ACCEPTANCE
There was a healthy debate in the comments to a post I did last week, with the conversation focused on the question of whether a parent can consistently “accept” their autistic child and yet seek a “cure.” I use the word “cure” here in a very broad sense to mean seeking a means of eliminating many, if not all, of the clinical aspects of autism that are generally, if not universally, considered to be disabling. Of course, even the concept of “disability” is subject to debate.
Joseph, with whom I have long disagreed over the issues of whether environmental insults may play a causative role in triggering autism and whether there really has been an increase in the incidence and severity of autism, wrote the following:
Joseph is correct that there is an ethical obligation to carefully consider what it is that we are trying to accomplish by any given intervention, but he misses the mark, at least in my opinion, when he assumes that everyone seeking a cure wants to alter a child’s personality to match the parents’ wishes and dreams. I have indeed listened to what autistics have to say on the question, but listening, considering, and reaching an opposite conclusion is different from “ignoring.” Calling something a “brain difference” does not really help to define what the difference is or what causes the difference.
Joseph’s representation that autistics equate being cured to having an alien force power their bodies begs an important question. Do any autistics who have had their autism biomedically remediated share that fear? Indeed, I have been told time and again by some adult autistics that nothing I do can possibly cure my child of autism. If that is so, how can any autistic individual know what the impact of a cure would be? How does anyone know that the essence of an individual’s personality would be altered by a hypothetical cure?
One autistic adult whose writing I read on a regular basis is Amanda Baggs, who blogs under the name ballastexistenz. Again, listening is not the same thing as agreement. Yet any beliefs about the nature of autism would have no validity at all if I was not willing to let them be challenged ⎯ and perhaps altered to at least some extent ⎯ by her writing. Ms. Baggs was interviewed as part of the NPR report I mentioned in my last post, and she had this response to my taking exception to a comment of Jim Sinclair’s:
I wish I could share the view that autism is a mere abstraction, but that would ignore the multiple disabilities challenging my son on a daily basis. [Update: For clarification by both Ms. Baggs and me on this point, please see the comments to this post.] The points made by Joseph and Ms. Baggs were addressed quite well by comments from my friend (who someday I hope to meet face-to-face, and who I trust will forgive me for some editing), María Lujan:
María’s moral sense of the matter is as strong as her scientific sense:
Like everyone else in this ongoing discussion, I have a tendency to overgeneralize opinions by other people, and to place people in “groups” that, in reality, may not exist. As Ms. Baggs writes: “When someone is on ‘your side,’ it is very easy to not see how it can look from another ‘side’.” I have to say, however, that I have never personally spoken to anyone who I believe has adopted biomedical interventions out of a lack of love, respect, or acceptance of their child. Such a parent may exist, but I have not yet met one.
Indeed, the act of intervention requires some level of acceptance. One must accept the fact that a child is autistic. That may not be the type of acceptance that is defining the debate; it is an acceptance of “autism” vis-à-vis acceptance of “the autistic.” But it is just as meaningful in a very important way.
Tamar Bihari is not a proponent of biomedical interventions, nor is she a vociferous critic of them. She is a mother who also happens to be a fine writer. Tamar wrote an essay for the Autism Speaks site, that is well-worth reading. She speaks eloquently of the difficulty many of us had in accepting the reality of autism, and makes an important point:
The issue isn’t one of acceptance and love; it’s of response. In his comments, Joseph acknowledged that some in the “autism rights movement” acknowledge that autism is a disability, and then adds: “The question is what to do about it and how it should be constructed.”
If the construct of autism is defined by a constellation of dysfunctions, an appropriate response includes interventions to counteract the problems. If, on the other hand, autism is a mere cognitive difference that resulting solely from genetics unrelated to any environmental insult, then no amount of intervention will make a difference anyway. From the practical side, the real issue becomes safety of protocols. The ethical dilemma, however, is unresolvable.
For her part, Ms. Baggs feels it remains unethical to not “accept” the autistic child “as is,” regardless of whether the cause is genetic or environmental. I don’t think the question is that easily answered. I believe the answer lies in the heart of each parent of an individual autistic child. I speak only for myself when I say my conscience is clear.
Note: The extracts from the comments I quote above may not convey the complete context that the original writer intended, and I certainly invite and encourage the reader to refer to the original post and comments.
Joseph, with whom I have long disagreed over the issues of whether environmental insults may play a causative role in triggering autism and whether there really has been an increase in the incidence and severity of autism, wrote the following:
[An] aspect of autism that separates it from other disabilities is the fact that it’s a brain difference. So it has a profound impact on the personality and way of being of an individual. Because of this, the question of cure becomes an ethical dilemma. To cure someone implies a personality alteration. Imagine that there was a technological way to alter the personality of a child to match our wishes and dreams. Would that technology be ethical? (In a more detailed message I could even argue that the difference between ‘altering personality’ and ‘curing autism’ is nothing but a subjective construction). And the way you can usually tell if something like this is really an ethical problem is to ask the potentially affected individuals. Autistics have said that being cured would be akin to having an alien force power our bodies. Ethically, there’s no justification for ignoring what autistics have said on this matter.
Joseph is correct that there is an ethical obligation to carefully consider what it is that we are trying to accomplish by any given intervention, but he misses the mark, at least in my opinion, when he assumes that everyone seeking a cure wants to alter a child’s personality to match the parents’ wishes and dreams. I have indeed listened to what autistics have to say on the question, but listening, considering, and reaching an opposite conclusion is different from “ignoring.” Calling something a “brain difference” does not really help to define what the difference is or what causes the difference.
Joseph’s representation that autistics equate being cured to having an alien force power their bodies begs an important question. Do any autistics who have had their autism biomedically remediated share that fear? Indeed, I have been told time and again by some adult autistics that nothing I do can possibly cure my child of autism. If that is so, how can any autistic individual know what the impact of a cure would be? How does anyone know that the essence of an individual’s personality would be altered by a hypothetical cure?
One autistic adult whose writing I read on a regular basis is Amanda Baggs, who blogs under the name ballastexistenz. Again, listening is not the same thing as agreement. Yet any beliefs about the nature of autism would have no validity at all if I was not willing to let them be challenged ⎯ and perhaps altered to at least some extent ⎯ by her writing. Ms. Baggs was interviewed as part of the NPR report I mentioned in my last post, and she had this response to my taking exception to a comment of Jim Sinclair’s:
With regard to loving a child and hating autism, one thing I said in an interview for the same radio show (but that didn’t make it onto the air) was that there’s no such thing as autism, and that this is probably what has a lot of people confused.
What there is, is a kind of person that is autistic, and this goes deeper than personality or culture. Just as there is a kind of person that is male or female, instead of an abstract concept of “maleness” or “femaleness” that each person “has”. “Autism” is an abstraction, not a thing.
However, that abstraction allows people to believe that it’s a thing, that can be separated from the person, rather than a word used to describe a certain aspect of the person.
And so, yes, if you hate the autism, you’re hating a fundamental aspect of a person (this goes for if you’re a parent, if you’re autistic, whatever). That doesn’t change based on whether or not it’s considered polite or even downright shocking by your standards to “define people’s relationship to one another for them”.
I wish I could share the view that autism is a mere abstraction, but that would ignore the multiple disabilities challenging my son on a daily basis. [Update: For clarification by both Ms. Baggs and me on this point, please see the comments to this post.] The points made by Joseph and Ms. Baggs were addressed quite well by comments from my friend (who someday I hope to meet face-to-face, and who I trust will forgive me for some editing), María Lujan:
… a human being is much more than a label. Because the diagnosis is given based on behaviors and absence of certain skills (language for example) I wonder how do we know if the behaviors are not resulting from the intrinsic … person but resulting (some of them? how many and how?) from the interaction of … genetics with the environment and the resulting medical problem?
Why [do] many of the behaviors associated [with] ASD disappear under certain treatments (not behavioral) with parallel improvements in certain biochemical parameters? If they were intrinsic to the person, there [would be] no way to change, [just] as there are no ways to change the DNA today.
María’s moral sense of the matter is as strong as her scientific sense:
My son’s soul has not been stolen by vaccines or thimerosal. The autism he has does not make my son less human. The autistic he is deserves all my consideration and acceptance and love and also the best medical care, a medical care I have not found in the [mainstream] medicine available.
. . .
Like you, I want answers based on high tech science, [not] epidemiology or statistics. I want science based on clinical studies of high quality, not politics. I want to know about the truth and I refuse to be involved in a “game” where it seems more important to win or to be right ⎯ at any cost ⎯ than the truth. And like you I consider that autistic[s] deserve and must be respected and considered and [heard]. However, this does not exclude me from my rights and my duties to give my son the best opportunities for the best life quality he can get under my personal research and responsibility, using all the tools available to me with appropriate information.
. . .
I do not consider AUTISM a gift, but my AUTISTIC CHILD [is] a gift. I do not … celebrate AUTISM but I celebrate his existence, or in other words the CHILD he is, autistic or not. I enjoy life with my autistic son, even when I cannot find [joy] in autism, because for me they are different things …
Like everyone else in this ongoing discussion, I have a tendency to overgeneralize opinions by other people, and to place people in “groups” that, in reality, may not exist. As Ms. Baggs writes: “When someone is on ‘your side,’ it is very easy to not see how it can look from another ‘side’.” I have to say, however, that I have never personally spoken to anyone who I believe has adopted biomedical interventions out of a lack of love, respect, or acceptance of their child. Such a parent may exist, but I have not yet met one.
Indeed, the act of intervention requires some level of acceptance. One must accept the fact that a child is autistic. That may not be the type of acceptance that is defining the debate; it is an acceptance of “autism” vis-à-vis acceptance of “the autistic.” But it is just as meaningful in a very important way.
Tamar Bihari is not a proponent of biomedical interventions, nor is she a vociferous critic of them. She is a mother who also happens to be a fine writer. Tamar wrote an essay for the Autism Speaks site, that is well-worth reading. She speaks eloquently of the difficulty many of us had in accepting the reality of autism, and makes an important point:
The turning point is not the diagnosis itself, I think. It’s the willingness to see. To understand that your child has this condition, that the way he or she is acting is not willful, is not unique, and is not something he or she will grow past, not without help.
The issue isn’t one of acceptance and love; it’s of response. In his comments, Joseph acknowledged that some in the “autism rights movement” acknowledge that autism is a disability, and then adds: “The question is what to do about it and how it should be constructed.”
If the construct of autism is defined by a constellation of dysfunctions, an appropriate response includes interventions to counteract the problems. If, on the other hand, autism is a mere cognitive difference that resulting solely from genetics unrelated to any environmental insult, then no amount of intervention will make a difference anyway. From the practical side, the real issue becomes safety of protocols. The ethical dilemma, however, is unresolvable.
For her part, Ms. Baggs feels it remains unethical to not “accept” the autistic child “as is,” regardless of whether the cause is genetic or environmental. I don’t think the question is that easily answered. I believe the answer lies in the heart of each parent of an individual autistic child. I speak only for myself when I say my conscience is clear.
