationships with our children are sacred. In the same way
    I posted:
    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.
    I would never say a word about a so personal/familiar decision because I give
    the same respect about the children of other parents as the one I ask for. I
    consider I have no right to say a word about your specific question.
    From what I read, many of the neurodiversity parents are concerned about the
    need of further research and high quality science to support the anecdotical
    evidence and how many times distorted views have been presented seeking for
    particular goals.Beyond the extremes, I consider that the request for science-
    based proofs is not unfair and in fact is necessary.
    I do not think that ND parents are child abusers such as I do not accept that
    I have been called so because I am doing biomedical. In terms of false
    information it depends of the interpretation. About prevention of help own
    children we are all adults and many parents do their personal research in
    biomedical to have the most informed and responsible possible decision. And I
    consider that the familiar/parental decisions must be considered with
    fairness.

     
  • At 10:59 AM, Blogger Kev said…

    Thank you for refusing to touch John's poisoned chalice and for respecting Megan enough to want to leave her out of this Maria.

    I look forward to your continued blogging very much.

     
  • At 11:41 PM, Blogger María Luján said…

    Kevin

    You are welcome.

    and thank you very much for your words here and in your blog.

     
  • At 9:26 PM, Blogger mcewen said…

    I think that this is a delightful project, especially the international/inter-cultural aspects, I wish you every success. http://whitterer-autism.blogspot.com/

     

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