Note: The extracts from the comments I quote above may not convey the complete context that the original writer intended, and I certainly invite and encourage the reader to refer to the original post and comments.
posted by Wade Rankin at 7/06/2006 08:42:00 PM
62 Comments:
Wade,
I have to say that I have been reading your blog for some time. I wish I could be as eloquent as you are. But I will comment anyway.
I have two children. One who has an ASD diagnosis and one who is 'neurotypical'.
My NT child is not very good in math. This is probably genetic. But I am not going to 'accept her the way she is' and let it go at that. I am going to make sure that she does all kinds of extra work so that she can be good in math.
Likewise, she has asthma and allergies. Nothing we did with an allergy doctor helped and it was recommended that we put her on an Advair inhaler everyday. So I turned to alternative medicine for my NT daughter with a homeopath. She is now symptom free.
Parents make decisions about what their kids need or will need in the future all the time. That's what we do. And we put things in their lives and take things out of their lives to change/improve something we think needs to improve. That doesn't mean we don't love them the way they are or don't recognize that their genetics might not suit them for something.
Why should our ASD kids get any less that we would do for an NT child?
My son is a very good athelete. He loves to play soccer. But he had some emotional problems (freezing up, going off the field before being allowed to by the ref) that were keeping him from doing what he loved to do. There was no help from the medical community. So, again, we turned to homeopathy. He is doing fabulous and his problems are mostly gone. And now he can do what he wants to do.
The point I'm trying to make is that we all do things for our children. If we think they have a delay, we try to bring them up to speed. If we think they have a health problem, we try to get the help they need to fix it. Sometimes we do have to give up and accept the way things are. In that case, we try to put as many aids in place as we can to help them do what they need to do.
This may be a frivolous example, but here is goes: my son loves to play soccer, but he can't tie his cleats. He wants to go to sleepaway soccer camp, but how is he going to tie his own cleats? His fine motor skills are so poor that he just can't learn. So we accept this and modify his cleats so that they open and close with velcro. He still doesn't have the skill, but it won't stop him from doing what he wants to do.
So if a child is headbanging because he is autisitc, parents should just accept that situation? No, a parent will first turn to the authorities on autism in the educational and medical and psychological community. But if that doesn't help, they will seek out alternative avenues and do their own research. And they will carefully consider their options and take a deep breath and jump in.
And I applaud them for it.
Interested,
Be assured that your comment passes any test for eloquence. Thank you for writing, and please let us hear more from you.
Wade
In raising Charlie ("my son who has autism"---"my son"---"my lovely boy"---"my autistic son"), it is part of my duty/m.o./belief as a parent---it is part of my being a parent---not to just let Charlie be "as is." And, while Charlie is and will be my only child, I have come to realize that I would devote as much of an effort to the raising and educating of another child, on or off the autism spectrum.
We parents may interfere with the "as is-ness" of our children, but I'm not sure what kind of parents we would be if we did not at least try.
Wade, you wrote:
I wish I could share the view that autism is a mere abstraction, but that would ignore the multiple disabilities challenging my son on a daily basis.
If you say that, then you don't know what it is that I said.
I said that a certain kind of person exists. That kind of person is an autistic person. I never said that kind of person was a non-disabled person.
Autism is not a genuine object. It does not exist separate from autistic people. It is an abstraction used to tie together all the people known as autistic.
Please tell me where in there I denied that autistic people are disabled, or that our lives (including good parts, bad parts, bad parts mistaken for good, and good parts mistaken for bad, and so forth) are "mere abstractions", because I'd be very interested. I'd also be very interested to know how you could read my blog for any length of time at all and believe that I ignore the fact that autistic people are disabled.
Amanda,
I did not mean to imply that you deny there are disabilities associated with autism, and I certainly apologize if my verbiage created that impression. I was speaking more of the difficulty I have with thinking of autism in an abstract manner. That difficulty may well result from my neurotypical cognition. But neither do I view autism as an "object."
Although the word "mere" was mine, the specific comments to which I was reacting included the statements that "there’s no such thing as autism," and "“Autism” is an abstraction, not a thing."
I view autism as a condition that is defined by disorder. And I do not view it as a condition that is an integral part of my son's personality or "personhood." That is obviously where we disagree the strongest.
As I mentioned at the end of the post, I encourage and invite anyone to read the original comments in their original context.
If you know you got it wrong, why don't you correct it, instead of allowing people to believe what you know (by now, definitely have to know) is a misrepresentation unless they do the extra work of reading every single person's words to make sure that you didn't misrepresent them?
"There's no such thing as autism" means "There's no such object as autism any more than there is an object called womanhood". Autism is an idea. Autistic people are the actual physical reality behind the idea, no matter what kind of value judgement you want to put on the fact that we're autistic, and no matter what kind of lives we lead. I still believe that abstractified thinking about autistic people is one of the most damaging things that happens to us, and that is the idea that I was conveying.
Autism is not a concrete thing. Unless by "concrete things" you mean the abstract phantoms created by your own mind, which given the way a lot of people think, very well could be how you define "thing". If you want to go around hating abstractions in your own head, go right ahead, I guess, but it's not very useful.
Maria's response, by the way, only would address my point if "autistic behavior" were the sum total of what defined whether someone was autistic or not, rather than one possible result in one set of environments of the way autistic people's brains work. And it's not. Unless, of course, again, we want to go all abstractified, in which case, I'm out of here because that's both too far from reality for me and over my head.
Amanda,
If you know you got it wrong, why don't you correct it, instead of allowing people to believe what you know (by now, definitely have to know) is a misrepresentation unless they do the extra work of reading every single person's words to make sure that you didn't misrepresent them?
I don't really think I got my own meaning "wrong," but as there is apparently room for misinterpretation, I have added a note that the reader should refer to our comments for clarification.
"Indeed, the act of intervention requires some level of acceptance. One must accept the fact that a child is autistic. That may not be the type of acceptance that is defining the debate; it is an acceptance of “autism” vis-à-vis acceptance of “the autistic.” But it is just as meaningful in a very important way."
Wade,
I think you are off by a longshot with this part. It's not an acceptance of "autism" at all.
It looks like you've tried to create a facade of acceptance for yourself, where one does not exist.
Not being in denial of the factual truth of a diagnosis, does not equal acceptance of that condition diagnosed. While diagnosis does describe and define the condition, it is easy to see that they are in fact different with a simple test.
Can you have an autism diagnosis without being autistic? If diagnosed properly, no.
Can you be autistic without having been diagnosed? Yes
There is no acceptance of the condition of being autistic required whatsoever to accept a diagnosis as fact, and it's not some intangible level of acceptance. It's acceptance of the diagnosis as fact, period.
Let's use a young balding man's combover as an example:
A young man suspects that he is going bald.
Looking in the mirror confirms that he is balding, right on the top of his head.
He chooses to let what hair remains grow longer and comb it over the bald spot.
Did he accept the diagnosis of balding? Yes, he's accepted that fact as true.
Did he accept "baldness"? Not at all, he's masking it.
Dad o' Cam,
That is not a very apt analogy. Although it is easy for me to say (as I am follicularly blessed), baldness does not carry with it any serious disabilities. If you are defining "acceptance" as "embracing" the condition of autism, then I plead guilty. I can -- and do -- however embrace the autistic. As it relates to my son, the only thing I do not accept is the inevitability of autism in his life. That difference between Amanda, Joseph, and you on the one hand, and me on the other is the crux of this discussion. I cannot deny or hide that I view autism in very different terms. If I wind up being called a "bigot" as others have, I will not be happy because I do not view myself as such. But I'll live with it, knowing that I love and accept my autistic son, and I will continue to do what I believe to be in his best interest.
I'm not saying that you are not acting in an ethical manner if you come to a different conclusion. The fact is that we are all making assumptions about the nature of autism as it relates to the intangible personality/soul of an autistic individual. Therefore, I cannot condemn your choices, and I hope you are not condemning mine.
I don't mind that you view autism in very different terms, for what it's worth. What I mind is that you're responding to things I did not say, but acting as if you responded to things I did say, even after at this point two separate explanations of what I did say. There is no contradiction between the concept of 'autism' being an abstraction, and autistic people being disabled, even severely disabled, in daily life, as a concrete reality. You've taken my autism-as-abstraction thing wrong, and even when I've explained it to you, you still don't seem to want to respond to what was actually said.
Hi Wade
Thank you very much for the edition of my words. As you know, english is my second language and sometimes-even when I do my best- it is not easy to me to present the overall idea. I apologize by the need of edition.
And thank you for your consideration. I also think about you like a friend.
Joseph, you say
Why [do] many of the behaviors associated [with] ASD disappear under certain treatments (not behavioral) with parallel improvements in certain biochemical parameters? If they were intrinsic to the person, there [would be] no way to change, [just] as there are no ways to change the DNA today.
And on María's thoughts above, again, there's no evidence that the claim is correct...
and also there´s no evidence for sure that the claim is incorrect. For me it all depends. In the case of vitamins for example, the benefit would come from the defficiencies (if present, tested and controlled).
Biochemistry in the body can be altered by drugs. My point (and my analysis in general when I considered this approach) was first, to detect defficiencies and second, to treat them adequately with periodic testing. And the same with other biomarkers.
In ADHD there are plenty of records of benefits from vitamins suplementations- and defficiency of certain vitamins upon testing. The mechanisms of function in both cases are completely different.
ADHD is not Ritalin defficiency and neither vitamin defficiencies but vitamin defficiencies can be part of the ADHD.
Amanda, you said
Maria's response, by the way, only would address my point if "autistic behavior" were the sum total of what defined whether someone was autistic or not, rather than one possible result in one set of environments of the way autistic people's brains work. And it's not.
I understand what you want to point out. But the concept of what autism is , is very different depending to who you ask: a doctor, a parent or an autistic person. Related to the medical aspects, ASD is diagnosed based on behaviors, and for me , as I tried to present you, a human being is not a sum up of behaviors.
Unless, of course, again, we want to go all abstractified, in which case, I'm out of here because that's both too far from reality for me and over my head
No, I do not want so . I really want to understand your concepts and only tried to present you that MY concepts, my approach and my view are, that by no way are intentionally unrespectful of the autistic person you are.
María Luján
Hi Joseph
You say
Now, experimenting on kids by giving them all kinds of off-label drugs is something I'm against in principle. (And I don't mean you, María).
I would never consider this because we know from blogging since some time agoand I agree with you in this point, as I imagine you do. I have never experimented with my son and I doubt that many parents do. The problem I consider we have is of interpretation of the sources, based on what the approaches are selected, what approaches are selected and what doctors are involved.
Unfortunately, it does seem to go hand in hand with absense of acceptance.
For me, it all depends on the family and the parents. Each family is a different world.
There are also some "interventions" that are part of acceptance, which are seldom promoted: (1) Teaching self-acceptance, (2) Teaching self-advocacy, and (3) Opposing negative medicalized, demeaning language about autism. I think these are extremely important "interventions"
I agree with you that these are important
-- much more important than the latest quack therapy by the DAN! doctor currently in vogue.
Well I have some thoughts to share with you because there are many aspects to consider following this prompt._The need to avoid the "treatment of the month" is real ; what I do not understand is the focus on the criticism of the parents.
Even more, I do think that the problem here are doctors, in mainstreamed treatments or not, and autism organizations with an agenda very narrowly focused (genetics only or thimerosal only). I do think that what we need is to work in the ideas about what autism is-internationally.-and how Autism is presented to parents and to ask/control doctors in terms of what they offer as alternatives and how they must committ to do all they can by autistic people with open mind (children, teens and adults) and hearing the patient and the patient´s parents. Parents of autistic children must not be mistreated, whatever their scientific background or their knowledge or the information they have. They (We) do the best they (we) can to make the best decissions with the information available to them.Who provide this information/ alternatives (bad or lack of) are for me the problem.
I also think that majority of parents do the most they can by their children, from heart.
María Luján
This comment has been removed by a blog administrator.
(reposted to fix the link)
I’m not sure that we can’t separate autistic disabilities from autistic thought.
I like the words of Frank Klein on this, assuming I’m interpreting them correctly:
"I hold that autism itself is not a disability. That does not mean that many autistic people are not disabled by their condition; I know very well that many of them are severely incapacitated. However, I do not consider these incapacitations to be by the autism itself as much as the surrounding syndrome. I do not think that the sensory difficulties are a core part of the autism, although all autistics seem to have some of one form or another. I do not think that retardation or low IQ is a part of autism either, since it is a function of the sensory problems, not the autism itself (and not all autistics have such problems). I do not think that the anxiety and depression so common in autistics are part of the core condition either. In essence, all of the really nasty things about autism are not actually the autism itself-- they are the things that come with it, but are not core features in themselves. (emphasis added)
"Autism, when stripped of all of the negative things as above, is a condition where the person has more of an affinity for things or concepts than people. Absent the auditory processing problems, autistics (including those with AS) are often well above average in intelligence. Such people become inventors, scientists, engineers, entrepreneurs, and innovators, if they are permitted to use their unique abilities and not have their self-esteem crushed by the unyielding pressure normal people exert to conform and to be social. People that like to think about science and engineering rather than parties and socializing are vital for the advancement of humanity. Far from being impaired or disabled, these people simply have abilities in different areas than normal people-- abilities that are vital for society. As such, autistic people, and autism in general, should not be pitied or cured (as in the elimination of autism). By all means, we should help autistic children to use their senses in a useful way, which will connect them with the world and allow their speech and intelligence to develop. They will not be normal, but that is OK. Genius and greatness are abnormal, after all."
I tend to see autism in a similar way (although to be clear, I don’t expect that Frank Klein endorses my views or resulting actions). I tend to think of autistic thought or autistic cognition as part of the person. Such thought is probably shared by those who are part of the broader autism phenotype (BAP). I see nothing wrong with that thought, and I would definitely characterize myself as being at least part of the BAP, and possibly even an Aspie, as Joseph suggests (except that Asperger’s requires ‘clinically significant impairment’, and I’m not sure I meet this requirement).
I would suggest though that the genetic underpinning from which autistic thought is derived also carries with it a vulnerability to autistic disabilities. I see these disabilities as separate from autistic thought, as evidenced at least in part by the fact that not all who have autistic thought share these disabilities or share the same set of disabilities. I’d suggest that it is these disabilities – specifically sensory integration issues – and not autistic thought per se, that those who wish to cure autism want to eliminate.
In my daughter’s case there are medical issues that I believe may be related to her SI issues. I don’t believe that they are significantly related to her cognitive processes though, except perhaps through making it more difficult for her to perceive her world and act on those perceptions (e.g. impacting motor planning capabilities). I definitely think that the medical issues may be related to her SI issues.
It is these medical issues that I am attempting to ‘cure’ – issues that were identified through very mainstream testing by labs that don’t give a flying white lab rat about the DAN! Protocol. These issues are accepted as valid by my daughter’s pediatrician and her GI specialist, who are also non-DAN!. If I am correct that they are related to her SI issues then we may see improvement as we treat them. (And for those who say there is no connection, please identify the peer-reviewed research that proves this – which is not the same thing as showing that not all autistics have the same medical issues.) If I am wrong then these issues are still worth treating in their own right. As such, I have no expectation of ‘curing’ my daughter’s autism, which I accept as a cognitive process in both her and probably myself, but I am definitely targeting her autistic disabilities, which I want to ‘cure’.
Perhaps part of the ‘cure’ vs. acceptance debate is due in part to terminology, resulting from ‘discovering’ autism in the wrong order. It is natural that as our understanding of autism would move from first identifying the ‘severe’ condition and only later recognizing less and non-debilitating forms and variations. Given that autism was ‘discovered’ before the BAP, autistic thought goes under the label of autism. But does the fact that autism ‘pre-existed’ the BAP in medical parlance require the BAP to be a milder form of autism? Or is autism really the BAP plus the expression of one or more vulnerabilities? If it is the latter then one could wish to ‘cure’ the disability while fully accepting the cognitive processes, i.e. accepting neurodiversity. Sometimes the order in which you look at things can change the result.
Joseph said: "Let me be frank..." and there the confusion started.
(Sorry, I thought it was mildly humourous)
I disagree with Frank Klein on that though (and with a lot of other autistic people). I do not think it's so easy to parcel out autistic thought into "good" and "bad" without noting that the so-called "good" and the so-called "bad" can be so firmly attached to each other that pulling on one part means affecting the other.
For instance, the things that are misnamed as "sensory integration problems" are primarily results of a particular autistic perceptual style. That same style is responsible for both autistic cognitive strengths and autistic cognitive weaknesses, as well as, as far as anyone can tell, many of the different patterns of being autistic. The naming of such things as "good" and "bad"... well these are parts of the same thing, two sides of a coin, not things that can simply be chopped up and sliced and diced and surgically removed without affecting each other.
That's why there has to be more consideration given to things like this than simply assigning value judgements to perceived "good parts" and perceived "bad parts", acting as if they are not attached to each other, acting in fact as if they are not part of a fairly seamless whole, and trying to remove some and promote others. It reminds me of people who write characters for stories or roleplaying games and don't want them to have any of the flaws that the particular kind of character they're writing has to have in order for them to be that kind of character, so they write an artificially perfect character that really misses the whole point of writing one. It doesn't work any better in real life, in fact I think it's worse in real life.
None of this, lest what I say be confused or quoted out of context again, means ignoring that autistic people have particular strengths or weaknesses, or advocating not learning, or anything like that. But it does mean at least acknowledging the possibility that our greatest strengths and our greatest flaws (as defined by, whoever is watching) are intertwined and have to be dealt with a whole lot more carefully than Klein is doing when he says things like that.
The greatest strengths and the greatest weaknesses of NTs (using that word to mean more than just non-autistic) are intertwined as well, and I think they would object just as much to being chopped up into little pieces like that. How many NTs want to lose large chunks of their ability to function in their best possible way of functioning in order to be able to perceive the world more directly when necessary? What if we just started yanking on the "NTs have these dangerous inabilities to perceive certain aspects of what's going on" part indiscriminately, and ignored their protestations that there are ways of working around these weaknesses and that there is great value in the way they are? What if we told them we were only "treating their deficits", and in the course of so doing, rendered them (in a general sense, over a population, subject to individual variation) more susceptible to overload and less capable of certain kinds of decisionmaking, socializing, moving, and perceiving their environments, that had always been a giant part of who they were? What if we totally reorganized the way their skills fit together, all because we wanted so badly to treat their deficits?
I know that someone is going to tell me that the analogy is not a valid one because autistic people are disabled and NTs are (generally) not. Extend my analogy to a society that has no accommodations for NT weaknesses (all current societies have amazing amounts of accommodations for NT weaknesses) and in which NTs are potentially considered severely disabled and even at more frequent risk of death if you have to, but the analogy, in terms of what you very well could be doing to the inside of a person, stands, and I'd rather not get lost in technicalities here.
The point is you have to think a lot harder than just dividing autistic people up into conventional strengths and weaknesses and saying the weaknesses are just side "co-morbidities" tacked onto an otherwise fairly uniform kind of autistic person, and can be therefore removed (I always find the notion that I should be "cured" into some other kind of autistic person almost as insulting as the notion that I should be "cured" into a totally non-autistic person). So, in that regard, I have to break not only with most non-autistic people, but some autistic people. But I'm interested to note that while I first noticed these things years ago, I'm not breaking with some of the most recent autism research on this one, which seems to show everything I just said and more.
So... yeah. It's way more complicated than just "Here's a strength. Here's a weakness. Lop off the weakness and we're all fine." (An attitude that has always seemed to me to hide some questionable values underneath it when it comes to disability in general, as if it's that easy to decide what is "defective" and what is not.)
I think a big problem with the "cure" mentality that is so offensive is the idea that certain parents just KNOW that they were supposed to get (promised by god to get; destined to get...) a really ideal child. Then some evil force came along and ripped the normality or near normality in the case of Maria's version for her child, away from the child. Once the parent decides that he or she is wide open to be hit by the hucksters who are more than willing to agree that that child was indeed born to be nearly perfect (a future president of the United States, a future rock-star, a future Harvard law school grad...) and that if the parent will only fork over a few thou then the huckster will gladly return that child to his predestined state of near perfection.
That being the case, it's merely up to the huckster to decide how dangerous the treatment will be. The more dangerous the treatment the more emotionally invested the parent may become in seeing results. This can turn in to a cult situation where paernts have kids who are developing as they would without the "cure" and the parents attribute all the gains to the cure.
And since the parents are so sure that a perfect child lies at the end of the rainbow, dangerous treatments are totally acceptable. Big Geier (as opposed to little geier) explains how "these children" are in such heinous condition that while you might not try certain drugs out on them, it would be worth risking the side-effects if you could "cure" the child and make him normal again. This was in Big G's interview on "radioliberty," wherein we learn from the host that fluoridation is a plot to control the populace since it makes them docile, and Hitler and the Soviets used fluoridation for this purpose... cue the spooky religious music.... cause radioliberty is all about saving the christians in the US from the plots of the the evil people who want to hurt our children....
Whatever, Wade if you think your son was born normal and would never had regressed into the "hell that is autism" (quoting David Kirby ... where is David anyway?) you can go for the cure. Go for the gold salts, go for the HBOT, go for the Lupron, go for the megadoses of vitamin A, B6 and B12. I just hope you don't hurt him in the process or communicate to him that you want that perfect little boy of your dreams and not the perfect one that you have.
Hi Mr Usuario anonimo
You say
I think a big problem with the "cure" mentality that is so offensive is the idea that certain parents just KNOW that they were supposed to get (promised by god to get; destined to get...) a really ideal child.
I am very sorry but you are discussing here things I never said, thoughts I never had and you are implying ideas I never discussed. I have "no normality or near normality ideas" about my son. You do not know me- you never asked BTW- to know the why, who , based on what, expecting what and considering what clinical findings I am doing what I am doing-BTW, you have no idea what I am doing don´t you?
In parts:
1- I have no "cure" mentality
2- I do not know what I was supposed to get. For your information to be a parent implies for me the commitment to be parent of the child you have, beyond is "perfect" or not.
3- This prompt " Then some evil force came along and ripped the normality or near normality in the case of Maria's version for her child, away from the child." is totally of your own and I have nothing in relation to. My child is who he is , nothing ripped nothing from him, nothing put "something" to him and I am not "trying" to make return the NT that "something" stolen to me.
I wonder honestly in what second you decided that you have all the answers, know all the facts and have the right to insult in advance to anyone who is thinking different than you- me in this case-, inventing your version of my thoughts, expectations and dreams, that BTW you know nothing about.Sadly, these words talk a lot about you than about me. Therefore, in a final reading, I will let your words to speak by themselves; that is unfortunate in the climate of civil exchange we have been constructed here.
María Luján
"Anonymous" said: I think a big problem with the "cure" mentality that is so offensive is the idea that certain parents just KNOW that they were supposed to get (promised by god to get; destined to get...) a really ideal child. Then some evil force came along and ripped the normality or near normality in the case of Maria's version for her child, away from the child.
From my standpoint, that is a stereotyped view that is every bit as wrongheaded as saying that all autistics need to be cured, etc. There is never any promise or destiny when parents choose to bring a child into the world. And I certainly learned from my two NT children that I better not try to have my own specific hopes and dreams for them, because they might just have other ideas. Actually, I knew that one already because that's the way I was raised.
This is not about creating my ideal vision of a child like some Frankenstein monster. This is not about trying to make my dreams come true. It is about trying to enable my son to find and live out his own dreams.
I stress that I speak only for my wife and me, although I also feel that other parents I have come to know well enough to judge their motives feel the same way. I have seen comments by some parents that may feed the views expressed by anonymous, but I don't know those parents well enough to sit in judgment of them.
In so doing, we use a variety of interventions, including biomedical treatment. Any medical treatment requires deliberate consideration and assessment of potential benefits against known (and unknown) risks. We (meaning my wife, who is a highly competent medical professional, and I) take that responsibility very seriously.
My practice at this blog is not to discuss the specific protocols we utilize. It distracts from the more general policy discussions I favor, and there are certainly other blogs you can go to to discuss the merits and demerits of those methods. I will not bite at the bait in your last paragraph to discuss specific protocols, some of which we may not use.
Ballastexistenz wrote:
”I do not think it's so easy to parcel out autistic thought into "good" and "bad" without noting that the so-called "good" and the so-called "bad" can be so firmly attached to each other that pulling on one part means affecting the other.
For instance, the things that are misnamed as "sensory integration problems" are primarily results of a particular autistic perceptual style. That same style is responsible for both autistic cognitive strengths and autistic cognitive weaknesses, as well as, as far as anyone can tell, many of the different patterns of being autistic. The naming of such things as "good" and "bad"... well these are parts of the same thing, two sides of a coin, not things that can simply be chopped up and sliced and diced and surgically removed without affecting each other.”
Right off the bat, I would say that SI issues are not ‘thought’ (good or bad), but perception of surroundings or environment, which obviously influences thought. As such, I would restate the above as parceling out autistic thought processes vs. various types of autistic perception, holding the view that thought and perception are different (but again, related) and that there is not ‘one’ autistic variant of either.
But let’s use your words, that they are ‘parts of the same thing’. How do you know this? Since we possess only one brain, the “good” and the “bad” thought originate in the same general location, so you ‘know’ how your thoughts and perception appear to you. But how do you know that the two are related, i.e. lose one and therefore lose the other? And how do you know that they are related in others?
I would suggest that our perception of the world is related to how our senses physically perceive it (e.g. sound waves striking our ear drums, causing them to vibrate), how these physical inputs get translated into nervous system inputs, how our brain organizes and interprets these inputs, and then how we become conscious of them, based on our cognitive skills shaped by our experiences. If SI issues modify the input, either in the translation into nervous system inputs or in organizing and interpreting them, then the perception of these inputs will be altered, before they affect cognitive thought.
When I was a kid I had phenomenal hearing (it was tested, and my ability to perceive and distinguish between different sounds and identify changes was at the very top end of the chart). I could hear and effortlessly follow conversations just about anywhere in the house (much to the dismay of my parents at times). Did this alter my cognitive capabilities, or did it only affect inputs? My hearing is now degraded with age and too much loud music (it is now pretty much normal, with damage within a small frequency range). Has this affected by cognitive capabilities? If I become deaf, do my cognitive processes and capabilities change? What if I lose my olfactory senses (most males experience a significant degradation over time)? Will I think differently?
From reading your spoons post, it appears that you can use cognitive thought to force or amplify sensory inputs and perceptions, as I would suggest that everyone can (e.g. making a conscious effort to listen in to a conversation across the room), although as you suggest, this may require significantly more effort for some than for others. But I would argue that this is compensation for SI issues, and if you were not forced to do this that your cognitive capabilities would be unchanged but available for other uses.
I would suggest that SI issues are a separate component from autistic thought, in part because they are neither universal nor identical among all on the spectrum. Some have minimal SI issues, some have different issues to yours, and some have different degrees of SI impact. Do they not have autistic thought too? Is their thought less valid, or less autistic? I would say no.
A key distinction also needs to be made between thought and experience. Obviously the two are linked, and experience plays a key role in who we are and become in life. But I would suggest that one can change a person’s ability to experience something without changing the validity of their underlying cognition. For an extreme example, look at Alexander Solzhenitsyn. To be clear, this is not to compare autism to the Gulag, but is rather an example of the effect of extreme experience on a person. Would Solzhenitsyn have been a different person if he had not gone to the Gulag? His experiences would have been different, and his perception of the Soviet state would clearly have been different. He might not have been as good a writer, and his subject matter would definitely have been different. His personality may have even been different. But would Solzhenitsyn as a person be any less valid or authentic or true to himself and his own nature with this altered set of experiences? Would he still be Alexander Solzhenitsyn? I would answer that while he would not be the Solzhenitsyn we know, he would still be Solzhenitsyn, and an equally valid one, still true to his own self.
One’s ability to perceive the world will definitely alter one’s experiences, and experiences definitely shape us. My daughter’s SI issues are definitely affecting how she perceives the world. But if her SI issues are ameliorated, does her cognitive capability change? I’d suggest that it may, as she is better able to process incoming information, but that any change would still be equally valid, and any outcome would be equally true to who she ‘is’. Would her view change? Probably, as again, these can be highly shaped by experience. But would she still be autistic in thought? I would say yes.
Joseph writes:
” Amanda makes some good points. It could be summarized as "there's no such thing as a free lunch". Incidentally, Mottron's research appears to confirm this. The more "impaired" an autistic individual is, they seem to have more of certain types of abilities; which, in general, invalidates the notion that a classic autistic is just an unfortunate BAP.”
Do you have a link and examples? I'm curious how much of altered abilities is a result of altered focus and development. If I am unable to do 'x' and 'y' due to SI issues I may focus more on 'z', resulting in heightened capabilities in this area. It does not necessarily mean though that if I am enabled to do 'x' and 'y' and therefore spend more time in these areas, with therefore less effort spent on 'z' that this is any less valid an outcome.
"I don't know those parents well enough to sit in judgment of them"
Hey Wade,
Didn't you know long range ESP is an autistic gift?
Hi Joseph
You said
After exchanging many messages with you, I do get the sense that you're not a full-fledge curebie, so to speak. But it is also true that you seem to think that your son should have been an Aspie only, and that unfortunately something happened with environmental insults that made him fully autistic. Is this an incorrect representation?
Yes, because I never do assumptions about what would have happened if... For me it is not emotional or real thinking and in my personal opinions I would be unfair with my son. He is who he is today and I love him whatever how he is. There are no conditions or IFs. I found a lot of medical conditions. Because I do not know- and nobody does- what could have happened if our elections (my husband and I) were different about my son´s health I do not consider this productive.
I believe you said your husband is an Aspie? And to be blunt, would it be correct to say that you're also in the spectrum or somewhere near? (Sorry, I'm kind of like the gay person who sees gays everywhere). If so, I think it's pretty clear that what we have here is a case of assortative mating. It's not at all surprising that you have an autistic son. Do you have additional children? To be honest, I'd be surprised if any additional children turned out to be NT.
Well, yes I have another child that is NT. And yes, I consider that both, my husband and I , are in the spectrum. With my current knowledge about myself and my husband I understand better the situation in terms of genetics.
I don't think it's a bad idea for you to do proper labs, consult doctors, and start safe treatments that doctors have recommended in good faith.
However, do you recognize that these treatments might not be useful in moving your son "up the spectrum"?
Absolutely . My intention is not to move him "up in the spectrum". I want to give him the best chance to do his own decissions and to have the most independent and happy life I can- related to medical conditions I detected. What I consider is that in advance I do not know if this possibility (move him up in the spectrum) exists or not. Therefore my position is to treat adequately the medical conditions I found in him to avoid him the negative consequences of the non-treatment of these conditions. If additional benefits come, they will be welcome, but they are not expected for sure and this is not the main reason to do what I do.
Gains you see could very well be due to his natural maturation.
I do not think so because of the clinical studies we do periodically. Gains are always correlated with clinical changes in positive trends. I do not discard that natural maturation is part of the gains. For me , remember always is and AND not an OR. Please contact me if you are interested on more details.
Also, when you speak of all the possible environmental triggers, I get the sense that you blame yourself for doing something to your child. Am I wrong?
Yes, Joseph, you are wrong. As you know after the diagnosis all of us have a path of personal growing, evolution and acceptation, different for each family and for each parent. I do not blame myself or my husband ( in terms of genetics)or the fate or life. Life is too much wonderful- and short- and have a lot of challenges to consider blame in this kind of situations. Nothing is for granted, never. To be and adult implies for me to be conscious of important things of life: Love , family, friendship, acceptation of what life brings and Honoring life. And I try to honour life ( of my children and of any person in contact with me) in all the aspects of my life. Even when I think that , as you know, my son was affected by many things (including xenobiotics and vaccines) because of his genetic susceptibility I do not blame myself because all was done considering the best information and medical advice available. Now, after some time, I do not blame even doctors- peditrician specifically-, that many times do the best they can -and the best they know with the information provided by the researchers in different fields. It is not easy to accept that this kind of situations happens because of we do not know scientifically enough about ASD, IMHO, and there is no way to detect genetically susceptible children from birth, but I have accepted it. And this is my position today. I do think that all the potential stressors were so for my son- And I listed to you in Kev´s blog. But We did not know when he was "exposed" to them. We did the best we can and therefore there is no space to blame.
The point for me is what I did and I do after the knowledge of all what I found. My point is that the efforts to detect these children can be done. and this is the reason why I think that research must be the most open minded and wide in terms of possible causes/collaborators/environmental contribution.
Ian: I know because some of the latest research is showing what I suspected, to actually be the case. What I said is something I'd suspected before, but that is now backed up by science, some of which explains apparent discrepancies in earlier research. If you want to read that science, I'd suggest starting with this study and all the surrounding ones in the JADD the past few issues that I mostly can't get at because I'm not rich and the local university won't have them until next year. (That one, though, is worth paying for if you can spare the money, it summarizes a lot of the other stuff.) So this isn't all extrapolated out of my own head, and it's not even extrapolated out of the heads of the hundreds of autistic people I've either known or read about, it's extrapolated out of various experiments and so forth. It could well be wrong, but from what I've seen there's more backing for that particular idea than any of the others, and fewer holes in it. (It was also well-nigh impossible for me to read, which is a serious drawback, but translation helped.)
One of the new things that's coming out of this research is the very definition of "thought" is being altered. Some of the best autistic thought is more heavily slanted towards what cognitive scientists have with a great deal of bias called "mere perception" as opposed to "higher-order thought". For instance, pattern-matching is apparently not considered "thought" despite the fact that many of us use it for everything from using and understanding language to perceiving our environments. Your saying it's not real thought is just more continuation of the bias.
"SI issues" are an outsider's interpretation of what happens internally because of the fact that we perceive the world differently (more directly) than usual. And they're a flawed, faulty, and crude construct that has more to do with a way to put a simplified version of events in someone's head than an actual true description of what's happening. It's not the "senses" that are different, it's the entire system of perception. You can't separate that out in an autistic person.
Many of the different manifestations of being autistic are just different ways that autistic people develop, and what skills they end up gaining govern what skills they end up being perceived to have and not have and even "functioning level". To give my very-common example, I have a friend who was said to have "progressed greatly" at the same age that I supposedly "regressed greatly". The main difference between us at that age was that her areas of brain focus included and required areas that involved mimicking non-autistic behavior to some extent, including the ability to speak. Mine did not whatsoever, and things like speech were viewed by my brain as optional as a consequence. Thus, I got considered "low functioning" in a few years, and she got considered "high functioning" in a few years, despite the fact that we are and continue to be very similar in our ability to actually do things in the world. People are usually incredulous when we say this in person, but it's true.
The new theory suspects that even whether a person becomes "Asperger's" or "Kanner's" may depend simply on where specialization happens, what the brain focuses on as important and unimportant at various crucial stages. The underlying mechanisms (the way perception and skill organization works) though are similar apparently.
Blind people don't develop super-good hearing. One of the huge disappointments in research of that nature was when Helen Keller, for example, was shown to have no more sensitive sense of smell than anyone else. What she had was a greater perceptual ability to interpret smells because she paid more attention to them. Which is a great explanation, by the way, of why "sensory integration issues" doesn't quite address the perceptual differences in autistic people: We don't have stronger sense organs, we have less brain-generated blockage of what we're perceiving.
Hi Joseph,
I would agree that senses have a significant effect on cognition, but would suggest that it is from the POV of 'experience' rather than being connected directly to innate underlying thought processes.
Way of being is affected by a variety of inputs, and experience would obviously be an important contributor. My point is not that experience is not valid, but that different SI capabilities could result in equally valid ways of being that are equally 'authentic', rather than constituting, (as Wade mentioned, referring to the views of others) "an alien force power(ing) their bodies".
If I lose my hearing then my way of being will change and I will adapt. I will have a new and different set of experiences over time. But I will still be me.
Regarding my hypersensitive hearing and my daughter, I have long recognized that there is a significant genetic input to autism.
Hi Joseph
My other child is a girl and she is 9 years old.
About placebo effect I do think that many times love, effort and supports are extremely important, specially in children, even with a neurodevelopmental disorder. I understand that you are skeptical but I wonder how the placebo effect is not some kind of positive effect of parenting in biochemistry- that obviously is not measured biochemically but behaviorally. How do we know if effects on mood/behaviors of higher level of attention, play or shared time are not correlated with positive compensatory biochemical effects- where possible- at least obviously partially? We are talking of real human beings and therefore the strong effects of love and support can not be ruled out. For me it is not possible to reduce all the extremely rich interactions parents- children to the evalution of behaviors, even by a trained doctor, of some positive effect. Time and maturation have their importance in children therefore I am skeptical on placebo measurements. This is why I prefer biochemical tests in terms of improvements of medical conditions ( and I do the best I can the more frequently I consider is reasonable).
Ma Luján
Hi Ballastexistenz,
I think I have the paper to which you referred, although it is in my read pile as opposed to actually having been read.
You wrote:
”One of the new things that's coming out of this research is the very definition of "thought" is being altered. Some of the best autistic thought is more heavily slanted towards what cognitive scientists have with a great deal of bias called "mere perception" as opposed to "higher-order thought". For instance, pattern-matching is apparently not considered "thought" despite the fact that many of us use it for everything from using and understanding language to perceiving our environments. Your saying it's not real thought is just more continuation of the bias. One of the new things that's coming out of this research is the very definition of "thought" is being altered. Some of the best autistic thought is more heavily slanted towards what cognitive scientists have with a great deal of bias called "mere perception" as opposed to "higher-order thought". For instance, pattern-matching is apparently not considered "thought" despite the fact that many of us use it for everything from using and understanding language to perceiving our environments. Your saying it's not real thought is just more continuation of the bias.”
I’m not sure this is consistent with Joseph’s RPM vs. Weschler link:
”The conception of low-level cognitive processes in autism being “intact” or
“enhanced” versions of exactly equivalent cognitive processes in non-autistics, and being
coupled with high-level processing deficits, cannot explain the autistic peak in RPM.
While low-level perceptual abilities, as currently conceptualized, can be employed to
perform RPM, they cannot be employed to perform RPM successfully.”
I interpret this to mean that the authors are suggesting that higher order processing is required to ‘successfully’ perform RPM. If so, pattern matching would be ‘real thought’. But for what it’s worth, I’m not discounting perception, which is obviously important. A view of consciousness I’ve heard is that of a waterline, with everything above as consciousness, and everything below and invisible as subconscious. I’m suggesting that SI happens below the waterline, and perception is what appears above the waterline. With effort, one can consciously re-interpret what is available, performing this act above the waterline.
Regarding SI, I think we have different understandings of what this means. I interpret SI not as a technical capability (e.g. the ability for the ear to pick up frequencies outside of the normal range) but the ability to process, integrate, and interpret these signals. The blind example was Joseph’s, not mine, and my point about ‘altered focus and development’ is the same as your point that “What she had was a greater perceptual ability to interpret smells because she paid more attention to them.”
Where we will probably disagree, or are at least ‘talking’ past one another, is that I believe that perceiving an input is not the same thing as integrating it into meaningful information. To interpret based on your spoons post (and I’m going by memory here, so if I get this wrong I apologize in advance) you might look out my front window and see a shape, and then interpret it (perhaps but not necessarily consciously) as a collection of lines and colours, and then with more effort as a car. My perception goes straight to car, dropping the details that are (to me) superfluous to this identification and labeling. To me, SI does not mean being able to perceive the details but instead to be able to integrate them into useful information for me at this place and time (which may be different from what others consider useful in their place and time). You might call my lack of perception of the details as brain-generated blockage. I would call it perceptually getting to the point based on my requirements. If I were not able to integrate this information then what I would be left with is the component details, i.e. heightened perception when viewed through a different lens. Having this ability to integrate and interpret into a picture that is meaningful to me as I require it is what I’m referring to as SI. Perhaps I am misusing the term?
Joseph, the only people who say that acceptance means doing nothing are people who are arguing against the idea of acceptance. It is a use of the argumentum reductio ad absurdum by people who know perfectly well that nobody advocating acceptance advocates doing nothing. It bugs the hell out of me, but what can you do?
Wade, if you don't like baldness as an analogy, how about obesity?
Obesity is the result of genetics and environmental factors. True, it's not a recognized disability, but certain physical problems are associated with it. It is a social disability for sure.
If somebody says that fatness should be accepted, it is not the same thing as saying that people should let their kids eat only Krispy Kremes and watch TV all day. It could mean that people should give their kids a healthy diet and plenty of exercise, but leave off on all the other demeaning, shame-inducing bs that gets directed at fat people, and give up the idea that there is a thin person inside screaming "let me out!"
Does that work?
Is it just me, or am I the only one who thinks that there may be just an oh so slight difference between being left-handed or gay (the other often used example) vs. being autistic?
Going back to perception/SI issues, I've never heard of someone who can't drive because of the impact of being gay, or can't talk because they are left-handed, or having to choose between looking someone in the eye and listening to them because of either condition. Not all autistics have these issues either, but those who do would probably agree that the issues are related to their autism.
Obviously being gay leaves one vulnerable to societal prejudice (which is probably minimal for lefties these days but was more of an issue in the past) and is a not insurmountable impediment to procreation, and being a lefty carries with it a slightly greater risk of accidental death. But I've never heard of either requiring accomodation or support for self-care or independent living due to their condition.
Ian,
You require a considerable amount of support. If we dropped you off on a deserted island tomorrow, you would probably survive (you're educated and I'll assume not physically disabled), but your life would be very different due to your condition (inability to provide everything that you had in your previous life). The life you have right now is highly dependent on many many others - it's only self-care in societal context.
Hi DoC,
I'm not suggesting that I don't live in a society in which mutual dependence exists, or that I require as much support as others.
What I am suggesting is that being gay or left-handed is not analogous to being autistic in terms of level of disability, using the following definition from the WHO: "any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being."
I'm not aware of any disability associated with being left-handed or gay that is not equally associated with the being a member of the general population. Are you?
I would suggest that many autistics would accept that there are disabilities associated with being autistic (I will quote mine if you wish), again, recognizing that not all autistics share those disabilities. As such, gay and left-handedness, as conditions with no particular disability, are specious examples.
Heck, if these examples are valid then why not consider pale skin (inability to tolerate prolonged exposure to sun, increased risk of certain skin cancers) or brown eyes (increased risk of cataracts) as disabilities analogous to autism too?
Ian: A couple things, in response to a couple of your comments.
One, I didn't say they found that autistics have no "higher-order" thought, only that some of our problem-solving is coming from so-called "perceptual" processes and that in autistics "perceptual" processes have far more autonomy from "higher-order thought" than they do in non-autistic people. Here's the exact quote, from an explanation of some of what they're on about:
I'm not sure what you mean by automatic. One of the 8 principles we propose (this is in the review) is that higher level cognitive processes are mandatory (automatic) in non-autistics, but optional in autistics.
This would result in a necessarily limited role for "lower level" cognitive processes, like low-level perception, in non-autistics. Because cognitive processes (and brain areas) get described according to how they work and what they do in typical people, this means that perception has been defined in a very limited way. This is why we concluded (from Mottron et al, 2006):
"A successful, problem-solving use of perceptual areas leads to a reconsideration of the definitions of 'perception' and 'perceptual areas' as well as of the relation between perception and general intelligence in autistic individuals."
Perception, and perceptual areas in the brain, just aren't supposed to solve problems. They are supposed to be "merely perception". They don't get a lot of respect (anyone can do perception!). We disagree. And one way we disagree is to propose that non-autistics are stuck with these mandatory, automatic higher-order processes even when they are detrimental to performance on various tasks.
Other part:
Being left-handed is potentially disabling, even potentially fatal (think power tools), in a world that is exclusively designed for right-handed people. The world is no longer as exclusively designed in that manner as it used to be, so it's harder to see left-handedness as it used to be seen. Since disability can't be understood except in relation to the person's environment, this is relevant, even if being left-handed is far less disabling today (because of environment changes) than it used to be.
But to me, the issue isn't even whether being autistic is "a disability" (which is, despite any semantic sloppiness I might engage in, a meaningless debate, and a meaningless term, to me), but whether it is something intrinsic to who you are. Bringing in examples of other things that are intrinsic to the way people are, is not irrelevant, even if they're not considered disabling.
Ian Parker wrote...
Is it just me, or am I the only one who thinks that there may be just an oh so slight difference between being left-handed or gay (the other often used example) vs. being autistic?
__
Ian,
It's not just you.
My son has autism and happens to also be left-handed. As a result of being left-handed, he prefers not to write with a pencil because it smears easily as he travels along the page. He's also annoyed by the fact that he's routinely plagued with the task of removing random, albeit colorful, marks from his left hand - an inconvenience, to be sure.
As a result of his autism, he has some difficulty with tasks requiring fine motor skills. He seems to struggle slightly with control and, as a result, his writing is rather large and imprecise. (His Os often look like Es and 4s sometimes look like 9s.) He also has a tendency to place letters too close together and fails to adequately space between words. In short, his writing can be difficult to decipher -- even for me. Nevertheless, he is proud of his accomplishments (rightly so) and frequently asks me to read his works aloud. As I read his literary masterpieces, he seems to realize (as evidenced by his intense frustration) that these issues go beyond being inconvenient. Although his limitations in this area don’t prevent him from experiencing the joy of creating, they do inhibit his ability to easily share that joy with others.
All in all, though, these issues pale in comparison to others.
Mary
Hi
Ian , you said
_Is it just me, or am I the only one who thinks that there may be just an oh so slight difference between being left-handed or gay (the other often used example) vs. being autistic?_
It´s not just you. For me, it seems that some of the situations that can be perceived as analogies could be (depending on the individual) partial analogies for some kind of difficulties.
My son is 5. He uses both hands and -looking for writing- sometimes left; sometimes right hand. He used to have low muscular tone therefore drawing was a real issue. Being hyperlexic and very interested in writing, he sometimes also becomes frustated because he can not draw letters exactly he wants. I am using several programs to help him- I found in the web BTW- therefore he can practice playing. However, the fine motor issues remain, even when gross motor issues have improved. From here other problems are also evident: attention for example. I consider so complex and interconnected all the different mechanisms that are shown as a desired action ( writing , reading) that no simple examples can be considered as such in the case of ASD.
Ballastexistanz
You said
_"the issue isn't even whether being autistic is "a disability" ...but whether it is something intrinsic to who you are."
Well; I agree partially. Genetics is intrinsec for me. Brain structure- that can not be changed- is intrinsic for me. Physiology and functioning can be - sometimes- modulated (if altered) depending on the case. All the results of interactions of genetics with environment are not, for me. The difference in interpretation is if EVEN ALL the results of genetics + environment are considered intrinsic to the autistic person or some conditions that can be detected/treated/healed properly and improve/ enhance the autistic intrinsic abilities and life quality (not in terms of "normalcy") but under the own terms of autistic thougts and in this sense are extrinsic- adquired. BUT not all the results of genetics and environment produce a medical condition because there are a lot of regulatory process that maintain equilibrium at a systemic level. My point, what if the foggy thinking, headaches, confussion for example- present sometimes in my son- can be assigned to a particular medical condition that can be detected/treated/healed (perhaps not completely), affecting positively mood, behavior and perception?. Even with partial relief, I consider that it is worth the trying.
For me there are no such condition _to compare easily_that involves the genetics plus environment at a such profound level, considering that all the physical, cognitive and neurological levels. In my personal interpretation, because of heterogeneity of the genetics differences – not only one gene-and the extremely individual character of the particular triggers it is difficult to find correct – to say –analogies because they are somehow irreal in the sense to consider autism like a total adquired condition. Some doctors have mentioned adquired diseases in front of environmental triggers- that produce physical symptoms without impairment of cognitive and neurological levels in many cases- but I think that this in particular are very bad comparisons (even when genetics is involved also) because of the assumption of this adquired situation- completely. “Under this trigger, this situation follows” is very simplistic to be applied in the ASD field.
HEre there are some published manuscripts about how almost any disease can be considered result of genetics and environment in the field of genetic epidemiology:
Bias in Association Studies Resulting from Gene-Environment Interactions and Competing Risks
Alexis Elbaz and Annick Alpérovitch
http://aje.oxfordjournals.org/cgi/content/full/155/3/265
Selection Bias in the Assessment of Gene-Environment Interaction in Case-Control Studies
http://aje.oxfordjournals.org/cgi/content/full/158/3/259
Another
http://cebp.aacrjournals.org/cgi/content/full/11/6/505
Quotation
“In the search for causative agents of human diseases, both environmental and genetic risk factors have been identified. The relative influence of the two is highly variable, yet for most diseases, it is unlikely that purely environmental or purely genetic etiologies will sufficiently explain the observed variability in disease occurrence.”
Therefore each medical condition is different AND in the case of ASD I do think is particular and can not be analyzed such as an infectious disease or even more other different non-infectious diseases.
Particular circunstances of nutritional status, general health status at the moment of the exposure to the trigger- even if the genetic susceptibility is present, are of extreme importance, it seems, always for adquired medical conditions. Children are always the most vulnerable. Therefore there are intrinsic and extrinsic conditions to be analyzed for me in ASD. In intrinsic we can consider mood, cognition, personality, behavior, character but, how affects for example extrinsic factors –diet, nutritional status- all these aspects?
I included cognition because of recent published manuscripts of the importance of nutrition in cognition
1-Searching for ways out of the autism maze: genetic, epigenetic and environmental clues.http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=16808981&query_hl=1&itool=pubmed_docsum
2- Tangled webs: Tracing the connections between genes and cognition. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=16764847&query_hl=1&itool=pubmed_docsum
3- Iron deficiency and impaired cognition in toddlers: an underestimated and undertreated problem. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=16356022&query_hl=4&itool=pubmed_DocSum
4- Review of the evidence linking protein and energy to mental development.
Grantham-McGregor S, Baker-Henningham H.http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=16277829&query_hl=4&itool=pubmed_DocSum
How modulate them the extrinsic factors? My concern is how both are interconnected and how and IF treating extrinsic conditions, some intrinsic- but not genetics- in terms of behavior, mood, interactions are somehow affected positively in terms of making the life easier/ happier/ more confortable for the autistic people.
Perhaps the point is to discuss /clarify what is intrinsic and what is extrinsic.
I am presenting all these considerations because honestly I consider this topic difficult to analyze, due to the enormous amount of elements to consider and I am trying to present properly the idea-and still I am elaborating it.
Perhaps in societal terms the possibility of comparison with other conditions that also produce social impairments can be useful, but are not representative. The same as for left handed and homosexuality. The cases of baldness and obesity are related to social standards of appeareance, IMHO.
María Luján
Hi Ballastexistenz,
I’m not sure if some of the difference in what we’re discussing is related to definitions of SI and perception, and I’m definitely open to the possibility that I’m using the word ‘perception’ (as it relates to thought) incorrectly.
Having said that, first, a couple of questions for Joseph: a) do you drive, and b) when (if) you drive, do you perceive other vehicles as i) shapes or colours and ii) then as vehicles, or do you ’jump’ (no or almost imperceptible delay) straight to ‘car’ (or truck, or other as appropriate)?
From a ‘problem-solving use of perceptual areas’ perspective (following your link Amanda – interesting read), I do this all the time. My job involves a considerable amount of analysis, and a lot of this happens in perception (I can just look at the problem and ‘know’), especially (but not just) in the area of trend analysis, which is to a considerable degree pattern recognition vs. pattern exceptions. I can often do this very quickly, and without effort – the annoying thing is having to prove the answer and explain how I ‘got there’. I can also often do this with problem solving. A couple of years ago our company introduced a ‘new’ (to us) way of evaluating business results, and sent most of the management team through a course to learn the new model. One of the exercises was a set of ten problems of increasing complexity and difficulty. I went through the list and completed them (correctly, for the record), and then looked around, and everyone else was just starting problem #3. My friend sitting next to me (also on #3) who has an MSc in Psychology, just kept looking over and shaking his head. He explained it as the fact that I had strong problem-solving skills, but I’m not sure if this is correct. From my POV there was not a lot of thought or problem solving involved. For the record, the fact that I was able to quickly solve the problems in no way implies that I understood the concepts behind the new model better than anyone else. There were others who definitely had a stronger grasp of the concepts.
My friend described the same occurrences at other times as ‘compiled knowledge’. As an example, he had studied the differences in problem solving between first and fourth year medical students. First years, when presented with a problem, went down all of the logic paths to derive the answer. Fourth years jumped quickly to the answer because, as he described it, the logic paths were already well worn, streamlined, and ‘compiled’ for efficiency, vs. the uncompiled thought of the first years. In effect, their answers appeared to jump out of perception rather than from higher level thought. I often figured that this explained my thoughts too, although now I’m not sure that the explanation is complete.
Anyway, time to link this together. The reason I asked Joseph the questions above, is that I’m guessing that – like me – he jumps straight to ‘car’. But I’m also guessing that he may have the same problem-solving within perception capabilities. Put the two together and they illustrate through example what I may be incorrectly expressing in terminology.
Perhaps the two sets of processing are related, but I perceive them as distinct (lacking the terminology to clearly explain why). The ‘car’ – if it is within my vision’s area of focus - appears from ‘below the waterline’ (as described in an earlier comment), or probably more accurately, with a millisecond delay in interpretation (which I assume most others experience too), but without any effort. If I want to know more about the car I have to interrogate it, but that also happens very quickly. If it outside of my area of focus it is a shape, but I have still assigned it at minimum a label of ‘moving – get to this quickly’, ‘not moving but important – look here next’ or ‘ignore until/unless time is available’. Sometimes I get the second vs. third categorizations wrong, but I think that evolutionary pressure has honed this ability in all of us. This ability – effortlessly integrating sensory input (described here visually but also including other sensory input too) into meaningful information – is what my daughter may have issues with. Other examples may include understanding where she is in space, integrating tactile information, motor planning, etc. I label this as SI, as having this information ready and available to the brain, and perception as recognizing it into consciousness, even if that recognition is only to realize that more analysis is required.
On the hand, problem solving within ‘perception’ is something I’m also pretty sure that I do. It is also ‘below the waterline’ or an almost effortless connecting of the dots above the waterline. Both this ‘perception’ and SI may be perception of different types, but to me they are different abilities, linked only by the fact that they both appear out of my subconscious without effort. I want to ‘fix’ the latter, because I believe that this is driving my daughter’s disabilities. I also believe that ‘fixing’ this may a) be possible and b) without jeopardizing any abilities she has related to the former, or any innate autistic capabilities. Time will tell.
"Is it just me, or am I the only one who thinks that there may be just an oh so slight difference between being left-handed or gay (the other often used example) vs. being autistic?"
Who wordsmithed this? Deduct part marks for imprecision.
Anyway, I have no disagreement that being gay can be a 'disability' because of societal views. But this disability is, as María Luján states, extrinsic, not intrinsic to the individual. As for left-handedness, there is a small increased risk of injury and accidental death. But again, this risk is due to extrinsic (design) issues. And neither of these 'disabilities' are constant, but change with the environment in which the person finds themselves at any given time.
My daughter cannot talk. No change in societal thinking will render her verbal. For the record, I believe that she will one day be verbal, but given limited resources, we are currently investing our time in PECS to enable her to communicate, rather than on speech therapy (which we 'do' more informally in terms of providing prompting, opportunity, and example rather than 'therapy') since we feel that giving her a 'voice' is more important than making her verbal.
Changes in societal perception may alter the impact of her lack of speech on her well-being, but will not alter the presence or absence of the capability. This one is intrinsic.
Okay... bear with me a bit because I don't think the English language is built for what I'm about to try to do to it.
I think that perceiving things before the point where it gets to 'car' creates abilities that can be totally overshadowed by being essentially stuck in 'car-land'. ('Car-land' is to me a big clunky mess that obscures reality very readily and can be handy for a few tasks such as writing but should not be lived in.)
There are... entire patterns, entire sets of ways that the shapes and stuff move, that can be... known in a certain way. It is more basic than the conceptual patterns you talk about. It is patterns of movement, patterns of shape, patterns of sound, and so forth, in the direct real world.
Those patterns are noticeably obscured to me, when I enter 'car-land'. It's like the resolution lowers on a computer screen. Everything becomes big, clunky, blurred, wrongly shaped, dim. Important, even vital, things that I am normally able to sense about the world become obscured. And when I have spoken to non-autistic people about this, those things are obscured to them nearly all the time with possibly brief gaps. (No, I don't know the total language to describe what I'm talking about.)
So I do most of my interaction with the physical world by sensing and handling patterns of perception rather than sensing and handling more abstractified stuff.
Note by that way that if you take away the comprehension of words, and take away 'car-land', then I am suddenly very aware of things that auties are technically not supposed to be aware of, and that even most non-autistic people aren't as good at as I am by that point. I think a lot of the reason we're not 'supposed' to be aware of it is that we're evaluated in 'car-land' so to speak, by people used to using 'car-land' ways of identifying people.
If I get stuck in 'car-land' which can happen briefly under certain circumstances, then I am stuck in what to me feels like a mental prison.
I am well aware that living in 'car-land' has its benefits for those able to do it (and most of them don't consider it a horrible cage any more than I consider the way I perceive the world a horrible cage, despite how they see the way I perceive the world), and that there is in fact a good reason that most humans live there, but I think there's a good reason I don't.
Kristina at Autism Vox and I have talked over this issue of genetics and autism many times before and this discussion has helped me understand more about what genetics means in the autism community. Thank you.
BTW, I've featured this post at Genetics and Health this week.
Gene Talk #6
It is intrinsic that most left-handed people cannot use right-handed equipment.
It is intrinsic that I cannot use my built-in speech equipment.
I am left-handed and I can't talk. I see little difference except that as a left-hander there is plenty of readily available (if slightly pricier) adaptive equipment for me, and as a non-speaker adaptive equipment is harder to come by. And the other difference is the value put on communication versus the value on doing things right-handed. But I can't do things right-handed any more than I can talk, and both can be conceived of as "inability".
In a society where more kinds of communication were just as acceptable as speech, lacking speech would be little more of an issue than being left-handed is now. It would even be much more possible in such a society for people who merely had a slight preference of typing over speech, to use other modes of communication, just as it is now possible for people who have a slight preference for their left hand over their right to use left-handed equipment if they wished.
Hi Joseph,
Just to clarify, when I say 'car', I don't mean the word car, but the knowledge that the item in question is a car, with all of the implications of that 'fact'. I don't think of the word car, but still know that the one in front of me has slammed on the brakes and must be avoided.
Ballastexistenz
Thank you for your effort to let us know your perceptions. I appreciate this very much because you allow me to understand much much better how an adult autistic perceives the world and why reactions to this world are so difficult to understand if this knowledge is not present- because many times behaviors are result of totally different perceptions than NT have in general, for example.
I consider that social aspects in terms of acceptation and accomodation of differences (socially speaking therefore for example in terms of what is acceptable to do in streets, how is supposed to be in a taxi or how do you behave in a party or how you communicate) are very important and today´s society is very narrow in terms of kinds of communication of range of conducts socially acceptable in social situations- in terms of different answers to different stimulus because of different neurology. If a tantrum- can be understood as an overreaction to a stimulus because of the different perception of the stimulus. and more social education being present about- a world of difference could be done avoiding this stimulus for example. Sometimes is not easy but for me part of the difficulty is the lack of knowledge of the impact of the different perception in the behavioral answer at an individual level. Another part is that the reaction can be so severe that makes very difficult to manage socially speaking.
Well, you clarify me several things. But to present my goal - in terms about why I selected a certain approach for my son- I do think that perception can be sometimes altered by physiologically modulable processes using external intervention- excluding as much as possible drugs and focusing in for example role of nutrition and general health status.
Therefore I wonder how- and please do not consider this that I am talking about you personally; I am presenting a question in general- affects and what is the role of nutritional status in proper functioning of senses? and therefore I return to an original and recurrent question to myself- that obvioulsy I can not answer.
What is the importance of selected, coherent and logical external intervention based in trustable and adequate testing in the improvement of the life quality, for example, making stimuli less difficult to process, avoding overwhelming for example, especially after months or years of intervention? What if the patterns of perception can become more friendly avoiding disconfort or pain? May we consider intrinsic perception that can be changed under external specific intervention- but first must be detected the imbalance to correct- or are they "apparently" intrinsic? Please consider that I think is a difficult question to answer because the supposed change must be assigned without doubt to the external intervention.
Talking about senses, it seems to me that mainly vision and hearing are different in terms of processing , and depending on the person, taste, smell and touch also in autistic people. In my son´s case, hearing and vision used to be very altered. In this sense altered perception must affect ability to learn to speak, beyond the potential capability to do it.
María Luján
Admittedly the definition is a social construct, but according the the WHO, referred to above, disability is "any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being." I'm not sure that flight impairment would qualify?
Yes, I can see, again, that left-handedness has issues, but if the question is posed as above, then assuming one draws the definition loose enough for fair skinned and brown eyed people to be excluded the lefties probably are too.
Does it matter if the disability is extrinsic or intrinsic in origin? I would say yes. In the former, amelioration is an obligation of the external party - internal amelioration becomes potentially an issue of a violation of human rights. In the latter, amelioration can occur intrinsically and/or extrinsically, and denying the party with the disability the right to intrinsic amelioration - if available - is potentially a violation of their human rights. Note that I'm not saying that the person has no right to refuse. Obviously they do if they feel that instrinsic amelioration is not desired (which is a deliberately different choice of words from required, and I'm not suggesting that amelioration in the case of ASD is required). I'm also not suggesting that there is no obligation on the part of the external party. Failure to fulfill this external obligation may also be a violation of human rights.
Hi Joseph
I don't think that's the distinction that matters. Amanda already explained that left-handedness is an intrinsic disability in a sense.
But related to society and how there are a lot of social tools thought for right -handed. Giving the same tools-designed for left-handed individuals-, the concept of disability for left-handedness disapperars. For the person who is left-handed this does not imply a problem IF all the tools for them were going to be available- that they are not.
Also, flight impairment is an intrinsic disability to all humans.
Joseph, we have no wings and our bodies are not designed to therefore this is not an impairment; is physically impossible. The same about living in the sea, under the water, breathing the oxigen from water. Our bodies have not the physical abilities to do this ( we have lungs, prepared for Oxigen gas mixed with nitrogen gas).
What matters there is that we all have it, so it's a non-issue.
It is an issue in the sense that the interpretation of can generate certain decissions on health, personally or socially and I agree with Ian in his post:
"In the former, amelioration is an obligation of the external party - internal amelioration becomes potentially an issue of a violation of human rights. In the latter, amelioration can occur intrinsically and/or extrinsically, and denying the party with the disability the right to intrinsic amelioration - if available - is potentially a violation of their human rights. Note that I'm not saying that the person has no right to refuse. Obviously they do if they feel that instrinsic amelioration is not desired (which is a deliberately different choice of words from required, and I'm not suggesting that amelioration in the case of ASD is required). I'm also not suggesting that there is no obligation on the part of the external party. Failure to fulfill this external obligation may also be a violation of human rights. "
We all have a lot of supposedly similar systems- and in terms of functioning these systems can function different but compensated- and maintain health of not - and therefore we are in a state of non-health.We are all different, even when we can´t fly or live under the water.
MA Luján.
Ian: Any chance of response to the car stuff instead of the assorted hair-splitting we're all having fun with?
Hi Amanda,
Sorry, I've being forced to take a bit of a life break due to force majeur (my wife wants some work out of me), but I'll definitely respond once I get a chance.
One quick thought though, is that there may be some misunderstanding regarding the 'car' analogy (Joseph seemed to have the same interpretation you have, so the error is probably in my lack of clarity). I'm not saying that I automatically actually label the car as such (there's no words involved, except as a conscious act). Instead, I automatically perceive a car as the specific car that it is, not as an abstract but as a real life tangible item.
Hi Joseph
The problem I have with your analogy that the presence of wings in a man implies a different species-probably because of the needed genetic differences to make viable wings in Hawk Men.
We are always talking here of human beings with polymorphisms or changes in certain portions of a gene (partial or total) but no other species.
I think that the point intrinsic/extrinsic is similar to innate/adquired. I do think that I will not change the innate if I intervene on the adquired conditions that can be manifested as medical problems.
María Luján
Hi gang,
I just wanted to pop in and apologize for not responding to some of the above comments. I've been a little busy being a dad this weekend, and I'm sure you all realize that's a larger priority in my life than blogging. I have been following the conversation, and I wanted to say thanks to all of you.
ian: It was your definition that I was responding to. It does take a certain level of abstraction to get as far as you do with 'car', believe it or not, whether or not you use words to do it with. The stuff I'm talking about is still at the level of perceiving things as patterns of lines and shapes and sounds and so forth. Words are just one easy example, they are not the whole of this difference by a long shot.
Wade, you said:
If you are defining "acceptance" as "embracing" the condition of autism, then I plead guilty.
I think you're sort of on to something here, but there's potentially a little bit of black and white, where efficacy of a shared definition is probably somewhere in the middle. "Embracing" can connote affection beyond acceptance. Acceptance of something doesn't require that you like everything about that something. As an example you can accept a spouse with a few annoying habits. You might even have quite the successful marriage if you do not pursue change of those habits they can't or won't change. Acceptance is agreement to the terms, not trying to change them later, and living up to that agreement.
Once you get that part down, you can step in as parent and "embrace" your children (autistic or nt).
by the way, in regards to a couple of the analogies above..the word verification for this comment was fatwig
Hi Amanda,
Ok, I’m back.
Before commenting on carland, I just want to cover something off that I missed earlier, especially in light of your statement (presumably not at the time referring to me): "lest what I say be confused or quoted out of context again."
You wrote:
"One, I didn't say they found that autistics have no "higher-order" thought, only that some of our problem-solving is coming from so-called "perceptual" processes and that in autistics "perceptual" processes have far more autonomy from "higher-order thought" than they do in non-autistic people."
Just for clarity, at no point did I accuse you of saying that autistics have no ‘higher-order’ thought. What I did was quote the authors of 'RPM vs. Weschler' in their thought that rather than the view that autistics had intact or enhanced low level processing and high level processing deficits did not explain RPM performance, that low level processing is not enough to perform the tests successfully, which clearly suggests that higher order processing must also be involved. I put this point in contrast to your statement that:
"One of the new things that's coming out of this research is the very definition of "thought" is being altered. Some of the best autistic thought is more heavily slanted towards what cognitive scientists have with a great deal of bias called "mere perception" as opposed to "higher-order thought". For instance, pattern-matching is apparently not considered "thought" despite the fact that many of us use it for everything from using and understanding language to perceiving our environments. Your saying it's not real thought is just more continuation of the bias."
I still believe that the two statements are at odds, with the latter suggesting that much thought is carried out at the level of perception, using pattern matching as an example, while the former claims that perception alone is not enough of an explanation for autistic performance, with reference to RPM, which heavily associated with pattern matching. But again, at no point did I accuse you of saying that autistics have no ‘higher-order’ thought. You are the second-last person I would ever accuse of such a statement.
On to carland.
I obviously cannot dispute how you perceive the world inside your head, any more than you can dispute how I perceive things in my head. I also would not dispute that "perceiving things before the point where it gets to ‘car’ creates abilities that can be totally overshadowed by being essentially stuck in ‘car-land’".
In my ‘car’ example I’m trying to convey that as soon as I see a car I recognize that the object I’m looking at is a car (as distinct from a house, tree, rock, etc. or a shape, pattern, etc. It is not an abstract car but the recognition that the object at that time and place that I may need to act on has been perceived, so that this information can be acted upon. All of this is without the need for language. (Language has occasionally been used to refer to other drivers, but that is a separate matter.)
What I’m trying to do is contrast it to your words here:
"And then doing certain things is going to cause different rates of spoon-drainage. If I want to hear a voice as just background equivalent to the sound of water flowing, it’s going to cost fewer spoons than if I want to hear a voice as words, and it’s going to cost even more spoons to discern what the words actually are, still more to put them in context as meaning something, and so forth. (And it also begins to involve more and more spoons of different colors, in that case.)
"As far as the spoon bank goes, a frequent usage of it is to trade off between moving and perceiving. My brain can exchange all my movement spoons to allow me to perceive more about my surroundings. This renders me totally incapable of voluntary movement until and unless other spoons can take their place. Sometimes it gets exchanged back, and suddenly there is little to no abstraction and little to no understanding of my surroundings while my body is walking into walls or something. And around and around all that goes."
My point is in effect that I can seamlessly recognize in my subconscious that an item is a car and when that appears as perception I can take action based on it, because of my SI processing delivering that information into perception in a form that is usable to me (which is not to suggest that your version is not usable to you). I was attempting to define my capabilities to illustrate where my daughter may have what I would consider difficulties:
"This ability – effortlessly integrating sensory input (described here visually but also including other sensory input too) into meaningful information – is what my daughter may have issues with. Other examples may include understanding where she is in space, integrating tactile information, motor planning, etc. I label this as SI, as having this information ready and available to the brain, and perception as recognizing it into consciousness, even if that recognition is only to realize that more analysis is required."
So, I have no dispute that you perceive the world differently than I do. I also do not doubt that your SI capabilities deliver info into perception in a different manner to mine.
What I would question is 1) whether your experience is representative of all autistics, and 2) whether resolving my daughter’s SI issues would render her any less autistic.
On question 1, I’m guessing that driving is not an option for you, recognizing that you may not have any interest in driving, regardless of theoretical capability. In contrast, Joseph can drive and claims to be a good driver (his wife’s objections notwithstanding). Since Joseph is also on the spectrum, apparently his SI capabilities as someone on the spectrum are operating at a level compatible with the requirements for driving. They may operate differently from mine, or from Wade’s (we all three may differ in this regard), but the capability exists in all of us (assuming that Wade drives too). As such, it is reasonable to assume that either a) Joseph is not on the spectrum (and I’m not suggesting this, it is only stated here for logical completeness), b) Joseph cannot drive, his comments notwithstanding (see first point, re: logical completeness), c) Joseph has not yet driven enough to suffer the consequences of his heretofore undetected inability to drive (time will tell), or d) SI capabilities sufficient for driving are not at odds with being on the spectrum. I’m assuming too that Joseph is not the only person on the spectrum who can drive (I’ll exclude myself because we’re not yet sure if I’m the genuine article). I’ve seen Temple Grandin drive, albeit on TV, and she is also still alive and autistic, and I would presume ‘more’ autistic than Joseph. Presumably there are others too. This would suggest that there are different levels of capability that are consistent with being autistic.
Following 1d), if Joseph and Temple Grandin are able to possess SI capabilities that are compatible with driving, and still be on the spectrum and autistic in thought, then I would also question any assumption that resolving my daughter’s SI issues to achieve this type of SI capability is incompatible with her being or remaining autistic in thought.
I think the real issue is whether this will change who my daughter (I refer to her in my blog as the Bear) is as a person. The answer is that it may. Experience shapes people, and if the Bear perceives her world differently and consequently acts upon it differently, she may build a set of experiences different from those that she might otherwise have had. But does this make her any less authentic as a person? I would suggest not.
At one time I had an opportunity to take a significantly different educational route than the one I ultimately chose. If I had followed this alternate path I would have acquired a different citizenship (if for no other reason than to change the tuition requirements), lived in a different country, had a different career, probably married a different person (I was already going out with my wife when I made the choice – she probably would not have followed me abroad), and therefore have had a different family. The change in direction would have been almost total in completeness. Would I have been a different person than I am today? Yes. Would this different Ian be any less valid or authentic than the current version?
To be clear, there's no assumption above that Wade is on the spectrum, only an assumption that he drives, and therefore possesses the SI capabilities required to do so.
Like Joseph, I am an excellent driver. :-)
And there's no need to clarify any assumptions one way or the other about being on the spectrum. As ASD, at the very least, requires some genetic predisposition, it is certainly not inconceivable that any parent of an autistic child may himself or herself be on the spectrum. Although I I don't see clinical indications of ASD in myself, I'm not terribly concerned over speculation about that and I would not feel ashamed if I was on the spectrum.
The change in direction would have been almost total in completeness. Would I have been a different person than I am today? Yes. Would this different Ian be any less valid or authentic than the current version?
Exactly the point Ian. Back to the pre-family Ian. Nobody ever said (well maybe they did) that "Ian, you've got to be cured of that alternate path possibility. You must stay, get married, and be educated here, otherwise you'll be a burden on society. Both paths provided equality acceptance for you.
Hi DoC,
I'm not sure that both - and by extrapolation all - paths provide equal acceptance. Both paths are equally 'me', but it doesn't mean that each path is equally acceptable. What if path B resulted in me being a drug dealer? It would (unfortunately) be equally 'me', but I'm not sure it would be equally acceptable.
Having said that, I'm not disagreeing with your conclusion, that both paths (which I'm assuming you are using as surrogates for a different set of choices) are equally valid.
Joseph wrote:
"This may be in the realm of near impossibility. (Or in other words, is this resolving of SI issues more than theoretical?)"
I'm not sure why? SI continues to develop in a person throughout their entire life as they mature and interact with their environment. Nutritional imbalances, as an example, have been shown to impact neurological development (e.g. Hibbeln and Golding study), so presumably fixing these imbalances may have a positive impact. Why is this near impossible?
Regarding the driving, that is pretty much the way I see it too. As I've said above, I don't label each car, I just seem to know what it is. I would like to do my utmost to (safely) ensure that my daughter is capable of a similar level of SI.
I am aware that being able to do some things I can't do including in the realm of perception is not at odds with being autistic. What I am saying is that (A), you have to pay attention to tradeoffs involved in "increasing certain abilities", you cannot ignore them or pretend they must not exist or are not significant or relevant to think about, and "becoming totally non-autistic" is not the only bad thing that could happen to a person based on moving these things around indiscriminately and is in fact not all that I was talking about, and (B), I have no desire to be changed into another sort of autistic person any more than I have desire to be changed into a non-autistic person.
Basically, I'm saying these things are attached. You have to pay attention to the fact that they're attached. If you move something, something else moves. When I said "Be careful what you pull on something, it's attached to something else probably," I did not say "Oh it will make you non-autistic and therefore anyone who has these skills and remains autistic is disproof of what I say," I said, "It will change things, and you can't know what ahead of time and you should never pretend that it's not attached. You have to think about these things." You still do. You propose that, for instance, making me like you would not entail a loss. I disagree.
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Curing autism is not about altering anyone. It is about allowing a child to realize his potential.
When some people refuse to believe that autism is a biochemical injury and is not genetic, discussion is useless.
If my son was born with the potential to be a left-handed pitcher and I don't address the injury that prevents him from developing any interest in baseball, I have failed him. Autism prevents growth. Personalities grow. Curing autism will change a person because it gives that person an opportunity to grow.
Autistics who claim they don't want to change are refusing to face their fears. Sometimes I'd like to just be left alone and not have to be responsible for anything. Part of being an adult is dealing with changes and responsibilities. Becoming a parent changed me. Serving in the military changed me. Lots of experiences changed me. None of those changes killed a part of me. It was just growth.
The fear of becoming normal is simply an irrational fear. It's also a cop out. Wanting to remain autistic is admitting defeat and giving up on oneself. It is not rational. It's like my 5 year old saying she hates hamburgers before she ever takes a bite out of one.
Hi Amanada,
Yes, I get that certain things may be attached. I also understand that you have no desire to be changed into a different person. To be clear, I am also not suggesting that "making me like you would not entail a loss."
What I am saying is that there are variations in SI capabilities in those on the spectrum, and that the presence or absence of certain SI capabilities does not make one necessarily less a part of the spectrum. I would certainly agree that changes in SI capabilities can lead to different other capabilities and different experiences.
As in my example about the possibility of taking a totally different path in life, what I am arguing is that different paths are also valid. My daughter with a different set of capabilities and experiences can still be true to herself.
I would suggest that a fundamental difference between you and my daughter is that you, as a 25 year old, are already a fully self-actualized person with a set of both capabilities and life experiences that have helped shape who you are. My daughter has just turned three, and is in the process of becoming the person she will ultimately be. There are a range of options open to her based on her potential paths and developing capabilities, and they would all be equally valid expressions of who she 'is/could be'.
This is not to say that life past a certain point is static. It is to say that at a certain point an individual makes choices based on who they have become to that point. They may make choices that others in different circumstances would not make, but that definitely does not make the choices wrong. But those choices that are right for them and their experiences and sense of self are not necessarily right for others in the process of self-actualizing, who's life is still more 'potential' than 'actual' in outcome.
That makes sense.
I just worry a lot because of the discrepancy between the skills that I have needed to gain to become who I was meant to be, and the skills people saw me as needing in order to become who I was meant to be.
At times they have been in such total opposition that losing skills I vitally needed was considered "growth" and gaining skills I vitally needed was considered "regression".
Which is why I really urge caution when judging what might be needed, for another person. I don't think I could ever totally say what skills another person might need, and even in helping them acquire certain skills in certain ways, I would not be able to definitively ever say I was helping them with the right ones. And I see too often autism sort of simplistically cut up into "skills" and "deficits" with no attachment between the two.
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